1969 to 2010

I am Bob, Karen's husband of nearly twenty years (our 20th anniversary was only a few days after her death). I am writing up Karen's history so that others may learn from the things we did right and the things we did wrong during her twenty-four year long battle with Chronic Pain. This was a battle she ultimately lost through her suicide, when she could no longer take the pain from Intracranial Hypotension, caused by leaking Cerebrospinal Fluid (CSF).

What follows is mostly her own words that I've taken from emails and 9,437 Facebook private messages.

I have removed items that are not relevant to her health and items that would identify who she is corresponding with to protect their identity (many are distraught that they did not know how bad Karen was and they did not help her. As you will see you had no way to know). chronic_pain_smile.jpg

My comments are in “[]”.


Glossary

  • BP = Blood Patch.
  • ER = In context of medication means Extended Release.
  • FB = Face Burn or Facebook, depending on context.
  • HP = High Pressure.
  • LP = Low Pressure or Lumbar Puncture, depending on the context.
  • OP = Opening Pressure.
  • RA = Rheumatoid Arthritis.

What are Blood Patches?

As Blood Patches play a significant roll in the treatment of Cerebrospinal Fluid Leaks, it is a good idea to understand what they are about. This is the simplistic version: blood does not belong where it is put. The immune system sees this foreign body and attacks it, that in turn forms scar tissue at that site, and it is the scar tissue that seals the leak.

2014/06/22 13:18 · bpaddock

2014/06/15 01:30 · bpaddock

[Karen's story starts.]

September 3rd, 1969.

I was born. Nearly a month over due.

1974, Age Four.

I jumped off a stage at the local community building. I broke my right leg. In my four year old mind I was afraid that my parents would be mean to me if they found out so I hid the pain. My sister Debbie realized something was wrong, after four days, and told parents.

Also around this age I fell off a swing. It hurt.

[Even at this young age Karen dealt with hiding pain from people. Falling off the swing will cause her issues later in life.]

June 5th, 1987.

Today I graduated high school, in the 'High Scholastic Standing' range of 3.00 to 3.60 GPA. Looking forward to life…

October 20, 1989.

I was in a car accident today. I was on a one way street in Clarion about to turn left onto a two way street, when someone tried to pass me on the right. They hit the driver side back wheel. Car is slightly bent, looks like it will be okay. I don't think I'm hurt.

[I don't know that there is any significance to this?: My father died on October 20th many years later.]


Sometime in the early 90's:

[Karen always made notes to herself to discuss with the doctor. From the $8000 amount this is very near her accident. We have probably spent a million dollars or more when you account for the insurance and even now a year after her death when I'm adding this, the expenses are still coming in. :-(]


Friday Oct 22, 2010 10:21 pm

I will give the condensed version here. I am sure I will forget something.

[As far as I know Karen wrote this message to herself in 2010, not sure why she did it then. I found it after her death.]

A minor car accident in October of 1989 started daily chronic neck pain and headaches. I did not have pain prior to that but I believe my underlying issue started when I was a teenager with scoliosis.

[Karen did not think she was injured at the time of the accident. It took many days for the concussion to come on. Not clear when the leaking issues may have started. She hit the left side of her head on the door jam and had a sideways whiplash, something that there is very little study on.

Things she heard with her ears did not stick to her brain very well. She compensated with her eyes. Things she saw, like reading, she remembered to never be forgotten. If it was important I sent her messages so she would see them with her eyes over FidoNet, before Internet, then over email on Internet. This makes vision problems described later more significant than it would seem.]

The Traumatic Brain Injury (TBI) also causes obsessiveness, which she turned to advantage of obsessively studying anything that caught her interest. Mostly she studied medical texts, insurance, and dog obedience training. See her reading list.]

1989 to 1994 we saw about 35 different doctors in the area of Pittsburgh, Cleveland and Akron. Most said there was nothing wrong with her, a few to their credit said they had no idea what was wrong with her. After doctor 35 we gave up on doctors.

[Due to Karen's hearing issue she learned to make typed notes to take to doctors appointments. We also learned to take three copies. One for us to hang on to during the meeting with the doctor, so we would not forget something. One to give to the nurse that would usually be seen before the doctor for the records. Lastly one copy we put into the hands of the doctor directly. Karen discovered that some doctors never looked at the one given to the nurse!]

Also went to pain clinic in Pittsburgh for evaluation in this time frame. At the start of the appointment they insisted she write long hand on to their form everything she had neatly typed on to the form she had gotten to prior to the appointment. This had her in tears. By the end of the day it became clear to us this place had no interest in Karen as a person, they were only interested in her insurance money! Never went back there. Found a pain clinic in Meadville that Karen stayed with for 24 years. She found there that cryogenic nerve freezes of the Occipital Nerve relieved some of the neck pain. Chemical/Drug injections did nothing for this pain. Karen continues:]

… my husband was supportive and helpful, if it was not for him during this time … I would have killed myself over unrelieved pain

I exercised for a few sporadic years prior to 1999. 1999 is the year I started to faithfully do water exercise. It helps with depression but not enough. I have been on many antidepressants and they do not offer significant relief.


In 2003 I accidentally cut my left leg down to the bone just below my knee.

[A dish broke. Never throw broken glass into a garbage bag, put it in a box! Bag brushed her leg when she was taking it out. I have added her medical records for this event in the hopes they help someone: Karen's medical records from 2003 when she was given Levaquin, and got 'floxed' NEVER TAKE THIS CRAP OR THE RELATED DRUGS LIKE Cipro.]

I immediately went to the ER. After I finished the antibiotics I received at the ER, my leg became infected. My PCP gave me another prescription for antibiotics. The infection improved, but after I finished those antibiotics my leg felt infected but looked fine. My PCP gave me a lecture that I did not need more antibiotics as that would contribute resistance. A few days after this conversation with my PCP, my leg became an angry red, and was dead weight. The pain was HORRID! I went to the ER and was diagnosed with cellulitis. Several weeks of antibiotics cleared up the infection.

Six months after I thought the infection cleared, my left wrist started to hurt. My PCP diagnosed tendonitis

[Caused by the drugs above, see: fluoroquinolones. Cipro and Levaquin should be taken off the market, and the FDA knows it! Levaquin made it so she could not walk from the tendinitis that it caused.

She spent a year crawling around the house on this construction, skate board like thing so her ankles would heal:

skateboard.jpg All of this crap is the result of these #)$*#)$*# drugs!:

, ,

, ,

]

and prescribed physical therapy. During therapy my right wrist started to hurt, which was weird because the PT was not working on that wrist. Then the pain traveled up to both elbows, and shoulders then both knees start to hurt. At this point I saw a rheumatologist. He diagnosed me with Rheumatoid Arthritis. This rheumy got the RA somewhat controlled. Three years ago, I developed tendonitis in both feet. My pain was a twenty on a scale of 1 to 10. I tried working with my Rheumy for about 18 months with this. He was a being a jerk so I switched rhematologists last year. I have to drive almost two hours one way to the new Rheumy, but its worth it. The new rheumy changed some of my meds (not pain medication) and got this multi-year RA flare controlled which stopped a lot of the pain. The tendons in my feet are permanently damaged from being inflamed for that long. I can walk, just not very far. The new Rheumy diagnosed me with a variant of RA that attacks tendons [Caused by the drugs above]. My RA does not attack my joints.

[

We cleaned up what we ate, drank and got artificial chemicals like Fluoride in toothpaste, chemical based soap, shampoos, cleaning products (Amazing what White Vinegar will clean) out of the house, went with natural organics such as Hemp based soaps and cooking oils. The Rheumatoid Arthritis (RA) and Lupus symptoms went way over time, and did not return. The issue really was Multiple Chemical Sensitivities!

Overlook NOTHING in your environment nor the products you put in or on your body (Hair Coloring or getting a Perm for example). Consider things like air fresheners. Good smelling stuff can be quite toxic just as the reverse might be true.

2014/07/13 21:37 · bpaddock

There was nothing that could be done for the tendon damage caused by the drug! :-( ]

This past June [2010] a tendon in my left index finger spontaneously dislocated. My rheumy prescribed hand therapy and a splint. During hand therapy both knees became painful and inflamed. I developed the general overall sickish feeling I have during a flare. I saw my Rheumy again. I received three kenalog injections. Kenalog stopped the underlying flare. Bilateral knee tendonitis established itself prior to the kenalog injections. This is nearly healed now. If not for my new rheumy, that tendonitis would have become chronic and spread to additional areas. The old rheumy would not have done anything to help me because my blood work numbers were normal. Whereas, the new rheumy assured me that they treat patients as people, not as the numbers on you blood work.

… Those of you that had tendonitis know how bad that pain is, and that you MUST rest your tendons or they will not heal properly. Tendons take forever to heal because they do not have a good blood supply. I have to take care of all my daily activities and this takes me all day whether or not my tendons are inflamed.

[

“…Commonly used FQs include levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin) and gemifloxacin (Factive).

For many people, the concept of being “floxed” is difficult to comprehend. “The reaction is mostly disbelief,” says Girard. “They have been taking antibiotics their whole life and never had anything like that. Or they have taken Cipro and they have arthritis or depression but don’t understand it could be from the Cipro. But the reaction is mostly disbelief - until it happens to you.”

Fluoroquinolones, or more accurately their precursors, were developed as a chemotherapy drug. When it was discovered that the compound could actually kill bacteria, they were reformulated and marketed as antibiotics. However, they are far from penicillin.

Simply put, fluoroquinolones work by entering the bacteria’s DNA and preventing it from reproducing. However, they do not work only on bacterial DNA. They actually penetrate all the cells in the body. It’s believed that the tendons rupture because the FQs confuse the DNA, and the cells literally get mixed up.

“Tendons will be rebuilding wrong, and rebuilding wrong until one day you overextend them and they snap. People get it in their shoulder, rotator cuff, hands, wrist,” adds Girard. … ” – Mark Girard

]


I have no friends. I wish there was a local chronic pain support group were I could physically talk with others in chronic pain. I do water exercise at the Y, but I still feel very lonely and depressed.

Throughout the years, I have never been prescribed any pain meds stronger than darvecet and Vicodin which do practically nothing for me.

[Having high power drugs would change later, however the stronger ones only made her sick or have a even worse headache. Many narcotics lower CSF pressure, which you don't want when your pressure is already to low! Low CSF pressure causes pseudo Chiari, as shown in the drawing. Things are getting yanked on that were never meant to be yanked on! This causes the excruciating headache.]

{Jump to year: 1969 to 2010, 2011 2012 2013 2014}


2011

Wednesday, March 2, 2011 at 9:44pm EST

If you would not mind, can you tell me how you were diagnosed with lupus?

What symptoms did you have when diagnosed? How long from your first symptom until diagnosis?

What symptoms do you currently have? And how you manage the symptoms? Sorry for these questions.

After a major antibiotic resistant infection in 2003, I developed flares where my body systemically attacks my tendons. One of the medications I WAS on for my diagnosis of Rheumatoid Arthritis is Remicade.

In hind site one of the known side effects is elevated dsDNA. Well, I began getting weird symptoms on the medication, and the local rheumatologist increased the medication with no blood test. I continued to get worse.

About a year after this, I switched rheumatologists and had my dsDNA checked. Elevated, along with some other values consistent for lupus. I have been off Remicade for three years now.

My values have came back into the normal range, and so far have stayed there.. I have no more weird symptoms.

My tendons still become regularly inflamed. This inflammation was the reason for starting Remicade in the first place. I have neck and back pain from a congenital reason unrelated to the rest of this post for most of my life.

March 2nd, 2011 at 10:36am

I am the author of the following:

Regardless of the cause of chronic pain, certain themes emerge. Chronic pain affects the physical, mental, emotional, and spiritual aspects of ones life. Chronic unrelieved pain causes impaired activities of daily living, changes in mood, decreased involvement in social activities, impairs function, leads to depression, anxiety, causes feelings of hopelessness and despair, and can result in suicidal behavior.

You learn who are your true friends. Many people are supportive in the beginning. As time goes on, most of those people reject you. Only true friends last.

Chronic unrelieved pain steals your future, your ability to hold a job, and your health insurance (if tied to your job.)

People that have not experienced severe unrelenting pain for months or years expect you to suck it up and continue your normal daily activities.

Chronic pain makes you feel alone. Like no one understands how much pain you are in.

Karen Paddock

[Sadly prophetic about suicide. – Hubby :-(]

2014/06/04 10:39

March 10, 2011 at 5:04pm EST

From reading your wall, you are a very positive person. How do you stay so positive in your situation? I struggle with staying positive.

Wednesday, April 6, 2011 at 9:59am EDT

I had the flu in February with much dry coughing. It appeared to be getting better than got worse mid-last month. I went to the doctor and was given an anti-biotic. My head cleared up and the cough lessened. The cough is increasing in frequency again. My chest was clear at the rheumatologist yesterday. He gave me an injection of Kenalog thinking maybe their is some inflammation in my head causing the cough. If I cannot get this dry cough that is resistant to cough medicine to go away, I will need to have my lungs checked. My Mom has advanced pulmonary fibrosis (scarring of the lungs) which ultimately causes death. One of the early symptoms of a dry cough resistant to cough medicine.

[It is at times like this I miss Karen the most. I had no memory of us having a cat in the house. Karen would have remembered the exact details. :-(

Nick had hip dysplasia, so Karen got him a treadmill to keep him exercised (we did not get one when I wanted one years earlier, go figure). At times Nick would ask to get on the treadmill. We thought we'd burn off some of his high energy levels. We discovered we were building up his endurance!]

Wednesday, May 18, 2011 at 3:42am EDT

With the vets help, Nick [our Australian Shepherd we raised from a puppy. He was a very strong dog, required a strong leash, this becomes significant at the end] passed away last night. He had a really bad day yesterday. I cried all night last night and yesterday. The next step was subcutaneous fluids, which with his temperament, age and arthritis, was not a viable option. He had kidney disease.

Thursday, May 19, 2011 at 10:41am EDT

Thank you for your support. Right now, all I can think of is what he looked like. We kept his weight around 40-45 pounds. Although I do not know his weight on Tuesday, it was less, much less. He lost a lot of weight toward the end. His shiny, smooth, pretty merle coat turned unkempt. It didn't matter whether I bathed or furminated him. He was very subdued at the car and vets office, and not his normal, happy, excited self. We stayed home on Tuesday. We spent all day doing activities with him that he enjoyed when he did not need a rest. On Tuesday, Bob was supposed to be in Cleveland for a seminar, and I had plans. It was more important that he did not spend his last day at home alone. Garth spent most of the evening last night looking for his buddy.. How do I tell another dog that his friend will not be back? My spirit died with him. [How do I tell Garth 'Mommy' will not be back? Ten months later he is still looking for her. :-(]

Rainbow Bridge

karen_nick_diamond_rainbowbridge.jpg

Just this side of heaven is a place called Rainbow Bridge.

When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge. There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable. All the animals who had been ill and old are restored to health and vigor. Those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by. The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind.

They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent. His eager body quivers. Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster.

You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again. The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together….

Author unknown…

2014/06/22 14:03

Saturday, June 11, 2011 at 9:54pm EDT

I developed another tendonitis in my ankle, so I will be dealing with this most of the summer. I get tendonitis in multiple sites.

[She spent a year crawling around the house on a skate board link thing so she would keep the wight off her tendons so they would heal.]

Friday, June 17, 2011 at 9:09am EDT

I wish there was a machine they could hook us up to, that showed the amount of pain we have. Then maybe pain would be adequately treated!!!!!! [Why can't we figure out how to do this? There is no objective test that will show that you are hungry.]

Thursday, November 24, 2011 at 8:29pm EST

My ankles had flared a bit again last week. They seem to be calming down again. I am considering getting a scooter and lift for my van. My physical therapist thinks this is a good idea for my condition. Do you have a scooter? If you did, maybe next year we could go for a *walk* on the bike trail together.

Thursday, December 29, 2011 at 6:36pm EST

You will mourn you dog for a very long time. He was a member of your family that was suddenly taken from you. Eight years ago this past November Diamond [our first Australian Shepherd] passed away. I still cry if I think of her much. Nick past away this past spring. I have been feeling very depressed lately. Going out and about among people makes me feel better. I need to do that more often, but I do not know where to go or what to do because of my physical limitations. I get to the Y 2-3 times a week, get groceries, go to my doctors appointments, and a few other places on a regular basis. The long hours of being alone at home are what depress me. How do you deal with not being able to get out often?

{Jump to year: 1969 to 2010, 2011 2012 2013 2014}


2014/06/08 23:22 · 0 Comments

2012

Friday, January 20, 2012 at 6:53am EST

I have not been home consistently for a phone call because of various medical appointments. I am starting to see a speech therapist next week for this throat issue that I have been having since the flu last February.

Sunday, February 19, 2012 at 10:08pm EST

I felt myself beginning a flare of multiple site tendonitis again. I went to the doctor, he was going to prescribe more PT. I told him that I had 8 scripts since June 2010, and many more before that. I still do those exercises most days. He gave me a prescription for a muscle relaxer, Baclofen which as stopped the flare. I do not feel like I am developing tendonitis all because of that medication. My neck pain and headache, which are a different kind of pain are still there. Baclofen did not change that.

Sunday, February 19, 2012 at 10:12pm EST

[Hand held] Ultrasound does help. Relaxing the muscles helps, too. I have had tendonitis so much that I know what it feels like in the very early stage which is when I quickly got to the doctor and he gave me the muscle relaxer.

Thursday, April 5, 2012 at 8:53pm EDT

The Rainbow Bridge Poem:

Just this side of heaven is a place called Rainbow Bridge. When an animal dies that has been especially close to someone here, that pet goes to Rainbow Bridge.

There are meadows and hills for all of our special friends so they can run and play together. There is plenty of food, water and sunshine, and our friends are warm and comfortable. All the animals who had been ill and old are restored to health and vigor; those who were hurt or maimed are made whole and strong again, just as we remember them in our dreams of days and times gone by.

The animals are happy and content, except for one small thing; they each miss someone very special to them, who had to be left behind. They all run and play together, but the day comes when one suddenly stops and looks into the distance. His bright eyes are intent; His eager body quivers.

Suddenly he begins to run from the group, flying over the green grass, his legs carrying him faster and faster. You have been spotted, and when you and your special friend finally meet, you cling together in joyous reunion, never to be parted again.

The happy kisses rain upon your face; your hands again caress the beloved head, and you look once more into the trusting eyes of your pet, so long gone from your life but never absent from your heart.

Then you cross Rainbow Bridge together…. Author unknown…

[Karen I'll meet you, Diamond and Nick and probably Garth by then, on the other side of Rainbow Bridge… Right now wishing it was soon, yet there are things that need done to help those you've left behind..]

Thursday, April 19, 2012 at 6:49am EDT

I do not think that I will go to the Y today because I have irritated my foot from walking in the yard too much.

Wednesday, May 16, 2012 at 12:16pm EDT

I will not be at the Y tomorrow. I am going to go to the doctor for my chronic headache.

[Karen had discovered the “Highfield Open MRI” south of Pittsburgh could do a 'standing MRI' http://www.highfieldcare.com/mri.html , the position that she always had the most pain in. Why do tests in positions that do not have the symptoms? That makes no sense. She convinced one of the local doctors, not sure which one, to order the test. They did not think she needed it, but knew she would get it done one way or the other so they ordered the test.]

Thursday, May 17, 2012 at 6:58pm EDT

I am doing so so. I am off my RA meds, including prendisone, but I still take several other medications. Right now my ankles, especially my left one is hurting a lot. I think it would hurt just as much if I was on prednisone. I do not think prednisone makes a difference for me. Yes, I am going to the Y.

Thursday, May 17, 2012 at 7:03pm EDT

My depression is from the pain I feel, too. I think sometimes, that if we do not fit the typical symptoms that doctors learned about in medical school, that they blame our problems on us. Like they think it is all our fault.

Thursday, May 17, 2012 at 7:06pm EDT

Yes, I think he is. Dr. Makarowski is real nice about it. I just think some of the other doctors that I see blame me for my pain. My pain is real, no one would put themself through 23 years of the crap that I have lived with if they could help it.

Thursday, May 17, 2012 at 7:14pm EDT

The isolation from not being able to go away increases depression. I have personal experience with that! Like the saying I shared on my FB page today, “You Will Never Truely Understand Something Until It Actually Happens To You”. I decided to hold of on getting an electric scooter. I may do it sometime, I do not want to do it right now.

Thursday, May 17, 2012 at 7:25pm EDT

I understand your prednisone predicament. I stopped taking it two weeks ago this past Tuesday, and have lost 6 pounds so far.

Wednesday, May 23, 2012 at 4:19pm EDT

Sorry about today when you called. I was leaving the house. As for my chronic headaches, the MRI of my brain is normal :-(

[At this point in studying MRI she came across something called Chiari Malformation { http://www.conquerchiari.org and http://www.chiarifund.org } and found a neurosurgeon in Eire that dealt with it. {Tip: When you go to the doctor always ask about where to park!} She again fought for a referral and got it. Based on the standing MRI he said she did not meet the 5mm Chiari level to have that. This doctor said her symptoms sounded like a CSF Leak and recommend that we contact a doctor Schievink in LA. To my knowledge this was the first she had ever heard of a CSF Leak but I am not sure, anyone know? She started to obsessively study anything she could get her hands on about leaks. She was *excited* that she found something that, after 22 years, matched her symptoms!

She wrote off the idea of seeing Dr. Schievink as she did not think she could handle the long travel. She found Dr. Gray was within a ten hour drive. This is what she wrote, as she again fights for a referral, still excited at long last finding what was causing her problem:


July 2nd 2012

This note something for [local doctor] to read prior to sending the referral.

A little background on Dr. Linda Gray-Leithe, the doctor at Duke that I am interested in visiting:

  • She is a Neuroradiologist/Interventional Radiologist.
  • What is not on the webpage is that she has a special interest in chronic postural headaches with potential CSF leaks.

I would like it if my postural or orthostatic headache is the primary reason for my referral, (although she may be able to help with the other issues.) I want a new point of view on a chronic problem by someone that sees issues similar to mine more than the average physician does.

My headache is my primary motivation because twice a week massages by [local massage person] M.S.. P.E.S. reduce my pain everywhere, including neck pain, but my postural, or orthostatic headache is unresponsive. If my headaches were purely muscular skeletal, her massages would reduce the pain temporarily. Massage does not. Muscle relaxers do not.


Sunday, July 29th 2012

On Sunday July 15th 2012 Linda Leithe, M.D. wrote:

I will look for those CDs as soon as I get back to the hospital..I
have been gone this past week and will be at a meeting this next
week! I look forward to talking to you and seeing you! I took care
of a patient who had had headaches since she was 5 yo and I saw her
at 72 and got her better…so don't despair and let's see what we
might be able to do!

Your life sounds hectic.

Let me know when you find the CD's.

If you do not have time to find them, my husband fixed the problem with the same CD's on the website…

I do not want to keep this problem until I'm 72, so I hope I can see you sooner than that. :-) Actually I hope we can get together before the weather turns bad this winter.

Looking forward to meeting you in person. Let me know what other information you might need from me, please.

Wednesday, August 15, 2012 at 9:40am EDT

I will call you in the morning to let you know how I am feeling, and if I have enough energy to go to Fryburg. My husband brought a cold home from work last week and gave it to me over the weekend. Nice of him, wasn't it?:-( Monday and Tuesday I ran a fever and had no energy. I want to go, but I do not want to give this crap to you or [other person] either. I have an appointment on September 10th at Duke University in North Carolina for this positional headache that I have had for years. I have a severe headache when I am upright that goes away when I lie down. I will probably be in NC most of that week.

Tuesday, August 28, 2012 at 5:34pm EDT

I am going to North Carolina for my chronic headache that I have when I am upright that goes away within minutes of lying down, only to come back when I am up. I am going down there, because that is the closest doctor that I can find who BELIEVES the patient, and will do testing, and possibly treat the problem. I will not have any vacation when there, as I won't be allowed to do much of anything. I do not know anybody down there anyways.

August 29, 2012 at 5:58pm EDT

My husband had a tooth pulled today, and I had to go with him to drive home. He is such a baby at the dentist and has to have sedation, not only Novocaine. [I was hurt bad at a young age by a dentist. Karen would have root canal done with no sedation due to her high tolerance for pain. This becomes significant later.] I am seeing Dr. Linda Gray-Liethe at Duke University Medical Center. I hope and pray that my Mom and her health conditions do not force me to delay the trip at the last minute. Coordinating the trip with Bob's work, hotel, kennel for the dog, and other reasons that we have to be in PA on certain dates make the trip very difficult to reschedule.

Tuesday, September 11, 2012 at 9:05am EDT

I am in North Carolina. Dr. Gray found seven spinal fluid leaks with the CT myelogram.. The headache I was having was a low pressure headache. before I left the hospiital to come back to the hotel, the frount of my eyes and forehead began hurting, both are not my usual normal. She called that a rebound high pressure headache and prescribed a duretic. I took on the duretic when I got back to the hotel about 3 pm. I did not take any before bed. Sometime during the night I started to have low pressure spinal headache again. I called the doctor this morning, and she said to stop taking the duretic, and she will call later today.

Friday, September 14, 2012 at 1:06pm EDT

I have bad news. I will be here longer than expected. A headache very familiar, if not the same one I had came back yesterday. Dr. Gray gave me an epidural yesterday, and would like me to meet with another doctor on Tuesday morning.

Tuesday, September 18, 2012 at 10:24pm EDT

Thank you for your prayers! I saw the other doctor this morning, he is a surgeon. He did not think that my headache was coming from my neck. He thinks that my headache is coming from cerebral spinal fluid issues. I am going back to North Carolina in a month, or two. I do not have the appointment yet. [On the records of this Duke surgeon there were many tests listed. They were not done. ALWAYS get a copy of your records!]

Thursday, October 4, 2012

How many of you lost friends or have family members that do not believe that you are as sick as you are? I have been fighting this battle for 23 years now. I have very few friends, and most of my family does not believe me.

Saturday, October 13, 2012 at 1:21pm EDT

I just posted one of those picture sayings on my wall that said “So I'm only imagining my pain because you don't know anyone with my illness? Wow, I didn't realize that you were so influential.” So fitting, isn't it?

Sunday, October 14, 2012 at 1:03pm EDT

I should be at the Y this week. I go back to North Carolina next week. My appointment there is on the 23rd. I expect to get more patches for the Cerebral Spinal fluid leaks. I will probably be there about a week.

Things will be difficult for a while after I get back home.

I think my post patch restrictions this time will be no stretching, lifting, and bending. So that makes running the vacuum cleaner, laundry, getting groceries, loading and unloading the dishwasher, getting things out of the refrigerator that are not on the top shelf, picking up dog poop and a few other things difficult, if not impossible to do. I have one of those reachers that would ordinarily help with picking things up off the floor BUT several of my leaks are between my shoulder blades which contraindicate using it.

Sunday, October 14, 2012 at 7:36pm EDT

I have a very difficult time sitting still, so it will be a challenge to not do those things. My husband helps what he can, but being gone 11 hours every weekday for work limits what he can do to help out at home.

Monday, October 15, 2012 at 12:58pm EDT

I see them [her family] on holidays, but that is it. I would love to have a close family, but that is only a dream.

Saturday, October 20, 2012 at 1:52pm EDT

It hard with problems like this. With this horrible headache, I did not have the opportunity to make long-term friendships when I was younger.

All the local doctors think that with this headache, that I was crazy. She found the problem in North Carolina. Recovery will not be a quick fix. I have had the horrible headache everyday when I am upright for 23 years.

Monday, October 22, 2012 at 8:34pm EDT

We made it here safely [to Durham] yesterday.

Wednesday, October 24, 2012 at 9:49am EDT

Being a dog parent myself, I understand how important they are! They are another member of your family. My dog is more important than most humans to me. In fact, I would have been upset had you delayed taking your dog to the vet so you could come see me! I hope that your dog is feeling better!

My back hurts quite a bit today. I expected that. Dr. Gray did 8 patches of 3cc each in my low back. She thought that my bilateral par defect/fracture at L5 may be causing a leak. Last month, she did 7 patches in my upper back and thoratic areas. Last month, my low pressure headache came back within a couple days. Last month my pressure was 14 and 1/2. Yesterday, it was 15 and 1/2. Currently, I do not have a headache, high or low pressure. I think that I will take the advice on the FB group of no bending, twisting, and lifting. We want to go home this weekend, but that depends on how I do and the hurricane.

Wednesday, October 24, 2012 at 9:59am EDT

Sorry, I forgot to tell you that I had an appointment here in North Carolina yesterday. My back hurts quite a bit today. I expected that. Yesterday, Dr. Gray did 8 blood patches of 3cc each in my low back. She is trying to patch the holes where I am leaking cerebral spinal fluid.. Last month, my low pressure headache came back within a couple days. Currently, I do not have a headache but last month I did not either for a couple days post patching. If you do not mind, you can keep the folks at the Y updated about me.

Wednesday, October 24, 2012 at 10:04am EDT

My back hurts quite a bit today. I expected that. Yesterday, Dr. Gray did 8 blood patches of 3cc each in my low back. She is trying to patch the holes where I am leaking cerebral spinal fluid.. Last month, my low pressure headache came back within a couple days. She did the blood patches in my upper and mid back last month. Currently, I do not have a headache but last month I did not either for a couple days post patching.

Wednesday, October 24, 2012 at 12:04pm EDT

Pain free is not likely. :-( I have multiple issues causing pain. I either a birth defect or old break at L5 (the lowest vertebra in you spine) that causes instability and I have issues with my sacroiliac joints. [This is the issue from when she was four.]

Thursday, October 25, 2012 at 4:27pm EDT

I have problems with high CSF pressure right now. It's an expected complication which may last months up to a year. I have to manage the high pressure with medication, lowering my activity, and diet modification. It will be hard when I get home with no bending, twisting or lifting. My husband does what he can, but he is gone 11 hours a day every weekday.

Friday, October 26, 2012 at 1:54pm EDT

I plan to come home tomorrow. Things are going to be rough for quite sometime as I have rebound intracranial hypertension. This will last several months to upwards of a year. This was expected to occur, and is a good thing as long as I properly manage it. Intracranial hypertension is managed with medication, lowering my activity level, and eating less salt. For as long as I am battling intracranial hypertension, things like going grocery shopping, picking up dog poop, running the vacuum cleaner, and doing laundry will be impossible. Even minor bending causes all the pressure to go to my head and affects my vision and makes me dizzy. I have to keep my intracranial pressure from spiking or it will blow out the patches. If I blow the patches I will go back to intracranial hypotension.

Friday, October 26, 2012 at 6:48pm EDT

Thanks … I appreciate your support. We will probably come home tomorrow. Things are going to be rough for quite sometime with rebound intracranial hypertension. This will last several months to upwards of a year.

This was expected to occur. That is managed with medication, lowering my activity level, and eating less salt. For as long as I am battling intracranial hypertension, things like going grocery shopping, picking up dog poop, running the vacuum cleaner, and doing laundry will be impossible.

Even minor bending causes all the pressure to go to my head and affects my vision and makes me dizzy. I have to keep my intracranial pressure from spiking or it will blow out the patches.

If I blow the patches I will go back to intracranial hypotension. Things will be rough because Bob is gone 11 hours per day every weekday [Resume anyone?] and spends a night or two a week with his Mom. Scroll down it signs and symptoms to see what is happening with me now: http://en.wikipedia.org/wiki/Intracranial_hypertension

Saturday, October 27, 2012 at 8:48pm EDT

So far, I am in rebound intracranial hypertension (too high of cerebral spinal pressure) which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high and blow out my freshly sealed patches, which would put me back in low pressure. I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest. I will always have pain on some level somewhere in my body because of the way the bones in my pelvis are abnormally rotated [Issue from when she was four], putting abnormal stresses throughout my body.

Sunday, October 28, 2012 at 11:22am EDT

For my low pressure is in my occipital area, that's below my ears in the back part of my head. The HP is mainly in my eyes, forehead, and a little behind my ears.

I will definitely try to take it easy for a while. It's hard because I also have back problems that feel better with movement, and mentally I feel better with movement.

Overall, the headache has been worse than these other pains. I have had this headache for 23 years. I had a car accident when I was 20 years old.

Monday, October 29, 2012 at 11:50am EDT

So far, I am in rebound intracranial hypertension (too high of cerebral spinal pressure) which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high and blow out my freshly sealed patches, which would put me back in low pressure.

I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest.

I will always have pain on some level somewhere in my body because of the way the bones in my pelvis are abnormally rotated, putting abnormal stresses throughout my body.

Struggling with Depression

Wednesday, October 31, 2012 at 7:11pm EDT

How do you manage to keep from getting depressed with the need to lie down a lot? Depression has been a struggle for me since this started 23 years ago. I did not find the psychologist that I saw off and on helpful.

Thursday, November 1, 2012 at 1:03pm EDT

I do not feel very good from rebound cerebral spinal fluid pressure being too high. I am doing what I can to lower it with medication, and lowering my activity level.

I know when I begin to raise my activity level in a few weeks my pressure will go even higher, which will slow me down.

Wednesday, November 7, 2012 at 7:39pm EST

You may have noticed that I have not been at the Y for the past few weeks. I had another appointment at Duke University in North Carolina for more dura patching, since the patches in September did not hold. I had several undiagnosed spinal fluid leaks for 23 years!

I was just diagnosed this past September. I had to go to North Carolina that diagnosis and treatment. Think spinal headache. Yes the headache was that bad!

It went away when I lied down only to come back when upright. No treatment worked massage, PT, medications and so on for that headache. So far, these patches are holding.

Way to early to celebrate because I currently have rebound intracranial hypERtension which is the next stage of healing from my 23 year headache. The challenge now is to not let the pressure get so high, and blow out my freshly sealed patches, which would put me back in low pressure. I have a high risk of that happening.

To lower my CSF pressure I am on a diuretic, a low salt diet, and lowering my activity level. The last part is the hardest. When a person has long-term dura leaks, the brain compensates by making more CSF. Plug the holes, the brain still makes too much putting me in intracranial hypERtension. High CSF pressure makes eyes get funny.

I have not blacked out from the pressure since starting Diamox. High pressure makes me very cold. Wearing my winter coat in the house and being under a thick comforter does not warm me. Too high pressure makes me unable to walk in a straight line, and I am not dizzy. Taking enough, but not too much Diamox, warms me and lets me walk in a straight line.

These things will get better over time as my brain re-learns to regulate CSF pressure.

Tuesday, November 13, 2012 at 9:42pm EST

Thanks for your prayers… I have a long road a head of me. Who knows how much permanent injury my brain suffered from not being cushioned in enough fluid for years.

Tuesday, November 13, 2012 at 9:45pm EST

I saw your message about going to the chiropractor. I do not know if you are a head or spine CSF leaker. I know that Dr. Gray does not like spine leakers seeing a chiropractor. I saw Dr. Gray a few weeks ago and asked her that question.

Wednesday, November 21, 2012 at 7:28pm EST

I do not like it when people drop in on me without a call at least a couple hours beforehand (unless it is an emergency) so I would give you the same respect. I never know what someone else may have planned. I do not want to interrupt their plans so I always try to call first. I do not get offended if they tell me they have other plans. I have needed to tell others that. [Feel free to drop in on me, but please do call first. Must make sure the dog(s) don't get out.]

Tuesday, November 27, 2012 at 2:28pm EST

I suffered insomnia the last couple nights. :'( High pressure keeps me awake. :/

No opertinuity to make deep friendships

Tuesday, November 27, 2012 at 9:13pm EST

The doctor from North Carolina called me in a duretic. I took the first dose at 2:30. I will take more before I go to bed. I am only on the computer right now because I spent the last few hours not moving. Maybe that will allow me to see the screen for 15 minutes before my eyes go funny from too much spinal fluid pressure. … I have the spinal or CSF leaking headache for 23 years… The psychologist that I was forced to see (by one of my doctors) off an on over the years for my *psychogenic* headache also reinforced… Have you ever had an epidural and had a spinal headache? If you have, you know how bad those headaches are!!! Now imagine living with that for 23 YEARS. Because I had this issue for 23 years, I did not have many opportunities to make long lasting deeper friendships. I did not talk about my massive headache when I went out, I was unable to go out a lot.

Sunday, December 2, 2012

[Karen now has all the symptoms of a major concussion from High Pressure, without hitting her head. She did not understand the pressure had been building since her patching in October.

Karen contacted Dr. Gray whom told us to get there as soon as we could. We left with little preparation nor packing.

On the drive down Karen continues to get worse. Karen talked with Dr. Gray on the cell phone and told her to go right to the ER at Duke. We are still at least four hours away. Karen wrote this note so she would remember what to tell Dr. Gray when we got there:

karen_dr_g_note_pg0001.jpg

We had never been to ER at Duke before and I only had a vague idea of where it was, and we did not have it programmed in the GPS, as we were not planing on driving from the Pittsburgh area to Duke ER.

Whoever designed the physical layout of Duke had no clue what they were doing. There is zero parking at the ER entrance. Karen went in ahead of me and told me to bring in the medication for them to see what she was taking.

Always have an up to date list of medication with you at all times.

Karen was an amazing person, however organization was not something she was good at. Her medications where in several plastic bags from a Big Box Store. Only she knew which was the correct bag. The single bag that she wanted me to bring in.

For reasons known only to her, she had several open bottles of the same medications, some of them being narcotics [I turned all of this crap over to the state police]. She told me once she would not combine the bottles as that made the count wrong and we would get in trouble if ever questioned.

So I enter ER with at least six bags full of pill bottles of various types.

Karen is NOT happy about this, and when the doctors see this cache of meds they immediately label her as a drug seeker and did not take her seriously, even tho Dr Gray had called ahead and told them Karen was coming and what to expect. This is the common treatment many CSF Leakers get when they go to the ER, always as a last resort because they know this happens.

This makes no sense at all to me. We had a lot of heavy duty drugs in hand, we probably had more than they did in the ER! So please explain the logic of why would Karen need to get drugs from them???

