The medical history of the late Karen Shettler Paddock

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 “[]”.


  • 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 hide the pain of a broken leg for four days

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.


Systemic Tendinitis starts

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}


You could leave a comment if you were logged in.