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.

• Her clinical interests are: Spinal imaging, MR of spine trauma, cerebrovascular disease, dementias, spinal interventions, CTA. This information is at http://www.dukehealth.org/physicians/linda_g_leithe

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

• Sixty-six [now 74+] publications where she was the author or co-author are listed here: http://www.experts.scival.com/reachnc/expertPubs.asp?n=Linda+Gray+Leithe&u_id=980011290

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.

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. :/

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:

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.

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.

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!

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.]

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.

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