Karen had not slept in days. They told me to pick up some Benadryl at a pharmacy and sent us on our way. This was a complete waste of our time, and it gets worse.

Benadryl

I got Karen to the hotel and went across the street to get the Benadryl. They did not have the name brand and gave me some generic stuff that they said was the same thing. STICK TO THE NAME BRAND!

I'm blind

We finally got to bed late at night, far later than normal, and I don't recall the time.

At some point I hear a noise and it wakes me up. I don't recall the time, it is still very dark.

I find the source of the noise to be Karen standing between the wall and nightstand in the corner where no reasonable person would be at for any reason.

What are you doing there?

I can't find the bed. Turn on the light.

I turn on the light.

Why don't you turn on the light?

I panic. Thinking this can't get worse, her suicide proves that wrong, thinking how will she cope now that she is blind? I thought it was already permanent. :-(

She can't remember anything that she hears due to the Traumatic Brain Injury, now what will she do if she can't see?

In my own panic I don't remember the exact sequence of events. I get Karen into bed and she goes to sleep. She does not understand that she is blind, she is very calm about all this unlike me, she just thinks it is dark in the room or the light is burned out, she is to out of it to understand.

Somehow I get a hold of Dr Gray who gets and appointment with an Duke Eye Specialist, which is a day or two away. The diagnosis is irritated optic nerve due to the high pressure.

Karen wakes up in the morning and is no longer blind. I don't know if she even remembered any of this happening.

The vision problems do come and go as she mentioned in the following sections.

There was one amusing point at Duke ER. Being from Pittsburgh and it is December we had studded tires on the van. The fellow parking the cars at the ER looked at my right front tire for a long time, then came over and looked at the left one. He said “'I thought you'd ran over a box of nails, but they all look like that?”. Native people of North Carolina apparently have never seen studded tires, which keep the vehicle from slipping on ice.]

Karen's Duke Medical Records from the Eye doctor and Dr. Gray.

[The living have their privacy they must protect, Karen has no such issues anymore, so I'm putting her medical records on her site in the hopes they help someone. Maybe help someone find a cure for this dreadful disease of CSF Leaks… Also in this set of records is a report from Dr. Gray on CT Guided Needle Placement and a Blood Patch report in case you were ever curious about them.]

Back in North Carolina

Monday, December 3, 2012 at 6:19pm EST

I am in North Carolina. Bob and I made an urgent trip here for my spinal fluid pressure/headache. Too many new symptoms were cropping up so fast. The doctor here thinks that rebound intracranial hypertension or too much spinal fluid volume is stretching my dura and nerves.

Wednesday, December 5, 2012 at 11:43am EST

A couple days ago, the doctor down here did a lumbar puncture, and drained CSF. I had quick temporary relief of my vision problems, face burning, head full, nausea, lack of ability to sleep. The relief lasted until my brain replaced the CSF. My CSF volume is too high again. I feel it with vision problems, dizziness, head/face full and burning. I am having another LP to drain more CSF today. She said she would leave a hole in my dura to try to control this. I originally came down here for low CSF volume a few months ago, and a low pressure headache. That severe headache is gone. Now I swung too far in the opposite direction. I have too high CSF volume that has not responded to any medication.

Thursday, December 6, 2012 at 1:44pm EST

I am still in North Carolina. I am still not doing very well. They are having a difficult time getting my spinal fluid pressure under control. The doctor did two lumbar punctures. One one Monday and yesterday to check my pressure and remove fluid. My pressure was higher yesterday, than on Monday. That's not good. So far, no medication has controlled my spinal fluid pressure. My symptoms vary between dizziness, front of head and top of head burning and weird feeling, eyes burning, loss of smell and taste, noise in ears, and a few others.

Saturday, December 8, 2012 at 7:53am EST

I am not sure what is happening. My spinal pressure keeps wanting to go high, and medication alone was not enough. The doctor put a controlled size hole in there to help control the pressure.

Saturday, December 8, 2012 at 2:53pm EST

I do not feel as good as I should. Since I have not heard from the doctor to know her intentions, we'll probably come home so Bob can go back to work. I am nervous with this choice but I have no idea when or if I will hear from the doctor again.

Sunday, December 9, 2012 at 5:03pm EST

I heard from the doctor. I am coming home tomorrow. My head does not feel perfect, but it does not hurt like it did when I came down either.

Thursday, December 20, 2012 at 2:44pm EST

I had blood work today. About an hour later my PCP personally called me. My Potassium is very low. [This was causing Karen heart problems!] I am on potassium supplements. She wants me to increase my potassium today, and get another blood test tomorrow to check it.

Friday, December 21, 2012 at 6:36am EST

Right now my potassium is very low. If it isn't one thing, it's another that prevents me from doing what I want too. It gets lonely here. :-( [Karen tried to tell me how lonely she was here. I blew her off telling her she had Garth. I heard the words, I did not listen. Karma now has me living a lonely life in a house that was once home.]

Friday, December 21, 2012 at 7:05am EST

If I can't get my potassium level up, I will be in the hospital, very soon. :-(

Sunday, December 30, 2012 at 12:14pm EST

I try to keep positive. I am more positive than I used to be. I have only my husband. I have no children, … not help with the loneliness. I do not always talk about my issues with others because no one wants to hear it all the time. I do get lonely with my husband gone 12 hours per day, and some nights when he is at his Moms. [I mow Mom's grass once a week.]

Sunday, December 30, 2012 at 12:37pm EST

How many animals do you have? I have one dog. He is an older very gentle dog, but I still find him very difficult to take care of frequently. I always have pain. It's the long hours alone every day that bother me the most.

Sunday, December 30, 2012 at 12:44pm EST

My dog's name is Garth. He is the brown dog in my photos. The other dogs are either dead, or not mine.

Sunday, December 30, 2012 at 12:57pm EST

… I enjoy our chats. It helps a small bit with the loneliness.

{Jump to year: 1969 to 2010, 2011 2012 2013 2014}

2013

Saturday, January 12, 2013

“Just keep telling her that you'll be there with her and you'll make it through this together.”

[I'm sure that is what she was wanting from me. Sadly I did not do it enough. :-( ]

Thursday, January 17, 2013

… Doctors often don't agree with one another. It can be hard to get two to agree. It's unnerving and very scary to us as patients when doctors do not agree on such an important diagnosis.

Friday, January 18, 2013 at 11:35am EST

Pray for my Mom. She's being admitted to the Clarion hospital with either the flu or pneumonia. She has advanced pulmonary fibrosis and is 24/7 oxygen dependent. It's not the pulmonary fibrosis that is ultimately fatal, but pneumonia. I won't go see her, unless it becomes obvious she will not get out alive… Pray for things. I should not go see her because if I catch a cold, get the flu or whatever, my cerebral spinal fluid pressure will climb ever higher, and I will need an emergency trip to North Carolina. Stress causes instant high CSF pressure spikes, and this one is brutal.

Saturday, January 19, 2013 at 2:59pm EST

… As for my cerebral spinal pressure spikes, or increases, my brain got used to making too much cerebral spinal fluid for 23 years to compensate for the leaks. It will take a LOT of time for the pressure issues to settle, probably a year or so. If I get another leak and have it patched, than that will further increase the time for things to settle. My activities of daily living are restricted until this settles down.

Wednesday, January 23, 2013 at 12:27pm EST

My intracranial pressure is fluctuating a bit causing different symptoms.

Thursday, January 29, 2013

Best Answer - Chosen by Voters

I've had 2 friends commit suicide recently. It is NOT selfish. It is selfish of people to be pissed about it. No one knows what hell these people have in their heads and now their worries are over. If the whole family is damaged, or if friends feel betrayed, then it stands to reason: where were YOU when this person's head went where it went. One should feel a little for the courage it took to cross that line – it's not for the cowardly, I

http://www.fightingfatigue.org/video-lisas-story-fm-patient-commits-suicide

He mentions that Lisa wrote in her suicide note that one of the hardest things of living with chronic illness was that the people who were closest to her (family and friends) didn’t believe she was as sick as she was.

Tuesday, January 29, 2013 at 2:52pm EST

I am confused with HP and LP myself. Prior to Dr. Gray putting two holes in my dura to relieve the HP, Diamox helped my headache when upright. My eye issues with rebound HP were blindness. It started with a little spot here and there going black for a second or two, then progressed to complete blindness that lasted about a minute! Dr. Gray put the holes in my dura at this point, and I have not noticed any more vision issues. I still have HP issues and need Diamox, just no eye issues. I think I alternate between HP and LP on the same day. I have a headache all the time, upright and lying down. I wonder how much of that headache comes from inactivity and my muscles weakening? My symptoms originally started with a car accident 23 years ago, but I think that I had undiagnosed HP with no leaks prior to that. I think my dura handled the extra stress from HP, until the car accident added more stress. I have virtually no support system other than my husband, and the board. My family doesn't believe me. Since I had this problem for 23 years, I did not have the opportunity to make friends

Wednesday, January 30, 2013 at 11:09am EST

This CSF crap began when I was 20. I did not have blurry vision with HP. I went straight to blindness. I had many other neurological symptoms too. I reached the maximum dose of Diamox and HCTZ, and my pressure/volume kept going higher. I posted in detail about this experience on the private [CSF Leak Facebook] group. I wonder if HP bothers us more because we leaked for so long? Not enough research exists to prove or deny that. Every time I feel a little LP, I wonder am I leaking again. … One of my neighbors, that I do not know very well may have the potential to become a good friend this summer. She has some health issues that prevent her from doing similar things as us, because of that I was not ashamed to tell her how much I need to rest. When we have been together since fall, we did not talk about our health the whole time. No one wants to hear that. We seemed to understand each other. I have a lot of acquaintances, but very few physical friends because telling them how much I need to lie down is embarrassing. I would feel better mentally if I went back to my usual exercise routine at the YMCA but HP is unrelenting if I do more than gentle exercise at home. Prior to seeing Dr. Gray, I forced myself to exercise through the most horrific headache everyday.

Thursday, January 31, 2013 at 11:35am EST

…If I had a child, I too, would feel guilty about not being able to do things other Moms do. … Brain fog Loss of short term memory My ability to follow and participate in verbal communication is diminished [, I also have] systemic issues with tendons (I do not know if this is from the leaks or the anti-biotic, Levaquin) back, neck, head pain My muscles throughout my body get as hard as a rock and become very painful. I have other symptoms, that I cannot think of right know. I always have a headache and neck pain. At times, I do not think Diamox or HCTZ do anything. Yes, I feel like my brain is swimming in CSF. In the past when I shared with others what I was going through, I was rejected. So, I am very cautious about who I share this with.

Saturday, February 2, 2013 at 10:12am EST

My HP is out of control. I have spoken with Dr. Gray. If I cannot get it under control with 3000mg of Diamox per day, I have to go see her, and she will put another hole in my dura. I have been on 3000mg of Diamox for 48 hours now. I do not feel that it is helping.

Saturday, February 2, 2013 at 5:23pm EST

I hope that I make sense because this HP is out of control… I don't think Diamox does anything. My pressure/volume is building. The HP headache is becoming worse, and some of the symptoms that I mention below are beginning to come back. I feel like I did in in the early stages of the out of control HP in late November/early December. I had to make an emergency trip to Dr. Gray. Dr. Gray said she would call me again today or tomorrow. If she does not, I will call her Monday. I am going through some old email to remember things about that HP in late November/early December. Despite two different anti-nausea medications, I got so sick that I could not keep food down. The blindness, very loud tinnitus. I lost my sense of smell and taste. I was very dizzy. My face felt like it was on fire. I could not sleep, even sitting up. I couldn't balance. I feel like I can't think more with HP than LP. Before Dr. Gray put in holes my opening pressure was 14 1/2. When my pressure/volume was out of control it my opening pressure was 15 3/4. BUT Dr. Gray didn't go by just the numbers. She explained to me that my pressure was not going up because my dura stretched from the extra CSF. When my dura stretched, it pulled and irritated my cranial nerves, giving me all kinds of symptoms. Dr. Gray said that some people had a dura like mylar, meaning that their dura did not stretch. In these people, pressure would rise. Other people had a dura like latex that would stretch causing an increase in volume, and not necessarily an increase in pressure. Ever since my accident twenty three years ago that caused my CSF leak, I have a hard time following verbal conversations. I did not have a problem with that until that accident.

Dr. Gray has not mentioned a shunt. I saw her three times. Last September, she did patches in my mid-back. I believe she patched the wrong area this time because HP lasted only 24 hours. In October she patched my low back. Apparently, this is where my leaks were because HP has been out of control since. In December, I went back and she put two holes in my dura during two lumbar punctures. My pressure/volume continued to rise after the first one. Because she wanted these holes to continue leaking, she did not do blood patches or require me to lie down after the procedure. My worst symptom with HP is probably the headache.

Saturday, February 2, 2013 at 5:44pm EST

I forgot to add, the first time I saw Dr. Gray, she put several patches in my thoracic area. I was back in LP within a day. The next trip, she patched my lumbar area, and I have HP every day since.

Saturday, February 2, 2013 at 7:55pm EST

My short term memory is bad. My husband says that I repeat things [A lot!]. You know what, I don't remember doing it unless he points it out! I don't know how to determine if a dura is like latex or mylar. I don't know if Dr. Gray could tell on the CT scan, or my symptoms. Connective tissue disorders have been mentioned in the past, but nothing definitive. I believe the systemic tendonitis that began after Levaquin was caused by that drug or the infection. Levaquin saved my life from cellulitis. [It also ruined her future life!]

My left [hip] ilium is in an inflare and rotated posteriorly. My right ilium is in an outflare and rotated anteriorly. Unfortunately, I believe this was caused by an injury when I was younger that was never treated. [Fell of the swing when four.] These obliquities (spelling) cause muscle imbalances and microtrauma throughout my body.

I have HCTZ but Dr Gray did not want me to take it this weekend. I have pulsating tinnitus when my volume is up like right now. When my pressure/volume is good, I have no tinnitus. When it rises a little, I have a high pitched whistle that keeps getting louder the higher my volume/pressure goes. Then turns into loud pulsating tinnitus.

I will pray for you, too. I am glad to meet you, also. Many times I feel like my seemingly random symptoms must be psychological. Many of the people around me believe that if I say anything. So I say nothing about it. My Mom asked me tonight, “Would you go to Duke for the low pressure headache again, if you knew this was going to happen?” I told her “Yes”. She was insinuating that I made a mistake treating the low pressure headache…

Saturday, February 2, 2013 at 7:58pm EST

I wonder if the holes Dr. Gray put in last time healed, or if my brain is making CSF even faster.

Sunday, February 3, 2013 at 2:10pm EST

The doctor at Duke wants to work me into her schedule for a lumbar puncture to remove CSF and create another hole. She did this same procedure two months ago. I haven't heard back on a date, but it will be in the near future.

Sunday, February 3, 2013 at 9:21pm EST

My cellulitis was very painful. It spread so fast that I could literally watch it spread! The cut on my leg was 2 and 1/2 inches long and down to the bone. It bled quite a bit. I had to go by ambulance to the ER. They cleaned, stitched it, and gave me a prescription for keflex. All went well until about two days after I finished keflex. My leg began hurting, but did not look infected. I went to my PCP. He gave me another prescription for keflex. All went well again until about two days after I finished keflex. My leg began hurting again, but did not look infected. I went back to my PCP again. I received a lecture on antibiotic resistance and no prescription for an antibiotic. [Doctors need to learn to *LISTEN*!!] Two days later, I had cellulitis from above my knee down to my ankle. I am not blaming my PCP because I agree that my leg did not look infected. My point is antibiotics being stopped too soon is not always the patient's fault. That infection left my leg feeling like dead weight. I had to go to PT to relearn to use it properly.

Sunday, February 3, 2013 at 9:33pm EST

I saw a psychologist off and on for years since this began. I had to see her because the doctor at the pain clinic required it. She was downright hurtful. She treated me as if it was strictly anxiety and depression. Our relationship was adversarial. When I told her that I was going to Dr. Gray, she tried every psychological trick to get me to change my mind, when I refused, she ended our relationship. What did she have to be afraid of? Was she afraid that she was wrong, and my headaches had a cause other than depression and anxiety? I don't like to tell doctors about my anxiety or depression either… they think anxiety and depression is the primary problem. I do not have a good way to handle my family talking about me. It does get to me. They treat me like I made a lifestyle choice to be lazy, seek attention from doctors, etc. For as long as I can remember, we were brought up to hide our physical pain if there were no obvious swelling or bruising. We were ridiculed as being hypochondriacs as kids. When I was 4 years old, I walked around on a broken foot for 4 days without complaining is one example.

Sunday, February 3, 2013 at 9:42pm EST

… I too, wonder why Dr. Schievink doesn't do pressure checks. Dr. Gray got back to me. She wants to work me into her schedule for a pressure check, remove CSF, and put in a bigger hole. I don't know when that will be. Probably within the near future.

Monday, February 4, 2013 at 2:13pm EST

…I don't understand why people are unsupportive when you or I say something about surgery or some other procedure we had. Maybe it makes them feel vulnerable? I don't know. It's not like we talk about our health all the time. Sometimes, we want to tell them a little bit about ourselves but we do not want them to tell everyone else what we said! I feel betrayed when I later find out that they told someone what I said without my permission. Anything we type in private messages or in email is saved on computers other than ours and is not really private. Even though we do not show these messages to others, we have no idea if anyone reads these messages at Facebook. I noticed your disappointment with people that love to gossip. I keep to myself partly because of my pain, and partly because I am not the type of person that likes to run around. It gets back to me that the gossipers here gossip about me being 'weird' because I keep to myself… True friends will stick with you when you have a chronic illness… My doctor at the pain clinic will still see me. The psychologist at the pain clinic will not see me anymore. The doctor was (ineffectively) treating my headaches, so not seeing him is my choice. I would like to talk with someone about how I feel mentally, BUT it has to be someone that understands chronic CSF leaks. Otherwise, treatment goes down the anxiety and depression route again.. I doubt any counselors, or psychologists are knowledgeable about CSF leaks unless someone close to them was treated by Dr. Gray or Dr. Schievink. I have not heard from Dr. Gray. Last night, my neck cracked very loud. I wonder if that changed my CSF flow? My CSF volume is still high, but not as high as it was before the crack. They are talking on the private forum about being over weight and HP. I am not overweight. I am 5'11“. My weight is 170 [pounds] and going down because HP makes it hard to eat. [She was 165 pounds at the time of her death.] … I have to lie down several times every day for an hour or two each time.

Monday, February 4, 2013 at 5:06pm EST

I never had a blind blood patch [up to this point]. The sad thing is, if any doctor for 23 years suspected a CSF leak, a blind blood patch in my low back would have worked. My leaks are around L4 and L5. I found Dr. Gray on my own. She officially diagnosed a CSF leak. My own doctors were dismissive of the idea when I mentioned my orthostatic headaches and CSF leaks. Maybe that intimidated them. They treated me for years with little success. A doctor from a prestigious university finds the problem on the first visit. I had very little headache for the first month after Dr. Gray patched me. Then my HP went nuts.

Monday, February 4, 2013 at 6:26pm EST

I took Levaquin for a couple months in 2003. Cellulitis was very painful. More painful than the low pressure headache. My leg was an angry bright red and hot. During healing it turned purple. The pain went away when it was still purple. I believe my family thinks that if my low and high pressure were a “real” problem the local doctors would be able to fix it, and I would be as good as new. Since that's not happening, the problem must be with me. I am lazy, seeking attention, etc.

Tuesday, February 5, 2013 at 2:02pm EST

Seems everyone says it takes 6 months to feel better from surgery. I wonder if it will take longer for long-term leakers? I definitely have HP, out of control HP. Every day it is getting worse. I am scared that I might blow another hole if Dr. Gray, and I cannot get a time set up.

Tuesday, February 5, 2013 at 8:42pm EST

My appointment at Duke is Friday morning. … I am getting a lumbar puncture, CSF removed, and I will not be required to lay flat for the hole from the needle to seal. In fact, we don't want that hole to seal. We want it to continue to leak.

Tuesday, February 5, 2013 at 8:50pm EST

Dr. Gray put in two holes in December when my pressure/volume went out of control. I had some relief after the first hole. She removed 23 cc but that relief was short lived. Two days later my pressure volume was higher. She removed more fluid. I had some immediate relief both times. It took a few days for most relief because the cranial nerves were irritated.

Wednesday, February 6, 2013 at 12:15pm EST

I thought about your [relative's] negative comment regarding you traveling to see doctors. Comments like that come from people that have never been sick, or had only common aliments that local doctors could treat. People that make those comments have no idea what we go through everyday.

Wednesday, February 6, 2013 at 7:06pm EST

Our chronic illness makes it very problematic to maintain relationships with others. Our illness affects everyone of our relationships. The depression, resentment, anxiety, etc. build. Those around us do not understand how one day we can function almost normally, and the next day we can barely get out of bed. They can never truly understand our pain.

Wednesday, February 6, 2013 at 9:50pm EST

Going to Duke tomorrow. Things are not under control. I see the doctor Friday. Here's a link for an idea of what I am dealing with. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001797/

Thursday, February 7, 2013 at 8:32pm EST

…I think the flu raises intracranial pressure. If you do get it, you may need more diamox. I will let you know how it goes with Dr. Gray. I am kind of scared. She wants to leave this hole in my dura like she did in December when my volume went too high. This doesn't make me nervous. She wants to use a bigger needle. That makes me nervous. I don't want a low pressure headache.

Friday, February 8, 2013 at 5:02pm EST

I thought I had HP because my face and scalp hurt. I had no occipital pain like I had with low pressure for 23 years. My headache did not get better lying down. My opening pressure was 11 3/4. The very first time I was here with classic low pressure symptoms my opening pressure was 14 1nd 1/2. I am confused. She gave me a hole with a 20 gauge needle.

Saturday, February 9, 2013 at 12:39pm EST

I am confused. She put another hole in. She wants to get me off the Diamox. I did not take Diamox prior to the pressure check. I hope this hole doesn't give me back the LP headache. I am confused. The first time I saw her my opening pressure was 14 and 1/2 and I had the usual LP headache. My opening pressure this time was lower than that, and it felt like the HP headache. Thanks for keeping me in your prayers. I have cysts. [I do not recall her ever telling me this, nor can I find her telling anyone where they are?] I do not know how many. If I had a magic wand, I would wave it and make both of us better!

Saturday, February 9, 2013 at 4:48pm EST

I feel slightly better today. The pressure issue is so confusing. How can my pressure be less than it was when I had typical LP symptoms? Dr. Gray think that this has to do with my pressure verses volume and stretchy dura. … I loose hope, too. It's really hard to bounce back sometimes when I feel isolated physically from others. Thanks for praying for me. I pray for you, too. I always like it when we get less snow than they called for. A non-invasive way to check our ICP would be wonderful! [NASA is working on this. Alas to late for Karen. :-( I'll post details at http://www.kpaddock.com .]

Sunday, February 10, 2013 at 1:50pm EST

I feel worse today than I did before I came to Duke this time. I am still in Durham. It's hard to stay upright for any length of time. The pain is all over my head. It eases but does not go away lying down. I have to question whether I needed the extra hole she put in my dura. I would not be surprised if she wanted me to continue to wean off the Diamox to see how I feel, then if I still have problems to come back for patches. How can I go home and face the naysayers when this trip has, in fact, made me much worse? I am terribly upset!

Sunday, February 10, 2013 at 6:51pm EST

All I know is that my head hurts real bad. The tinnitus is loud and my eyes hurt. My pressure was 11 and 3/4, the lowest it has ever been. She put an additional hole in my dura and has me very slowly weaning off Diamox. This feels like low pressure because I am better lying down. … Not just with her, but sometimes I feel like I am a complainer. No, she did not mention a shunt. In hindsight, I think I was taking too much Diamox and my pressure/volume went too low, but my symptoms felt like high pressure. I am a member of one of the IH boards, but haven't visited it for a week or two.

Sunday, February 10, 2013 at 10:36pm EST

… When I made the comment about feeling like a complainer, I meant it in the context of talking with doctors, and not so much in our conversations. … I feel hopeless now. The head pain, eye pain and tinnitus are horrendous! I feel like my face is going to implode on itself. I don't think that I will be able to get to sleep without crying myself to sleep. The pain was much worse yesterday, then Saturday. Thanks for praying for me. I do the same for you. Hugs to you. Karen

Monday, February 11, 2013 at 9:58am EST

I heard from Dr. Gray. She wants us to stay a few more days. She put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox. My husband brings his work with him on these trips, but I still worry about his job…

Monday, February 11, 2013 at 10:18am EST

You're coming to Duke this week. I am in Durham this week, too. Where are you staying? I am at the Comfort Inn. If we both feel up to it, we could go out to dinner or something. Friday, Dr Gray put a 20 gauge hole in my dura on Friday to let leak. That hole in combination with Diamox made my CSF pressure go WAY TO LOW. Horrible headache, tinnitus, eye problems, etc. Right now she wants me to stop Diamox.

Monday, February 11, 2013 at 10:53am EST

I am not sure if I will see her again. She wanted me to stay in town for a few days after stopping Diamox so I don't know what will happen.

Monday, February 11, 2013 at 11:01am EST

She thought it was High volume, even though my pressure 11 and 3/4 was less than my original opening pressure when I first saw here. My pressure then was 14.5. I feel like crap. The head pain, eye pain and tinnitus are horrendous and unbearable! I feel like my face is going to implode on itself. My eyes became light sensitive yesterday. I cried myself to sleep last night from the pain. The pain was much worse yesterday, then Saturday. I told Dr. Gray everything above. She thinks maybe Diamox and the hole she put in Friday put me in low pressure. I am so confused.

Monday, February 11, 2013 at 11:11am EST

I thought that I had HP, but I think I was wrong. I am so confused. I feel so much worse now than I did before Friday.

Monday, February 11, 2013 at 11:24am EST

Yes, I talked with her today. She wants me to stop the Diamox. The nerves in my face have been irritated for the past few weeks. She thinks that I have a high volume problem because when she went to add fluid I complained about my face. I did not complain about my face when she removed fluid. I think those nerves are so irritated from low pressure that they fired random signals and that is why adding fluid hurt. I did not feel like my face was imploding until after I saw her Friday. Maybe stopping Diamox cold turkey like she wants me to will work. [Later Karen thought this was a bad thing to do.]

Monday, February 11, 2013 at 11:33am EST

I can be up for short periods of time. I could be up for longer periods of time before Friday.

Monday, February 11, 2013 at 3:00pm EST

I don't know what to do. I can't function like this at home, yet I have to because I have no support network other than my husband. She wants me to stay in town for a few days, so (I hope) she'll do something (like maybe put a blood patch on the hole Jeff made in my dura) if I do not improve.

Monday, February 11, 2013 at 3:51pm EST

I am deeply upset about this. I think the original patches are NOT leaking. … She said she wants me to get better and not make multiple trips. If stopping Diamox is not enough, I don't know what to do.

Monday, February 11, 2013 at 4:01pm EST

I was taking 3000mg of Diamox. I have been on 1500 since Friday. I can't tell a difference, I HURT. I don't know what she'll do(if anything at all) if stopping Diamox is not enough, and this makes me anxious.

Monday, February 11, 2013 at 4:25pm EST

I have been thinking about you, but instead of her calling mine HP, she says it is high volume. I am going to send her a message later today mentioning the possibility of my facial nerves being so irritated from low pressure that they fired random signals and that is why adding fluid hurt.

Monday, February 11, 2013 at 4:30pm EST

My scalp, sides of my head forehead, all around my eyes, both cheeks and the skin between my nose and mouth all hurt. No, she did not patch me after she did the OP.

Monday, February 11, 2013 at 4:47pm EST

I feel like my face is going to implode since … Friday.

Monday, February 11, 2013 at 4:49pm EST

[Do your eyes ever hurt too? Feel like they are scratchy?] Yes, my eyes do that. This symptom started a few weeks ago about the time I increased Diamox.

Monday, February 11, 2013 at 4:52pm EST

I don't think I am leaking from the original sites BUT I am not sure either.

Tuesday, February 12, 2013 at 9:08am EST

If I am still here, how would I get in touch with you? Dr. Gray said, she would patch me, if I need it after getting off Diamox. In December, I had HP not controlled by the medication, confirmed by Dr. Gray She had to create a hole in December.

Tuesday, February 12, 2013 at 9:49am EST

I have not been up much to tell how I will feel. I ate breakfast downstairs, and brushed my teeth with a slight headache. That is an improvement over yesterday.

Tuesday, February 12, 2013 at 11:42am EST

Just walking around the mall for a little exercise is a stress reliever. [Karen rarely did this, even tho I often suggsted we go do it.]

I hope that, Dr Gray patches just enough this time to control your HP without blowing more holes. You have been though so much with all the failed patches and surgery.

I never realized how bad HP can get until December when 3000mg of Diamox and 100mg of HCTZ did not control mine. I did not know that chronic leakers have a lot of shunt malfunctions. [An other 'leaker'] talks about her shunt on the forum. Maybe shunts fail from over working?

I feel slightly better than I did yesterday. We'll see if stopping Diamox is enough. I have not been up for very long today, either. Walking more than 15-20 minutes is painful for me because I had bilateral tendonitis in peroneal and posterior tibialis anterior tendons for a couple years. Over a period of four years, I had 19 physical therapy prescriptions for tendonitis in multiple locations throughout my body. I believe the anti-biotic Levaquin is responsible for this. The PT diagnosed tendonitis every time. Tendonitis is not an overuse syndrome for me.

My uncorrectable (without major surgery) pelvic inflare/outflare, posterior and anterior rotations do not help.

Since I found my current massage therapist who is trained in the John Barnes Myofasicial Release technique last year, I have not needed more PT. I look forward to meeting you.

Tuesday, February 12, 2013 at 2:50pm EST

I have been up for almost 3 hours and my headache is mild to moderate. I will probably lie down in a little bit. We'll see if two 20 gauge holes (the one from December and the recent one control high pressure without medication and keep me out of low pressure. If not, I will get a blood patch. … I would like a doctor closer to home to treat this, also. Before I came to Duke, the local doctors looked at me like I had 3 eyes when I would describe these symptoms. I was dismissed as being anxious and depressed. Anybody would be anxious and depressed if they felt like we do.

Tuesday, February 12, 2013 at 6:50pm EST

On Friday, the doctor put another hole in my dura (the sac that surrounds your brain and spinal cord) to let cerebral spinal fluid leak. That hole and my pressure reducing medication made my intracranial pressure go way too low, with horrendous pain and neurological issues.

Right now we are waiting until the pressure reducing medication is out of my system to see if I will need blood patches. We need to find a balance among the intentional holes she put in my dura, minimizing high and low pressure symptoms, and taking minimal medication for high pressure.

Tuesday, February 12, 2013 at 7:11pm EST

My head feels awful now when I am upright. It feels like a second half of the day headache. I had tendonitis in dozens of tendons. Most of the time, I had it in multiple sites and in multiple stages of healing, simultaneously.

Tuesday, February 12, 2013 at 10:13pm EST

WOW..This condition causes a roller coaster of emotions. When you leak after you were fixed, of course you feel more down, depressed, and discouraged. I know. The people around you don't understand, and in most cases don't care. Well, I care. I wish that I had the right words to say now, but I do not. Have you called … Keep me updated. I will pray about this. I do not know how many cysts I have. Diverticulti is mentioned in my records, so I must have some … any chance menopausal hormones may be involved? I am in perimenopause and get bad headaches from that. I have those headaches when I am upright and lying down. My perimenopause headache overlays my leaking headache. You can imagine how painful having two headaches at the same time is. Today, my headache is a second half of the day headache. Maybe more Diamox will be out of my system tomorrow. If not, I will need another blood patch.

Wednesday, February 13, 2013 at 11:27am EST

Thanks for asking how I am doing. I am still in NC. My face is burning again, and the headache is bad.

Wednesday, February 13, 2013 at 12:00pm EST

I thought that I felt better yesterday. Today, I don't think so. Dr. Gray said she would patch me, if necessary.

Wednesday, February 13, 2013 at 5:34pm EST

I do not take hormones. I never tried any. Let me know how it goes with the therapist. I live in a rural area so my choices for therapists and everything else is limited. You might be on to something with regards to secondary addison's disease and no longer needing steriods. Like you said, reduce steriods under the care of a doctor. You don't want another adrenal crisis. I have no idea what my cortisol levels are. How do you find someone to advocate for you with your health? Unless, I am really sick, I think I do a good job advocating for myself.

Wednesday, February 13, 2013 at 5:47pm EST

Dr. Gray is going to check my pressure tomorrow.

Wednesday, February 13, 2013 at 5:49pm EST

TODAY: The more I have been upright, the more my head, face and behind my eyes hurt. A few minutes ago, I lied down and the headache improved, but has not gone totally away. YESTERDAY: I had a mild-to-moderate headache this morning that progressively got worse later in the day. My eyes became a bit light sensitive later in the day. Lying down relieved the headache.

Wednesday, February 13, 2013 at 5:56pm EST

I hear ya about the symptoms changing. Mine do by the hour, and sometimes by the minute.

Thursday, February 14, 2013 at 8:26am EST

I have to have another lumbar puncture today. My intracranial pressure goes up and down. I thought I could tell the difference between high and low, but I was wrong last week. The symptoms can be exactly the same. [Karen was taking a *lot* of Dimox to lower her pressure because she thought it was to high, when it was to low!]

Thursday, February 14, 2013 at 12:27pm EST

I see Dr. Gray at 4pm today for a pressure check. We may go home this weekend so Bob can physically be at work. He can and does bring his work with him, but his employer likes him to be physically present, too. [We should have stayed. :-(]

Thursday, February 14, 2013 at 1:07pm EST

The day after patches, I mostly stay in bed. I take things slowly for a while. We are on the 3rd floor at the Comfort Inn.

I am frustrated that I have not been able to exercise at home at our YMCA. Pressure issues have prevented me from doing that for a few months. I don't know for sure what day we will go home.

Thursday, February 14, 2013 at 2:10pm EST

I see Dr. Gray at 4pm. The brain dead/brain fog feeling, what causes it? Diamox? HCTZ? CSF pressure changes? Permanent brain injuries from leaking? A combination of these things? I thought that I could tell the difference between high and low pressure. I was wrong. I worry about leaking again. Who doesn't? I know that I am leaking now, but that's because of the second hole. I will let you know how it goes after I see her. I can't wait till we are well, either.

Thursday, February 14, 2013 at 8:36pm EST

We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot's B and I felt better. She patched the hole from last week.

Thursday, February 14, 2013 at 8:49pm EST

I am very confused with the pressure issues. My high and low pressure symptoms do not correspond with the number. My pressure numbers have varied between a low of 11 and 1/2 and 20. I have what feels like very slight HP, but I don't know. I was sure that I had HP last Friday when it was low.

Thursday, February 14, 2013 at 9:00pm EST

Frustration, anger, anxiety, depression, sadness, confusion, fear of the unknown, and many other feelings accompany a pressure change. The fear of leaking again is very real. Others do not understand why we feel this way. … We just got back after my lumbar puncture. My CSF pressure was 16 1/4. She added 5cc of Elliot's B and I felt better. She patched the hole from last week.

Friday, February 15, 2013 at 11:00am EST

We will probably go home tomorrow because of Bob's work. They are wanting him. :( Because the drive is so long, 10 hours with no traffic, we have to leave very early. :'(

Friday, February 15, 2013 at 1:05pm EST

My face hurts a little today. I do not have the all over headache. … We may go home tomorrow.

Friday, February 15, 2013 at 10:19pm EST

I have a little HP. I am really stiff, but that's because I have not been moving much. It's not that I want to go home, Bob's employer wants him back, or else we would stay until Sunday.

Saturday, February 16, 2013 at 8:06pm EST

My hubby's boss told him Friday that they wanted him to work Sunday, which is why we had to come home today.

[Sadly I put my job before Karen, and she paid the ultimate price, when the Vishay 'TFDU4301 drop in replacement for the TFDU4300' failed, see: Does 'Drop in replacement' strike fear into your Soul? It should... Resume anyone?]

Saturday, February 16, 2013 at 9:19pm EST

We came home today. I can tell my intracranial pressure is up. I have to minimize all bending, twisting and lifting until the patch heals. The higher intracranial pressure puts extra stress on it, which is why I have more restrictions again.

Sunday, February 17, 2013 at 7:30am EST

There is no quick fix. In my trips, I met several others with the same conditions. We arranged to meet over FB. We are all patients there for this.

Sunday, February 17, 2013 at 10:58am EST

If people knew what those of us with chronic spinal headaches/spinal fluid leaks, and the resulting rebound intracranial hypertension when doctors repaired those leaks go through on a daily basis, we would get more support and help from others. When this condition becomes more well known, this will become a reality. If it wasn't for our parents and my husband's job, I'd love to live in the Durham/Raleigh North Carolina area. I hate to come home each trip. [A dream lost: Karen wanted to move to Durham or LA so she could meet more people and make physical contact with friends, not just on the computer.]

Sunday, February 17, 2013 at 12:18pm EST

I feel about the same as I did yesterday. I thought I had HP because my head pain was in front of my ears, so I took 3000 mg of Diamox. Apparently, LP and HP symptoms were exactly the same. I don't think I was leaking. I think I took too much Diamox. Jeff put a hole in my dura on Friday with a 20 gauge needle. That is what she patched on Thursday. We live in a very rural area. More rural than Durham. I have to drive anywhere I go, and do things by myself since I do not have close physical friends. Well, I have one, but she has breast cancer that has metastizised. I do like to exercise at the YMCA, but have been unable to since my blood patches in October. Exercise is a good stress reliever. I have been leaking for 23 years, which is why I have not had the opportunity to make many physical friendships.

Sunday, February 17, 2013 at 3:30pm EST

I made good memories this time in NC. I met in person several others with my condition. I met all of them on FB several months ago.

Wednesday, February 20, 2013 at 9:57am EST

I don't know if I am feeling high or low pressure. They feel this same. I feel like I did when I went to see Dr. Gray. My pressure was 11 1/4 when she check it. Even if I was leaking again, it would be higher than that, because I am taking only 25mg of Topomax twice a day and no Diamox, yet I feel exactly the same. I don't get it. Dr. Gray told me not to take Diamox. My Mom is in the hospital right now. She went yesterday with dehydration and fever.

Thursday, February 21, 2013 at 11:44am EST

Sometimes, I don't know what to do, or what is affecting me. I worry about my pressure being too high or too low, my perimenopause hormones, the side effects of starting topamax last week, and my Mom. So many things. I don't know what causes what symptom. Talking on here is the only outlet that I have. My body is so stiff and painful from not not doing regular exercise for a few months. I have underlying issues (that I do not think, but I cannot prove) are not related to leaking that cause this this. My Mom is doing about the same as she was yesterday.

Thursday, February 21, 2013 at 8:05pm EST

I don't know for sure if I am having symptoms from Topamax. I have a rash on both feet that does not hurt or itch. I don't know if that is from the drug or something at the hotel. [If it was the hotel, I did not get it.]

Thursday, February 21, 2013 at 10:34pm EST

Tonight, I feel like I have HP. I had a massage tonight. Dr. Gray okayed me to for those. My massage therapist has a Masters degree and two Bachelors degrees all in health related fields and many certificates related to massage. She worked on the problem areas in my pelvis, my right shoulder, and both wrists. My right shoulder has been stiffening up. Probably because I am afraid to exercise it too much. My left wrist started to hurt a few days ago, and I don't know why. I will get back to exercising. I love to exercise. It is hard,(mentally) for me not to exercise. I never know when my period is going to start. For the past 6 months, my cycles have ranged from 23 to 50 days long. I noticed that a week or two before my period begins my headache gets much worse. For 24-36 hours during my period, I saturate a ultra tampon every hour. It's impossible to leave the house. Before my gynocologist will treat that, she wants me to have an ultrasound which requires that I drink 32 ounces of water to fill my bladder. I do not want this test because I believe that will put too much pressure on my dura. Fibromyalgia has been mentioned, but I don't believe it. I believe all my other pains are caused by my pelvic obliquities. My Mom must have misunderstood the doctor. She is feeling better. They sent her home today. If she had a blood infection, they would have kept her longer. When she first told me she had a blood infection, I repeated it back to her a couple of times, to be sure I had it right, I am not sure where the misunderstanding occurred. I think of you throughout the day. Not many people know what we go though with this illness, especially after 20+ years!

Saturday, February 23, 2013 at 1:40pm EST

I hurt today. My head pain is there, but not too bad. It's the rest of my body that hurts, especially my shoulders. I know if I did exercise other than gentle stretching, I could work this out, but I am afraid of blowing the patch. … I had a headache everyday for 23 years.

Saturday, February 23, 2013 at 1:55pm EST

I hurt today. My head pain is there, but not too bad. It's the rest of my body that hurts, especially my shoulders.

Saturday, February 23, 2013 at 2:08pm EST

After my successful patch in October, I could tell the difference between HP and LP. LP was pain in the back of my head, and HP was pain in front of my ears. I went back this time because I was sure Diamox was not controlling my HP, because it did not in December. This time, I was taking 3000mg of Diamox when she checked my pressure, and it was 11 and 1/2. I told you she thought that was HP but a few days later patched the hole. I stopped Diamox on Sunday when we were in NC. On Thursday, when she patched the hole, my pressure was up to 16 1/4. This pressure is higher than it was when I saw her in December for actual HP symptoms with occipital nerve swelling. I have no occipital nerve issues now. I did not have a headache in the back of my head with my pressure at 11 and 1/2. My headache was all in the front of my head. When I saw her the first time in September, my headache was in the back of my head. I had typical LP symptoms. My pressure was 14 1/2, higher than it was this last time. These number seem so meaningless. [Are they meaningless? Are there other things at work that we do not yet know to look for???]

Saturday, February 23, 2013 at 2:23pm EST

In my own case, the number is certainly subjective. Most of the research into this condition has been done within the past decade. I am doing very gentle exercises at home. The further out that I get from being patched, the more exercise that I will do. I know regular exercise in moderation helps most conditions. I was sure this time that I had HP…Now I can't tell the difference between HP and LP!

Saturday, February 23, 2013 at 3:10pm EST

I would like to know why the symptoms changed to. Physical therapy may it easier to do lifting and bending. It all depends on what causes the soreness. PT can help atrophied muscles. PT won't help pressure issues. You may have a combination of atrophied muscles and pressure issues. It would be great to find a PT that understood CSF leaks but I doubt many, if any, exist. [Create yourself a a new market and become one of these PT's! One of Karen's friends here in PA is doing this.]

Saturday, February 23, 2013 at 3:33pm EST

In hindsight, my symptoms of HP and LP changed when Dr. Gray put the hole in my dura in December. She had to do that, because I was loosing my vision from the HP. Apparently, that changed the dynamics, somehow?? I hope this last patch holds over the hole the second hole Jeff created on this last trip. I wish that I had a way to tell if the patch was holding.

Saturday, February 23, 2013 at 3:54pm EST

I had a thought. My HP and LP symptoms changed when Dr. Gray put a hole in my dura in December.

Saturday, February 23, 2013 at 6:26pm EST

My shoulders hurt like this before I went to NC. My pressures down there this time were 11 1/2 and 16 1/2. I could be wrong, but if my shoulder pain was related to leaking, I would have noticed a difference with one of those pressures? I did not.

Saturday, February 23, 2013 at 9:43pm EST

My head hurts, but not very bad today. My headache can change by the hour. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don't know why.

Saturday, February 23, 2013 at 9:52pm EST

My head hurts everyday, but not very bad today. My headache can change by the hour. I have the same thought many times, that is, I wish I could be around someone that understood so I would not have to put on my happy face for them! No explanation, just a mutual understanding. It would be so nice to live closer. Like I said on FB today, I don't want attention, I want understanding. My shoulders are becoming very tight and painful, especially my right one. My whole body is getting very tight. I have a tendency to get tight because of the obiquities in my pelvis, but I have not been able to stretch as much as I need to for that. My left wrist has been hurting a lot, and I don't know why.

Saturday, February 23, 2013 at 9:54pm EST

Our issues make it difficult if not impossible to have genuine friendships with normal people. My short term memory is awful, especially with verbal conversations.

Saturday, February 23, 2013 at 9:57pm EST

When I left she thought LP may be my problem because I had a fairly severe headache in the back of my head when my pressure was 16 1/2. That's why she patched the hole that Jef put in the week before. Physical therapy can help with tight back muscles. My problem is I have the underlying issue with my pelvis that cannot be corrected which predisposes me to tight painful muscles. [Issue from when she was four.]

Saturday, February 23, 2013 at 9:59pm EST

My self confidence has been negatively affected from 23 years of leaking.

Sunday, February 24, 2013 at 2:07pm EST

I know the feeling of being accused of attention seeking, lazy, a mental case, and so on. I feel sad, depressed, and this increases my feelings of isolation. Sometimes you can tell when a person asks you if they are serious by their voice inflection and body language. [Things which she studied.]

I hear the “maybe you need to get out more”. … When they ask questions about my health, I am very vague and censor myself because anything that I say can and will be used against me.

My pelvic pain is not from my female issues. It is from lax ligaments holding the pelvic bones together. The compensations extend the whole way up and down the kinetic chain.

Sunday, February 24, 2013 at 2:09pm EST

I have not had too many physical diagnosises through my journey. I got blown off as having somatom disorder, major depression, and chronic fatigue syndrome.

Sunday, February 24, 2013 at 2:12pm EST

I cannot say for sure if you are still leaking. I can say that, when Dr. Gray put the hole in my dura in December my symptoms of high and low pressure became the same. Strengthening your core with the help of a physical therapist may improve some of your symptoms. Some of your symptoms may come from deconditioning. Those symptoms a good physical therapist can help.

Sunday, February 24, 2013 at 2:54pm EST

We are not getting much snow. We get a bit every week. You would probably think we get are getting a lot, but we don't. When we were in NC in December one of the Valet drivers thought we drove through nails. He did not realize those were studs in our tires for driving through snow and ice. [He had never seen these and asked me about them.]

Sunday, February 24, 2013 at 4:50pm EST

Other things sometimes hear, “Forget about your headache and get on with your life”, and “Get up and do something, you'll feel better.”

Monday, February 25, 2013 at 2:52pm EST

I don't know if I am in HP or LP. I can't tell if this patch is blown. I wish I could. I increased the Topamax this morning as I was supposed to. The rash on my feet has remained the same since I came home from NC. If it gets worse now, I will know it is the Topamax causing it. The rash doesn't bother me. It's not ichy or anything. I sssooo wish we could sort out LP and HP. It would make things so much easier to deal with.

Monday, February 25, 2013 at 6:04pm EST

I have not had any other adverse reaction to Topamax. I spend all day here every week day alone. It gets lonely. I suppose that is better than being around people that don't get it. I can drive, and have a vehicle. ICP issues prevent me from going many places. I know what you mean about driving when you shouldn't. Sometimes you have no choice but to drive somewhere regardless of how you feel. I have to do that, occasionally.

Tuesday, February 26, 2013 at 11:13am EST

My headache isn't too bad. My shoulders, especially my right one is not calming down. This has not happened before. Myofascial release helps.

I never had PT my shoulder in the past, but had PT for my neck, back, elbow, and headache. Many of the exercises are the same. I began to do those exercises as HP allows. Tendonitis is starting in my left wrist.

I will do everything within my power to avoid going to PT. Going to PT with HP will not end well. I am getting another massage tonight.

Tuesday, February 26, 2013 at 5:11pm EST

I will make it back to exercise, eventually. Anything that increases spinal fluid pressure like grocery shopping (lifting the grocery bags), running the vacuum cleaner, etc are still no no's for me. :'( [No one truly understood how much Karen exercised, and how much she missed it!]

Wednesday, February 27, 2013 at 8:05pm EST

I am having a low pressure headache so if you do not hear anything from me for a day or two, that is why. I hope that I did not blow the patch.

Wednesday, February 27, 2013 at 9:14pm EST

I started taking Topamax when I was at Duke. I did a little research on it. The half life is 19-23 hours. I increased the dose from 25mg twice a day to 50 twice a day on Sunday evening. I pray that my low pressure symptoms today are because the drug is too strong for me.

Thursday, February 28, 2013 at 11:10am EST

I am lying in bed with the netbook. I researched Topamax a little more. The half life is 21 hours with good kidney function, which I have. Steady state is reached after 4 to 5 days in patients with normal renal function. I began the higher dose on Sunday night, so my steady state may have been reached on Wednesday, and the dose was too high. This is what I hope happened, and not that I sprang a leak. I did not take it last night or this morning. My head is slightly better than it was last night. How are you feeling? I wish I had local people that understood. Not because we would talk about this all the time, (we would not) but they would understand if I had brain fog or needed to cancel at the last minute, etc.

Friday, March 1, 2013 at 1:52pm EST

We won't be moving as long as our parents are alive. But, yes, Bob and I love it down there. I'm being treated in North Carolina for intracranial hypotension, or too low of spinal fluid pressure.

The world of modern neurology, which is what cerebral spinal fluid issues fall under, is relatively new compared to other areas of medicine.

Cancer cures and treatments were being fervently worked on many many decades ago because it affects so many and there was a race on to find treatments, and cures. [More people are employed in the search dor treatments (not cures) than actually have cancer.]

Most of the research on Cerebral Spinal fluid issues has been done with past decade. Recently, they discovered that Cerebral Spinal Fluid can be a major influence in dementia, so the pace of Cerebral Spinal fluid research will pick up. [Anyone have a reference?]

Cerebral Spinal fluid problems will become more widely known as this research is done.

I don't think that anyone even realizes the severity of the pain and limitations of intracranial hypotension, or any illness for that matter, until they have experience it so they really can't comprehend the pain that we go through.

Saturday, March 2, 2013 at 3:20pm EST

I think that one of the patches in my dura has blown, putting me back in the low pressure state with the horrendous headache that is there all the time. It's not just the headache. Your brain does not like the swings in pressure changes.

Saturday, March 2, 2013 at 9:47pm EST

I don't think the leak that I sprung causing intracranial hypotension is as big as before.

Saturday, March 2, 2013 at 9:53pm EST

Bob asked me, why don't you have her do another myelogram to find and seal up all your leaks. I doubt she would do another myelogram. She would not, nor would I want her to seal up every leak because the rebound high intracranial pressure would be horrendous.

Sunday, March 3, 2013 at 10:18am EST

I have a LP headache. I stopped the Topamax, and the headache is still there, just not as bad. I think that I blew the patch.

March 3, 2013 at 3:17pm

I had undiagnosed leaks before I became fit. I was never fat even then. In the year 2000, I joined the YMCA. I used the pool. I took chair yoga. That class is more geared toward senior citzens. I am 43. I am trying to do some exercises at home at the moment.

Sunday, March 3, 2013 at 3:21pm EST

I have multiple issues that cause headaches, CSF leaks, the issues that I previously described about my pelvis that throw off my whole kinetic chain, and my period. Yep, my period started a couple days ago. Usually, there is some degree of overlap among the headaches. I think that I can distinguish which is which. Dr. Gray wants me to cut Topamax down to 25mg once a day at night. I think that I might be leaking still. If I do go somewhere, people I know see me out and think that I am doing well because I look so good…

[ “Bob, I just read about Karen in the news paper. {Her obit.}

I am so sorry for your loss, I had no idea she had been that sick! The last time I saw you guys in Walmart she looked better than I remember her in a long time, she did not look like she was in as much pain.

I am sure she is in a better place now, without pain. She was always such a nice person, and she was lucky to have you to take such good care of her, and do all you could to help her relive her pain.” ]

[Please see ”You don't look sick!“ - The Spoon Theory.]

Tips for Dealing with People in Chronic Pain by Ms. Brown.

  • People with chronic pain seem unreliable (we can't count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.
  • An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.
  • Pain can inhibit listening and other communication skills. It's like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.
  • The senses can overload while in pain. For example, noises that wouldn't normally bother you, seem too much.
  • Patience may seem short. We can't wait in a long line; can't wait for a long drawn out conversation.
  • Don't always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.
  • Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.
  • Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others.
  • Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).
  • Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.
  • Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body's ability to feel varieties of discomfort.
  • We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, - it only reduces our ability to give it a label, and to have you believe us.

Monday, March 4, 2013 at 4:06pm EST

Does your neck usually hurt? My always does. It has everyday for as long as I have had headaches.

Tuesday, March 5, 2013 at 9:06am EST

I read your message on the forum about when to give up trying to fix your leaks. … You also said that Dr. Grant no longer wanted to shunt you because leakers have too many problems with shunts. … As for me, I think I have a small leak. My shoulders only somewhat calmed down.

The problem, is my kinetic chain is off because of my pelvis and I have not been able to do those exercises for months. I am slowly starting to exercise again, despite the pain.

Wednesday, March 6, 2013 at 1:37pm EST

I feel like I have a slow leak. My head is not too bad for the first few hours after I get up, but then it gets worse. My shoulders have been giving me trouble, too. I have been feeling more depressed than usual. I am alone all day, every day. [I really wish Karen would have told me how much she was bothered by my absance. I would have taken a different job that had more allowance for working at home often.]

Wednesday, March 6, 2013 at 1:40pm EST

I take 25mg of Topamax once a day in the evening.

Wednesday, March 6, 2013 at 9:46pm EST

I always have some degree of depression. My depression is worse when my headache is worse. I get so depressed spending so much time alone but who wants to spend time with someone that has to moderate their activities according to how they feel when how I feel can change every hour? I cry. I get out of the house as much as can to fight isolation. I try to use distraction to keep myself busy [Learning anything she could learn. I really miss that. :-(]. Sometimes that works, sometimes it doesn't.

Thursday, March 7, 2013 at 3:21pm EST

… I have tons of out of pocket medical expenses myself. :'( Some websites that help me find money in our budget to redirect toward medical bills are http://www.stretcher.com and http://www.savingadvice.com . [Karen's passion was to be frugal.]

Friday, March 8, 2013 at 3:59pm EST

I think leaks are probably not all that rare. They are misdiagnosed as chronic daily headache, transformed migraines, etc. Does Diamox give me a frontal headache? That is a very good question. When I went to see Dr. Gray a few weeks ago was on 3000mg of Diamox. I was sure my pressure was high because all the pain was in front of my ears. In actuality, I was in LP. The doctors around here don't like to prescribe Ativan, Xanax, or drugs like that. Sometimes I think it would be nice to have them through the rough times realizing that we can become physically dependent on those drugs. I know what you mean about not liking to take all the drugs. Do you go to church? I have not went for years. [Hurt to much to sit and not move.] I have my usual level of depression today. It never goes away. It is always there to one degree or another.

Saturday, March 9, 2013

I dont think that anyone even realizes the extent of our illness until they have experienced it so they really cant comprehend the pain that we go through I know that I would never want them to go through this so I am okay with them being ignorant and not as supportive as I would like them to be than make them go through this and actually be capable of understanding I dont know if that really makes sense but I think it does!?!

[I do not know why she wrote those links in this message? Was she thinking a head to me selling the house someday? This *is* typical of Karen's thought process.]

Sunday, March 10, 2013 at 10:51am EDT

I always feel kind of low. The degree varies. I take Amitrypiline (spelling) for depression. I don't remember if I tried Celexa. I know that I tried several. I feel lethargic. Usually, I can make myself do things, but with the patches, I don't know if I should. My husband is home several evenings during the week (not all because he goes to his Mom's house, too, and the weekends. [Actually going to Mom's on the weekend was rather rare?]) I have not tried Ativan. My ICP goes higher when I stress. Right now I think that I have a slow leak. … If I lost my dog, I would be out in my pj's at any time of the night looking for him. We love our pets

Monday, March 11, 2013 at 9:06am EDT

I have one dog. I used to have two, but one died a couple years ago of chronic kidney failure. I could change my mind, but right now I am hesitant to get another one when something happens to Garth. I have felt this way since I began developing chronic tendon issues a few years ago. He is an older mixed breed.

Tuesday, March 12, 2013 at 11:23am EDT

Dr. Gray had me completely stop Topamax. I hope this helps, cause this feels like I blew a patch and am in LP.

Wednesday, March 13, 2013 at 1:19pm EDT

My head feels like a low pressure headache. I talked with the doctor on Monday. I will wait a few more days to make sure the medication is completely out of my system before contacting her again. [This is why I did not want her her taking Dimox later.]

Friday, March 15, 2013 at 7:07pm EDT

I don't think that I feel fluctuations in the weather. I am always depressed, but when my head feels like this, as it has the past several days, I am even more depressed and crying. My pain will go away within about an hour of lying down. In the morning, before I get up I don't hurt until I move. The head pain and neck pain will start when I move my arms or legs. That I don't get because I am horizontal. Is it HP or LP because when I am up, the pain is mostly in the back of my head where it was before I was patched. Diamox and Topamax do not make a difference.

Friday, March 15, 2013 at 7:10pm EDT

I had another massage yesterday. When I was lying face down, she was working on my hips, and that increased my headache. It was the same pain that I have in the morning when I moved before I get out of bed.

Friday, March 15, 2013 at 7:17pm EDT

For all 23 years, my headache went away within a minute or two of lying down. Moving while lying down did not cause head or neck pain. That changed since the patches so I am confused.

Saturday, March 16, 2013 at 5:55pm EDT

I would love to lay down and chat or watch TV with you. Not having anyone around me that understands makes it all but impossible to make friends. You can move to Northwestern PA. :-) When I first developed symptoms, I was still living with my parents. They thought that since the medical tests were all normal that I was making this up. So I could not look for answers. I began looking for answers just after we were married. I never came up with much until I began looking for orthostatic headaches last summer. I didn't think that HP made me any more anxious than I usually am. Sometimes I get so anxious, almost like I am having a panic attack but this happened before I was patched, too.

Saturday, March 16, 2013 at 9:37pm EDT

I would have tried Diamox even if you hadn't mentioned it. That is the only way to know whether it is high or low pressure. I theorize that the patches she did in October are holding, and the patch she did over the hole last month blew. I say that because when I went down to NC last month, at my first lumbar puncture, my pressure was 11 and 1/2 while I was on 3000mg of Diamox without the extra hole. At the second lumbar puncture with no Diamox and the extra hole, my pressure was 16 and 1/2 which felt low. She patched the second hole. I rested at the hotel the following day. We came home the next day. I could not rest like I was able to in October. Since that hole and patch would have been the weak area, I believe that it blew. Am I making sense? I love my family, too. If they had a sudden change of behavior, I would find it suspicious, like they wanted something. The change of behavior would have be long-term, before I fully trusted them. I try to analyse my own behavior in situations with questions like, “What did I do to contribute to the other person doing or saying that?” I feel what sours my relationships are things that I have no control over, like our leaks, and in my case, my issues with verbal conversations and my very stiff posture from my pelvic obliquities. I walk differently than most people, and I feel judged because of that. I read Dale Carnegies, “How to Win Friends and Influence People.” I incorporate those people skills as best as I can with my limitations. I'd love to have deep meaningful relationships with people. I am the kind of person that likes to talk about things, usually more so in writing because of my own personal issues. I feel like I am in LP.

Monday, March 18, 2013 at 9:15am EDT

I am pretty sure that I sprang another leak from my symptoms. Pretend that your dura (the covering of your spinal cord and brain) is a water filled balloon that was patched because it was leaking. You would not want to bend or twist the balloon until the patch had set. That's the same thing that happens with your dura after a patch. Rebound high pressure is another added stress to the patch. [Can someone make a drawing/picture of this?]

Monday, March 18, 2013 at 1:00pm EDT

I am sure that this illness is hard on families, especially those that live with us. Some days, I have no problem believing in myself and that this illness is real. Most days, I struggle with believing that as true.

Tuesday, March 19, 2013 at 6:11pm EDT

I found this on a website. [Which one??] It says it so accurately. Lastly, I want to point out that I DO UNDERSTAND why people don't want to believe the claims of those of us who live with chronic pain (though such unbelief has caused me more suffering even than the terrible pain of my disease).

I actually believe it is a natural protective mechanism - I've experienced it myself. You look at someone whose life has gone to hell in a hand-basket, who has lost everything they cherished, whose life NEVER gets any better, only worse, and you NEED to believe that they had a hand in bringing this on themselves, or in perpetuating it, or you need to believe they are exaggerating, maybe even making it up. Because if all of that misery can befall a totally innocent person…… well, it would stand to reason then that …. that it could happen to ME!

THAT is the thought that is intolerable. THAT is a possibility that most people cannot admit, that they cannot allow to be true, for it would shatter the illusion that life is predictable, that one can count on being rewarded for one's labors and one's vigilence.

For those whose lives are comfortable, who have been richly blessed, that illusion probably is what keeps them going, gets them out of bed in the morning.

I have to admit, it was lovely while it lasted.

Wednesday, March 20, 2013 at 10:14am EDT

I hope that the waiting list to see Dr. Gray next month is not so long that I have to wait until May for an appointment. I eat salt. I am not sure about drinking salt water. I am curious, do you know how ice packs at the site of leaks work? I have some Tramodol. Interesting that it increases ICP. I will have to try that later today. … I haven't had my eyes feel like they were going to pop out of my head since she put the hole in my dura in December. I needed that hole because my ICP was making me go blind among other symptoms. When my pressure was high, I took 50mg of HZTC in the morning and another 50 at night.

Friday, March 22, 2013 at 2:04pm EDT

Your story with CSF leaks, disability … your neurologist is just heart breaking! I can't imagine what you are going through.

I too, wish that certain doctors and the decision makers and the insurance company decision makers would suffer a CSF leak for a month.

Maybe they would have compassion after that!

I don't mind listening to your rants, I 'get it'.

Disability insurance that you get through work is harder to fight denials because of the Employee Retirement and Income Security Act [ERISA].

Without an attorney the chances of overturning the denial are practically zero. The financial saga has no end in sight with mounting medical bills and being unable to work.

Lost income from not being able to work, medical bills, disability insurance company wanting their money back, loosing friends, and loosing our independence, no one chooses this life, yet many 'normal' people treat us like this is our lifestyle choice.

Most 'healthy' people do not believe our stories.

Friday, March 22, 2013 at 4:03pm EDT

Insurance company doctors are not 'independent' when they examine a claimant. Their loyalty lies with their employer…

Saturday, March 23, 2013 at 6:44am EDT

I will reply more later, but found this article on positive thinking and chronic illness.

http://www.psychologytoday.com/blog/21st-century-aging/201212/keeping-positive-outlook-when-dealing-chronic-illness

Thursday, March 28, 2013 at 4:44pm EDT

I went to the Y this week. I missed you. How are things with you?

I go back to North Carolina next week because I blew one or more or the patches she did that prevent spinal fluid from leaking. I can tell from my intracranial hypotension symptoms. I was like this prior to going to the Y this week.

After I come back from North Carolina, it will be many months again before I back to the Y. I cannot remember if I told you why I had the restrictions of no bending, twisting or lifting after the patches.

Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That's the same thing with your dura.

The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unload or load the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching.

Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.

Thursday, March 28, 2013 at 5:52pm EDT

Aww, I am saddened that you have been sick. I too, hope that you can make it back to all your classes next month.

Not bending is easier said than done. That includes normal activities of daily living. Vacuuming, laundry, loading and unloading the dishwasher, grocery shopping, and many more.

Friday, March 29, 2013 at 5:40pm EDT

I have an appointment for April 2 to she Dr. Gray again.

Tendonitis is flaring up on top of my left foot. I know the names of the involved tendons, but can't think of them off hand. The custom Richie Braces do nothing for tendonitis in this location.

Saturday, March 30, 2013 at 9:30pm EDT

I am getting patched again by Dr. Gray on April 2nd.

Saturday, March 30, 2013 at 9:32pm EDT

[When do you think you started leaking?] About 10 days after the last patch.

Saturday, March 30, 2013 at 9:39pm EDT

Last September didn't work. I was back into LP within 24-48 hours. She patched the wrong area that time, my thoratic spine. [That was the first time we ever saw Dr. Gray. None of the tests showed anything to know where to patch.] October she patched my lower back. Boy did I get HP. I maxed out on Diamox and HTCZ and was still going blind among other symptoms. In December, she put in a hole. That helped HP but I still needed Diamox. In February, I thought that I had HP again, she put in another hole. Big mistake. [Karen was sure she had high pressure and kept taking more Dimox when she actually had low pressure.] My face felt like it was imploding that night. A few days later, she patched that hole. I felt like I began leaking 10 days later. My unproven theory is that the new patch in February would have been weaker than the patches from October, so maybe that is the only patch that blew. In February, she patched only the hole she put in a few days earlier.

Saturday, March 30, 2013 at 9:50pm EDT

I have a long-standing problem with depression. It's not your typical depression. I feel better, mentally if I am up and about moving around or exercising.. The depression is still there, just not so bad. After getting patched, I have to rest, not moving depresses me. I know to keep the long-range in mind, but I still get depressed. I think it may be because I have no local support other than my husband. I don't have local friends either, so I sit at home alone after patches. No one around here believes me…

Sunday, March 31, 2013 at 11:40am EDT

… you get more sunshine to help with your depression, than we do here. I do not think sunshine has an effect on my depression. … I can rest and exercise as much as I want without someone thinking that I make myself sick for attention, or some other bizarre idea. … Pets give us unconditional love. I have a dog. I love my dog dearly. I will be heartbroken when he dies. He is an older mixed breed brown dog, named Garth. You can see him in some of my pictures here in FB. The Australian Shepards are no longer with me. They passed away. …

I'd love to get another dog when Garth dies, but I am not sure if I will. The extra house cleaning a dog requires is getting to be too much. Other than my husband, I have no support from anyone. After a blood patch when I have to restrict bending, lifting and twisting, I cannot describe how hard life is without help! I feel guilty that my husband comes home and does things after working a 12 hour day.

Monday, April 1, 2013 at 8:08pm EDT

As for coming to NC? I blew one or more of the patches. I know that because I am back in low intracranial pressure. That's not too unexpected. I have been sick for 23 years, that too will make recovery take longer. She proved that this is what caused the low pressure headache and other symptoms. I cannot remember if I told you why why I had the restrictions of no bending, twisting or lifting after the patches. Pretend your dura (the cover of your brain and spinal cord) is a water filled balloon that you patched because it leaked. You would not bend or twist a balloon until the patch had time to set. That's the same thing with your dura. The restrictions on bending, lifting, and basically anything that gets your heart rate up put extra stress on the patches. Activities like vacuuming, laundry, unload or load the bottom rack of the dishwasher, etc make you bend or lift. The restrictions stay in place for long as I have rebound high pressure, which can be up to a year after the LAST successful patching. Rebound high pressure is another added stress to the patch which is why the restrictions stay in place for so long.

Tuesday, April 2, 2013 at 1:27pm EDT

The doctor checked my pressure with a lumbar puncture. My intracranial pressure was too low, which confirmed my symptoms. She added artificial cerebral spinal fluid. The increased pressure relieved the symptoms immediately. She did one glue and blood patch in the area that is most likely leaking. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places that are leaking. She doesn't want to patch too many places at one time because the rebound high pressure will be uncontrolable.

Tuesday, April 2, 2013 at 3:03pm EDT

My pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of Elliot B. The increased pressure relieved the symptoms immediately. She did one glue and blood patch where I had the hole and subsequent blood patch in February. If low pressure symptoms come back the rest of the week, she will do another lumbar puncture and patch more places.. She doesn't want to patch too many places at one time because the rebound high pressure will be uncontrollable.

Friday, April 5, 2013 at 3:01pm EDT

On Tuesday, my pressure was 13 and 3/4. My pressure the very first time I was here was 14 1/2. She added 10cc of artificial CSF and my headache instantly went away. She did one glue and blood patch where she put the 20 gauge hole and subsequent blood patch in February. The LP headache came back, so she did more blood and glue patches today. She did not check my pressure. How are things with you?

Friday, April 5, 2013 at 3:41pm EDT

It doesn't seem to ever end. I have been dealing with this for 23 years.

Friday, April 5, 2013 at 3:47pm EDT

How am I able to function? I push myself. I try to ignore it. I make myself exercise. Mentally, I love to exercise. We will stick around until at least Monday. That way, we will know whether I need to see her again on Monday.

Friday, April 5, 2013 at 4:13pm EDT

As for exercise, I found that too much or too little make me worse. I still have a lot of pain when I exercise, but that is the lesser of the evils. Thanks for keeping me in your prayers.

Saturday, April 6, 2013 at 1:42pm EDT

The doctor patched my dura (the covering of your brain and spinal cord) in more places yesterday. So far, that helps my low intracranial pressure symptoms, as it has in the past until I spring new leaks. Too high intracranial pressure symptoms take a few days to kick in, so they have not begun. It's possible that I have an inherent weakness in my dura, that is responsible for chronic leaks. If you ever had myelogram and got up too soon, you know how severe and disabling a low intracranial headache is. Too low of intracranial pressure (intracranial hypotension), and too high of intracranial pressure (intracranial hypertension) have different, but equally debilitating symptoms. [Sometimes the Hypo and Hyper symptoms are hard to tell apart.]

Saturday, April 6, 2013 at 3:58pm EDT

I am sending this to you because CSF leaks (that I keep coming to Duke for) cause pseudo-chiari with the same symptoms as chiari. Chiari is not always benign.

Sunday, April 7, 2013 at 9:05am EDT

Dr. Gray used glue this time. During the previous trips, she used blood. I have a headache today. My period began a couple days ago. I am not sure if this is a leaking headache, or a hormonal headache. My period causes headaches too. I took Zomig a little bit ago. That usually works for my hormonal headache and does nothing for my leaking headache. It takes a few hours to work. I should know in a few hours what kind of headache this is.

Sunday, April 7, 2013 at 4:10pm EDT

I am still in NC. She did one blood and glue patch Tuesday. She added artificial cerebral spinal fluid. The extra fluid takes away the pain instantly, like magic. She did not patch all the leak sites because we are trying to lessen the rebound high CSF pressure. By Thursday, I was back to the low pressure CSF state. Friday, she patched a few more places. Saturday, I was better. Today, things are not so great. My period started on Thursday, so I am not sure what symptoms come from my everyday problem, verses my hormones. If I feel that I need it, she will try patching more holes in my dura The dura is the water tight covering of your brain and spinal cord that holds the cerebral spinal fluid. I think that I am going to trade in my dura for a new one.

Monday, April 8, 2013 at 9:32am EDT

Dr. Gray did one blood and glue patch and added Elliot B last Tuesday. LP came back by Thursday. Friday she did more patches, but did not do an lumbar puncture. Saturday, I had no headache. Yesterday it came back. Diamox makes it worse.

Monday, April 8, 2013 at 5:39pm EDT

My sister told me that someone she works with is having Chiari surgery at the end of the month. I tried to educate her that Chiari might be this persons problem BUT CSF leaks cause a pseudo-chiari. In this case the imaging studies will show chiari but unless the radiologist reading the films and/or doctor believe in CSF leaks, chiari surgery many not help this person. She didn't seem convinced. Oh well, at least I tried.

Tuesday, April 9, 2013 at 8:07pm EDT

My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.

Tuesday, April 9, 2013 at 9:00pm EDT

I saw the doctor again today here at Duke because my symptoms increased. I talk about my headache the most because spinal headaches are horrendous pain wise, but that is not the only symptom. My pressure today the lowest it has ever been. She patched areas today that she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue today to stick. She said that may happen. She said the one sneeze I had on Saturday night could have blown some patches. Sneezes are known to cause leaks if your dura is weak. I did not ask her, but another possibility is a cyst on my dura that did not show up on my initial myelogram burst. That's what recently happened to someone with my problem on Facebook. If my symptoms come back within a day or two, I will purse the burst cyst idea with her. I have cysts on my dura [I am unsure about that?]. Burst cysts usually require surgery that is not done at Duke. The type of surgery that is best done in Los Angeles, CA. She gave me 8 patches. I had more needles in my spine because each patch required 2-3 injections of lidocaine in 2 or three places. I did it without sedation because the pain from the headaches is not nearly as bad as the pain from all those needles.

Tuesday, April 9, 2013 at 9:24pm EDT

Yes, my hubby works from here. Thank you for praying for me everyday. I do the same for you. The daily headaches have been this severe for over 23 years. This is why I don't have close friends… That pain affects every part of my life, and daily functioning. I don't talk about it too much with others because they believe that I make it up for attention, am a complainer, it's mental, or I am lazy. The research into this condition has just taken off within the last decade so it is not well known and does not get the same respect as conditions that have been around for decades. The doctor can add artificial cerebral spinal fluid, and my headache instantly goes away, like magic for about 24 hours. That's how long it takes for the fluid to leak out.

Wednesday, April 10, 2013 at 4:39pm EDT

… I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big.

Wednesday, April 10, 2013 at 7:52am EDT

I saw Dr. Gray yesterday. My pressure today was 10. That is the lowest it has ever been. I knew my pressure was either too high or too low from my symptoms. Last Friday she did patching, but no lumbar puncture so she did not measure my pressure or add Elliot B. I had a headache after the procedure Friday. On Saturday, my headache was gone. Saturday evening I had one sneeze. Sunday the headache was back. She added Elliot B today, so that currently helps with the headache. She patched areas today she did not patch last week, and re-did the patches she did last week. I asked her if the glue from last week might make it make it harder for the glue to stick. She said that may happen. She said the sneeze could have blown some patches. I did not ask her, but another possibility could be a cyst that did not show up on my myelogram burst.

Wednesday, April 10, 2013 at 11:43am EDT

I assume it was my single sneeze that popped a leak because I was feeling better until that happened.

Wednesday, April 10, 2013 at 11:44am EDT

For me, lack of movement is just as bad as too much movement. Both cause pain.

Wednesday, April 10, 2013 at 11:46am EDT

For now, we plan to stay in NC until Friday morning, unless I start leaking again.

Wednesday, April 10, 2013 at 5:09pm EDT

I have been lying down the whole time since she patched me. So I cannot say that I feel much different. No HP, so far. I am scared that when I blew the patches Saturday, that perhaps the glue tore a bigger hole my dura when the patch blew. The glue she put in yesterday may have covered the hole, but when that glue is gone, I might leak again because the hole is so big. She did not say any of this, but it is my fear.

Thursday, April 11, 2013 at 11:52am EDT

We will come home tomorrow. I spoke with Dr. Gray. She wants to rule out POTS with a cardiologist at home. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. The hallmark symptom of POTS is an increase in heart rate from the supine to upright position of more than 30 beats per minute or to a heart rate greater than 120 beats per minute within 12 minutes of head-up tilt. Exercise intolerance is common. She is not convinced that it is hard for me not toe exercise. I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. … Yes, it is heart breaking to read the boards…

Thursday, April 11, 2013 at 12:44pm EDT

My massage therapist agrees that I do not have POTS. She sees me get up off her table and roll over. She has a Masters and two Bachelors degrees all in health related fields so she knows what she is talking about.

Thursday, April 11, 2013 at 1:06pm EDT

My headache is starting to come back. Dr Gray is not convinced that it is hard for me NOT to exercise. [Karen *LOVED* to exercise, she did it almost to the exclusion of everything else, until she could not do it and not blow patches.] I can go from lying down to immediately exerting myself without feeling faint, with POTS that would be impossible. I do not believe that I have POTS. I believe that I have a leak that is not on my myelogram she did last fall. I don't know what to look for in a cardiologist. [POTS tests were never done.]

Thursday, April 11, 2013 at 1:14pm EDT

Most, if not all, doctors in my area have a several month waiting list. I know that I do not have POTS. I want to get tested as quick as possible, so we can get back to finding the leak. I believe that I need a new myelogram.

Thursday, April 11, 2013 at 2:07pm EDT

I am frustrated. I KNOW that I do not have POTS. My internet research says a tilt table test is the standard for diagnosing POTS. Putting weight on my ankles 30-45 minutes for the test will flare up my tendonitis.

Thursday, April 11, 2013 at 5:13pm EDT

Who ordered your POTS testing? My headache instantaneously went away when she added Elliot B…

Thursday, April 11, 2013 at 9:17pm EDT

Both my opening pressures this trip were less than my opening pressure the first time I saw her. Apparently I am not leaking, like I was the first time… I feel trapped between damaging my ankles further, and getting tested for POTS. I KNOW this is a leak. Elliot B relieved my headache for a day both times she gave it to me this trip. I am frustrated and trapped. [POTS testing required that she damage her ankles due to here tednities issues that were covered above in 2004.]

Thursday, April 11, 2013 at 10:43pm EDT

… I am not resistant to getting tested for POTS. I am resistant to getting any test that pushes my ankle tendons further than their limit. [

skateboard.jpg

She would be unable to walk again, like the year of 2004 when she crawled around the house on a skateboard and carpet layer knee-pads so that her ankles would heal.] … My headache is back just as bad now as it ever was. It came back a day or two after each patching this trip. This is why I believe that I have new leaks not on the myelogram from September. I just don't know what to do.

Saturday, April 13, 2013 at 1:36pm EDT

I am 'chronicheadache' on http://www.csfleaks.org. I rarely post there because it is searchable by Google.

Saturday, April 13, 2013 at 9:39pm EDT

My hubby called Dr. Gray today. She is not sure, but she thinks it's possible that some of the fibrin got into my CSF and irritated the lining of my brain. She said that happened to one other patient. She called in a medro dose pack prescription. That's where you take a bunch of steriods in the beginning and taper down over 6 days. Couldn't she see that on the CT as they injected? I am not convinced that that is the problem, but we will see.

Sunday, April 14, 2013 at 7:25pm EDT

Both doctors have successes and failures. I wish there was not such a divide on the group between doctors. I won't participate in those threads. We are all in this to get better and provide support, regardless of what doctor we chose.

Tuesday, April 16, 2013 at 3:01pm EDT

My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. My head feels the best if lie down with it being the lowest part of my body. I am not taking Diamox. … Diamox makes me worse. Both times she added Elliot B this month, I had complete headache relief for about a day.

Tuesday, April 16, 2013 at 3:10pm EDT

I hear your indecision when it comes to going to L.A. What to do? I wish there was an easy answer. It's hard to spend all that money and not get any answers, or get worse. I am working on getting my stuff together for Dr. S. I thought that I had the Duke myelogram, but it looks like I have only the CT needle placement disks. [We did have them. Duke seems to label the disks strangely. Make sure you *always* request a copy of your imaging and all of your reports. Also keep written notes, if you can, as things sometime don't make the records. I'll be putting Karen's images on here website so people can study them and hopefully learn something, not sure what?]

Thursday, April 18, 2013 at 9:51pm EDT

I am doing terrible. I don't have much upright time. If I try to stay up very long, I would collapse. Until, I lied down for several hours, my vision would be awful, and I would be dizzy, and the nausea would increase. My head feels like it is imploding. Each time Dr. Gray added Elliot B this last trip these symptoms went away for about a day. Each time she measured my opening pressure this month, it was less than it was the first time that I saw her last fall. … I know my pressure is just as, if not lower than it was. Diamox makes me much worse. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don't know how to manage myself.

Thursday, April 18, 2013 at 9:44pm EDT

Nothing new with Mom today. I feel awful. I can feel my brain resting on the nerves to my eyes. My face and scalp burn. My head is imploding. I am nauseated, and many more symptoms. My Mom has underlying advanced pulmonary fibrosis which is terminal. It's not the pulmonary fibrosis that kills her, but the complication of pneumonia. Every time she gets pneumonia, we think of that. Thanks for telling me that I should not be upset with myself for not being there. I feel so guilty over not being there … Since coming back from Duke, I have crying spells everyday. My pressure is very low because I am having eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. I don't feel like this when my pressure is slightly low. When it is slightly low I have a very bad headache in the back of my head near my neck. Right now the pain is all over my head. The pain is horrific. It affects everything, more so than before. I have no way to stop the pain. I don't know how to manage myself. I have no where to go for the eye issues, ear issues, and the headache or my head feels like it is imploding with horrendous pain. Bending over makes me feel like I am going to fall. … I think she agrees to the large volume blood patch because I am not going away. I can't. I am too sick. I have crying episodes everyday since coming home because the pain is SO bad! Enough about me.

Friday, April 19, 2013 6:21 AM EDT
From: Karen Paddock
To: Dr Gray
Subject: horrific pain

Headache and other symptoms are horrific. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. My pressure on the 9th, was lower than my pressure last fall when I first saw you.

Thanks,
Karen

From: Dr Gray
To: Karen Paddock
Sent: Fri, 19 Apr 2013 14:25:41 -0000 (UTC)
Subject: RE: horrific pain

12:30 Tues ..I put you on…

Friday, April 19, 2013 at 8:10am EDT

We have such important decisions to make, and don't know what right decision is. No guarantees that anything will help. We are scared. I am thinking about going to Dr. S. too. Some of his patients with crappy duras go back multiple times because they keep springing new leaks. … My headache and other symptoms are horrific. My head feels like it is imploding. The pain is horrendous. My eyes are very light sensitive. Every time I move my head, I am dizzy and my eyes go funny, and my brain feel like it is hitting the inside of my skull. My vision is blurry. I find it difficult to accept that 3, 250mg Diamox taken 2 days prior to my pressure check on April 9 lowered my pressure more than 3000mg taken daily did when I had a pressure check in February, unless I am currently leaking. …

Friday, April 19, 2013 at 9:48pm EDT

I am home, but leaving again Monday. Each time the doctor at Duke added artificial cerebral spinal fluid earlier this month, the symptoms in the next paragraph went away for about a day. Each time she measured my opening pressure, it was less than it was the first time that I saw her last fall. She patched everything that looked suspicious from my September myelogram with over 3 rounds of patching earlier this month. She didn't patch everything all at once because the rebound too high intracranial pressure gets too bad. Well, no high pressure developed as it should have. I went right back to low pressure and the associated symptoms. I have many symptoms of too LOW of intracranial pressure. I am home, but leaving again Monday. My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms.

Friday, April 19, 2013 at 9:54pm EDT

Because my symptoms are so horrendous, Dr. Gray is working me in on Tuesday. I am still considering Cedars.

Friday, April 19, 2013 at 10:12pm EDT

I am not sure what I would have done if I couldn't have gotten back to Duke. Like you, I daily tolerate pain that would make others pass out…we have no choice. But after this last trip, the pain got so much worse. Pain meds don't help.

Saturday, April 20, 2013 at 7:37pm EDT

I have about reached my limit with the intensity of pain that I can tolerate.

Earlier this month, she did three rounds of patching in my spine. The largest round was 8 patches. Each patch consists of 4-5 injections (3-4 injections of a numbing agent, and 1 blood and glue patch.

I go through the procedures without sedation because the pain from that many needles in my spine is not as bad as the pain that I feel daily.

So when I complain of pain as I have recently, it is really bad.

My head feels like it is imploding with horrendous pain. My eyes get funny. Bending over makes me feel like I am going to fall over. Blurry vision, ear issues, and other symptoms. These symptoms are an every day thing now.

The doctor did a couple lumbar punctures earlier this month Both opening pressures were lower than the first time I saw her last fall. Both times, artificial cerebral spine fluid infusions temporarily relieved symptoms for about a day.

The low opening pressures and artificial CSF infusions are evidence that I have continued leaks.

Sunday, April 21, 2013 at 9:59am EDT

The thing with an abdominal binder is if worn too long, your core muscles will become weaker.

Sunday, April 21, 2013 at 7:20pm EDT

I am going to Durham tomorrow. My pain is bad. The abdominal binder helps, but does not relieve it. Another reason that I feel down regularly is lack of socializing with others. I don't mean on Facebook but in person. I have only one physical friend. It seems like when I talk with others, that I am the one to initiate contact. They don't. Maybe I say or do things that they interpret in a way I do not intend? I wish I knew. I read the Dale Carnegie book, “How to Win Friends and Influence People”. My condition limits what I can do to get out and socialize. It's lonely. I know you understand. I don't get help from others while recovering from patches, either. Oh well, I don't have to return the favor when they don't do anything to help.

Tuesday, April 23, 2013

We do not end our lives because we want to die. Because we are depressed. We NEED THE PAIN TO END. [This was in Karen's Draft Outbox it was not addressed to anyone. She used this Draft Outbox as a type of Journal for notes to herself.]

Tuesday, April 23, 2013 at 7:58pm EDT

… the doctor did a pressure check. My pressure was 10.5. The first time I saw her it was 14.5. … She did a new myelogram. She wasn't talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. The PA did 9 patches. I may go back later this week. I am supposed to rest in bed for 5 days. When I am home, I can't rest like that because I don't have support.

Wednesday, April 24, 2013 at 8:57am EDT

… The pressure check confirmed [I was leaking]. My pressure was 10 1/2. The first time I saw her it was 14 1/2. She did a new myelogram. She wasn't talking to me but I heard her make a comment that she saw something on this myelogram that she did not see on the older one. Jeff did 9 patches. Dr. Gray told us not to leave town in case I need to come back. … I am supposed to rest in bed for 5 days.

Wednesday, April 24, 2013 at 9:51am EDT

When I heard her say that she saw something she had not seen on previous myelograms, I did not say it but thought to myself I knew that I was leaking because I know my body.

Wednesday, April 24, 2013 at 9:51pm EDT

My intracranial pressure was one of the lowest readings ever yesterday…objective evidence of more leaking.

She did a new myelogram, and found new leaks. My last myelogram was September. She told us not to leave town for a few days I need to come back. Developing new spontaneous leaks since September concerns me.

I usually don't complain about the pain being so bad, but it was horrendous.

In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head.

I'll know more tomorrow and the next day how I feel, since she pumped up me up with with artificial cerebral spinal fluid. My back hurts a lot from the patches, but I expect that.

Wednesday, April 24, 2013 at 3:10pm EDT

Developing spontaneous leaks since last September concerns me. I usually don't complain about the pain being so bad, but it was horrendous. In addition to the pain, my eyes were light sensitive, I was dizzy, nauseated, and my brain felt like it was hitting the inside of my head. I'll know more tomorrow and the next day how I feel, since she pumped up me up with Elliot B. My back hurts a lot from the patches, but I expect that. Bob has not called a chiropractor. He said his back currently doesn't hurt as bad as it did.

Friday, April 26, 2013 at 11:32pm EDT

I am back in LP…It's not as bad as it was before I saw Dr. Gray this time. Dr. Gray is going to do more patching on Tuesday. Oh well, at least my pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram [In September], but I have new spontaneous leaks. [I'm not sure sneezing counts as spontaneous?]

Saturday, April 27, 2013 at 11:58am EDT

Listening to Mom talk about her death, and what she wants is very hard. I do not to discourage her from talking about it. I don't tell her that it's not that bad. I don't want her to feel that I minimize her feelings. She talks about how no one knows how much she suffers. These conversations would be difficult if I was healthy. Things are all the more harder, when I have the same emotions with my own long-standing illness.

Saturday, April 27, 2013 at 12:37pm EDT

I feel like giving up. Dr. Gray has not found the right area to patch. Things keep happening with Mom. Life is depressing. The illness is not well known, so we get no respect from others. I have a hard time dealing with that, especially now when I am *expected* to do things. I don't talk about my problem all the time because no one wants to hear that. Chronic CSF leaks just get to be too much for me. You said it better than I could when you said life circumstances which we can't take care of business because of our limitations are really hard.

Saturday, April 27, 2013 at 1:42pm EDT

I am in LP, but I don't think that it is as bad as before. Dr. Gray is going to do more patching on Tuesday. I don't think that I am blowing them. I think she just didn't find the right location. My pressure check on Tuesday and new myelogram substantiated my recent complaints. I had no trauma since my last myelogram, but I have new spontaneous leaks. …

Saturday, April 27, 2013 at 1:56pm EDT

Making the decision what to do treatment wise is difficult. I, like you, sometimes procrastinate thinking if I wait the problem will go away on its own. If this next round of patching doesn't work, I will contact Dr. S. If I went to L. A., it would be nice if I found someone on the forum to share a hotel room. Rooms usually hold 3-4 people so my hubby and I could share with someone. They seemed surprised when my pressure came back low. … I'll see what the difference is when the myelogram results are on my Duke Healthview online account.

Saturday, April 27, 2013 at 1:57pm EDT

You are SO right when you say that we know our own body and have to be our own advocate! [YES! Study and learn all you can, so you are an informed patient.]

Saturday, April 27, 2013 at 2:44pm EDT

The doctor is going to patch more areas Tuesday. If she can't get this under control soon, I am going to see a doctor in Los Angeles, CA. He is doing research, too.

Sunday, April 28, 2013 at 4:07pm EDT

I don't know about doing a whole dura transplant, but the Dr. in LA specializes in replacing sections of dura.

Sunday, April 28, 2013 at 4:02pm EDT

Thanks for praying hard for me about Tuesday.

This will be the 5th time this month that I am patched. I began seeing Dr. Gray in September. She patched me in October and I went into HP.

HP stopped me in my tracks from doing anything. LP does too, but in a different way.

LP and HP requires me to rest between activities. Both affect my ability to do activities of daily living. I try to keep myself in shape physically, but it's not easy. My husband is my only support…

Monday, April 29, 2013 at 6:13pm EDT

I am back in LP. My head is imploding, dizziness, the pain is out of this world. I hope that Dr. Gray does not give up on me. I am worried. I see her tomorrow at 1pm.

Tuesday, April 30, 2013 at 2:43pm EDT

I saw Dr. Gray today. She did nine patches. She injected a combined total of 30cc of blood and glue into my epidural space to prop up my pressure. My back pain is pretty bad at the moment, but my head feels great. I took pain medication a little bit ago for my back. She didn't think that I was leaking. She mentioned Dr. Schievink's dural reduction surgery.

Tuesday, April 30, 2013 at 5:10pm EDT

… We'll see what these new patches do before deciding what to do next. In December when I was here for HP, she said that I had a stretchy dura. Tuesday my pressure 10 and 1/2 was lower than my pressure in February. In February, I was taking 3000mg Diamox and my pressure was 11 1/2. I am very scared. My headaches now are worse than they were when I began seeing her last Fall. Last September my pressure was 14 1/2. Did the few months that I had HP stretch my dura. I want to baby the patches that I got today, but I don't know how to do that with Mom. The stress of my Mom's latest episode didn't cause my headaches to get worse. They were worse before that. [Karen's mother is very ill, and still is, down to 87 pounds. Karen was always worried that her mother would die when we were out of town for Karen's treatments. This added a lot to Karen's stress level. Worries that in the end were wasted because her mother is still here and Karen is not. Shows how pointless it is to worry about the future!!]

Tuesday, April 30, 2013 at 5:14pm EDT

I was on no Diamox for my pressure of 10 and 1/2 Tuesday. Unlike February when I was on 3000mg of Diamox and my pressure was 11 and 1/2.

Tuesday, April 30, 2013 at 5:21pm EDT

I do not have HP now. Thanks for asking about my Mom. She is doing the same as yesterday. We will probably go home on Thursday or Friday. Bob is with me. He brings his work with him.

Tuesday, April 30, 2013 at 8:37pm EDT

She thinks that my dura stretches like latex, whereas other people have a dura like mylar that does not stretch. Someone can have a stretchy dura, be unable to make enough CSF to fill it, NOT be leaking, and have a low pressure headache when upright. When said person is lying down, they would have no headache, but when they are upright all the CSF would flow out of their head and into their spine. Giving the person a low pressure headache even though they are not leaking. Back in December when I had a problem with high pressure causing blindness and other weird symptoms she told me that I had a volume problem rather than a pressure problem. My brain had no problem filling my stretchy dura then. My pressure was 20 in December. My pressure was 10.5 this trip. How come my body now has trouble filling my stretchy dura, if I am not leaking. I don't get it. I am very scared!

[Sometime around this time frame Karen tells me that “I thought I'd be healthy by now and on the way to being healed so we'd have a life”.]

Tuesday, April 30, 2013 at 9:28pm EDT

I have a high pain tolerance and usually push through, but not with this pain. I took pain medicine. I don't know what she saw different. I didn't ask because I wanted the new myelogram… I'll wait until the record is online and read it. It is confusing that my pressure is lower now without Diamox. That's why I think that I was leaking. [Understand that what Karen would tolerate for pain would have most of the population of the world as withering screaming bawling balls of flesh flopping around on the floor. :-( ]

Tuesday, April 30, 2013 at 10:10pm EDT

Dr. Gray didn't do a large volume patch, like she said she would. She did targeted patching. A student did 9 patches. The total volume of blood and glue was 30cc. This total volume would be like adding 30cc of Elliot B. I didn't ask, but I assume she could see my stretchy dura on the myelogram. I think Dr. S's new procedure where he inserts a catheter to put pressure on the dura sounds less invasive than dura reduction surgery. I remember reading on the forum that Dr. S discussed it with them. She didn't do an OP this time, but know it was low. I was fine with out getting another hole poked in my dura. I plan to lay flat all day tomorrow. We might go home on Thursday. I'll recline the seat, although it doesn't lie flat.

Wednesday, May 1, 2013 at 9:31am EDT

I am definitely in HP now. I want to take a little Diamox, but Bob said no until I talk with her. I sent her an email this morning, and just left a phone message because it's getting worse. [I did not want her taking it because of how she could not tell them apart in February, and taking it could have complicated any testing Dr. Gray might want to do. In the past we had to wait days for the Dimox to get out of her system, see above. In the end I was wrong and Dr. Gray told her to take Dimox.]

Wednesday, May 1, 2013 at 9:44am EDT

I ate this morning, but I am starting to feel like throwing up. HP makes me fill like throwing up. LP does not. When I pack my medication, Bob grumbles that I take so much. [Poorly arraigned in several plastic bags. I like things to be organized so they can be found in an emergency.] I remind him that I take only three medications. I bring the rest because she may prescribe them again. Why pay for another prescription when I already have it.

Wednesday, May 1, 2013 at 10:10am EDT

When I had a misdiagnosis of rheumatoid arthritis, I took 5mg of prednisone daily for 5-6 years. It made me gain weight.

Wednesday, May 1, 2013 at 11:54am EDT

She just replied to my email and said to try Diamox. I know this is HP because LP never made me nauseous in the past, but HP does. I had to take Zofran earlier today. Every other time this month she patched me, I felt good for about 24-48 hours than went back to LP, a second reason that I believe this is HP.

Wednesday, May 1, 2013 at 2:27pm EDT

… I feel that they are both doctors researching this condition and want to help patients. I feel terrible, and just threw up. I sent Dr. Gray a message. She is probably sick of hearing from me.

Wednesday, May 1, 2013 at 3:42pm EDT

Zofran did not help. I have another anti-nausea medication here that starts with a p, but haven't tried it. It didn't work in the past either. I took a 250 Diamox almost an hour ago and don't feel much different. I am tempted to do what I did before, take one 250 every hour until I feel better, but she did not say to do that.

Wednesday, May 1, 2013 at 5:17pm EDT

The last time that I had HP, I felt better up for an hour or two, then I felt worse. Propping myself up on pillows helped. Not so this time, which I don't understand. This time, I feel bad upright and lying flat. So far, I've thrown up twice. I am trying to be real careful throwing up to keep from blowing a patch. I would try a cold wash cloth, but housekeeping took our towels this morning, and hasn't brought them back. I don't know any pressure points. Are pressure points in the same place for everyone? I appreciate your helpful suggestions. If you have any more, let me know. I should have only taken Diamox twice, but since it came right back up both times, I've taken it a total of 4 times.

Wednesday, May 1, 2013 at 7:54pm EDT

HP is out of control. I've kept almost nothing down. I even threw up Diamox a couple times and had to take it again. Zofran is not all that helpful. I talked with Dr. Gray. She said that I can take Diamox every 3-4 hours. I am not sure that is enough. Last fall it took 5-6 weeks after patching for HP to get out of control. Not so this time. HP is out of control the next day.

Wednesday, May 1, 2013 at 8:49pm EDT

Rebound high pressure blew out my previous patches in either February or March. Those patches held since September. The patches blew out after 5 months of being sealed. So all the activity restrictions are in place again… The last time, I tried all three medications that reduce pressure. My brain makes so much spinal fluid that wasn't enough. I started one of the medications today at a pretty high dose, but I am still vomiting, among other symptoms, from the pressure. High pressure has it's own symptoms, including a different, but just as severe headache, eyesight changes, and others. Living with a spinal headache for nearly 24 years certainly changes my perspective.

Thursday, May 2, 2013 at 11:02am EDT

The covering of my brain and spinal cord that is supposed to be water proof to hold the fluid is poor quality. Not sure anything can really be done about that.

Thursday, May 2, 2013 at 4:49pm EDT

It's the feelings of isolation from not being able to exercise as much as I like that get me down. My back is very stiff and I walk a little different, I think that that turns off a lot of people. My stiff spine/neck makes it appear like I am being very direct and serious when I talk, even if I am not. I know what you mean about convincing yourself that people will be better off without you. Anything below my pressure being 16, I have a LP headache, but when my pressure gets down to an 11 or less, the pain does not go away upright or lying down, and my vision becomes affected. This last trip to Dr. Gray, my pressure was 10, I don't know what I will do if that happens again. I rarely have sinus problems. If I do, it's a head cold. I have allergies, but they have never given me a headache.

Thursday, May 2, 2013 at 6:36pm EDT

I have slight HP. It's HP because putting on my binder makes it worse. Dr. Gray said that the extreme HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten extreme HP immediately after her procedure, and not 6-18 hours later. I think the extreme HP went away because I blew a patch in my sleep.

Thursday, May 2, 2013 at 6:39pm EDT

We are going home tomorrow.

Thursday, May 2, 2013 at 6:51pm EDT

I am thinking about going to LA. If this doesn't work, that's the next step. She injected a total of 30 cc of blood and glue into my epidural space. Even if I am leaking, that much volume would displace CSF in my dura and raise my pressure. I think glue stays in there about a month. I plan to have all my stuff ready for Dr. S before then. If we went to LA at the same time, we could share a room. Hotel rooms hold 3-4 people, so our hubbies and us could share a hotel room to lower costs. Prices in LA are insanely expensive. [Actually we found them to not be as bad as we expected, other than the $4.59 gas prices. I walked a lot and Karen took taxi.]

Thursday, May 2, 2013 at 8:47pm EDT

I have slight HP. It's HP because putting on my binder makes it worse. Dr. Gray said that my VERY HP may have went away because my body absorbed the liquid part of the blood. I think that might be part of it, but not all of it. If that was all of it, I would have gotten very HP immediately, and not 6-18 hours after the procedure.

Friday, May 3, 2013 at 6:36pm EDT

It's not in my head, because the fluid drained out. We came home today. The low pressure symptoms have all returned. I know the testing at Duke will not show certain problems with the dura (covering that holds in the spinal fluid). I am thinking that I have something like that. I am not sure, but Los Angeles may be next.

Friday, May 3, 2013 at 6:43pm EDT

I came home today. The low pressure symptoms have all returned. I just don't know what to do anymore. I saw Dr. Gray 5 times this month alone. My OP's were lower than they had ever been. I am SO DEPRESSED! Something is wrong with me.

Thursday, May 2, 2013 at 9:11pm EDT

Depression and anxiety is what I was diagnosed with for all these years.. You're not going crazy.

Thursday, May 2, 2013 at 9:16pm EDT

It's not the healthiest thing to do, but I've learned to put on a happy face to fool people. Now it took me about 15 years to learn that. My hubby did not go into the procedure room with me. [I don't like needles. There are also sterilization issues.]

Friday, May 3, 2013

Until someone has it they will never understand what it is like to have burning,stabbing,dull,pinching,pulsating,gnawing severe pain every minute of every day…

me my health problems are BORING. All we can do … is back away from toxic people. They just don't have coping skills to deal with chronic illness. If it can happen to YOU it can happen to THEM and that's scary. I think illness in anyone forces people to look at their own mortality. So it's not you it's them. But that article I posted “12 tips for 12 years sick” mentioned something about learning to be the kind of friend that does not always talk about their health problems.

I then realized that it is crucial never to use the word headaches while discussing our condition. Practically everybody has experienced one and related to us on those terms. Thus they do not sympathized, nor understand what we feel. Even my gp had no sympathy for almost a year, until he saw it was affecting my senses and balance.

To people like that I stress that it is a neurological condition, that feels more like the aftermath of being hit with a baseball bat whenever I get up.

I lost my friends over this also. They just didn't understand and the drs not giving me a diagnosis for years didn't help matters. i hope youre day gets better.

I think we all experience it. nobody knows how to deal with someone when the going gets tough. they tend to suck back into their own lil world where nothing is wrong. they see us like this for so long and think there's no way it can go that long without being fixed.

I’ve also written about this before, but there’s no denying it: friendships and chronic health problems often don’t mix. Some of my friends have disappeared; others have stayed around, but our relationship has been changed by my illness.

As for friends who haven't stuck around, our friendship may have faded away for any number of reasons. I’ve decided it’s about them not me. Illness may raise their own fears about health and mortality. They may not have the patience to stick with a friend who’s become so unreliable (I often have to cancel at the last moment – my friends who’ve stuck around are fine with that).

http://www.psychologytoday.com/blog/turning-straw-gold/201305/12-tips-12-years-sick

Just as being always negative is bad, so is always being positive

Friday, May 3, 2013 at 10:34pm EDT

[They know] my problem, but like most everyone else, they don't realize or believe how debilitating CSF problems are.

Seems most everyone that I tell may not say it directly, but they think that I am crazy for going so far for medical care. Then when that care doesn't fix me, there belief that I am crazy is confirmed.

Bob has an aversion to caffeine, so all we have in the house is a little bit of caffeinated Tea, which didn't help last week when I drank one cup of it. Some people simply have a stretchy dura.

I would think that if my CSF was quickly absorbed, HP would not have occurred nearly 24 hours after she injected 30cc of blood and glue. I discovered through my own research that CT myelograms are not good at finding high-flow leaks. The myelogram portion of the test is first.

By the time the CT portion is done, the contrast has equalized in the dura and wherever it's leaking. I wonder if that is my problem. Digital subtraction myelograms like Cedars has, are much better at locating high-flow leaks, but they too miss some. Thank you for your supportive and kind words. They mean a lot to me. I feel so much like giving up. No one locally understands.

Saturday, May 4, 2013 at 1:00pm EDT

I am home from Duke, and so disappointed.

I saw Dr. Gray 5 times this month. The times she checked my pressure it was at record lows for me. She added artificial CSF and did blood and glue patches. I had instant relief of my pain and other symptoms for about 2 days after each procedure. I am now back to where I started. I had a different reaction to the procedure she did on Tuesday. She injected a total of 30cc volume combination of blood and glue patches in 9 locations. The first 24 hours after, I felt great. Second 24 hours had very HP. Kept almost nothing down for 24 hours. I took one 250 Diamox every 3-4 hours with a sip of water.

I had to sit up to sleep. The third 24 hours, almost no HP, and took only 1 Diamox in the morning. Yesterday, and today, horrible LP is back with all the associated horrendous symptoms. … She did, however, mention something in when I was in recovery about dural reduction surgery. I didn't feel well enough to question that.

I know my body doesn't have a problem making CSF because in December, she put a hole in my dura to relieve HP symptoms. I got no headache after that procedure.

Saturday, May 4, 2013 at 4:41pm EDT

Unless I have a crappy dura, which I may, I'll have a good idea where the leak is after all 5 reports are available for April and I correlate them. It takes about a month until the reports are on Healthview. They are updating healthview, I don't know if that will make it take longer. Any site she repatched last Tuesday that she patched earlier this month can be eliminated as a possible leak location. There's no way that I blew out patches and went back to LP within a day or two after the first 4 procedures with no HP. My OP's were around 10 this month. They've never been this low before. If these 4 procedures patched some small leaks, my OP would have went up SOME, even it it was still low. That didn't happen. The procedure Tuesday was the only one that put me into HP. For the first 24 hours after the procedure, I felt good so HP can't be blamed on the volume of space 30cc took. HP occurred 24 hours later and got so bad that I kept almost nothing down, even with Zofran. I took one 250 Diamox every 3 hours with a sip of water. I took 2, 250 Diamox at bed. My patches blew in my sleep. I had to sleep sitting up.

Saturday, May 4, 2013 at 7:27pm EDT

I haven't taken Diamox since then, and my pressure is very low. Dr. Gray has checked my pressure enough that I know my head has the imploding feeling only happens when my pressure is 10 or less.

I don't that I took enough Diamox on Wednesday and the patches blew from HP, or HP blew a hole somewhere else.

Monday, May 6, 2013 at 7:11am EDT

The unimaginable pain level with no way to stop the pain is what will do me in.

A local doctor prescribes morphine and oxycodone. My last refill of both was 6 months ago, so it's not like I take it often. The medication doesn't work.

Asking for a particular pain medication like fioricet is seen as drug seeking behavior… Each time Dr. Gray added Elliot B, I had instant pain relief for 24 hours.

Monday, May 6, 2013 at 2:20pm EDT

No one has discussed a shunt with me. I KNOW that I have issues with HP and Diamox not controlling it because she put a hole in my dura last December because 3000mg of Diamox and 100 HCTZ could not control my pressure. I think that I blew a high-flow leak within 10 days after she had me stop Diamox in February.

CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars is. I think that I reacted different to the 5th procedure because she accidently patched the high-flow leak but the pressure blew it open.

The hospice workers [for Karen's mother] wear masks and gowns when they come for the MRSA. Her oxygen levels go way to low when she does any walking. That will never improve because of the pulmonary fibrosis. She's so weak that she can hardly get up, and has nearly fallen several times. When the time comes, I don't know how to deal with this when my upright time is so limited!!!!!!!!

Monday, May 6, 2013 at 12:49pm EDT

I heard from Dr. Gray. She wants me to wait for a while, but I am getting worse. We spent 4 of the last 5 weeks in Durham. The first 4 procedures she did, I either never left low pressure, or left low pressure for about 24 hours IF she added artificial CSF.. The 5th procedure was different. She randomly patched locations. I felt good for 24 hours, had horrible high pressure the next 24 hours despite taking pressure reducing medication every 3 hours. I had to sleep sitting up because the pressure was so bad. I know that I blew a patch during the night. I went back to low pressure, and remain there. I think that I blew a high-flow leak within 10 days after she had me stop the pressure reducing medication in February. CT myelograms like Duke does cannot localize high-flow leaks. Duke is not capable of Digital Subtraction Myelograms which can localize high flow leaks. Cedars in LA is capable. I think that I reacted different to the 5th procedure because she accidentally patched the high-flow leak.

Monday, May 6, 2013 at 8:15pm EDT

Things have gotten worse. My 81 year old Dad has a lump that they think is a hernia and needs surgery. I give up.

Monday, May 6, 2013 at 8:43pm EDT

It's mostly my head and neck that hurts, but in between my shoulder blades has been intensely itchy for the past several weeks. I believe this is where the leak is. That's were she concentrated her patches the last time that gave me HP.

Monday, May 6, 2013 at 8:51pm EDT

I don't know how I will last. My pressure is so low that I am afraid of having permanent damage the longer this goes on.

Monday, May 6, 2013 at 9:59pm EDT

So thoughtful of you to ask! [About being Christian.] I don't go to church, but I do believe in a higher being. All religions throughout history can't be correct, but I believe a higher being exists.

Tuesday, May 7, 2013 at 2:49am EDT

Last fall, she patched several areas. HP got so bad she had to put a hole in my dura in December. 3000mg of Diamox daily could not control the pressure. The first 4 times that I saw her this month, I had instant headache relief for about a day after she added Elliot B, than went back to LP. The 5th time she patched me, she did not do a lumbar puncture so no Elliot B. HP got so bad 24 hours after the procedure that one 250mg Diamox every three hours, and two 250mg Diamox at bedtime could not control it. I had to sleep sitting up. I blew my patches during the night. And remain back in LP.

Tuesday, May 7, 2013 at 2:50am EDT

I did not need Diamox the first 4 procedures either. I simply went back to LP. I believe that she patched the wrong areas these times. [They did not show up on any tests, so was educated guess at best where to patch.]

Tuesday, May 7, 2013 at 2:59am EDT

She thinks she knows where the leaks are. She did a new CT myelogram, but said it looked very similar to the one from last fall. She used glue. The fifth time she patched me, she randomly patched areas. I believe she accidentally found a high-flow CSF leak that time. CT myelograms are not good at localizing high-flow leaks. Digital subtraction myelograms are better. [Alas the future DSM still did not show the leak.]

Tuesday, May 7, 2013 at 5:17pm EDT

A high flow leak is a fast leak. During a CT myelogram, the CT is done after the myelogram. That delay allows the contrast to equalize in your dura and wherever it is leaking to. After the contrast equalizes, they can't localize where the leak comes from.

Tuesday, May 7, 2013 at 8:53pm EDT

I'll call tomorrow to schedule a date. I plan to keep the date off the forums, but will let you know privately. [Karen was always worried about our house being empty. I can assure you it is well watched!]

Tuesday, May 7, 2013 at 9:03pm EDT

I am scared, and that's an understatement!!!!

Tuesday, May 7, 2013 at 9:07pm EDT

Take that first scary step. This is our lives!! I have so many fears about this trip!!!!

Tuesday, May 7, 2013 at 9:41pm EDT

I get the head in a vice thing with LP. Ringing and tingling were worse with HP, but Diamox has those side effects, too.

Thursday, May 9, 2013 at 5:50pm EDT

I see Dr. Schievink on the 28th, the day after Memorial Day. I talked with Mom. She fell twice last night. Once she didn't go the whole way down. The other time she did. Dad had to pick her up. I told her that Dad picking her up will make his hernia worse. He got his hernia from lifting her, but that is another story. She needs in-home assistance, or to go into a home. Neither of which she liked…

Thursday, May 9, 2013 at 10:00pm EDT

Bob brings his work with him. I still worry about the time he is not physically present. We spent 4 of the last 5 weeks at Duke. My husband got more work done than he would have at work, but his employer likes him physically present, too. I worry that since Dr. S did not find anything on the Duke myelogram that he won't find anything.

Wednesday, May 8, 2013 at 10:26pm EDT

I understand how someone in severe chronic pain feels so bad that they consider suicide. I do not condone those people.

[I do not understand her message of May 8th? Perhaps she meant 'condemn' rather than 'condone'??]

Thursday, May 9, 2013 at 5:55pm EDT

I personally believe suicide not a cowardly act but a very brave thing to do. None of us know for sure what happens when we die.

[This has me balling my eyes out. As the grieving husband I can not possible agree with this.

Someone suggested to me to check out the book, “Suicide: What Really Happens in the Afterlife?” by John Klimo and Pamela Heath. I have not yet read it. Perhaps if Karen had known of this book and read it she would still be here?]

Thursday, May 9, 2013 at 6:38pm EDT

Sometimes I wonder if I should go. Dr. S didn't see anything on my Duke myelogram, but my very low OP and my changing symptoms tell me something is wrong.

Thursday, May 9, 2013 at 7:28pm EDT

Dr. Gray had me stop Diamox in late February. Within 10 day of that, I believe that I blew another leak. The first 4 times in April she patched me, I went back to LP after the Elliot B leaked out. The 5th time she patched me she did not do a lumbar puncture so no Elliot B to pump up my pressure. She randomly patched locations and my pressure went very high for a day then I blew out…

Thursday, May 9, 2013 at 7:35pm EDT

I wish I listened to my body too. [About how much Dimox to take.] Dr. S said my Duke myelogram did not show a leak. That concerns me…

Thursday, May 9, 2013 at 10:51pm EDT

I am scared about the whole process. I sent him an email with a summary of what happened concentrating on last month at Duke. Dr. Gray did blood and glue patches. I believe she patched the wrong areas the first 4 times. The 5th time she randomly patched areas, and HP went out of control 24 hours later. HP was so bad that I had to sleep sitting up. I think that I blew the patch in my sleep. She doesn't think this could happen. I KNOW it happened. It's possible that another area of my dura blew out instead, but I think the freshly patched area would be the weakest link. I have a history of HP going out of control while taking 3000mg of Diamox. That happened to me in December and Dr. Gray had to put a hole in my dura. The bottom line is that my pressure was 14.5 when I began seeing Dr. Gray. Now it is 10 and my symptoms are worse. She helped me a lot for several months last fall. I blew holes within 10 days after she had me stop Diamox in February.

Thursday, May 9, 2013 at 11:35pm EDT

I keep a positive attitude toward Dr. Gray. She helped a lot of people. I believe that she can help me again in the future.

Friday, May 10, 2013 at 12:09am EDT

If you have psuedo-chiari caused by a CSF leak. Fix the leak. Your brain will float in CSF again and psuedo-chiari goes away on its own.

Friday, May 10, 2013 at 12:11am EDT

Babies are so sweet and a joy to be around.

Friday, May 10, 2013 at 12:20am EDT

They are such a joy. Watching them explore everything for the first time is utterly amazing.

Friday, May 10, 2013 at 12:43am EDT

[Being asked “Do you have children?”] Unfortunately, no. I have leaked for 24 years. I am 43. That kind of pain prevented much of a life.

Friday, May 10, 2013 at 2:40pm EDT

All my Duke records for April were on my Healthview account last night. Dr. Gray mentioned the last time that I saw her something about dural reduction surgery. That's not in my records. If I need that, then my dura stretched so much since February when my pressure was over 16 that I can no longer fill my dura above a 10. I don't believe it has, but I'll mention it to Dr. S.

Saturday, May 11, 2013 at 3:12pm EDT

Other than my period starting, I feel the same. Head imploding, blurry vision, nausea, dizziness, and horrendous pain. I feel better lying down than upright. This is definitely LP pain. My LP is very low because the headache is not going away lying down. I've had LP for 24 years. My LP began going lower in February, and that's when the LP headaches while lying down started. Until recently, I had no headache lying down, unless it was HP. HP and LP headaches lying down are different. Mom is falling, diarrhea, and that kind of thing. … I don't know what I will do if I have to cancel or reschedule seeing Dr. S. Nothing stops the pain. I haven't found anything that works on my nausea other than several hours of lying down. Breakfast is the only meal that I can eat. My body is the most out of shape physically, than I have been in few years.

Saturday, May 11, 2013 at 3:37pm EDT

We'll be flying. There will be no sight seeing because I am unable to.

Head imploding, blurry vision, nausea, dizziness, I feel my brain hitting the inside of my skull, and horrendous pain.

My spinal fluid pressure has been going lower in instead of up with an increase in symptoms.

The doctor there is in neurosurgeon, I'll be admitted to the hospital for tests, and treatment will depend on that. My Mom is in hospice.

Saturday, May 11, 2013 at 3:52pm EDT

People suggest things to me like, “Have you tried Advil?” , or “My cousin's, Mother's brother's Father took this herb and it took away the headache that they had for 2 years.”

Saturday, May 11, 2013 at 4:09pm EDT

I read in Dale Carnegie's, “How to Win Friends and Influence People” that people spend 90 percent of their time thinking of themselves. People don't think how their actions will affect others. I must admit, that I consider how my actions affect others more than I used to, because of this illness. Some people think that my illness can't be as bad as it is. They think that I use my illness as an excuse to get out of doing something. I forgive you for being in a bitter state. We all have those days, or in my case years.

Saturday, May 11, 2013 at 4:18pm EDT

You're not weird for feeling ashamed. People DO look at us differently and judge us, if they know we are sick. I don't tell people either for that reason.

Saturday, May 11, 2013 at 4:31pm EDT

I was the youngest. My parent's always focused on the negative like that. How much does our upbringing affect our illnesses?

Saturday, May 11, 2013 at 4:36pm EDT

How we were treated in our very early years [Up to age seven.] has a major impact on who we are today. I think our parents did the best that they knew how to, as we do today.

Saturday, May 11, 2013 at 4:47pm EDT

If [Doctors] had support staff with communication skills as good as … and an organized system for prescription refills, … could see more patients. Let the support staff handle the parts of the job that do not directly generate income for [the hospital].

Monday, May 13, 2013 at 9:53am EDT

The whole thing has me so unnerved. That and my my Mom being in hospice. My head is imploding, vision issues, dizziness, nausea, horrible headache, and weird things that I know I am forgetting.

Monday, May 13, 2013 at 2:10pm EDT

I am frustrated, too. I am sicker than ever!! When I saw on the forum that Duke is getting new equipment, I thought to myself is this only an equipment upgrade or is something wrong with the old equipment? Something wrong might explain why my new myelogram is no different than my old???? Something is wrong, my pressure going down and symptoms increasing doesn't happen for no reason at all. [It was an upgrade.]

Monday, May 13, 2013 at 2:25pm EDT

I don't know how I will make it… Every time the phone rings it is scary with all my parent issues. If my pressure wasn't going down, I would think some of my symptoms were emotional. The pain is horrendous and my nerves are shot.

Monday, May 13, 2013 at 2:33pm EDT

I am sure it is LP. My head is imploding, eyes are being sucked in, and many other symptoms. My appointment is the 28th.

Monday, May 13, 2013 at 9:50am EDT

I don't think that she over patched, but I have no way of knowing. My leak sites used to be in my low back. I don't know where they are now.

Tuesday, May 14, 2013 at 5:31pm EDT

Things are crazy around here with my Mom having hospice care at home. Her MRSA. She keeps falling among other things. Dad and his hernia, which I believe it got from lifting her.

My intracranial pressure is not staying up, and that makes it so had to be in the upright position. I don't know what I will do if I have to change my appointment because of Mom or Dad. [Wasted worry. Mom and Dad are still with us as of Sept./15/2013.]

Tuesday, May 14, 2013 at 8:08pm EDT

I feel my brain sinking into my shoulders. I was fairly stable over the years, until recently.

My head is imploding. My vision is blurry and/or double if I am up too much. I am dizzy. The pain is horrendous. I am sure that I am missing symptoms.

Every time the phone rings it's usually bad news with my parents. Mom is in hospice and Dad has a hernia. My Mom has advanced pulmonary fibrosis, or scaring of the lungs and MRSA in her lungs. She is on oxygen 24/7. She’s had strokes and heart attacks in the past. She has inoperable heart blockages. I’m afraid that if Dad has surgery, he will get MRSA in his incision. I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don't know what I will do if I have to change or cancel my appointment with Dr. Schievink.

My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure.

Tuesday, May 14, 2013 at 10:26pm EDT

… I worry that my parents health problems will make me cancel or postpone my trip to see Dr. Schievink. I don't know what I will do if I have to change or cancel my appointment with Dr. Schievink. My head imploding, vision, nausea, pain and other symptoms are getting worse. I know stress and emotions could be a part, but stress and emotions would not lower intracranial pressure. [Wasted worry. :-(]

Wednesday, May 15, 2013 at 8:05pm EDT

I feel your anxiety. I am SO scared between this and my parent issues. I think that I am going insane!

Wednesday, May 15, 2013 at 8:10pm EDT

Thank you for your encouraging words. Everyday I think about giving up. This is a daily struggle.

Wednesday, May 15, 2013 at 8:12pm EDT

Struggling with this for 24 years, I don't think that I will ever get my life back. Not much is known about this illness for short term leakers, let alone long term leakers.

Wednesday, May 15, 2013 at 8:13pm EDT

It's a weird condition that very little is known about. We are the research. I try to remain positive, but it is so hard. I am better than I used to be.

Wednesday, May 15, 2013 at 8:17pm EDT

I meant better with being positive. I am not better physically. I am worse.

Wednesday, May 15, 2013 at 8:19pm EDT

My symptoms are horrendous head pain, head imploding, nausea, vision issues, dizziness are all present daily. Caffeine, and the binder help, but do not totally relieve the symptoms.

My eyes are light sensitive. Every time I move my head, I am slightly dizzy, my eyes go funny, and my brain feel like it is hitting the inside of my skull. After lying down all night, I can eat a full meal at breakfast. Not so with lunch or dinner. Zofran and Promethazine do not help.

Your brain might be compensating by making extra CSF, rather than leaking less. I am an emotional train wreck, too. I need to get off here now. I will be back on tomorrow.

Wednesday, May 15, 2013 at 11:23pm EDT

Dr. Gray adds Elliot B prior to her myeologram, so that should help to find leaks. I am not thrilled with the idea of surgery, but I haven't had long term success with patches. … I have no idea how many cysts that I have. For me, I cry because I feel so helpless. I do what I can for myself. Others simply don't get it. I look fine, therefore, I do not get help around the house, even if I need it. My parents have a new horror story almost every day. I worry so much that their health issues will interfere with my trip to L.A. I firmly believe that LP negatively effects our physical, as well as mental health. I get upset with myself for crying, which only makes me more upset. LP makes me feel lethargic, dizzy, nauseated, and gives me trouble with my vision. Breakfast is the only full meal that I can eat. I can eat a few snacks throughout the day. Much more than that makes me want to throw up. Medication for nausea doesn't help. Dr. Gray sent me an email today asking me how it was going. I told her how I felt and that I was going to see Dr. Schievink.

Thursday, May 16, 2013 at 6:41pm EDT

I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don't have friends that can help. They are long gone. The couple local friends that I have, have their own chronic pain/health issues that prevent them from helping.

Thursday, May 16, 2013 at 7:36pm EDT

I am drinking as much as I can. [On a hot day it seemed like she would drink a gallon or two of water.] Dr. Gray thinks that I need dural reduction surgery. I am not sure that I agree with that. She had to put a hole in my dura in December because my pressure, or in my case volume was too high. The 5th time she patched me last month, I felt good for 24 hours, developed HP the next 24 hours which Diamox every three hours did not control. I had to sleep sitting up. I went back to LP during that night. Dr. Schievink doesn't see anything on the Duke myelogram that I had last month. I know he does other tests, but not seeing anything on Dr. Gray's myelogram concerns me. I plan to get my pre-op testing done tomorrow. He wants to give me anesthetic for the lumbar catheter placement that I will be in the hospital for, for a few days. As always, I have no choice but push myself to do things because my hubby works during the day. Because I had this headache for 24 years, I don't have friends that can help. They are long gone. The couple local friends that I have, have their own chronic pain/health issues that prevent them from helping.

ursday, May 16, 2013 at 7:39pm EDT

Not focusing on myself so much with my health issues helps me.

I may not be able to do things physically, but I like to stay up to date on what happens in others lives.

Thursday, May 16, 2013 at 9:17pm EDT

Sorry that I have not gotten back with you.

Things are crazy here getting ready to go to Cedars from Pennsylvania and with my parents health issues. I can't remember if I told you but my Mom is in hospice.

I imagine it is traumatic for older folks when they need in-house help or a nursing home. The independent part of their lives is gone forever. The 'care' received in most nursing homes isn't great. The staff may be well-intentioned but the staff to resident ratios are way to high to give good care.

This stresses out the workers, and that stress makes them treat patients badly. I am not saying all workers are like that, but I think most are.

Thank you for thinking and praying about me every day. I appreciate it.

Thursday, May 16, 2013 at 9:30pm EDT

I googled lumbar catheter placement. It's a lumbar drain. I hope that I don't get a leak from that. I don't know if he will do surgery or patches. I posted a message on the Dr. Schievink forum talking about my appointments at Cedars. To say that I am scared is an understatement! These procedures are all weighing the risks or complications verses benefits.

Thursday, May 16, 2013 at 10:47pm EDT

Since I decided to see Dr. Schievink, I have been mostly quiet on that forum.

I am more active on the forum for Dr. Schievink's patients.

Sometimes words in text come across differently than the same thing said in person. In person, you can read body language and voice inflections.

That said, the three subjects, money, religion and politics usually cause friction in a conversation. I am going to bed in a few minutes. Tomorrow, I will get the local testing that Dr. Schievink wants.

Thursday, May 16, 2013 at 10:50pm EDT

I get it. Healthy people think things are easy to fix. Things don't work like that… [How do we get the healthy people to understand?]

Friday, May 17, 2013 at 7:09pm EDT

I feel like I am about to explode from the stress of my parents, and my own health…How much can a person take? I heard from … , Dr. Schievinks scheduler. My appointment to see him on Tuesday, the full spine myelogram later that day, and the infusion the next day, in addition to dural reduction surgery on the 31st are all scheduled. I had my pre-op tests today. My PCP has no openings until next Thursday. I need him to fill out the paperwork for my appointment the following Tuesday. That weekend is Memorial Day. I am frightened that the paperwork won't be done on time. If it's not, than Dr. S won't do anything and all the money spent going to him is wasted. [Paper work did make it in time. Didn't like it at all that it was last minute.]

Friday, May 17, 2013 at 7:16pm EDT

I will stress it with him at my appointment. Dr. Gray suggested dural reduction surgery to me. I assume told him? Frankly on http://www.cfsleak.com had dural reduction and it helped her.

Saturday, May 18, 2013 at 10:58am EDT

I am not sure if I wanted dural reduction surgery. I am not sure that, that's what I need. I hope his tests show something that can be fixed without that kind of surgery

Saturday, May 18, 2013 at 11:00am EDT

I need to talk with him about how I reacted differently the fifth time Dr. Gray patched me last month, but I quickly blew out from HP. I believe that is a clue to where I am leaking.

Tuesday, May 21, 2013 at 4:03pm EDT

[Anyone know anything about this, like a link to the video?:] I didn't watch it, but I heard that the show Royal Pains on USA network ended last season with the main character having a spinal fluid leak. This is exciting, considering that leaks are under recognized in the medical community, let alone rarely appear in entertainment. He had a blood patch and immediately felt better, but went to a wedding that night. Anyway, I don't know if they'll carry it over to next season, June 12th, but it ended with him having neurological complications from the spinal fluid leak. Great for awareness of this condition!

Wednesday, May 22, 2013 at 6:05pm EDT

I am very scared, but I am more scared of doing nothing I worry that he won't find the leak since he did not see anything on my Duke myelograms. I don't know how long I will be in the hospital.

Thursday, May 23, 2013 at 2:32pm EDT

When we get back home, my husband will not be here 5 days a week for 12 hours because he will go back to work. One or two nights a week, he spends all night with his Mom. He takes is work with him when we go on trips, but when he is home, they want him physically present.

Thursday, May 23, 2013 at 2:33pm EDT

My hubby won't be around much to help when we get back home. They want him present at work.

Thursday, May 23, 2013 at 2:56pm EDT

I don't watch TV so I have no idea what is on. Sometimes I believe that I am not making this up. Other times, I am not so sure. No one physically around me understands if I say anything about how I feel. I put on a happy face. They have no idea how hard my activities of daily living can be. I have neck pain and stiffness with HP and LP. It's worse with LP. What can I search for on youtube to see the funny and touching videos?

Thursday, May 23, 2013 at 10:15pm EDT

If I had surgery in L.A., I'd probably be home about a week later. Do you know of any organizations that could help me after I get back home. I won't need 24 hour care, just help with things like shopping, cleaning, etc.

Monday, May 27, 2013 at 2:04pm EDT

I am at the hotel in L.A. Being upright past my limit on travel day (yesterday) and drinking less than usual so I did not have to go to the bathroom as often flying across the country gave me killer head pain last night, along with worse than usual blurry vision, pressure in ears, dizziness and nausea. When I got to the hotel, I lied down and kept drinking as much as I could keep down. I was afraid that I would go to the ER here for the nausea but managed not to . I drank a total of 48 ounces of water over a period of 5 hours before I had to urinate. The plane ride was okay, other than the first class seats did not recline very much which meant I had to stay upright. I couldn't have done coach.

We flew Airtran from Pittsburgh to Atlanta, Atlanta to L.A. [It was the least cost flight. In all her pain she always remained frugal.] Going home, especially if I have surgery, I'll get a non-stop flight. Since I don't know when I will go home, we bought a one way ticket here. We'll by another one way ticket to go back home.

The Super Shuttle driver that brought us to the hotel from the airport gave us the most terrifying ride that we ever had. Fast stops, slamming brakes on, changing lanes without checking the blind spot, and backing onto the road without looking. another passenger said that he could leave them off right there. The driver took that literally and slammed his brakes on in the middle of the 4 lane highway causing the cars behind us to skid. Our driver took up both lanes going in our direction when he stopped. The passenger that wanted off told him to pull into the driveway to let him off. If I have surgery, I can't ride with someone that drives like this back to the hotel or airport. I'd rip the incision open. This is L.A., and people may drive different than at home, but come on. [We were told this was NOT normal for a shuttle driver later.]

I see Dr. Schievink tomorrow. After the appointment, I have a full spine MRI with myelography. Wednesday, I'll be admitted to the hospital for infusion therapy. Surgery is scheduled for Friday, if he does it. I talked with Mom today. She's running a fever again, her oxygen level is low. She is very confused. I told her 25 times or so that she will be in bed tomorrow before I am done with the tests. L.A. is three hours behind home. She couldn't understand what I meant. She'll probably call tomorrow and not understand why I am still having tests.. She has advanced pulmonary fibrosis and MRSA. I internalize a lot of my stress, anxiety, feelings about this illness, etc., because others don't understand. …

The doctor at the pain clinic required me to [to see a psychologist at the pain clinic.]. I leaked for almost 24 years and counting. The therapist thought that I practice sick behavior for attention'. Talking with her about things that I want to do, but physically can't, just left me more frustrated. She didn't believe that I physically couldn't. She fired me when I told her that I was going to Duke. She tried everything that she could to get me to change my mind about Duke. When I refused to, she fired me. How come? Was she afraid that she would be proved wrong? Any good therapist would keep an open mind to learning about difficult cases. Dr. Gray proved that it is intracranial hypotension. At home I spend most of my time alone struggling to do what I need to do. I drag others physically around me down with my problems. They want to do their own thing, and not deal with someone always sick. I will talk with a trained professional again, ONLY if they know about CSF leaks or are open to learning about CSF leaks and the effects they have. I have no idea how to know this before seeing someone, which is why I haven't. … Sorry for writing a book. Karen [Do these psychologists exist?]

Monday, May 27, 2013 at 6:36pm EDT

I am saddened that you are nauseous and pain medication is not working well. hope that you feel better soon. I read that originally you planned to go home today?

How did you get from the airport to the hotel? How will you get back to the airport? I ask because we had a bad experience with Super Shuttle.

The Super Shuttle driver that brought us to the hotel from the airport gave us the most terrifying ride that we ever had. Fast stops, slamming brakes on, changing lanes without checking the blind spot, and backing onto the road without looking. another passenger said that he could leave them off right there. The driver took that literally and slammed his brakes on in the middle of the 4 lane highway causing the cars behind us to skid. Our driver took up both lanes going in our direction when he stopped. The passenger that wanted off told him to pull into the driveway to let him off. If I have surgery, I can't ride with someone that drives like this back to the hotel or airport. I'd rip the incision open. This is L.A., and people may drive different than at home, but come on. [After this we took a Taxi everyplace.]

Monday, May 27, 2013 at 9:13pm EDT

Will your air plane seat going home be a lie flat seat? I will need a straight through flight from LA to Pittsburgh. The only airlines that offer that is United and US Air.

I'm terrified that I'll get a seat that doesn't recline very much. I bought one way first class tickets on AirTran coming here. It's a discount airline so I can't complain much, but I expected the seats to recline more.

Tuesday, May 28, 2013 at 1:02pm EDT

Being up past my limit always makes me sick. I'll take care of myself as good as I can. I see the doctor today. Unless he changes his mind, I'll be admitted to the hospital tomorrow. He'll infuse artificial spinal fluid to get an idea where my pressure should be.

Tuesday, May 28, 2013 at 10:52pm EDT

The taxi drivers today were much better. I saw Dr. Schievink, and had a full spine MRI with myelography. The plan is to admit me in the morning. Do infusion therapy. Before possible surgery on Friday he was going to do another myelogram to see if he could locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules all that for out of town patients because it's easier to take it out of the schedule if it turns out that I do not need surgery than add it. I was supposed to get my blood typed today but there was not time. My appointment with Dr. Schievink was 12:45. I got out of his office at 2:50. I went to the lab for the blood test but two patients were ahead of me. I didn't have time to wait. I had to be at the imaging center at 3:30. I didn't get out of the imaging center until almost 6pm. The lab closed at 5:30. We'll go early in the morning for that test. I hope that doesn't screw up the lumbar catheter placement that's scheduled for tomorrow. I have to be at the hospital tomorrow morning at 10am for more blood tests. Lumbar catheter placement is scheduled at 1pm. If he does surgery Friday, I'll be in the hospital for approximately 4 days afterwords, and stay at the hotel for about 3 days after that.

Tuesday, May 28, 2013 at 10:36pm EDT

I saw the doctor, and had a full spine MRI with myelography today. The plan is to admit me in the morning. Infuse artificial CSF to find where my pressure should be. Before possible surgery on Friday he wants another myelogram to see if he can locate leaks. He said he may not see them on that test. Friday I am scheduled for dural reduction surgery. His office schedules surgery for out of town patients because it's easier to take surgery out of the schedule if I do not need it than to add it. I have to be at the hospital tomorrow morning at 10am for more blood tests. The infusion is scheduled to start at 1pm. If he does surgery Friday, I'll be in the hospital for approximately 4 days afterwords, and stay at the hotel for about 3 days after that.

Tuesday, May 28, 2013 at 11:09pm EDT

The MRI was almost 2 hours. About 2/3rds of the way through the test the tech injected contrast into my arm. I'd rather he find leaks on the tests than do dural reduction surgery. Infusion therapy is where I am an inpatient and he infuses artificial CSF over a period of a couple days to find where my pressure should be. I am very scared. His nurse did not know what Elliot B was. … The running around hasn't been too bad. We are at the Elan. Renting a car and paying to park would be so much more expensive than a taxi. A taxi including the tip is 7-8 dollars one way to the hospital. The hospital is only a few blocks away. Bob walks when I am not with him. [The good is I lost some wight. Thought about buying a bicycle until I saw a hit and run take out a fellow on a bicycle right across the street from me.]

Tuesday, May 28, 2013 at 11:26pm EDT

Someone said Cedars had free WiFi. When I am under the effect of drugs, I won't be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will. [I set up an encrypted tunnel so that we could use these 'free'/'open' WiFi's without worrying about having our identity or something stolen. Always something to be aware of.]

Tuesday, May 28, 2013 at 11:28pm EDT

I don't have all my teeth. I had my wisdom teeth and 5 others removed when I was in high school before I got braces. I don't know for sure how long I will be here. [I really don't know why she said that at this point, there was no context for it at all. Medication?]

Wednesday, May 29, 2013 at 7:45pm EDT

I don't know if they are doing surgery for sure. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I'm afraid that my pressure won't be high enough to show leaks, if the resident doesn't hook it up until very late tonight.

Wednesday, May 29, 2013 at 7:51pm EDT

I read that when pressure is very low from the leaks, the leaks won't show up. When you increase pressure, the leaks show.

Wednesday, May 29, 2013 at 10:10pm EDT

I am in room 8110, one of the suites. I didn't request it. I hope that my insurance, … pays for it. The doctor just started the infusion at 2.5 cc per hour. At midnight, they will change it to 5cc per hour. I am supposed to get a myelogram tomorrow. I have not heard about the MRI with myelography from yesterday.

Wednesday, May 29, 2013 at 2:03am EDT

When I am under the effect of drugs, I won't be on here. I told Bob, my hubby how to give updates, but I am not sure how often he will.

Wednesday, May 29, 2013 at 7:52pm EDT

They put in the lumbar drain. I am waiting for the resident to hook up the infusion pump. They are planning to do a myelogram tomorrow, but I have no idea when the resident will get here to hook up my infusion pump tonight. I'm afraid that my pressure won't be high enough to show leaks, if the resident doesn't hook it up until very late tonight.

Wednesday, May 29, 2013 at 8:52pm EDT

I am still waiting for the resident to start the infusion. My headache is unchanged because I am in still in LP. I'll be able to sleep with the drain. I hope the drain does not create another leak site.

Wednesday, May 29, 2013 at 9:12pm EDT

One of the other doctors told me that they would increase the amount of fluid every 12 hours. If my headache changes from a LP headache to a HP headache to let them know. They would reduce the amount of fluid. I afraid of the drain site causing a leak. They used a 14 gauge needle because the catheter has to fit through the needle.

Wednesday, May 29, 2013 at 10:02pm EDT

I have pain but not any more than I am used to. I am allowed to have the good drugs if I want them but I don't like the way they make me feel. If I use medical language that you do not understand, please correct me. The infusion is a diagnostic procedure. They just started the infusion. Even if he figures something out. Surgery is not clear cut. It depends on the quality of my dura, what type of cyst is leaking, where the leak is located, and how many leaks there are. Can't assume just one leak. It's not a quick easy fix because of rebound high pressure. Rebound high pressure has it's own very painful 24/7 symptoms with the risk of blowing holes in you dura. I blew holes over the winter after the doctor at Duke patched me.

Wednesday, May 29, 2013 at 10:16pm EDT

I don't know when they will let me know for sure about surgery. I could use good news…

Thursday, May 30, 2013 at 1:53pm EDT

My headache eased until about midnight, then got worse. They upped the infusion from 2.5ml to 5ml around midnight. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they put it up to 7.5. They backed it down to 5ml. I get hormonal headaches at that time of the month that overlay my postural headache. I think that I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.

Thursday, May 30, 2013 at 1:44pm EDT

My headache eased until about midnight, then got worse. They upped the infusion from 2.5ml to 5ml around midnight. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they put it up to 7.5. They backed it down to 5ml. I get hormonal headaches at that time of the month that overlay my postural headache. I think that I have that now. UGH.

Thursday, May 30, 2013 at 1:46pm EDT

I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my upper thoracic, but wanted to make sure that spot is not an artifact.

Thursday, May 30, 2013 at 2:03pm EDT

Please let me know if you don't understand what I am saying. They hooked up the CSF infusion last night and that eased my headache until midnight. They upped the infusion rate at midnight, too. I woke up with my headache worse than it was last night when I went to bed. My head got even worse when they upped the rate a second time. They lowered the rate. To complicate matters I get hormonal headaches at that time of the month that overlay my daily headache. I have that now. UGH I am getting a thoracic MRI this afternoon. Dr. Schievink thought that might show a small spot in my mid back , but wants to rule out that the spot is not a shadow. I hate my hormones!!!!!!!!

Thursday, May 30, 2013 at 2:26pm EDT

Sending me flowers is much appreciated! They brighten my room! [Have you brightened anyone's day with a random act of kindness recently?]

Friday, May 31, 2013 at 1:13am EDT

Now the MRI and myelogram will be in the morning. Probably followed by surgery. My hubby will do updates but I don't know how often.

Friday, May 31, 2013 at 2:36pm EDT

I had a full spine myelogram a couple days ago. The original plan today was to have a CT myelogram and another thoraric MRI. When I got back to my room, before I lied down, I decided to use the restroom before lying down. Bob went to find one, too. At this point, Dr. Schievink came in the room. The only thig we know is that surgery is canceled for today. He wants to do a special kind of myelogram Monday, and surgery Tuesday. What other kind of myelogram does Cedar's have, other than Digital Subtraction? They took out the lumbar drain. I'm afraid that may cause another leak since Cedars doesn't routinely do blood or glue patches on those. The next problem is all the hotels around the hospital are booked after the end of our reservation at Elan on the 12th.

Friday, May 31, 2013 at 6:07pm EDT

I may post later on the group about this. I am being discharged. I will come back Monday for a DSM, with possible surgery scheduled for Wednesday. He thinks he sees an abnormality in front of T2.

kareninlainwheelchair.jpg

Friday, May 31, 2013 at 7:08pm EDT

Monday, I am doing the DSM as outpatient. Depending on the results of the DSM, I will be admitted on Wednesday. I feel the same, LP. I felt better with the infusion. After they injected 20cc of dye for the myelogram, I had very HP for about an hour, then LP.

Friday, May 31, 2013 at 7:21pm EDT

I am scared.

Friday, May 31, 2013 at 11:13pm EDT

The nurse gave us a prescription for Keppra when I was discharged. The change of plans surprised me today. I was scheduled for dura reduction surgery. … Waiting and having the right surgery is better than having an unnecessary surgery.

Saturday, June 1, 2013 at 12:11am EDT

I feel the same. The infusion helped while they were doing it. 2.5ml felt like it was not enough and 5ml was too much. When they injected 20cc of dye for the CT myelogram, I got VERY hp. I was back to LP within 2 hours of that! After they did the myelogram, they took me to a holding area for about an hour before they did the CT part. [We waited far to long in this holding area! Not sure the Doctors understand what is going on in this area of the hospital!] I feel that most of the dye leaked out in that time. [Making the test useless!] I arrive at 11am on Monday. The DSM is 1pm. If I have surgery it will be Wednesday. I won't lie, I am VERY scared.

Saturday, June 1, 2013 at 1:35am EDT

… From looking at my paper, it doesn't look like it is a DSM. Maybe waiting an hour between the myelogram and CT portion of the test has something to do with what he ordered. When they injected 20cc of dye, HP got really bad, but went back to LP in about 2 hours.

Sunday, June 2, 2013 at 10:41am EDT

You could bring Bob something. I eat nearly nothing. I throw it up. The nausea is so bad. It was like this at home, too. The nausea medications don't work for me. I am lying flat most all the time.

Sunday, June 2, 2013 at 10:46am EDT

He likes healthy food. While on the CSF infusion, I had a good appetite.

Sunday, June 2, 2013 at 12:11pm EDT

Thanks for your call yesterday. [Give someone a call. Brighten their day!]

Monday, June 3, 2013 at 10:31pm EDT

Digital subtraction myleogram didn't show any leaks today. They injected at L2 L3 no leaks were shown. Dr. Schievink was in surgery. The resident didn't call until after Dr. Schievink's office hours to tell us to make an appointment in the office. So discouraged.

Monday, June 3, 2013 at 10:37pm EDT

Someone, I assume the radiologist said that it takes two digital subtraction myelograms to image the entire spine. They injected at L2 L3 and said it would reach T2. Do they inject around the same general area when they do the low back, too.

Tuesday, June 4, 2013 at 1:09am EDT

He said my Duke myleograms were normal and other than that spot my MRI was normal. Maybe I'm just crazy and making this up.

Tuesday, June 4, 2013 at 12:37pm EDT

The digital subtraction myelogram yesterday did not show a leak. [Karen was devastated by this. This is one of the main reasons she went to LA. We need better imaging technology. I'll address that elsewhere.] That test shows only fast leaks. I have not talked with the doctor. I received an email from him talking about proceeding with the original plan, dural reduction surgery. That involves cutting off the back of several vertebra and making the dura smaller. The tests are suggestive of my dura being stretchy. A stretchy dura is a poor quality dura prone to develop leaks.

Tuesday, June 4, 2013 at 1:31pm EDT

[Dr.] replied to my email. He said no more tests. We could proceed with dural reduction surgery tomorrow. He said we'd talk this morning. I have not talked with him.

Tuesday, June 4, 2013 at 1:39pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He can't find objective signs of a leak, although my symptoms suggest it. She said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I'll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 1:45pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He can't find objective signs of a leak [How could you due to that long wait in holding!], although my symptoms suggest it. She said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I'll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 1:52pm EDT

I am terrified. I think he is removing the lamina of L3, L4, and L5. I am holding up as well as I can. Easier said than done.

Tuesday, June 4, 2013 at 2:04pm EDT

I'm not sure if he did a new brain MRI when he did the full spine MRI. I had a brain MRI over a year ago and it was normal.

Tuesday, June 4, 2013 at 2:09pm EDT

Dr. Schievink did exploratory surgery to find you leaks. Did any object signs, such as fluid pockets show up on any test? I am supposed to be at the hospital at 6:15 for an 8:15 dural reduction surgery. He can't find objective signs of a leak, although my symptoms suggest it. He said the chances of success go up a lot if they find a leak site. Otherwise the chance of success is 60-70 percent. Scary. I correlated my Duke records for April. I found several sites that she patched the 5th time in April that gave me HP that she did not patch the earlier times in April. Many, but not all, the sites were in my low back. I'll take a list of those sites with me tomorrow.

Tuesday, June 4, 2013 at 2:12pm EDT

He'll do dural reduction surgery. My hubby is stressed, as I am. I wish that I had something for anxiety, but I do not.

Tuesday, June 4, 2013 at 2:13pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. No guarantee this will work. I am terrified.

Tuesday, June 4, 2013 at 2:21pm EDT

Elan does not have a kitchen. [I used the microwave in the lobby to heat us Amie's TV Dinners.] … We have a refrigerator. A microwave is in the lobby for our use. Everywhere is booked up next week for the convention, except the cheap place with bad reviews that I mentioned on the Dr. S group. We'll have to stay there next week. :-( [It was not as bad as the reviews.]

Tuesday, June 4, 2013 at 2:34pm EDT

I am supposed to be at the hospital at 6:15 for an 8:15 surgery. He is going to remove some bone off the back of the vertebra in my low back and reduce the size of my dura to prop up my pressure. No guarantees this help.

Tuesday, June 4, 2013 at 6:48pm EDT

I am here physically, but mentally I am gone. My hubby is here. [Medication and exhaustion.]

Tuesday, June 4, 2013 at 7:08pm EDT

The lumbar spine has the most hydrostatic pressure when you are standing. That's why he goes there. That location can stretch from the hydrostatic pressure causing LP. He doesn't know where I am leaking. The tests are all normal. He said in his research that leak sites cannot be found in some people with LP. Maybe I am just crazy and lazy.

Tuesday, June 4, 2013 at 9:48pm EDT

I'll be home long before I am healed. The most difficult part and lonely part of recovery will be after I am home.

Tuesday, June 4, 2013 at 9:39pm EDT

I told my hubby to email updates. I don't know how often he will. There's no guarantee the surgery will help.

Wednesday, June 5, 2013 at 8:34pm EDT

Karen's husband, Bob here. Karen had her surgery today. Seems to have went well, on to much pain meds to tell for sure for a day or two. They said that she could probably leave the hospital on Saturday if no complications appear. Will have to stay in hotel for a few days before flying. They removed part of her dura in the area of L2/3/4 [She told me later I had that wrong, always take written notes! It was the plan, no one told me the plan changed during the surgery.], and parts of those vertebra to access those areas. The idea is that by making her dura smaller, it will match the amount of fluid that her brain produces. This will get the brain floating like it should.

Friday, June 7, 2013 at 12:00am EDT

Bob, here. She has been sleeping most of the day. She did take a short walk and is setting up in a chair to eat now. Undecided about the headache pain yet. He only found funky dura. :-( Karen has suspected connective tissue issues. Not sure how relaxing at hotel will be. We need to change hotels on Tuesday, to the … up the street. Don't fall in to the trap that we are ruled by our genes. Look up Epigentics. Bruce Lippton is a good place to start.

Saturday, June 8, 2013 at 7:12pm EDT

Bob, here. She is back in hotel now. Still sleeping.

Saturday, June 8, 2013 at 7:35pm EDT

The E3 Game Design convention is what has all the places booked.

Saturday, June 8, 2013 at 11:21pm EDT

He did a dural reduction only at L4, L5. He didn't do the other levels. Headache is still better lying down, so I am still in LP just not as low as before. The surgery pain, although bad, doesn't concern me as much as the headache.

Saturday, June 8, 2013 at 11:33pm EDT

I don't know what's next. I see him next week. The lumbar puncture with an 18 gauge needle and 14 gauge drain were at L2/L3. He didn't do surgery at that level. I am not sure of his reasoning, he doesn't seem inclined to patch those for 3-4 weeks post surgery. I'll be home by then.

Saturday, June 8, 2013 at 11:54pm EDT

I understand a DSM needs a larger needle. I don't know why Cedars uses a bevel 18 gauge and not a pencil point 18 gauge. I asked. I've seen the studies were blood patches are not as effective if they are done immediately after a procedure. I have no way of knowing if patching is needed for sure. I still have a low pressure headache, although it's not as bad as before surgery. Those holes seem like the most likely places that would be leaking now.

Sunday, June 9, 2013 at 11:03am EDT

It's me. I am back at the hotel. My head is better, although still not as good as I hoped.

[Karen wrote this note to take to Dr. Schievink so she would remember what she wanted to talk about. Note the part about taking Diamox stretching her pain limit, that becomes significant later.]

karen_dr_s_note_pg0001.jpgkaren_dr_s_note_pg0002.jpg

Sunday, June 9, 2013 at 11:48pm EDT

It's me. I am back at the hotel. My head is changing. I can't even dress myself right now. Recovering from the surgical pain will be the easy part.

Recovering from the spinal fluid issues will take about a year, and longer than that if I have more surgery.

Sunday, June 9, 2013 at 4:07pm EDT

He did a dural reduction only at L4, L5. He didn't do the other levels. Headache is still better lying down, so I am still in LP just not as low as before. The surgery pain, although bad, doesn't concern me as much as the headache. I don't know what's next. I see him next week. The lumbar puncture with an 18 gauge needle and 14 gauge drain were at L2/L3. He didn't do surgery at that level. I am not sure of his reasoning, he doesn't seem inclined to patch those for 3-4 weeks post surgery. I'll be home by then. Since he didn't find any leaks, I am guessing that I may be leaking here. Others have asked him for recommendations for doctors after they got back home. He's told them to find one, and he will work with them. I have no idea where to look because my doctors at home don't believe in leaks.

Sunday, June 9, 2013 at 5:54pm EDT

I am a little disappointed. I cannot get the 14 gauge hole from the lumbar drain and 18 gauge hole from the DSM patched for 3-4 weeks. I expected at least some HP headache. Because he did not find any leaks, I believe these holes are leaking which is why I have no HP. My LP headache is better, but still there. That part is good. If it doesn't get better in time, then what? I've got no one at home to follow up with. I thought they would patch the holes for the lumbar drain and DSM. That was a 14 gauge hole. The hole for the DSM was 18 gauge. Both were bevel tip, and not pencil point needles. I understand the need for the larger holes but they won't patch them for 3-4 weeks. I won't be here then. I don't think Dr. Schievink understands how difficult it is to find someone to follow up with. I get the feeling he thinks any anetheologist can patch those holes. Technically, that may be true but I want the blood patch under CT guidance so I don't get another hole. [UPMC Did use CT guidance.] The doctors at home think I am nuts. Dr. Gray referred me here, so I have no where to go for after care if those holes need patched. I am screwed.

Sunday, June 9, 2013 at 6:13pm EDT

I am 10 hours away from Duke. I don't want to go into very HP either, but this is not HP. … I struggle with giving up because of not being able to get a patch, and not having post op care for that issue after I get home. The pain from the surgery is manageable.

Sunday, June 9, 2013 at 6:36pm EDT

Well, I can't keep putting my Bob through all this crap dealing with these leaks. [My current condition of crying all the time is am improvement??? I LOVE YOU!] I have to stop somewhere. I would feel so much better if I a back up plan for a possible patch in 3-4 weeks. I don't have a plan and I can't adjust to that.

Sunday, June 9, 2013 at 6:43pm EDT

I asked last week. He wants to give your body time to heal after surgery without throwing you into HP.

Sunday, June 9, 2013 at 7:29pm EDT

I am happy that my LP headache is not as bad, but it's still LP that comes on as soon as I am upright. The tests showed no leaks, which is why I believe my remaining symptoms come from the punctures. I've had HP headaches with Dr. Gray. That is not what I have now. Getting post op care at home is not easy because my local doctors do not believe in leaks. I'm not sure Dr. Schievink understands my local doctors resistance. If I did not need a patch in 3-4 weeks great, BUT I'd feel so much better if I had a back up plan where I could get a patch in 3-4 weeks. I don't have one. Flying 3000 miles back to Cedars for a patch is not practical. The pain from the surgery is manageable.

Monday, June 10, 2013 at 5:30pm EDT

The research into chronic spinal fluid leaks is in it's infancy. Not many doctors believe that someone can live with pain that severe for so long. He allows flying so soon after surgery, so that is not a problem. What [doctors don't] understand is how backwards medical care is in PA, even in Pittsburgh. Duke and Cedars have so much more.

Tuesday, June 11, 2013 at 9:02pm EDT

My reports from Cedars all say no significant cysts found. Dr. Schievink doesn't want to be very aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don't feel better in 3-4 weeks, he would consider the patches. I told him that I had no idea what doctor to see closer to home. He didn't directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow.

Tuesday, June 11, 2013 at 9:06pm EDT

My head doesn't feel better yet. It will take time to know how successful the surgery will be. Dr. Schievink doesn't want to be very aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don't feel better in 3-4 weeks, he would consider the patches. I told him that I had no idea what doctor to see closer to home. He didn't directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow.

Tuesday, June 11, 2013 at 9:12pm EDT

My head doesn't feel better yet. It will take time to know how successful the surgery will be. Dr. Schievink doesn't want to be too aggressive treating low pressure with blood or glue patches because I felt better at 4ml per hour during the CSF infusion. He still said that if I don't feel better in 3-4 weeks, he would consider fibrin and or blood patches. I told him that I had no idea what doctor to see closer to home. He didn't directly say that he knew a doctor in Pittsburgh, but I got the feeling that he does. I am going home tomorrow. I can't even dress and undress myself. I'll find a way to manage at home.

Tuesday, June 11, 2013 at 9:33pm EDT

Orthostatic headaches are not always from CSF leaks. My headache went away with the infusion and when Dr. Gray added Elliot B, so CSF pressure is involved even if it is not a leak.

Wednesday, June 12, 2013 at 1:02am EDT

Dural reduction surgery should take care of increased compliance of the lower CSF space. :-)

Wednesday, June 12, 2013 at 10:20pm EDT

I just sent this message to Dr. Schievink… We flew home today. We had first class tickets, a non-stop flight and wheelchair assistance. My headache, eye and ear symptoms are now as bad as they were when we flew out to CA. My surgical pain is manageable. The headache is not. What should I do?

Wednesday, June 12, 2013 at 10:24pm EDT

I strongly believe that I am leaking where the lumbar drain and 18 gauge needle for the DSM were used but he won't treat those for 3-4 weeks.

Wednesday, June 12, 2013 at 11:52pm EDT

Zzzzzzzzzzzz ZZZzzzzzzzzzzz. That's the sound of Fukitol helping us sleep. Fukitol is the best drug known to man!!!! We came home today. [We had no choice. There was a Game Convention in town, *all* hotels were booked a year in advance. We had no place to stay. We thought that we should stay. Relatives in the area were out of town.]

My headache, eye and ear symptoms are now as bad as they were when we flew out to CA. My surgical pain is also a problem. I strongly believe that I have new leaks where they punctured my dura for testing. They used large needles that statistically cause additional leaks. [As usual Karen had studied every detail. She believed a needle this big would cause a leak that would not heal for her. She asked everyone why they used such a large needle, and something about the type. Beveled Point? I do not recall of that is good or bad? Sadly no one really took her seriously. She asked many people, they simple did not know how to respond to a patient with this level of education to question a procedure. Different hospitals do it differently. Ask why holes from procedures are not repaired. There many be good reason, there many not, at any rate have the discussion.]

Wednesday, June 12, 2013 at 11:36pm EDT

He didn't find a leak in surgery. He did dural reduction surgery.

At LAX on the way home today, I had wheel chair assistance.

Always ask for wheelchair assistance! At any airport, the pushers know the shortcuts around the airport!

They [The TSA] wanted to pat me down INCLUDING my incision for security. They weren't happy just viewing it. My incision is too tender for anyone to pat. I didn't want an infection from their dirty hands touching it either. They weren't backing down, and I wasn't either. They had three security officers with me! [There were far more than three. I was dealing with the luggage at the X-Ray machine watching this unfold, and could not help.] Finally, I asked if they would allow me to go through the walk through scanner and NOT pat my incision. They allowed that. Apparently, they did not think that I could walk at all so did not offer me the option of walking through the scanner. [They kept asking her to reach above her head to hold the bar. She could not do that due to the incision. They finally allowed her to go without stretching to reach the bar.]

[We also had problems from TSA with Joie picking us up at LAX. We could see Joie 200 feet from us. The TSA kept yelling at Joie to leave, and would not let her drive to where we were. Karen was in no shape to walk, she was still in wheelchair. I finally ran down to Joie's car and started throwing luggage at her car trunk. This confused the TSA and they went away.]

TSA Responds to XKCD Bag Check. Part of Hubby's Day Job is designing battery chargers, this could be us.

Thursday, June 13, 2013 at 11:26am EDT

I am home. My head pain is the same as I had before surgery. I don't think surgery is a failure, I believe the drain site is the problem. … Dr. Schievink wants to wait 3-4 weeks to see what happens before treating it.

Thursday, June 13, 2013 at 5:31pm EDT

Ten Fukitol pills really helped me sleep last night. [Sounds excessive to me. No longer have any of her medication in the house. It was all turned over to the State Police investigating Karen's suicide.]

Thursday, June 13, 2013 at 5:39pm EDT

I do not question the success of my surgery in Los Angeles, (yet). I don't think that my spinal headaches or other neurological procedures will improve until the lumbar drain site is treated. I believe the drain caused a new spinal fluid leak. The resident/intern that removed my drain did not know what he was doing, and the attending doctor wasn't there. I wasn't too assertive because the plan was to do surgery on that area, and fix any holes. In surgery, they decided not to operate on that area. … I didn't feel heard. My limitations right now are so many that it is easier to say what I can do. I can get myself in and out of bed. Go for short walks on level surfaces. I can sit only for short times. I can't dress or undress myself. I can't lift anything heavier than a glass of water. Depending on the effects of pain medication, I can drive.

Thursday, June 13, 2013 at 5:39pm EDT

They cut through bone, muscle, ligaments, and other tissue.

Thursday, June 13, 2013 at 6:46pm EDT

I expected my head pain to change, or at least feel different. That's not happening. When they injected 20cc of dye for the CTM, I got very HP for about an hour and a half, then went back to LP. There was an hour delay between the myelogram and CT portion of the test. By the CT portion, I was almost in LP again. I expected them to see some contrast in my epidural space. They saw nothing.

Thursday, June 13, 2013 at 7:47pm EDT

Technically, any anesthesiologist can do blood patches. Dural punctures are common with epidurals during child birth. With my history, I won't allow any anesthesiologist or interventional radiologist to poke needles in my spine. … Very few doctors do fibrin glue patches. Fibrin glue patches have a higher success rate, and have more complications. They do blood and fibrin glue patches at Duke. I've had both there. I sent Dr. Schievink an email about my security problem at LAX. If security patted my incision, I could not hold back the screams from the severe pain increase! That 'patting' could undo something he did in surgery. My painful screams would cause more security problems. I may have called you for a place to stay while we checked Amtrak, if security did not let me through. :-(

Thursday, June 13, 2013 10:40 PM EDT

To: Wouter Schievink, M.D.
Subject: Karen Paddock, issues coming home.

My head continues to feel better lying down. We flew home today. We had first class tickets, a non-stop flight and wheelchair assistance. My headache, eye and ear symptoms are now as bad as they were when we flew out to CA. My surgical pain is manageable. The headache is not. What should I do?

Thursday, June 13, 2013 at 11:10pm EDT

Maybe LAX thought the tiny bit of swelling around my incision was a bomb? When your dura leaks CSF long-term, your brain compensates by making extra CSF to try to raise the pressure. Seal the holes, your brain continues to make extra CSF. Now you have intracranial hypertension which is just as painful in a different way. I had rebound intracranial hypertension after my treatment at Duke last fall. Pressure lowering medication did not lower the pressure enough. I made an emergency trip to Duke for them to put a 20 gauge hole in my dura, and leave there as a natural shunt. I continued to need pressure reducing medication but at a lower dose. I stopped taking the pressure reducing medication cold turkey in February. Within 10 days my CSF pressure rose high enough to blow more holes in my dura, putting me back into intracranial hypotension. Current testing technologies do not always find the holes. … My thoughts are there is a huge size difference between the hole a single 20 gauge needle leaves, and the two holes 14 gauge and 18 gauge that I now have. The two large holes keep me in intracranial hypotension, whereas a single smaller gauge hole did not.

Friday, June 14, 2013 at 12:00am EDT

Do you feel that you got any lasting benefit from the HV blood patches? I feel that I have some idea where my leaks may be from one of my patching sessions at Duke. Even if he would have suggested it, I would not have allowed surgery on those areas without the tests objectively showing a leak.

Friday, June 14, 2013 at 8:01am EDT

Did you have a DSM? How long have you had symptoms? I am worried that my headache is unchanged. I did the home test for POTS but my BPM increased only 19. I don't have symptoms of POTS. I don't want to have the tilt table test because that would aggravate my chronic tendon problems. Maybe my chronic tendon problems are caused by a connective tissue disorder, and that could affect my dura. No one can answer that.

Friday, June 14, 2013 at 9:45am EDT

It's a long hard recovery. I can't do more than get out of bed and walk small amounts. It's too early to know if surgery is successful.

Friday, June 14, 2013 at 11:12am EDT

Sometimes I feel it was a waste. Other times, I wish … patched the lumbar drain site. I believe that I am leaking there. I feel like I failed Dr. Gray and Dr. Schievinks treatment and am out of options. [A patient should never feel they failed the doctors. :-(]

Friday, June 14, 2013 at 12:27pm EDT

I'm sure I'm leaking at my incision. This is not right.

I took pictures of the increased swelling in my back and sent them to Dr. Schievink. My headache has gotten horrendous and is better lying down. Dr. Schievink wants to see me back in L.A. He said it looks like a collection of CSF at the surgical site. I don't have a date. [We were home all of three days. :-(]

Friday, June 14, 2013 at 1:10pm EDT

I don't have a choice, I have to come back. The skin is stretched so much around the incision that it feels like the incision is about to rip open. My head is horrendous. If … to me about the headache and not required that I wait 3-4 weeks for further treatment, I wouldn't have all this hassle and expense again.

Friday, June 14, 2013 at 1:16pm EDT

I am worn out and exhausted. I am supposed to be recovering from major surgery, but I can't with all the traveling. No one closer to home deals with this condition.

Friday, June 14, 2013 at 1:39pm EDT

… It may not be a fair comparison but I knew how my headaches changed after patching with Dr. Gray They didn't go away, but changed. I expected a similar thing to happen when I was successfully patched during surgery. I know my body.

Friday, June 14, 2013 at 4:16pm EDT

I don't know when we will fly out yet. I see the doctor in L.A. on Tuesday with surgery on Wednesday. I am exhausted. I am supposed to be resting to recover from major surgery last week. I can't rest, and have another major surgery next week…

Friday, June 14, 2013 at 2:18pm EDT

My hubby will go along. The expense of two trips is horrendous. It's not coming out of the site, but he thought it looked like a CSF collection at the site.

Friday, June 14, 2013 at 7:32pm EDT

… Do you have any idea what effect Bob working remotely for many weeks'months could have on keeping his job? I have to do this treatment to save my life. … I don't know if Bob would lose his job but I always worry… [Clearly the end result of Karen's suicide shows I spend to much time at work. I set in front of a computer there ten hours a day, why can't I do it at home, where I have a better computer? Resume anyone?] …

The emotions and feelings that I deal with of watching life go by as healthy people can have fun while I can barely care for my own activities of daily living are difficult. Add the stress of making doctors appointments, making sure things at home are cared for, traveling, etc when I feel physically awful, keeping bills paid while we are gone is worse than awful. Planning the logistics of a long distance trip, etc. I should be resting to let my body recover from surgery. I can't do that when complications need treated. I hope that you never get a chronic painful illness. You'll learn the hard way that many of your friends will abandon you after a few months. Your support network will become smaller just when you need additional support. …

I see the doctor in L.A. on Tuesday with surgery on Wednesday. I am exhausted. I am supposed to be resting to recover from major surgery last week. I can't rest, and have another major surgery next week. … if you're already coming to [our area] to shop for yourself, a simple phone call asking me if I need anything at the store. Another example, make extra food when you make a meal and … drop it off on [the way by]. Simple thoughtful things are appreciated. There are ways to be helpful that do not consume much of your time.

[I can not emphasis enough the importance of the Little Things. A phone call asking if you need something, run the sweeper, brush the dog. Sadly people that do not have chronic illnesses do not understand this.

“I wish to do something Great and Wonderful, but I must start by doing the little things like they were Great and Wonderful” – Albert Einstein.

To someone in pain the Little Things *are* Great and Wonderful!]

Saturday, June 15, 2013 at 10:47am EDT

The CSF collection in my back is getting larger, and the skin stretching tighter. We don't want the incision to rip open from that pressure. I emailed the doctor asking what to do. He put me on the pressure reducing medication, Diamox. I already had a low pressure headache, Diamox makes that headache, nausea, vision and ear issues related to low pressure so much worse but we have to lower the pressure on the incision.

Saturday, June 15, 2013 at 1:16pm EDT

I have chronic cerebral spinal fluid leaks. The research into this condition just took off within the past 10 years.

If you want treated, you have to go where the research is being done. Local doctors don't treat this.

The research is being done at Cedar Sinai in Los Angeles. I am having complications. The cerebral spinal fluid collection in my back is growing larger and the skin stretching tight.

I emailed the surgeon, He wants me to start Diamox, a spinal fluid pressure reducing medication so the pocket doesn't rip open the incision. I am already in too low CSF pressure because of the CSF collection. That already low pressure headache, nausea, eye and ear issues are so much worse on Diamox. I expected that.

I can't believe that I am flying across the country again so sick. I should be resting and recovering from the first surgery. That is impossible to do planning a second trip on such short notice.

Saturday, June 15, 2013 at 3:03pm EDT

We'll fly out tomorrow. I see the doctor on Tuesday with surgery on Wednesday.

Saturday, June 15, 2013 at 3:41pm EDT

WOW..I am astounded that my cousin in L.A. [Joie Shettler https://www.facebook.com/birzy ] is being so kind and helpful. I never expected this! I must be inconveniencing her, but she certainly does not make me feel that way! I am shocked that someone cares so much! I have no idea how to be a good house guest when I am so sick other than buying groceries for them.

Saturday, June 15, 2013 at 3:41pm EDT

The CSF collection in my back is growing larger and the skin stretching tight. I emailed Dr. Schievink. He wants me to start Diamox, a CSF pressure reducing medication so the pocket doesn't rip open the incision. I am already in low pressure because of the CSF collection. That already low pressure headache, nausea, eye and ear issues are so much worse on Diamox. I expected that. I can't believe that I am flying across the country again so sick. I should be resting and recovering from the first surgery. That is impossible to do planning a second trip on such short notice.

Sunday, June 16, 2013 at 1:56am EDT

We fly to CA tomorrow. [She actually means today, at ~9AM Sunday out of Cleveland, she is not sleeping and does not realize it is two in the morning.] This flight is going to be more rough than the last one. I've got this big CSF pocket sticking out of my back that hurts. That has me in low pressure without the Diamox. Dr. Schievink has me taking Diamox to try to reduce the size of the pocket. The even lower low pressure makes me so sick…. [Remember this later, it is important.]

Monday, June 17, 2013 at 10:39am EDT

I haven't talked with the doctor since Saturday. I must have said something on Saturday that concerned him. Here is his message this morning. “I am glad you arrived safely. Please refrain from eating anything and come to the emergency room. We will try to do surgery today.”

Cedar Sinai ER

Monday, June 17, 2013 at 11:30am EDT

[

We called a Taxi to get us from Joie's to the hospital. When I tell the driver we want to go to Ceadr's ER he has look of panic on his face. I was afraid he would not take us. Told him it was not any emergency, even tho Karen physically looked like it was. It is 70+ miles from Joie's. to the hospital.

We arrive at the ER and are told to wait to register.

The only empty seats are next to a lovely looking young lady and a fellow rolled up on the seat doubled over in pain holding his gut moaning. The moaning fellow makes several urgent trips to the bathroom. Looks like a server case of food poisoning to me. We find from his girlfriend they have already been there two hours waiting like this.

After a few more trips to the bathroom the fellow says he feels a bit better and tries to lay down on the floor. The seats have dividers between them, there is no way to lay on them. People with leaks need to lay down! We've now been waiting in ER for an hour and Karen decides to join the fellow on the floor.

Within seconds of Karen laying on the floor a nurse and a security guard appear out of thin air and demand that they get off the floor she says: “The floor is dirty! If you want to lay down go outside {Into the parking garage ER pick-up area} and lay on the benches outside!”

#()$*#()*! When was the last time the benches outside in the parking area was cleaned compared to the floor in the ER???

The moaning fellow goes outside as does Karen. His girlfriend wants to stay in the ER in case he is called for, he has now been there three hours, while also wanting to be with him outside. I tell her to go out with him and I'll get them if someone comes for him. She comes in and out a few times over the next half hour. They decide to leave and go someplace else for help. They wasted 3.5 hours in this place. I have often wondered how they made out. I'll never know. Our encounters with each other in life affect us both in ways that we will never know.

After an other half-hour for us waiting they finally register Karen and put her in a room where she can lay down.

An other half-hour passes and Dr. Schievink's resident doctor Dr. Ross arrives. We had meet her on the last trip here. She was a knowledge person about CSF Leaks and showed concern for Karen. Karen is admitted and moved to a real room. After leaving ER things went well, as far as the hospital stay was concerned. I slept on a cot in Karen's room for the next several days. Karen and I are both exhausted, we have not slept or ate well and I've not been taking my usual regiment of vitamins because I did not want to have to deal with the TSA. I was already carrying Karen's massive cache of meds with me as we were going through the airport. Karen and I never agreed when it came to medication. I saw what it was doing to her and avoid it at all costs.

Every trip to any ER related to CSF Leaks has been an absolute disaster! This needs to change!

Karen continues: ]

Monday, June 17, 2013 at 4:54pm EDT

Surgery was moved up to today. I don't know the surgery time. I am not even in pre-op.

Monday, June 17, 2013 at 5:09pm EDT

I saw Dr. Ross in the ER. She agreed that that looked like a CSF leak.

Monday, June 17, 2013 at 10:13pm EDT

[Me speaking.] Karen is out of surgery, have not seen her yet. Doctor said he did not find anything wrong with the previous sutures. For unexplained reasons the suture was acting as a one-way valve letting CSF accumulate in a 'pocket'. He said he put in more artificial dura to prevent this one-way valve action. I've been told that she needs to lay down for 24 or 48 hours (been told both) before moving at all.

Tuesday, June 18, 2013 at 10:30am EDT

I am out of surgery. He drained the CSF pocket. He didn't find a direct leak site. That's not surprising. He began pressure reducing medication last Saturday after seeing the pictures that I sent him of my back. That medication makes my low pressure headache so much worse. The pain from this headache *stretching the limits of the pain that I can handle*. [The pain level Karen could handle would have most people in the world in a fetal position screaming! This is important later.] Pain medication is not all that effective [Many cause lower CSF pressure. Many narcotics actually dry up CSF which you do not want if your pressure is already to low!]. I've told the nurses. They'll tell the doctor, and I'll tell the doctor today.

Tuesday, June 18, 2013 at 6:45pm EDT

Last Saturday, the doctor put me on a CSF pressure reducing medication, Diamox. The idea behind putting me on pressure reducing medication when I was already in low pressure was to take the pressure off of what caused the leak into the pocket. Post surgery, the idea is to take the medication for the same reason. It's this type of headache that is pretty resistant to pain medication not with me but practically everyone. The doctor was just in again. The plan is to reduce Diamox from three times a day 500mg, to twice a day 500mg today. I'll be permitted out of bed tonight. Tomorrow he'll look at my incision. If he sees no CSF swelling, he plans to change Diamox to Hydroclorothiazide. If I am still here by the end of the week, he suggested a blood patch. A blood patch is where they take blood from you arm and inject it near your dura, the covering of your brain and spinal cord.

Tuesday, June 18, 2013 at 7:08pm EDT

[How do you feel?] I am too exhausted to have much emotion left.

Tuesday, June 18, 2013 at 7:11pm EDT

Last Saturday, Dr. Schievink put me on Diamox. The idea behind putting me on Diamox when I was already in low pressure was to take the pressure off of what caused the leak into the pocket. Post surgery, the idea is to take the medication for the same reason. Dr. Schievink was just in. The plan is to reduce Diamox from three times a day 500mg, to twice a day 500mg today. I'll be permitted out of bed tonight. Tomorrow he'll look at my incision. If he sees no CSF swelling, he plans to change Diamox to Hydroclorothiazide. If I am still here by the end of the week, he suggested a blood patch.

Wednesday, June 19, 2013 at 6:54pm EDT

[Me speaking.] Dr. S said she might be able to leave the hospital tomorrow or the day after. We are staying at cousins in the LA area. She is to come back sometime next week for a blood patch. Right now they are trying to get her to go to the bathroom, she should have gone by now. Nurse says this happens about 50% of the time.

Wednesday, June 19, 2013 at 7:07pm EDT

[Me.] She went, and is now sleeping again. She says it is from having two major surgeries so close together and the flights home and back. I hope that is all it is.

Thursday, June 20, 2013 at 12:32pm EDT

[My response to a question here.] She is still mostly sleeping. Probably a good thing at this point.

Thursday, June 20, 2013 at 2:53pm EDT

Bob works from here. My back hurts, but my head is still a bit worse.

Thursday, June 20, 2013 at 6:43pm EDT

I am being discharged. The resident said that if I still had postural symptoms next week, they would give me a blood patch. Bob has a cold. Pray that I don't catch it. Sneezing and coughing are on the list of things that I can't do.

[This prayer failed. She did get it. { http://www.fluidsbarrierscns.com/content/6/1/17 : “The influence of coughing on cerebrospinal fluid pressure in an in vitro syringomyelia model with spinal subarachnoid space stenosis” }]

Thursday, June 20, 2013 at 6:45pm EDT

I am being discharged. The resident said that if I still had postural symptoms next week, they would give me a blood patch. Bob has a cold. Pray that I don't catch it. Sneezing and coughing are on the list of things that I can't do.

Friday, June 21, 2013 at 5:36pm EDT

University of Pittsburgh is the closest to me. He said my dura looked abnormal, but didn't go into detail when asked.

Friday, June 21, 2013 at 6:11pm EDT

Dr. Schievink gave me flexeril along with pain medication. I feel that flexeril helps some. It does not take away all the pain.

Friday, June 21, 2013 at 6:52pm EDT

I won't respond to posts that bash someone. No doctor is God. They both have their pros and cons. They both have successes and failures.

Saturday, June 22, 2013 at 4:31pm EDT

Bob has cold. Pray that I don't get it because coughing and sneezing are things that I am not supposed to do.

Sunday, June 23, 2013 at 4:18pm EDT

Some, but not all of my pain is because I am not being active. I can't be too active, yet.

Saturday, June 22, 2013 at 7:45pm EDT

I had a second surgery to fix the spinal fluid leak that occurred either during, or after surgery. I still have more postural symptoms than I am comfortable with. I see the doctor on Tuesday for a followup. I start in-home PT here in L.A. next week. I am not sure why that was ordered. I go up and down stairs just fine, and can walk okay.

Saturday, June 22, 2013 at 9:53pm EDT

I have only my husband. Other than him, I am on my own. Anyone local that cares about me has their own health issues that prevent help.

Saturday, June 22, 2013 at 11:08pm EDT

I can walk unassisted. I limit myself to a couple short walks per day. My surgery pain is quite bad.

Saturday, June 22, 2013 at 11:11pm EDT

One day at a time. I struggle with wanting to end it all, if you know what I mean. Mine began with a car accident when I was 20. Whether I had an underlying weakness in my dura or not is unknown. Dr. Schievink cannot find the leak site.

Saturday, June 22, 2013 at 11:18pm EDT

You could have more than one leak sight.

Dr. Schievink did a full spine MRI with myelography, a repeat MRI with myelography of my thoraric spine because something didn't look right at T2. My CT myelogram was normal. My DSM was normal. They told me that they will not do surgery on multiple locations at the same time in an attempt to control rebound HP. If I was in your position, I would be just as upset as you are. Spend all the time and money and not be any better.

Sunday, June 23, 2013 at 10:26pm EDT

[Karen is referring to someone else here, not herself.] What does Dr. Schievink think it is, if it's not leaking? Did this fluid pocket show up on any scans at Cedars? I really love NOT how these doctors let us hanging.

Tuesday, June 25, 2013 at 7:58pm EDT

I saw Dr. Schievink for my followup to the second surgery. I can be up for about 30 minutes before all the positional symptoms start. That's an improvement. Prior to surgery, the symptoms started immediately when I got up. He suggested trying a blood patch. The person responsible for scheduling wasn't there today but should be tomorrow. [Two people can't be trained in scheduling??]

Tuesday, June 25, 2013 at 8:28pm EDT

He said he wouldn't put in too much blood because he did not want me to leak where he did surgery.

Friday, June 28, 2013 at 11:42pm EDT

[Doctor] did a 13cc blood patch at T11/T12. I have HP tonight that I did not have earlier. Keep your fingers crossed for me.

Saturday, June 29, 2013 at 11:48am EDT

I feel HP at bit in the top of my head and front. I am afraid of my cold undoing the patch or ripping open the incision. I caught a cold a couple days ago. Coughing and sneezing which I can't help but do, are on the list of things not to do so soon after surgery or a blood patch. These things can rip open the incision or undo the blood patch.

Tuesday, July 2, 2013 at 9:16pm EDT

The doctors being clueless. The research into this condition just took off within the last decade. [There are various funds being setup to educate doctors. Please support them.]

howkarenreallyfelt.jpg

This is the last picture ever taken of me by my cousin in L.A. Joie Shettler. [Joie where were we when you took this? You guys were on the pier at Manhattan Beach. It was a nice day and even though it was painful for her (physically) she seemed to enjoy it.]

Friday, July 5, 2013 at 11:13am EDT

But I know this is LP, terrible LP. It's not going to get better without a blood patch. I know my body. Waiting for a blood patch is silly when I know what helps. I can't take pain medication for my back now because the medication makes my head hurt worse

Friday, July 5, 2013 at 11:32am EDT

If it were easy, I would. All the doctors around here have a 6+ month wait. When a new doctor sees my medications they think I am a drug attic and that sours the relationship. [She rarely took any of that crap as it made her headache *worse*.]

Friday, July 5, 2013 at 11:36am EDT

I have a couple pain meds but they are not all that helpful and I don't take them regularly. New doctors get ansy when they see the list.

Friday, July 5, 2013 at 11:59am EDT

Our state has a drug data base that records each time I have a pain relieving prescription filled. Dr's can check this to see if their patients are being honest, or I would leave it off the list.

Sunday, July 14, 2013 at 9:16pm EDT

I cannot put into words what 24/7 severe physical pain does to a person… 'It's very socially isolating!!

Now add the daily neurological symptoms, eye issues, hearing issues, face burning, dizziness, and nausea. These symptoms change throughout the day.

I go to Pittsburgh on Friday for another blood patch. They take blood out of my arm and inject it into my spine. I had this procedure done in L.A. but the coughing and sneezing from the cold blew the patch. My cold is better.

I had my stitches out last week. I move around as much as I can. Having two major surgeries last month and catching a cold took all my energy. I get exhausted very easily.

Monday, July 22, 2013 at 6:10pm EDT

My vision and hearing are fine. They were not fine prior patch. Very low pressure makes it hard for me to hear, and gives me blurry vision.

Previous experience taught me that HP does not affect my ears. HP doesn't cause blurry vision. I get black areas of vision that progress to moments of complete blindness if pressure goes too high.

Monday, July 22, 2013 at 6:17pm EDT

In December, my pressure got too high despite 3000mg of Diamox and 100mg HCTZ, Dr. Gray put in a hole with a 20 gauge needle. In February, I thought I had too high of pressure and was on 3000mg of Diamox again. When Dr. Gray did a pressure check, my pressure was too low, so I have been fooled into believing that I had HP when it was LP.

Monday, July 22, 2013 at 9:17pm EDT

For me, HP being this bad so soon is bad. I am not being active. I am up to 1000mg of Diamox per day. Apparently, that's not enough. Last fall it took me 5 weeks to make it to 3000mg and that did not control the HP. Dr. Gray had to put a hole in my dura. It's been 3 days and 1000 is already not enough. This makes me nervous.

Thursday, July 25, 2013 at 3:39pm EDT

The blood patch put me into rebound intracranial hypERtension. I went too far in the opposite direction from too low to too high of pressure. This is an expected complication, and can last for up to a year even with medication, salt restriction, and lowering my activity level.

It's still very painful and just as disabling as low pressure.

I can't do more than walk to my mailbox. No walking in the yard. No walking in stores. No grocery shopping, etc.

Last winter I was sealed for 4 months and the rebound intracranial hypERtension blew additional holes in my dura.

Some people simply have poor quality duras that are prone to developing holes and disabling headaches no matter what. I think I am one of these people.

Tuesday, June 25, 2013 at 7:50pm EDT

I can be up for about 30 minutes before all the positional symptoms start. Prior to surgery, the symptoms started immediately when I got up. He suggested trying a blood patch.

Tuesday, June 25, 2013 at 7:57pm EDT

I saw Dr. Schievink for my followup to the second surgery. I can be up for about 30 minutes before all the positional symptoms start. That's an improvement. Prior to surgery, the symptoms started immediately when I got up. He suggested trying a blood patch. The person responsible for scheduling wasn't there today, but should be there tomorrow. A blood patch is where they take blood out of your arm and inject it into your spine.

Saturday, June 22, 2013 at 8:15pm EDT

No leak is minor. Have you heard back from Dr. Schievink?

My head is a little better, but not as good as I had hoped. I start in home PT next week. I understand not wanting to live this way. I battle those feelings.

Tuesday, June 25, 2013 at 8:26pm EDT

Bob's cold is getting better.

Wednesday, June 26, 2013 at 12:32am EDT

My reports say “No significant nerve root sleeve cysts.” I asked him what that meant, he said that I didn't have any nerve root cysts that weren't considered normal. I asked him about other types of cysts, as my reports do not mention any. He didn't really answer that question.

Wednesday, June 26, 2013 at 7:30pm EDT

They use a 14 gauge needle for the CSF infusion. They say they need that big of needle for the catheter to fit through it. They use an 18 gauge needle for the DSM. I had both of these at L2/L3. I [think those need patched] convince Dr. Schievink to patch those. The blind blood patch he will do will be at T12/L1. I know that I am still leaking from somewhere…

Thursday, June 27, 2013 at 12:08am EDT

Darn pain gets to be so bad… I had to have pre-op tests today for the blood patch. I told them I just had surgery last week so why did I need pre-op tests again. They said pre-op tests were only good for two weeks. The blood patch is not scheduled. I will call them tomorrow about it. The sooner it's done, the sooner we'll go home. [These particular set of tests made no sense to us at all. The 'two week' thing didn't really explain why it was needed.]

Thursday, June 27, 2013 at 9:47pm EDT

I was allowed up only to go to the bathroom and wash. I get patched tomorrow. I think I may be coming down with Bob's cold…

Friday, June 28, 2013 at 11:47pm EDT

What is the weather like in PA?

I am still in L.A. [Doctor] did a blood patch at T11/T12. I have higher CSF pressure tonight that I did not have earlier. Keep your fingers crossed. This happened before temporarily after blood patches.

Friday, June 28, 2013 at 11:56pm EDT

I wish that I had the right words to comfort your, but I don't. So many things going on. The stress from one negatively impacts the others. My concern is that I now have Bob's cold. I don't want the coughing and sneezing to blow the patch, or the surgery.

Saturday, June 29, 2013 at 12:03am EDT

He was okay. I am concerned that my coughing and sneezing from Bob's cold that I caught will blow the patches or surgery.

Saturday, June 29, 2013 at 11:50am EDT

I caught a cold a couple days ago. Coughing and sneezing which I can't help but do, are on the list of things not to do so soon after surgery or a blood patch. These things can rip open the incision or undo the blood patch. I'm being as gentle as I can with the coughing, but my incision is sore from it.

Saturday, June 29, 2013 at 2:20pm EDT

* I 'pretend' that I am not hurting, when I am with others. It's hard. * chronic_pain_smile.jpg

Saturday, June 29, 2013 at 6:36pm EDT

I have medication for the cough which helps but doesn't take it away. Blowing my nose is just as painful.

Saturday, June 29, 2013 at 7:05pm EDT

I was patched yesterday. After lying down at Cedars for 4 hours after the patch, I still had LP. By the time I went to bed last night it was slight HP. My cold got worse during the night, so I don't know what head pain comes from what at the moment.

Sunday, June 30, 2013 at 1:19am EDT

I was successfully patched by Dr. Gray from October to February last winter, and went through having both HP and LP. I had two surgeries from Dr. Schievink this month and a blind blood patch yesterday. So far, the blind blood patch is helping. Pray that I don't blow the patch with coughing and sneezing from this cold!

Monday, July 1, 2013 at 6:29pm EDT

The blind blood patch on Friday has made a positive difference. I keep hoping and praying that my coughing and sneezing does not blow the patch or surgery. I am resting as much as I can. We may go home on the 4th.

Monday, July 1, 2013 at 6:36pm EDT

I had no HP after either surgery. In fact, I stayed in LP. The blood patch on Friday has given me slight HP.

Thursday, July 4, 2013 at 5:44pm EDT

My cold is better but my head and back are very bad.

Thursday, July 4, 2013 at 7:48pm EDT

I feel the worst that I have ever felt. I had 4 glorious headache free days after the blind blood patch. I caught a head cold a few days after my second surgery. I emailed him about that. His only suggestion was to not hold a sneeze in, which I already knew. I believe the coughing and sneezing from the cold blew out something from the surgery or blood patch. … My cold is better but my head and back are very bad. Your question … about contrast leaking out of holes they put in your dura hiding nearby holes is an excellent question. I wonder if this is why he found 'no leaks' on me when I KNOW that I am leaking.

Thursday, July 4, 2013 at 8:15pm EDT

Since I don't know how far down from T11/T12 my 13 cc of blood went, I don't know if it covered the drain and DSM site. I feel so horrible that I don't know what to do.

Friday, July 5, 2013 at 9:45am EDT

Thanks for asking how I am. I caught a chest cold a few days after surgery. The doctor's only suggestion was to not hold a sneeze in, which I already knew. My cold is better, but I think the coughing and sneezing blew out something from the surgery or blood patch. [Sadly it did. :-( This made *ALL OF THIS* a waste! :-( #)$*#$*#$ !!!]

My head is the worst that I have ever felt. I had 4 glorious headache free days after the blind blood patch. I believe the coughing and sneezing from the cold blew out something from the surgery or blood patch, and this is why I am nearly incapacitated with this headache and other neurological symptoms now. … he wants me to wait … before doing anything so I came home.

My cousin in L. A. is a WONDERFUL person! Her and her husband are very busy! Not once did they give us vibes that we were intruding. I needed home health for almost two weeks in their house. They were very supportive! She wouldn't allow me to do (almost) anything in the house. She gave us a house key so we could go to the doctor while they worked. We used her clothes washer and dryer. We babysat their 7 and 10 year old. She didn't entertain us or provide transportation as they have their own lives. That's totally understandable. Bob spent a lot of his time out there working for his employer back home. We contributed toward groceries, and Bob did some house cleaning and cooking. All of this is okay because she saved us thousands on a hotel bill. I got to know them better, too. I NEVER expected this from them! Now that I know their tastes, we'll send a surprise thank-you gift. :-)

Friday, July 5, 2013 at 9:47am EDT

I can't do much of anything, yet.

Friday, July 5, 2013 at 4:20pm EDT

I had a hard time getting my family doctor to order that MRI. Even if it showed something, Dr. S could say that because surgery was only two weeks ago, the findings could have been there before surgery and not enough time has past to know if surgery will make things better.

Friday, July 5, 2013 at 4:22pm EDT

My MRI was normal :-( I must be crazy because my tests are all normal.

Friday, July 5, 2013 at 6:42pm EDT

People can surprise us. My cousin that we stayed with in L.A. has always been on the fringes of my life. She WOW'ed me with support. I didn't expect her to support me. I don't think that I can ever repay her! …

Sunday, July 7, 2013 at 8:46am EDT

I came home on the 4th. Sorry, I forgot to tell you. My memory is bad. I feel awful. I think this chest cold that I developed a few days after surgery undid something the doctor did.

Monday, July 8, 2013 at 7:54pm EDT

I am home. I believe the chest cold that I developed a few days after surgery blew out something. I was not supposed to cough and sneeze that soon. I am nearly incapacitated from the headache with the associated ear and eye symptoms.

Monday, July 8, 2013 at 6:26pm EDT

I am in awe that my cousin and her husband were so kind and helpful. I did practically nothing in return…they would not allow me. I can never repay them for what they did for me! … I heard from Dr. Schievink, the doctor in L.A . He's trying to get the name of a local anesthesiologist for a blood patch. A blood patch is where they take blood from your arm, and inject it into your spine.

Monday, July 8, 2013 at 7:27pm EDT

I believe the chest cold that I developed a few days after surgery blew out something. I was not supposed to cough and sneeze that soon. I am nearly incapacitated from the headache and associated ear and eye symptoms.

Monday, July 8, 2013 at 7:22pm EDT

Dr. Schievink is trying to get me the name of a local anetheologist for a blood patch. I am nearly incapacitated with this headache and ear and eye symptoms. I am socially isolated at home. I have only one local person that I call a friend. She understands because she has her own health issues. No one stops to visit me. I get so lonely. We live in a rural area.

Monday, July 8, 2013 at 9:41pm EDT

A gift card to the restaurant “In and Out Burger”. We don't have that restaurant here in PA, so I ordered a gift card from their website. It should be here later this week. I will put it in a personalized Thank-You card. [For letting Karen and I stay at Karen's cousin house.]

Monday, July 8, 2013 at 10:55pm EDT

Because I feel so awful. [Was asked why she was up this late.]

Tuesday, July 9, 2013 at 2:02pm EDT

Did you sleep last night? I did for about 6 hours. I can get a blood patch at UPMC in Pittsburgh. They won't let me schedule until they receive the prescription from the L.A. doctor. The L.A. doctor said that it would be sent today.

Tuesday, July 9, 2013 at 6:09pm EDT

Dr. Schievink said that I can get a blood patch at UPMC in Pittsburgh. They won't let me schedule until they receive the prescription from the L.A. doctor. Dr. Schievink said that it would be sent today. Scheduling in Pittsburgh said they would call after they received the prescription. I did not hear anything today. Pray that the time change is why. I will call scheduling in Pittsburgh tomorrow to see if they got it. If not, I will call Dr. Schievink's office.

Tuesday, July 9, 2013 at 6:56pm EDT

Thanks for asking about my back. I had complications from the first surgery. I had to go back to Los Angeles for a second surgery to fix the complications. A few days after that surgery, I developed a chest cold. I was not supposed to be coughing and sneezing so soon after surgery. I think I tore something open from the surgery, or tore open another hole in my dura from my low intracranial pressure symptoms.

Massive headache, loss of hearing, pressure in ears, blurry vision, dizziness, and nausea. These symptoms all improve lying down, a big tip off that they are related to intracranial pressure. When they added artificial spinal fluid at Duke and Cedars, all these symptoms went away, the second big tip off that the symptoms come from intracranial pressure. I am working on scheduling a blood patch in Pittsburgh in an attempt to avoid another trip to Los Angeles for more surgery.

Tuesday, July 9, 2013 at 7:22pm EDT

Unless someone else has our health problems, they don't understand what we go through. We can tell them, but they truly don't understand unless they experience it for themselves. I can't truly understand what you go through, just as you can't truly understand what I go through…

Tuesday, July 9, 2013 at 7:42pm EDT

I saw a psychologist for a while before I was diagnosed. She made me feel like the problem was all in my head. At that time, I exercised regularly which took away one of her primary tools.

She frustrated me further by insisting that I do things that I physically cannot do. She said things like “I practice sick behavior for attention.” I have an accurate diagnosis now, but the scars from therapy are still there.

Tuesday, July 9, 2013 at 7:48pm EDT

I would not mind seeing one again [psychologist] IF they were knowledgeable about chronic cerebral spinal fluid leaks. Very few medical doctors are knowledgeable about that so that's why I went to Los Angeles. Finding a counselor would be just as, if not, harder than finding a medical doctor. The standard therapy like “get out and socialize”, meditation, visualization can be but are not always helpful with chronic cerebral spinal fluid leaks.

Tuesday, July 9, 2013 at 10:43pm EDT

Dr. Gray recommended a doctor at UPMC in Pittsburgh last fall, but I did not follow up. I called there today, and they told me that it would be the physicians assistant that does it. So yes, that makes me a little nervous. Dr. Schievink called and spoke with the doctor Dr. Gray recommend and told him the specifics of my case. Dr. Schievinks office was supposed to fax the order for a blood patch today. The folks in Pittsburgh told me they would call after they received the prescription. They did not call today, but then again CA is 3 hours behind us. I will follow up tomorrow to see if they received it. If not, I will call Dr. Schievink' office. … You could have symptomatic Tarlov csyts. They can be asymptomatic, too. Say you have Tarlov cysts, just because you have pain does not mean the cyst is the source of pain. The cysts may or may not be the source of your pain. The cysts themselves could be asymptomatic and your pain coming from a different source.

Tuesday, July 9, 2013 at 10:46pm EDT

I emailed Dr. Gray about what was going on now. She said she would see me, but I'm thinking maybe Dr. Schievinks version of a blood patch may be better. … I don't want to travel 10 hours to NC if I can get treated with a 1 and 1/2 hour drive to Pittsburgh. [Not wanting to travel turned out to be fatal mistake.]

Tuesday, July 9, 2013 at 11:00pm EDT

[LA Resident] did a full volume patch. I know you had an issue with those, but he was conservative based on Dr. Schievink's orders. He did one at T11/T12. He would have injected 20cc of blood, but I could only stand 13cc. After lying for 4 hours, I still had LP. The following day, I had neither HP or LP. The next couple days I had slight HP. I'm thinking that it was not the extra volume in my epidural space that made me feel better because it took a day for my pressure to rise. The relief would be immediate if it was a volume issue. Because I did not have extremely HP to blow the patch, I believe the coughing from my chest cold blew it.

Wednesday, July 10, 2013 at 8:13pm EDT

I followed up with Dr. Schievinks office today about have a blood patch in Pittsburgh. … The folks in Pittsburgh tell me that I should be able to schedule a blood patch tomorrow. We'll try this before flying back to L.A. All the coughing undid something. Many of the symptoms that I've told you about are back. I'm on another involuntary crash diet from extreme nausea. [She was down to 165 pounds when she died.] I tried a few prescription medications, activated charcoal, and ginger. None worked. The only thing that helps is lying down. ARG I do not like lying around. I want to move! Moving is good mentally. I think my history with systemic tendonitis issues could be related. Maybe I have an underlying undiagnosed connective tissue disorder that weakened my tendons and dura.

Wednesday, July 10, 2013 at 11:56pm EDT

I'd like to stay home but we will do whatever it takes. It is expensive. When symptoms become bad enough, I don't have a choice but travel to the best doctors. We were in L.A. from 5/26 to 7/04 minus the 3 days we were home between flights. We spent most of April and the first part of May in North Carolina. After being a frequent flier (gotta add a little humor) in physical therapy with various tendonitis issues, I learned what worked best for self management. Tendonitis in the early stages has a pain that is distinct from all other pain. I had tendonitis in multiple sites in my upper and lower body. Tendonitis in my lower body is more devastating. I had bilateral peroneal, bilateral posterior and anterior tendonitis all at once. Since had to walk and could not give them adequate rest, they healed as tendonosis, a degenerative condition. I had custom ankle foot orthotics in my shoes to take the stress off those tendons. When my tendons flare, I'll wear the braces indoors and outdoors. I don't wear them full time any more than necessary, or my ankle muscles get weak and I lose range of motion. The braces are a catch 22. They have a hinge but have no side-to-side motion that wrecks havoc on my knees and hips. That's the story behind the ankle/foot orthotics that you saw in my shoes.

Friday, July 12, 2013 at 6:58pm EDT

[Talking of insurance.] The decision makers need to spend a week in our shoes. I bet they would have empathy for us and change their decisions. … It's easier to get disability through your employer, if you worked for one of those because they are not covered by the (E)mployee (R)etirement (I)ncome (S)ecurity (A)ct. Pretty much all other disability insurance through your employer is governed by that. ERISA is anti-clamiant and pro-insurance company. Nearly everyone is denied, and the ones that are initially granted are constantly harassed with paperwork!

Saturday, July 13, 2013 at 1:46pm EDT

I feel down most days. I spend all day every weekday by myself. Non one comes to visit, and I rarely get a phone call unless it is from my Mom. My life has been like this for years. Low pressure prevents me from getting out and meeting people, becoming friends and doing things together.

Saturday, July 13, 2013 at 2:13pm EDT

I know what you mean about being treated like we are nuts. I don't see my PCP very often, or I'm sure they would feel the same way about me. I've dealt with this severe daily headache for 24 years. VERY FEW people believe that severe pain can last that long.

Saturday, July 13, 2013 at 2:19pm EDT

Part of me thinks patching may work. The other part of me thinks Dr. Gray's patches never held long-term [For reasons like travel, me having to go to work, and some yet unknown reason that needs to be studied, which is what I hope the autopsy finds, etc]. For the rest of the day after the blind patch at Cedars I had LP. The second day I had neither LP or HP. The 3rd and 4th days I had slight HP that I took Diamox for. The 5th day I was back in LP. I think my coughing blew the patch rather than HP because HP was only slight. I have no physical support at home after surgery or patching, other than my husband. I don't have local friends and my family thinks that I am nuts. If I say too much to others, I sound like I'm a complainer. If I say very little, they think that I can't be as sick as I am. I can't win.

Sunday, July 14, 2013 at 7:14pm EDT

I go to Pittsburgh on Friday for another blood patch. They take blood out of my arm and inject it into my spine. I had this procedure done in L.A. but the coughing and sneezing from the cold blew the patch. My cold is better. I had my stitches out last week. I move around as much as I can. Having two major surgeries last month and catching a cold took all my energy.

Sunday, July 14, 2013 at 8:08pm EDT

The best time to call me is weekdays between 8am and 4:30pm. I prefer to talk when my hubby is not here. If he hears me, we don't argue over what he heard. It's more like he doesn't understand how females communicate. [Does *any* male understand???] I can identify with what you say about 'friends' close to you making comments that sound like they don't get it like “You look good today.” They don't see how you crashed before you went out and how you will crash when you go back home. … I think people don't ask how we are doing because they think only of themselves. I always try to ask people how they are doing so I don't focus so much on myself. If someone always finds fault in you, (if you can help it) don't speak with them as often. I've said the same thing, if people could be in our shoes for a few days, maybe they would get it. … I don't know how to make new friends when I can't make plans. I don't know for sure how I will feel on a given day.

When I was in L.A. My cousin's husband told their children not to judge people. I thought that was great. On the other hand, they had such positive attitudes that I was not comfortable discussing my fears over my illness with them. They were not like that on purpose. Like anybody else that has not been through what we have, they didn't know any better.

Sunday, July 14, 2013 at 8:42pm EDT

I get a blood patch on Friday in Pittsburgh. I had the stitches taken out. My back pain now feels like muscular pain from not moving. I force myself to move, but with two major surgeries last month, fighting off my chest cold and this headache with the neurological symptoms that go with it, I am exhausted. I have my fingers and toes crossed that this blood patch will provide long-term relief. I am happy that you got to go out with the girls this weekend. Setting aside time to do your own thing is refreshing!

Monday, July 15, 2013 at 11:53pm EDT

Today was 4 weeks post op from my second surgery. Two major surgeries last month and that cold left me exhausted. I should be starting PT now, but I won't do that for a while after a blood patch.

Tuesday, July 16, 2013 at 12:00pm EDT

… I found, “Targeted CT Guided Epidural Blood Patch for Treatment of Spontaneous Intracranial Hypotension due to Calcified Intradural Thoracic Disc Herniation” … I hope that this is a good sign. I am getting a blind blood patch.

Tuesday, July 16, 2013 at 3:58pm EDT

I saw your message on the board about being quiet because your anxious, very depressed, etc. That's why I am being quiet, too. I had two surgeries by Dr. Schievink and feel no better. Other than Bob I have no support here at home. I spend all day alone everyday. Is this ever going to end? On Friday at UPMC I am getting a blind blood patch. [UPMC doctor] is who is supposed to do it. I found on PubMed that he is a co-author of “Targeted CT Guided Epidural Blood Patch for Treatment of Spontaneous Intracranial Hypotension due to Calcified Intradural Thoracic Disc Herniation” published in March this year. He wants to see my imaging studies from Cedars. He does not want the report. None of the other articles he published are related to leaks.

Tuesday, July 16, 2013 at 4:34pm EDT

If you talk to anyone around you, they think you're crazy or they act like you are bothering them. My hubby leaves the house at 6:30am and gets home at 5:30pm five days a week. One thing that concerns me is Cedars had me lie with my head lower than my body for an hour followed by three hours flat on my back. The nurse said that I would not lie with my head lower than my body. I would lie 3 hours flat on my back, though. I want the face down time.

Thursday, July 18, 2013 at 11:05am EDT

I feel awful. Pressure in ears, hearing loss, blurry vision, nausea, dizziness. All are worse when upright. I don't know if my blood patch tomorrow will be CT guided

Thursday, July 18, 2013 at 2:29pm EDT

Doctors tend to self treat their own mental illness. They don't want a colleage to treat them. They are afraid of loosing their licenses, if they admit they are sick.

Thursday, July 18, 2013 at 2:34pm EDT

That's the kind of doctor that I like to see. One that admits their own weaknesses.

Thursday, July 18, 2013 at 7:28pm EDT

I am getting a blood patch done locally here in PA tomorrow.

Thursday, July 18, 2013 at 7:56pm EDT

If my memory is correct and it may not be, did you say several months ago that the POINTE [A place for those with mental health issues to get together in Oil City PA.] was going to start having classes on relaxation? Did that start? [See Aug. 5 and 9 below.]

Friday, July 19, 2013 at 9:36pm EDT

[UPMC Doctor] injected 30cc of blood at L2/L3 under fluoroscopy about 1:30 today. HP began about 7:30 tonight. I took one half of a 250 Diamox which relieved it. The doctor thought that I was complex case. They will do directed blood patches there if they know the site of the leak. They do not do glue patches. Normally they have you lie 2-3 hours flat on your back after a patch. I requested the first hour that I be face down with my head lower than my feet like I was at Cedars for the first hour. Which they allowed. The nurse told me to lie down as much as possible for the next 4-5 days, no strenuous activity and toe ease slowly back into things.

Friday, July 19, 2013 at 9:41pm EDT

One thing different that they did here which I liked was during the injection tilt the table so my head was lower than my feet when I said that I was feeling the pain/pressure going down my left leg. Tilting the table removed that pressure/pain and allowed them to inject more blood. Cedars nor Duke tilted the table during the patch.

Friday, July 19, 2013 at 9:46pm EDT

I did not have HP until about 6 hours after the patch.The Diamox helped. That's how I know this is HP now.

Friday, July 19, 2013 at 9:57pm EDT

Thanks. The doctor thought that I was complex case. They will do directed blood patches there if they know the site of the leak. They do not do glue patches. Normally they have you lie 2-3 hours flat on your back after a patch. I requested the first hour that I be face down with my head lower than my feet like I was at Cedars for the first hour. Which they allowed. The nurse told me to lie down as much as possible for the next 4-5 days, no strenuous activity and toe ease slowly back into things.

Friday, July 19, 2013 at 9:50pm EDT

All that adrenaline could change your chemistry and the way you respond to medication. We are all differentn, and react differently to medication.

Friday, July 19, 2013 at 10:02pm EDT

Will he mistake a leaks as Chiari? Who knows whether you have leaks causing your Chiari, true chiari without leaks, or true chiari with leaks. Did I confuse you?

Friday, July 19, 2013 at 10:03pm EDT

They do not do surgeries there [UMPC], so I may need to go back L.A. if this doesn't work. Thanks for your prayers. I need all that I can get. Only other leakers understand.

Friday, July 19, 2013 at 10:09pm EDT

I had the blood patch today. It immediately relieved the headache, blurry vision, ear issues, nausea, dizziness as the procedure usually does. I am supposed to lie down as much as I can for at least the next week then slowly ease back into things. No bending, lifting and twisting. The last three things I haven't been allowed to do since surgery, anyway.

Friday, July 19, 2013 at 10:20pm EDT

My newer washer uses less water but pulls and stretches the clothes more. What does that save? Replacing clothes sooner can't be good for the environment either.

Friday, July 19, 2013 at 10:24pm EDT

My washer only fills a tiny amount for the rinse cycle. It doesn't matter how large the load of clothes is. All sizes of loads get the same small amount of water.

Sunday, July 21, 2013 at 2:07pm EDT

I woke up this morning with an excruciating headache which is usually indicative of rebound too high intracranial pressure. Too high or pressure should feel better when I'm upright. Medication to lower the pressure had no effect neither does my position up or down. I'm not sure what this means.

Monday, July 22, 2013 at 1:03pm EDT

I had a FV blood patch at L2-L3 in Pittsburgh Friday. HP began about 8 hours later. Right know 1-2 Diamox 250mg during the day control it, but I am not being very active.. At bedtime One Diamox 500ER works better than the 250s but I still wake up with a headache. I emailed Dr. Schievink about this a little bit ago. Last fall when I was successfully sealed for 4 months, the amount of Diamox that I take now controlled HP when I was inactive but when I increased my activity I needed more. HP got so bad that 3000mg of Diamox and 100mg of HTCZ did not control it. Dr. Gray had to put a 20 gauge hole in my dura and still need Diamox at a lower dose. I am taking it as easy as I can. I spend a lot of time lying down. Do you get the pain in your low back when the headache comes on, or is it there at other times? How does Dr. Schievink do a trial run for the Port-a-Cath.

Monday, July 22, 2013 at 1:09pm EDT

I had a FV blood patch at L2-L3 in Pittsburgh Friday. HP began about 8 hours later. Right know 1-2 Diamox 250mg during the day control it, but I am not being very active.. At bedtime One Diamox 500ER works better than the 250s but I still wake up with a headache. I emailed Dr. Schievink about this a little bit ago. Last fall when I was successfully sealed for 4 months, the amount of Diamox that I take now controlled HP when I was inactive but when I increased my activity I needed more. HP got so bad that 3000mg of Diamox and 100mg of HTCZ did not control it. Dr. Gray had to put a 20 gauge hole in my dura and still need Diamox at a lower dose.

Monday, July 22, 2013 at 9:05pm EDT

I put on my binder and my head got worse, so it is HP. I am not being active. I am up to 1000mg of Diamox per day. Apparently, that's not enough. Last fall it took me 5 weeks to make it to 3000mg. It's been 3 days and 1000 is already not enough. This makes me nervous.

Monday, July 22, 2013 at 10:11pm EDT

I had my blood patch Friday. I had several headache-free hours after that. Then a rebound intracranial hypertension headache began. On Saturday, I started Diamox 1000mg daily to lower my intracranial pressure. I had a headache part of yesterday and all day today. I was not sure if it was a low or high pressure headache. To tell the difference, I put on my binder. My headache got worse, so it’s rebound intracranial hypertension even with 1000mg of Diamox. Last fall when my dura was successfully sealed, it took five weeks to reach the maximum daily dose of 3000mg of Diamox which still did not control my rebound intracranial hypertension. It's been 3 days and 1000 is already not enough. Increasing the dose this fast makes me nervous… I had many symptoms when 3000mg of Diamox did not control my rebound intracranial hypertension. The most serious one was inflamed optic nerves. If you have intracranial hypotension or too low intracranial pressure for a long period of time like I have, your brain compensates by making extra cerebral spinal fluid. Patch any holes, your brain still makes extra CSF which causes rebound intracranial hypertension. Usually that is controlled with medication until your body learns that it doesn't need to make as much. As a last resort, they put a shunt in your head.

Tuesday, July 23, 2013 at 9:34am EDT

I went too far in the other direction from intracranial hypotension to hypertension. Unfortunately, I have a history of that. The hypertension can and does blow blood and glue patches and blow additional holes putting me back into intracranial hypotension.

Wednesday, July 24, 2013 at 6:09pm EDT

It's been a long battle. I didn't know for 23 years why I had a headache every time I was upright that went away when I lied down.

I finally received an accurate diagnosis at Duke University in North Carolina last year, chronic cerebral spinal fluid leaks. Keeping the leaks sealed is a real challenge. So far, nothing has kept them sealed for long term, or new leaks pop up when an older leak is sealed.

Wednesday, July 24, 2013 at 9:58pm EDT

The longest that I was successfully patched for was 4 months. Last October through mid-February.

Wednesday, July 24, 2013 at 10:16pm EDT

I took a 250 Diamox two hours ago, and another one, one hour ago. my face no longer burns. I'm concerned about how quickly I am titrating the dose to control HP. I am up to 2000mg daily, and I only had the blood patch Friday. Last fall it took me 5 weeks to reach 3000mg daily, and that did NOT control HP. I had to go to Duke and have a 20 gauge hole put in my dura.

Thursday, July 25, 2013 at 2:49pm EDT

I am miserable with HP. I know it's HP. I put my binder on VERY gently so I didn't not stress my dura too much. My headache got worse.

Thursday, July 25, 2013 at 5:50pm EDT

I am back on Die in a Box [A prophetic reference to Dimox]. 1000 mg wasn't enough. I'm not sure 1500mg is either.

Thursday, July 25, 2013 at 5:51pm EDT

I am positive that I was in LP prior to this last blind blood patch in Pittsburgh. I am in high pressure, now.

Thursday, July 25, 2013 at 6:29pm EDT

I haven't forgotten about coming back to the Y. I'll be back one of these years whenever my health allows. [Karen loved swimming at the YMCA. She never returned. :-(]

Thursday, July 25, 2013 at 6:44pm EDT

It will happen. Things are fraught with complications. Chronic CSF leaks, multiple surgeries to fix these. Rebound intracranial intracranial hypERtension blowing more holes in my dura putting me back into intracranial hypOtension. I had two surgeries alone last month in Los Angeles for this. Yes, I live in PA but that is were the leader in the field of chronic CSF leaks works.

Thursday, July 25, 2013 at 7:04pm EDT

Before I had to stop coming to the Y, I think I spoke with you about intracranial hypotension. You mentioned something about having a blood patch for a bad lumbar puncture that immediately took away the pain. Blood patches work great, if given early. If there is months or years of delay between symptoms and treatment, your body tries to increase the pressure on it's own by making extra spinal fluid. Patch the holes in your dura, your body continues to make extra spinal fluid putting you in intracranial hypERtension and blowing more holes in my dura. There is medication to help control this, but it's not perfect. :-(

Thursday, July 25, 2013 at 7:05pm EDT

The pain for intracranial hypotension or hypertension is out of this world. Strong pain relievers do not work on either. :-(

Thursday, July 25, 2013 at 7:08pm EDT

… [Doctor] said to increase Diamox but didn't say what to. I figured he didn't know. I tried 1500mg yesterday. I am still in LP today. I tried to LOOSELY put on the binder and that made it worse. I don't want to put on the binder tightly and blow more holes.

Thursday, July 25, 2013 at 7:11pm EDT

I can be up for short times. One of the side effects of Diamox is a headache.

Thursday, July 25, 2013 at 7:13pm EDT

My back pain isn't bad it's my neck and head. My head is about a 7-8. Upright and lying down.

Thursday, July 25, 2013 at 8:09pm EDT

I need to titrate up Diamox way faster than I like. I am at 1500mg already. I am going to try to transition myself over to the time released.

Thursday, July 25, 2013 at 8:28pm EDT

It wasn't an easy 4 months. At 5 weeks, I maxed out on 3000mg of Diamox and HP was not controlled. My optic nerves began to swell. Dr Gray had to put a 20 gauge hole in my dura.

Thursday, July 25, 2013 at 8:47pm EDT

Because I leaked for so long, I don't have healthy friends that I can rely on for help, either.

Thursday, July 25, 2013 at 9:45pm EDT

I don't know how I hold on either. Believe me I have many down days… The patch that I had at Cedars 13cc at T11/T12 gave me slight HP for 4 days but the coughing from the cold blew it. I am afraid that I am on my way to such high rebound HP now. But the LP was so bad that my vision was so bad that I could not drive, and I felt that I lost nearly half my hearing. At Pittsburgh, they did 30cc at L2/L3. I wish that I would have insisted on 13cc at T11/T12.

Thursday, July 25, 2013 at 9:47pm EDT

I am definitely in HP. I tried to LOOSELY put on my binder. It made things so much worse. The patch that I had at Cedars 13cc at T11/T12 gave me slight HP for 4 days but the coughing from the cold blew it. I am afraid that I am on my way to such high rebound HP now. But the LP was so bad that my vision was so bad that I could not drive, and I felt that I lost nearly half my hearing. Those are back now. At Pittsburgh, they did 30cc at L2/L3. I wish that I would have insisted on 13cc at T11/T12.

Thursday, July 25, 2013 at 10:37pm EDT

But the lumbar drain and 18 gauge needle for the DSM were at L2/L3, so I thought that was a good idea at the time.

Saturday, July 27, 2013 at 6:32pm EDT

Either Diamox, or my too high intracranial pressure, or both, give me brain fog and I don't always make sense, if I am not extra careful.

Saturday, July 27, 2013 at 7:16pm EDT

Either Diamox, or my too rebound high intracranial pressure, or both, give me brain fog. All the post surgical instructions of no bending, twisting, and lifting will remain in effect as long as I have rebound too high intracranial pressure. They estimate that can last for up to a year. Last winter, I began leaking after being sealed for 4 months.

Saturday, July 27, 2013 at 8:25pm EDT

I feel the patch helped. I am very afraid of moving the wrong way and blowing out something. I was patched for 4 months over the winter. I've been patched for a week this time.

Saturday, July 27, 2013 at 8:39pm EDT

For people that avoid others when they are sick, karma will be around..

Sunday, July 28, 2013 at 4:31pm EDT

I am not sitting too much because I don't want to put a lot of pressure on the surgical site at L4/L5. … I feel the BP helped more than the surgery. [Due to the cold?]

Monday, July 29, 2013 at 1:31pm EDT

I feel a bit of HP. All my muscles are becoming sore and tight from not moving enough. I wasn't moving much prior to surgery because LP was so bad. I couldn't move much after surgery, and I shouldn't move much after the BP. … We need to talk more often. Talking with someone that understands is like a breath of fresh air.

Monday, July 29, 2013 at 7:12pm EDT

My husband does it all. I feel bad for him. He works all day, and comes home to work more. It makes me feel awful.

Tuesday, July 30, 2013 at 2:46pm EDT

My blood patch will be two weeks ago Friday. I take 2000mg of Diamox and feel like I need an increase again.

I am scared.

Last Fall it took me 5 weeks to reach 3000mg of Diamox which was not enough to control my HP. I had to make an urgent trip to Duke for Dr. Gray to put a 20 gauge hole in my dura. I am on track to max out at 3000mg of Diamox way before 5 weeks this time.

The side effects of Diamox include headache and tinnitus. My tinnitus is pretty bad right now. I wonder how much of my tinnitus comes from Diamox. How much does Diamox contribute to the headache? I know my eyes being pushed out out my head is clearly HP, and I can tell when it's time for more Diamox.

[I asked her if she contacted the doctor via email, her response:] Wed, Jul 31, 2013 at 3:16 PM Subject: Re: Sent doctor message?

No. The pressure doesn't feel as high today. I hope that I did not spring a leak.

Friday, August 2, 2013 at 1:25pm EDT

I'm confused with mine. Sometimes I think I feel worse when I take no Diamox and other times I think I feel better with it. This has been since Tuesday when I had very HP and I think something blew.

Friday, August 2, 2013 at 5:39pm EDT

Caffeine had a minor positive effect yesterday. I haven't tried it today.

Friday, August 2, 2013 at 6:26pm EDT

My day isn't all that nice. My rebound high intracranial pressure went very high and blew some of the patch on Tuesday night/Wednesday morning.

Friday, August 2, 2013 at 9:45pm EDT

Rebound HP blew the patch. I am in LP.

I am depressed from this.

2000mg of Diamox per day was not enough. …

I've been feeling bad, too which is why I haven't written much

Friday, August 2, 2013 at 10:49pm EDT

Right. If the doctors would only listen to us. We know our own bodies. I wonder if I have underlying HP that blows leaks. All the scans at Cedars were normal. I would think that they would show something but they didn't. Maybe my family is right and I am crazy and make this stuff up for attention.

Saturday, August 3, 2013 at 11:31am EDT

I've had many patches of the ones that stuck (many did not) HP blew them out even on high doses of Diamox, HCTZ or Topamax. Every time my pressure was checked it was normal. At what point do I give up on treating this thing? I'm not getting anywhere. Patches help temporarily. I can't imagine Dr. Schievink wanting to do anything else since I just had surgery in June.

Saturday, August 3, 2013 at 12:18 am EDT.

[Someone writes to Karen:]

I guess I am confused as to why you are surprised with HP. Isn't the dural reduction surgery for a chronic leaker, whose leak can't be found and it is a surgery where you know the leak will continue, but you decrease CSF volume space so you get more upright time each day. It doesn't cure leak or let you resume a completely normal life. It is just to give you a little better quality of life.

So If you have less CSF space to fill volume wise and you do a blood patch to seal off the leak. You are still producing the same amount of CSF, it just has less space to go. So it makes perfect sense to me that you would have HP that is more extreme than before. Don't see how there could be any other outcome. I don't see why you would go the route of sealing off the small leak when you have less volume to fill and a history of HP with successful patching. Seems to me once you reduce the dural size/volume space you are facing even bigger problems if you ever do seal off the leak completely. I thought it was one or the other (dural reduction, or try and seal leak, not both).

I know we all chose our own paths with this crappy condition and everyone's path leads them a little differently; there is also a lot of trial and error involved on the parts of the physicians and patients.

Didn't Dr. Gray suggest a FVBP. Didn't you end up where Dr. Gray suggested. Do you have plans for what you are going to do next?

Saturday, August 3, 2013 at 12:31 am EDT.

I sincerely hope that you do not blow out any patches from your bad week.

Thank you for your long well thought out message. What you're saying about dural reduction and sealing off leaks is accurate. I had complications from surgery. The first surgery with Dr. Schievink in June left me with a huge CSF leak that required additional surgery two weeks later. Just days after the second surgery, I caught a cold. I was not supposed to cough and sneeze that soon. I blew something open. Only this time, I do not have the big CSF lump on my back. This is the reason for the blood patches.

I'll probably get another blood patch in Pittsburgh. Dr. Scheivink wants me to pretreat with Diamox.

Saturday, August 3, 2013 at 2:48pm EDT

… She said before she had her leak, she doubted the claims of people with chronic illness. She doubted that they could be as sick as they claimed. Several others responded and said they felt the same way before their leak. We get such obstacles thrown into our path of living a normal life. I wish people could see how much will power it took us to deal with the obstacles instead of condemning us.

Sunday, August 4, 2013 at 2:12am EDT

My rebound intracranial hypertension blew the blood patch. I am back in intracranial hypotension. Dr. Schievink will order another blood patch in Pittsburgh next week. I have a high pain tolerance. I try to remain positive. However, the pain level with these headaches is consistently so high that it stretches my ability to cope… Spinal headaches are resistant to Schedule 2 pain medications. I read that, and tried several myself. They don't work.

Monday, August 5, 2013 at 8:22am EDT

When my intracranial pressure is controlled like it was at Cedars with the 2-3 day infusion, and at Duke I feel great! We know the pain and neurological symptoms are pressure related.

Monday, August 5, 2013 at 9:22am EDT

Ahh..not having hope…what a familiar feeling, unfortunately.

LP is back as bad as it ever was. Eye and ear problems, a horrendous headache..well you know that drill:-( Sorry that you don't have hope.

All these failed blood patches, no supportive family other than my husband, not having success with Dr. Gray or Schievink makes me feel like throwing in the towel.

Dr. Schievink wants me to get another BP but premedicate with a high dose of Diamox prior to the blood patch. I know how sick taking a small dose of Diamox is when I am leaking. I can't imagine how sick a large dose will make me.

Monday, August 5, 2013 at 10:00am EDT

[I dont understand why some get fixed…viola…and other's don't] I don't either. I feel like it is all me. Like I make this crap up for attention or something. This time it was extremely HP that blew the patch.

Monday, August 5, 2013 at 10:18am EDT

I am physically alone everyday. That makes me lonely. No one local understands.

Monday, August 5, 2013 at 10:25am EDT

Depression is nothing to be ashamed of. I have not found any good medication for my depression.

Monday, August 5, 2013 at 11:05am EDT

I got sick 24 years ago. At that time I was 20 years old. A waitress and loved it! I tried my hardest for a couple years to continue work but was unable to.

Monday, August 5, 2013 at 11:13am EDT

I think the physical pain causes depression. In my opinion, doctors treat depression which may or may not help the physical pain. When treating depression doesn't help the physical pain they give up on us. Chiari can be treated. Then there's the issue of CSF leaks.

Monday, August 5, 2013 at 11:20am EDT

Chiari can be treated with surgery. Sorry, I don't know of any medications to avoid for depression and anxiety. Everyone is affected differently by different medications.

Monday, August 5, 2013 at 11:46am EDT

On the CSF forum, many people get fixed and don't come back to post. With a few exceptions, only people that experience continued significant problems continue to post. The Chiari forums would be the same way. Only those that continue to have significant problems after treatment stick around.

Monday, August 5, 2013 at 11:53am EDT

The people that get help from Chiari surgery, for the most part, do not stick around on the forums. Only people surgery did not help stay around.

Monday, August 5, 2013 at 12:35pm EDT

I am so down from yet another BP failing. It failed from HP which makes me think dural reduction surgery was waste. Making my dura smaller makes HP worse. My vision isn't clear, my hearing isn't as good as normal, the headache is horrendous, I can't eat, and all the other symptoms LP gives me. I I don't know what's happening with me anymore.

Monday, August 5, 2013 at 5:49pm EDT

I feel awful. I am so down from yet another BP failing. It failed from HP which makes me think dural reduction surgery was waste. [Due to the cold.] Making my dura smaller makes HP worse. My vision isn't clear, my hearing isn't as good as normal, the headache is horrendous, I can't eat, and all the other symptoms LP gives me. I don't know what's happening with me anymore. Dr. Schievink wants me to get another BP but premedicate with a high dose of Diamox prior to the blood patch. I know how sick taking a small dose of Diamox is when I am leaking. I can't imagine how sick a large dose will make me. I'll have the BP in Pittsburgh.

Monday, August 5, 2013 at 7:06pm EDT

I don't have a date, yet. My rebound spinal fluid pressure got too high and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication. Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.

Monday, August 5, 2013 at 11:49pm EDT

For my first blood patch at UPMC Presbyterian in Pittsburgh, I saw the most experienced neuroradiologist in CSF leaks. … He was not familiar with a couple tests that I had, digital subtraction myelogram, or an MRI with myelography. He was not familiar with the surgery that I had, either. They do blood patches under fluoroscopy.

They do not do fibrin glue patches that Duke and Cedars do. I'll get blood patches in Pittsburgh under the direction of the doctor at Cedars, but for anything else I will go to Duke or Cedars. This is my health so I want to go to who has the best equipment and experience! Rebound high intracranial pressure blew the last blood patch.

I knew I was in trouble when I was on a very high dose of Diamox, and walking 30 feet in my house increased the pressure and pain to an intolerable level! The plan for this blood patch is to pre-medicate with a high dose of Diamox prior to the patch. Knowing how sick a tiny amount of Diamox makes me when my intracranial pressure is low,

I don't looking forward to this. Brains do not like the sudden shifts between high and low pressure!!!!!!!

Monday, August 5, 2013 at 7:07pm EDT

I don't have a date, yet.

My rebound intracranial pressure got too high and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication.

Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.

Monday, August 5, 2013 at 7:14pm EDT

I don't know when I will be back to the Y.

My rebound intracranial pressure got too high again and blew the blood patch that I had in Pittsburgh a week and a half ago, despite taking a high dose of pressure reducing medication. Debilitating low intracranial pressure pain and other symptoms are back… The doctor in Los Angeles is going to order another blood patch to be done in Pittsburgh.

I needed the blood patches because of complications from the two surgeries.

How are things with you and and the Y?

Tell everyone there that I said hello.

Karen

[Firday, May 16, 2014

Someone at the YMCA told today me that Karen is still being missed there, months after her death. :-(]

Monday, August 5, 2013 at 8:27pm EDT

I originally planned to come to the open house at the POINTE tomorrow. Unfortunately, my rebound too high intracranial pressure blew the patches which put me back in too low of intracranial pressure. The pain and neurological symptoms from too high or too low intracranial symptoms is horrendous. No pain medication helps. Going to try a blood patch in Pittsburgh before going back to Los Angeles. I don't know when that will be scheduled. Is there supposed to be a DBSA meeting tomorrow night?

Monday, August 5, 2013 at 11:16pm EDT

It was the rebound high intracranial pressure that blew it.

Blood patches have the same restrictions as after surgery. No bending, twisting, and lifting (makes it hard to do my activities of daily living).

Normal healing times do not apply for surgery or blood patches for chronic CSF leaks.

The restrictions stay in place for as long as rebound high pressure lasts which is up to a year after the last successful patching.

Tuesday, August 6, 2013 at 9:03pm EDT

I feel terrible. LP is very bad! My head and face burn. The headache is bad lying down, but much worse upright. I spend most of my time in bed. We have bricks under the feet of the bed to help CSF stay in my head, and I still have a headache! When I am upright, my vision and hearing get funny. I am dizzy if I move my head in the wrong way. I am nauseated. It's worse when I am upright. The only thing that helps is lying down. In the past, I tried a couple medications, activated charcoal, and ginger. None of those work on my nausea. When I am sealed, Diamox and HP kill my appetite. This is not a healthy way to lose weight.

Tuesday, August 6, 2013 at 9:04pm EDT

My heart has racing spells. I think that has to do with LP and nerves.

Tuesday, August 6, 2013 at 2:33pm EDT

This illness causes stress and tension in relationships with others. It's frustrating!!!

Tuesday, August 6, 2013 at 2:47pm EDT

Lack of help after surgery is a problem…No one helped me other than my hubby and he works 50+ hours a week.

Tuesday, August 6, 2013 at 6:00pm EDT

[I come home from work. I go to get Garth's leash out of the drawer that it is kept in. Nick's leash is on top of Garth's. This should not be here. I thought that I should ask Karen about this, but never did. A regret that I will have the rest of my days. :-(]

Tuesday, August 6, 2013 at 9:29pm EDT

I think my body makes too much CSF. HP gets out of control and blows patches. I couldn't even walk 30 feet without HP the day the patch blew.

Tuesday, August 6, 2013 at 9:37pm EDT

I'm 5'11 and down to the mid 160s pounds. That sounds like a healthy weight but I lost 35 pounds since last October when I got too sick to exercise. I feel most of my lost weight is muscle. I continue to lose weight.

Tuesday, August 6, 2013 at 9:38pm EDT

I didn't look over weight at 200 pounds because I was solid muscle from exercising everyday.

[ August 7th is Kaern's last day. :-(

“Gone Too Soon. Angels of invisible illnesses”:

I am trying to understand how to walk this weary land without you Karen. When you walked on the Earth you helped the broken and the hurt…]

Wednesday, August 7, 2013 at 8:49am EDT

I feel awful. Pressure is very low. I can't be upright for long. I confirmed yesterday with Pittsburgh that they got the prescription for my BP. The radiologist had to look over it before they will allow me to schedule. I'll follow up again today, if I do not hear from them. A tiny amount of Diamox makes me so much worse when I am leaking. Dr. Schievink wants me to take a large dose prior to my BP hoping that may control HP. I don't look forward to getting sick from Diamox.

Wednesday, August 7, 2013 at 9:07am EDT

My body has a large frame for 5'11'' so I looked good at 200 pounds solid muscle. I lost inches but now I have 160 pounds of fat!

Wednesday, August 7, 2013 at 11:51am EDT

[UPMC] won't even consider scheduling it until Monday because the doctor that did it before is out of town. They want to talk with him because of my history first. They have no idea what rebound high pressure is. The doctor doesn't either because I asked him when I saw him.

[Messages to me at work]

Wed, Aug 7, 2013 at 11:47 AM

They won't even consider scheduling it until Monday because the doctor that did it before is out of town. They want to talk with him because of my history first. They have no idea what rebound high pressure is. Makes me want to consider Dr. Gray or Dr. Krantz.

[For unknown reasons Karen never once tried to contact Dr. Gray on her last day. She had more ways to do it than to contact anyone else, email, phone, cell-phone, pager. I can only speculate that she thought Dr. Gray was on vacation or otherwise not available. Dr. Gray was really upset, as was Jeffery Taylor her PA that never gets enough credit, when they found out about Karen's death and that Karen had not tried to read either of them.]

Wed, Aug 7, 2013 at 12:22 PM

I sent this to Dr. Schievinks office.

Subject: Difficulty getting second blood patch at University of Pittsburgh Medical Center Presbyterian.

I have resent the fax and I attached a copy here for your records.

They received the prescription. Thanks for re-sending it.

Unfortunately, I have difficulty getting a second blood patch at University of Pittsburgh Medical Center Presbyterian. Because of my complicated history, they will not schedule me until after they speak with [UPMC doctor], the neuroradiologist that did the first blood patch. He won't be in until sometime next week. Isn't Dr. Schievink going to be out next week, so [UPMC doctor] won't be able to speak with him?

Rebound high pressure blew the blood patch. [UPMC doctor] does not know about rebound high pressure. I asked him when he did the first blood patch. I am uncomfortable with a doctor not knowledgeable about rebound high pressure deciding whether, or not I can have a blood patch again.

Do you have any suggestions?

Wednesday, August 7, 2013 at 12:29pm EDT

Dr. Schievink is going out of town next week, so he won't be available for the doctor in Pittsburgh.

Wednesday, August 7, 2013 at 12:36pm EDT

The folks in Pittsburgh won't consider scheduling a second blood patch until Monday because the doctor that did the first blood patch is out of town. They want to talk with him first because of my history. I know this doctor has no idea what rebound high pressure is. I asked him when he did the blood patch. Dr. Schievink is going out of town next week, so he won't be available to consult with the doctor in Pittsburgh. This leaves the doctor in Pittsburgh that is not very knowledgeable about this condition deciding if I can have a blood patch. I am uncomfortable with this situation. I left a message with Hoorance to check Dr. Gray and Dr. Krantz schedule.

Wednesday, August 7, 2013 at 12:43pm EDT

I am nearly incapacitated. My vision is off. My hearing is affected. My head and face just burn, I'm nauseated, dizzy. There's other symptoms I just can't think clearly right now. I don't know what I will do. I would like a full volume patch like I had in Pittsburgh. Not the targeted thing they usually do. [I do not know who 'they' is in this context? As she says she is confused. Sadly in her emails to me I did not understand how confused!]

[I can't find the email. At some point Karen say to me in email: “A friend gave me Dr. Krantz's number. Should I contact him?”. My response was an underwhelming 'I guess so'. An other regret I will have for the rest of my days. I should have said 'Yes' with enthusiasm. It is Dr. Krantz that she is trying to reach in her final message. Karen and never meet Dr. Krantz. Dr. Gray did tell me in March of 2014 that Dr. Krantz is better than she is now.]

Wednesday, August 7, 203 at 1:04pm EDT

I have a copy of the prescription for a BP from Dr. Schievink. I wonder if that would help them do a blind one? I have all my imaging from Cedars. The past few days I've felt so bad with this that I consider going to the local ER for a BP but I think that would be a waste of time. Our hospital is a small town rural hospital.

August 7 1:04pm

I have a copy of the prescription for a BP from Dr. Schievink. I wonder if that would help them do a blind one? I have all my imaging from Cedars.

The past few days I've felt so bad with this that I consider going to the local ER for a BP but I think that would be a waste of time. Our hospital is a small town rural hospital.

Wednesday, August 7, 2013 at 1:25pm EDT

Positive it is LP. Diamox makes me SSSOOO much worse!

Wednesday, August 7, 2013 at 2:28pm EDT

I don't know what to do. I hurt a lot.

August 7 2:35pm

As a result of the doctor not being up to date, I'm getting resistance scheduling another one, even WITH the prescription from Dr. Schievink. Resistance scheduling a blood patch, that is.

August 7 2:31pm

No medicine at all helps. Not even Fioricet. Caffiene doesn't help very much either.

August 7 2:37pm

My massage therapist says she works on those [Trigger Points]. … It's not just the headache, its my vision, hearing, dizziness, nausea.

August 7 2:56pm

I tried ginger, activated charcoal, and a couple anti-nausea medications. None work. The only thing that works for nausea is lying down.

August 7 3:23pm [This is Karen's final message to anyone. She was gone by the time I called at 4:30PM.]

I tried [A Duke Phone Number]. That is a general neuroradiology number. They forwarded me back to Hoorance for scheduling.


I, Bob, pick up the narrative here.

Karen was undone by one of those #@)$*#$*#*$ stupid phone menus! Press 1 for … #)$*#)$)#*!!!

August 7 3:30pm

I am slaving over my computer at work, like usual. For no reason I fell a whole body electrical shock. Like I had just stuck my spine in a light socket. A voice in my head says “Someone died”. I looked at the clock on the computer. It said 3:30PM. I thought this was very odd, then thought no more of it. :-(

I always called Karen when I got out of work at 4:30PM. She usually was prompt to answer. On occasion she'd be in the bathroom or outside getting the mail. Not answering the phone on the first call did not concern me. When she did not answer by my third attempt at 5PM. I called our next door neighbor, Paul, and told him to go check on Karen. I was still a half-hour away from home.

At first Paul did not take me that seriously. Paul said Karen had been laughing and joking with him early in the day as she often did. On the day she never hurt more in her life. She was *that good* at hiding pain. Many have said 'if I only knew I would have helped her'. As you can see you had no way to know, so no reason for guilt, I have enough for all. {My perspective is rather unique from most people now. People in Chronic Pain smile on the outside and suffer on the inside. They should not do this. It hurts them and hurts bring attention to serious medical problems! - 2014}

chronic_pain_smile.jpg

That morning when I got ready to go to work she said her heart was racing. I asked her if she wanted me to stay home and she said no.

Paul rapidly became concerned when he got no answer. I told him how to get into the house, which he did. He went right to the bedroom, as we expected she was unconscious from some-kind of heart issue. She has had issues with low potassium levels causing heart issues. He said she was not in the bedroom, as we talked over my cell phone and his.

“She has to be in the house someplace? Look in the living room, up stairs, or basement.”

Sounds of Paul walking around into the living room.

Oh God No! Bob. She is dead! SHE HUNG HERSELF WITH THE DOG LEASH!

Paul burst into tears. Those words will forever echo in my mind! :-(

I'm still 15 minutes away. I tell Paul to call the police, as I had no idea what to do, it was the first thing to come to mind.

I call my Mother, Dad departed in 2010. I'm still driving, not all that well at this point. Mom answers. Me: “Karen is dead. She hung herself with the dog leash.” Not understanding (how could she?), asks: “How did she get tangled up in the dogs leash?” “Mom, this was a suicide!”. Silence. I don't remember anything else other than at some point I remember her crying on the phone.

goodbye_is_not_forever.jpgBy the time I arrived home there were at least five state police and ambulance along the road, and more in the driveway. They would not let me in the house, and for that I am thankful. I requested a closed casket funeral so my last visual image of Karen would be of how I saw her last standing in the doorway in her pajamas watching me leave for work, rather than how she was found. Had I been more perceptive I would have questioned her standing there and saying GOODBYE, her very last word to me. This was not normal. I hate seeing that word on my phone every time I turn it off!

the_last_goodbye.jpg

At some point, and I don't recall when, I called my brother-in-law at his place of work. I did not want to call them at home and have Karen's sister answer. When I asked for Jim he asked me Sr. or Jr. and I told him I wanted Sr. I was told Sr. was not there but Jr. was. Foreman sounded annoyed that I was making a personal call to them, like I was about to ask them to go bowling or something. When I told the Foreman that Jimmy's aunt had just hung herself, he became helpful and put our nephew Jimmy on the phone. I got Jim's cell phone number from Jimmy and called him. It took a while for it to sink in for Jimmy he eventually went home from work early. Jim had me repeat that Karen was dead more than twice. Who expects a call like this? Karen's sister and niece are on their way home from someplace and Jim tells them to get home without stopping anyplace but does not tell them why. After they get the news, which is not taken well (how could it be?), they tell Karen's parents whom live near them. {On July 5th 2014 Jimmy and Stacey had their first child. I'm sure Karen will be watching out for Brenton. Karen so wanted to have children of her own but “wanted to get better first”. I'm sure if we had any children she would still be with us today. :-(}

Thursday, August 8th 2013

We had to make the funeral arraignments. People that knew Karen well, know that she would study any subject to learn all that could be learned about it. One of the subjects was funeral planing and how the funeral industry worked to make a profit. I took the book:

“The AFFORDABLE Funeral: Going in *Style*, Not in *Debt!*” by R. E. Markin.

with me from Karen's library; I'll be putting her reading list on her website http://www.kpaddock.com. Got $2000+ off the price. I knew if I did not do this she would come back and hunt me for sure! Make sure you have at least $15,000 in Life Insurance to cover the cost of your funeral and the paper work! [Just a few days short of the one year mark now, I'm still having to deal with paper work because we did not have a will. GET A WILL MADE OUT TODAY!!]

By Thursday afternoon I got me wits about me and decided I'd refuse to let Karen's death be in vane. To that end I contacted Dr. Gray to figure out what we could learn from Karen's body. What really was wrong with her all these years? Why was nothing working in the long term? Karen's spine was removed during an autopsy and sent to Duke to be studied. There were to many logistical issues with even considering being studied in LA.

The preliminary autopsy results showed that Karen was leaking from the very tip of her dura (S4). A place no one had any reason to suspect, not even Karen, nor any of the doctors. It is my hope that the one good thing that comes out of this is that the doctors now know to look at that location.

{Someone asked me if Karen had Tethered Cord. I do not recall Karen ever saying anything about TC. Her cousin does have TC and Chiari. Is there a genetic connection going on here? - 2014}

Wednesday, August 7, 2013 at 9:39pm EDT

[This is the first message I posted on Karen's timeline, a message that stunned the world. :-(]

This is Karen Paddock's husband Bob.

As some of you may have known Karen was in chronic pain from a car accident that happened 23+ years ago, which caused a cerebrospinal leak. This caused excruciating headaches.

Today after getting the run around from three different doctors about getting help, she had enough.

Sometime between 12:30 and 4:30 she hung herself with Nick's leash (Nick was a very strong dog, hence strong leash).

Karen makes the third or fourth person with this condition that has killed themselves.

Lets hope a solution is found before someone else has had enough of the pain.

Don't know what else to say.

{The discrepancy between 12:30 in the posting here and 3:23 above have to do with the time of her last email to me at work, 12:30, and her last Facebook message. It would be many days before I start to read her messages and find her last message at 3:23, and then decided that her story must be told to help others learn of this CSF Leak condition as you are reading now. - 2014}

{I'm sure some have questioned my posting her manner of suicide. I knew if I did not, it would lead to speculation that would be far worse than the truth. Look up The Werther Effect.}

Thursday, August 8, 2013 at 6:48am EDT

Do hope Karen's death motivates these people to do more research and get this CSF issue taken care of, so there are no more that end like Karen.

Thursday, August 8, 2013 at 3:40pm EDT

Bob, Sending you my love, thoughts and prayers. I didn't know Karen and saw your post on the Chiari Board [ https://www.facebook.com/groups/112022853422 ]. I am so very sorry for your loss. I lost my brother to suicide 5 years ago. There's an amazing book by Carla Fine called “No Time To Say Goodbye”. I'm here if you need to talk.

[ “No Time to Say Goodbye: Surviving The Suicide Of A Loved One”

Also on my reading list is:

“Suicide: What Really Happens in the Afterlife?”

http://www.pamelaheath.com/Suicide.htm ]

Thursday, August 8, 2013 at 10:24pm EDT

I feel empty inside. Nothing that can be done that I know of, thank you for asking.

Friday, August 9, 2013 at 10:14am EDT

… I just saw your invent, you must not have heard yet. This is Bob Karen's husband. Karen hung herself on Wednesday. She had, had enough of the pain. Please look at Karen's facebook page https://www.facebook.com/karen.s.paddock . Her obit should be in today's paper, that I need to go out and buy a few of right now. Karen did enjoy the time she spent with your group.

I'm going to post what Karen wrote to you above on her web page at http://www.kpaddock.com when I get it updated. I want to gather all that I can to put there related to CSF leaks, Chiari etc.

Also please send me contact information and any web site related to your group that I may post it as well. Please let others know of Karen's passing at the meeting. The number of messages I'm getting about how Karen helped them has become overwhelming for me to keep up with.

Friday, August 9, 2013 at 10:44am EDT

I'm so sorry to hear about Karen she was a special person.

Friday, August 9, 2013 at 7:53am EDT Christine Sepanek [Named used with her consent.]


“Today, I came so close to the water's edge, and I believed it would heal me.

So, I knelt with reverence there and though it hurt just to tilt my head back, I did and I lifted my eyes to the sky.

It was there in the midst of my unrelenting pain and through the desperate sound of my own unanswered plea for relief, that I heard you crying at length.

I recognized the sound, I recognized your tears and I knew that, like me, no words could console you.

You had departed the place where others find hope, the moment I said goodbye.

Not one second did I ever believe my maker would rejoice as I made my choice and made my way to the water's edge.

Please know that I heard you so clearly but in the bitter solitude of pain, and despite the whispers and the shouts, I simply lost strength.”


Friday, August 9, 2013 at 7:57am EDT

As I [Bob] cry my eyes out reading that. NEVER take the path Karen chose to take in the end. May I quote it on her page and website?

Friday, August 9, 2013 at 8:06am EDT Christine Sepanek

Yes it is yours .

I wrote it for you last night. I wept for you, I couldn't sleep trying to remember if Karen and I had ever talked one on one.

Thinking if we did, “Did I listen?” I cried so much I drove my pressure sky high and I couldn't understand why I could not stop.

Suddenly, I realized my tears were for you and I did not know another way to reach out to you.

If you ever need to chat, night or day, if I am awake…I will make time for you.

Friday, August 9, 2013 at 8:35am EDT

Do you want me to use your name or how would you like me to cite the author?

Friday, August 9, 2013 at 8:51am EDT Christine Sepanek

Yes you can use my name.

Friday, August 9, 2013

Chiarian Found Dead - has link to Karen's obituary. Technically Karen had pseudo Chiari. {There was some confusion about her having Chiari because I mentioned in one of my early postings right after her death. - 2014}

Saturday, August 10, 2013 at 8:48pm EDT

So your post about the logistics. That is what undid Karen.

I find no fault with the doctors, just could not get their schedule lined up when there were three involved.

Each thought they were doing what was in Karen's best interest.

Alas they did not understand how much pain she was in, and what state of mind that put her in. In her own words she “was not thinking clearly”. :-(

Monday, August 12, 2013 9:00 AM EDT

All of Karen's family will be here soon. I've gathered everything she owned except her computer, that I need to get files from, and her library of books, for them to take if they want it. Karen said I had far more 'stuff' that she did. She once again proved she was right. This is everything she owned. See 2004 for a picture of all of the braces hiding under the bench. This proves Karen's Frugal nature.

Monday, August 12, 2013 1:00 PM EDT

I'm wearing my suite (something I do not like doing) about to go out the door to Karen's funeral as the phone rings. I pick it up. “Hi do you need any Aluminum Siding?” I'M WALKING OUT THE DOOR TO MY WIFE'S FUNERAL! Slam down the phone and walk out the door. We are on the Do Not Call List why do I keep getting these #)$*#)$* calls?

{I no longer answer the phone. If I don't recognize the number on the Caller ID I let it go to voice mail. If it is not important enough to leave a message, it is not important enough for me to interrupt my life. I'm thinking of disconnecting the ringers in the phone so I won't even know it is ringing. Mostly I get scam calls saying “We are from Microsoft (they aren't) you have a problem with our computer”. Mom gets these too, she doesn't even have a computer! If I have the time I play with these people asking them which of my 40 computers has the problem (don't have that many), and say how happy I am that Microsoft has taken interest in my Gentoo Linux box. - 2014}

Monday, August 12, 2013 3:00 PM EDT.

Karen's Facebook friends have “One Minute of Silence” for Karen. 103 people attend. Lee Campbell from the Durham NC area made the 550+ mile trip to be here for Karen's funeral, to represent all of the 'Leakers' that would be to debilitated to make the trip. Thank you Lee.

~ August 17, 2013:

 The sympathies cards I received, some with some profound words in them. Thank You everyone.

Wednesday, August 28, 2013

Today would have been our 20th Wedding Anniversary. This is Karen in her Wedding Dress the day we got married. She had hope!

karensweddingpicture.jpg

She kept part of our wedding cake, for these last twenty years! I often asked if I could get rid of it, so I could use the freezer space from my cooking. She always said 'No'. If she was still here today I would be getting it out of the freezer, twenty years is long enough for a cake. I'm surprised it is not a big ball of mold by now.

August 29, 2013 at 8:28pm

Did Karen fell pain when touching this spot? [Pointing to spot at the junction of the base of the skull and the soft spot below it.] That is the spot Karen pointed to for years. That is the location of the Occipital Nerve. It is not generally a leak site, however if the brain is not properly positioned due to a leak the nerve can get stretchered in ways it was not designed to handle. Karen had it cryogenically frozen at the Meadville Pain Clinic about every three months to relieve headaches from that before she learned about leaks. Chemical injections did nothing for her.

There is no good way to end this history, so I'll simply stop now in the hopes others have learned something that will help them, and further the advancement of CSF Leak research.

Seems the story may never end, as I learn more about CSF and make new connections in to 2014 and beyond…

{Jump to year: 1969 to 2010, 2011 2012 2013 2014 2015}


2014

Thursday, February 27, 2014

I just spent two days taking the class “Mental Health First Aid” to learn about suicide. I missed the signs in Karen, I'm never going to do that again. Like learning CPR, you learn it in the hopes you never have to use it. Alas some questions about suicide have no answers. There is an empty painful ache in my gut, still after being six months, that will not go away. :-(

Saturday, March 1 2014

In doing some house painting, months after my death, hubby had to move a desk. He found my secret stash of papers, this among them:

“A Little Bit More” By Darla L. Dobbs Franklin, PA.

So dark, so deep --
not sure I can keep up the fight
It's been so long
I'm forgetting the light
Seems so impossible,
the walls are steep
Thoughts of hopelessness
are all I keep.
I resign to give up --
there's nothing in store
I hear a fiat whisper --
"Just a little bit More."

With barely the strength to move
My fingers slide and find a groove
With all I have left I find a foot hold
But the voice of despair screams out so bold
I look ahead - it seems so high
Hopelessness taunts,
"You're a fool to try".
I resign to give up --
there's nothing in store
I hear a faint whisper --
"Just a little bit more."

I look once more, I find a rope
"A thought enters in --
maybe there's hope
My strength is renewed
As the victory is pursued.
Now the battle starts to rage
Will I find freedom
or stay locked in a cage?
I consider going back
As I remember all I lack.
Fear rises up like a raging storm
I'm paralyzed -- unable to perform.
I resign to give up --
There's nothing in store
I hear a faint whisper --
"Just a little bit more."

No strength left,
my muscles are sore
My eyes are heavy
but I look once more
A hand of compassion reaches out
Hope take the place
of fear and doubt.
I pull strength from inside
and reach for the hand
Now I'm entering
into uncharted land.
Should I, could I dare to trust
From all that's behind
I realize I must.
A scary adventure, oh what a trip
A storm crashes in
our hands start to slip.
I resign to give up --
there's nothing in store
I hear a faint whisper --
"Just a little bit more."

I try once more I look around
I begin to hear a startling sound.
I hear encouragers all in one voice
Letting me know I have a choice.
I make a decision once and for all
I'm going to make it up
and over the wall.
The storms come and go
I strive and continue to grow.
The celebration stats
Deep down in my heart.
I know I can face all that's in store
As long as I give it "a little bit more".

When you are down and depressed think of me, Karen, and give it “Just a little bit More”

2015/10/12 02:26

Sunday, March 9 2014, 4:18 AM EDT

Karen's mother died. She had a stroke and heart attack many years ago. For the last eleven years she battled COPD.

She told Karen's sister, Sharon, that she kept hearing Karen call her saying 'Mom' 'Mom'.

Karen's Father has Heart Attack

Tuesday, March 11 2014

Today was Karen's mother funeral. Karen's father had a heart attack at the funeral. He was taken from the funeral via ambulance. While I look for reasons to not attend funerals, having to go to the hospital to help with his admission is not a good way.

I had planed on being in Durham since last Friday. I asked the family if they wanted me to stay or to keep my appointment with the Dean at Duke. They said I could do nothing here and maybe I could do something of value there.

{I saw Karen's dad yesterday on the 4th of July, he is doing well now.}

Wednesday, March 12 2014.

I make the ten hour drive to Durham, alone, once again. It was so much easier with Karen helping me navigate. She got a large parabolic mirror so she could see behind her so she could tell me when it was clear to merge to my right. On our first trip down we were very surprised and frustrated by the sudden appearance of six lane highway to our right, right as we wanted to exit!

Fellow leaker Lee Campbell, whom lives in the Durham area, negotiated a Leakers Rate with Comfort Inn Medical Park, and Durham Homewood Suites. Karen and I liked Comfort Inn because it was simple, nothing fancy, the hospital was just down the same street, there was a pharmacy and good restaurants right across the street. Contact me and I'll give you the magic billing code you need if you are going to Duke for a CSF related procedure.

Karen was always to incapacitated to make it across the street so I'd bring back food from the restaurants on occasion. Mostly what we ate were Amy's Kitchen dinners. Also at least once I'd make a trip around the corner to Whole Foods Market and bring back some fresh salad and other healthy things that we could not get at home. I went to the Whole Foods Co-op in Eire PA expecting it to be just like the one in Durham. I was disappointed. You could put four of the Eire Whole Foods in the one in Durham. {Now that I look at those web sites it is apparent they are two different companies.}

Please help us find connections to the hotels near Ceadrs-Sinai, not being from that area we've had no luck making the proper connections with the right people, to get better rates like we have in Durham.

Karen's frugalness lead her to check the hotel web site room rate daily, while we were already in the room. She learned that if the hotel is not full on a given day they will lower the rate in the hopes of filling the room. The going rate for the Elan Hotel when we were there was $200 per night. She got rates for $112 and $153 a night more than once when we were there.

The downside to any hotel in the L.A. area is if there is a convention in town, or during Duke's graduations in Durham. Those people know to schedule a year in advance and we don't, the hotels raise their rates during those, if you can get a room at all. :-(

2014/07/13 19:02 · bpaddock

Thursday, March 13, 2014 9:30 AM EDT

This morning Lee Campbell and I meet with Helen Poole and Joseph Tynan whom are with Gift and Endowment Planning Duke Medicine, Development and Alumni Affairs about Karen's memorial fund. Then we meet with dean Nancy Andrews, M.D., Ph.D.. I asked her to find a way to pass Karen's story on to the future doctors being trained there, so others don't suffer for 20+ years trying to find out what is wrong with them.

I've been wondering for a long time if I'm doing what Karen wants me to be doing. Should I be pushing finding help for CSF Leakers, and trying to find funding? I wish I had some way of knowing. I know part of the reason that Karen took her life was to “set me free”. Free having having to deal with Chronic Pain and CSF Leaks. I don't feel free. Will I ever be free while others suffer? Karen wants me “to be happy”. She had more understanding of The Secret that I thought she did. Hard to be happy when crying all of the time.

The family thought I'd do more good seeing the Dean at Duke than setting in the waiting room at the hospital with them.

Thursday, March 13, 2014 5:00 PM EDT

When I got out of the van in the hotel parking lot I saw a penny laying there on the ground. Karen knew of the story 'Pennies from Heaven' where they say when an Angle is missing you they throw a penny down from heaven to let you know they are missing you. I picked up the penny and saw that it was from 1969 the year Karen was born. Do I have my sign?

Friday, March 14, 2014 9:10 AM EDT

I meet with Ella Little, sales director at Durham Homewood Suites. They give a discount for people with CSF Leaks, and I wanted to thank her. I also wanted to find out if there were other places that would support lower rates for leaksers. I also asked her if she hand any contacts inside the Hilton Foundation, as a possible funding source for Karen's Memorial and the Dr Gray Fund. Ms. Little also offered the facilities if anyone wants to do a 'Leakers' reunion. [We were never able to make the correct connections with the Hilton Foundation people unfortunately.]

Friday, March 14, 2014

Karen's father had a quad-bypass and a valve replacement. So far he is doing well. I'm sure the full impact of Karen's mother being gone has not sunk in yet. :-(

Saturday, March 15, 2014

I spent the day at The Rhine Research Center, that is literally around the corner from Duke, learning about Dreams. J.B.Rhine started his studies of ESP at Duke in the 1920's. If Karen was stable I'd often hang out at the Rhine learning the things that have always interested me that few can explain.

Sunday, March 16, 2014

Make the lonely ten hour drive back home. I did pick up some CD books to listen to on the drive, makes the trip go a bit faster. Learning how to read Body Language.

Monday, March 17, 2014

I received this from Dr. Gray this morning:

From: Nancy Andrews, M.D., Ph.D.
Sent: Thursday, March 13, 2014 2:26 PM
To: Linda Leithe, M.D.
Subject: Mr. Paddock

Linda,

Mr. Paddock came to see me today, before he visited you. He asked me to make sure that our medical students learn about CSF fluid leak as a cause of positional headache.

I followed up on his request. Len White [Head of medical curriculum Neurobiology] told me that he would develop a case for the medical students during their Neurobiology course and have them read Mrs. Paddock's online blog, and Vern Juel [manages the medical student neurology rotation and he will include a case of intracranial hypotension for the medical students to learn from] told me that he would add a case on CSF leak to the Neurology rotation.

If you happen to speak to Mr. Paddock could you please tell him that I followed through?

Thanks,

Nancy


Thursday, July 3, 2014

I am to meet with a lady at the Franklin Area Chamber of Commerce to see if someone can scan Karen's medical records. I don't want to get rid of them in case they may help in CSF research, yet I don't want to carry them around with me like an Albatross from the The Rime of the Ancient Mariner.

She is late so I head across the street to have lunch. There I meet a friend that I'd lost track of. There are no coincidences in the Universe.

When we finally do meet she recommended Cadwell Printing Services in Oil City.

After those appointments I head it to the local paper's, The Derrick, office. I had no appointment. I was eventually directed to the editor Rich Jackson after explaining what I wanted to different a couple of different people. The Derrick often runs small things in the corner of a page near the back in remembrance of the loved ones that have passed on. I wanted one of those on the anniversary of Karen's death, August 7th 2013.

Mr. Jackson said they did not do such things for people that die of suicide, as that can lead to copycat deaths, see Werther effect.

I explained to Mr. Jackson that Karen's death had actually helped a few people, and inspired one lady to run a marathon. I told him I understood his concern. I asked him to at least read Karen's Journal, he said he would and would have one of the reporters he thought would personally understand Karen's story. I left the office disappointed. What would happen in September I could not have possibly imagined.

Saturday, July 12, 2014

I thought I might have 10,000+ pages to scan. Once I separated out the bills since 2009, apparently Karen got rid of all of the older ones, the stack on the left, I was left with the stack on the right that covers 1991 to 2013.


Late July 2014, exact date unknown.

I received a phone call from from Ms. Savannah Barr a reporter at The Derrick Newspaper. The paper decided to run a story on Karen after all. She starts asking me questions on the phone. I suggests that it would be easier for both of us to meet in person at her office, which we do the following day.

Thursday, August 7th, 2014

Karen has been gone one year today.

I still cry a lot. Can at least manage to go a few days at a time without crying now.

I check the paper today, there is nothing in it about Karen. Guess they changed their mind about doing story on Karen.

Wednesday, August 20 2014 12:06pm

On the CSF LEAKS (Cerebrospinal Fluid Leak & IH) Private Group someone asked:

“What kind of leaks did Karen suffer from?” which started this exchange between Karen's cousin Charity Heilbrun and I. With Charity's permission I am posting our exchange here:

Me: … it is times like this that I really miss Karen. She could have just rattled off the answer to your question. I can't. I should dig that information out of the medical records. Right now they are at a scanning service to be put on DVD.

Her accident was a whiplash and head impact. There was never any signs of a cranial leak. We always assumed the problem was in the neck region.

She had some X-Rays from a fall at work before her car accident. Those showed a normal cervical curve. After her accident there was no cervical curve, bones looked like she had a ruler strapped to them they were so straight.

I know she also got some patches in the bra strap area as well as higher.

None of her image studies were ever absolutely definitive.

Her autopsy showed she was leaking at the tip of her Dura. This lead to speculation that she might have had Tethered Cord, that her cousin does have. Her cousin Charity Heilbrun also has chirari leading to speculation that there is a genetic connection.

Charity, I recall the discussion that the two of you had about your chirari and Karen wondered if it was pseudo chirari from a leak. I've never found anything in Karen's writings about Tethered Cord nor recall her ever mentioning that. Did Karen know you had TC?

Charity responds: I also have Chiari syringomyelia occult tethered cord, basilar invagination and Ehlers Danlos Syndrome [EDS] hyper mobile type… I suspect Karen may have had some of these as well.

Sorry forgot commas.

Yes Karen and I did discuss pseudo Chiari . . To be honest that is the first I have ever heard of it.. there is however acquired Chiari .. the problem is most drs are under an assumption it is the degree of herniation that is the issue .. and that is FALSE any Chiari even Chiari 0 is problematic. No we never discussed tethered cord, or EDS.. looking back I would have posed sooo many more questions to her. Hind sight is always 20/20 Karen was always one to ask more about another's issues more than discuss her own at length. 2 of my 3 kids also have syringomyelia and possibly hyper mobile eds… so there HAS to be some kind of genetic link. The symptoms are so vague that you almost have to look for them.

Me: Karen could tie her fingers into knots. She did this when she was nervous. Usually in a doctor waiting room. Her back was extremely stiff, which doesn't seem to fit EDS? She said that started as teen, pre-accident.

Charity: My back and neck started when I was about 14… I have syringomyelia c3 to l 1.. now I am younger than Karen .. not by much, but when they did my first MRI at 14.. they did not know what they were looking at and said nothing was wrong … it was not until I was 27 and had severe issues and was taken to Pittsburgh by emergency that they figured it out. I am sure Karen's heds [Hyper EDS?] was worse than mine, but that would explain her leaks .. I have gotten leaks.. but not unless I had surgery. I have a pseudo miningocele ( spelling ?) From my brain surgery as well.


Some types of Osteogenesis Imperfecta are linked to defects in enzymes that help process collagen to its mature form. Elevated levels of a a signaling molecule called TGF-β have been found in experimental mice engineered to have this less common form of OI that affects collagen processing.

TGF-β may aslo be responsible for disrupting the way immune cells respond to common foods and environmental allergens, leading to a wide range of allergic disorders. Some of which Karen had, specifically mold.

TGF-β signaling are also keys to Marfan and Loeys-Dietz syndromes, genetic conditions marked by blood vessel laxity and dangerous stretching of the aorta, the body’s largest blood vessel.

What is relevant to us here is that over the years several doctors commented on Karen's Marfan Syndrome like traits such as long arms, legs and fingers, tall and thin body type, curved spine, large forehead. Also they commented that her head seemed unusually large and heavy comparing it to the weight of a bowling ball. We actually weighed it once by her laying on a scale, not the most accurate way, where we found it weighed about twelve pounds.

The blood-pressure medication Losartan, known for its ability to tame TGF-β signaling has been experimented with as a promising treatment for allergies. The drug is an old, common medication already approved by the U.S. Food and Drug Administration to treat high blood pressure. Losartan’s effects on TGF-β were discovered by Dietz and colleagues. His group subsequently showed that Losartan can halt the dangerous ballooning of the aorta caused by abnormal TGF-β in patients with Marfan and Loeys-Dietz syndromes. I wonder if there are any studies that could link TGF-β to Dura damage or that Losartan would treat the underlying cause of “Crappy Dura”?

Statistically women suffer more often than men when it comes to EDS, Marfan and CSF Leaks. What is the connection? TGF-β? The hormone Relaxin, which has significantly higher levels in females and is related to bone reformation?


Wednesday, September, 3rd 2014

Today is Karen's birthday. I had hopped The Derrick would have run their story today. I did not find it. Guess they changed their mind for sure. :-(

Monday, September, 8th 2014

I find myself as the centerpiece on the Front Page of The Derrick! I expected some small thing in the corner!

“Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day.” - The Derrick Front Page Story Sept. 8th 2014.

Mid September, 2014

I spent several days at Duke University School of Medicine recently, after this story was published in The Derrick on September 8th, to find out exactly what was happening. The highlights were meeting Professor Daniel Schmitt, Ph.D. from the Department of Evolutionary Anthropology and Associate Professor Leonard E. White, PhD from Duke Institute for Brain Sciences (DIBS).

Dr. Schmitt is the one that oversees the students doing dissections. He has already started to teach Karen's story as part of his course. He is now putting special emphasis on the Dura and how it can lead to headaches. In the past the Dura was just something to be removed to get to the Interesting Stuff. They would like me to return to speak to the students, and take part in a dissection myself (not sure I'm up to that?).

We then meet Professor White. They will make Karen's Journal required reading for the Neuralbiology class (Future Neurologists), starting in January 2015.

This course is also available as an Massive Open Online Course (MOOC) THERE ARE CURRENTLY 100,000 PEOPLE IN 180 COUNTRIES TAKING THE CLASS.

“Feel free to pass the word to others you may know who might benefit from more formal study of medical neuroscience and the structure/function of the human central nervous system.” - Dr White

I COULD NOT HAVE IMAGINED HOW TO REACH THAT NUMBER OF PEOPLE FOR THEM TO LEARN ABOUT THE CAUSE OF POSITIONAL RELATED HEADACHES AND CHRONIC PAIN, THAT KAREN SUFFERED FROM FOR NEARLY TWO DECADES.

https://www.coursera.org/course/medicalneuro

In the paper end there are two errors at the end. It is my gut that aches not my heart, like you get butterfly's in your stomach not your heart.

The other error is the very last paragraph should be two paragraphs up, in that people should not hid their pain as people with Chronic Pain do.


Sunday, September 28 2014

On one of the Facebook groups a comment was made about wanting to donate their body to be studied to find their CSF Leaks. This is my reply:

For years Karen said she wanted to donate her body. At some point she actually looked into it and decided it was not possible for what she wanted done.

She died at 3:30 PM on a Wednesday. Thursday morning my brother-in-law and my Mother went to the local funeral home to make arrangements. At this point I was still in shock and not thinking clearly and said nothing about donations, tests or anything else. I simply did not think of it.

By Friday morning I was thinking a bit more clearly and remembered what Karen had said about donating her body.

To that end I contacted Dr. Gray to figure out what we could learn from Karen's body, there were to many logistical issues with even considering being studied in LA, such as timezones to just get the phone calls made.

What doctor Gray discovered on her end, and me working from this end, is that if you send a body to Duke it ends up in the cadaver program, and there is no way to override this. Dr. Gray could not figure out how to fight “the system”. I even spoke to the head of the program, wish I remembered her name at this point so I could write her a letter (Was still not thinking all that clearly then to take notes), while she understood what I wanted there was no way “in the system” to do what I wanted. If a body shows up, it goes to the medical students dissection program. End of discussion. :-(

Lee, we discussed this with Dr. White when we were there and he said he would look into fixing this problem, perhaps it would be better to get Dr. Schmitt to fix this problem, being more directly involved with bodies?

With the help of the local funeral director and discussions with Dr. Gray. Karen's spine was removed during an autopsy in Eire on Monday, the day of her funeral, and sent to Duke to be studied by the pathologists there. I actually did see images of Karen's spin when I visited Dr. Gray in the fall of 2013. For reasons that she did not explain she thought it would be a bad idea to allow me to post these images so I never got copies.

As I wanted to remember Karen as I last saw her alive, I never did see her after her death (Her family wanted to and did) so it was always planed to be closed casket funeral.

Karen was always late to everything. Anytime we were to go someplace she always had to go to the bathroom six+ times before we left the house.

Her autopsy to remove her spine was done Monday morning in Eire, the day of her funeral.

Karen really was late to her own funeral! :-/

She arrived back at the funeral home about the time the minister was wrapping up the eulogy.

Now my long winded point here is it would be good to donate your body to be studied (No early checkouts please!), I learned the hard way that all of these arrangements must be made in advance, and everyone along the chain must know what you want. Your family, your funeral director, and the place that is going to get your body.

Also I can not stress enough that each adult member of your family *MUST* have a will! Karen and I often talked of getting ours. We'll do it tomorrow… Well we ran out of Tomorrows! Even a year later I'm still running in to complications with things because we did not have wills.


Saturday, October, 11th 2014

Garth goes to the dentists. He really wants to find Karen. Heart Breaking. :-(


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