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My name is Cyndy Bell and I live in a small town outside of Chattanooga, TN. I have been watching your show since the beginning. I find it very interesting. I'm currently on permanent disability for several rare conditions which have taken me out of a teaching and nursing career. After battling being what I call a "Professional patient"for the last thirteen years, I'm thankful that someone is teaching Americans how to be medical consumers. When I saw your show today I wanted to get a message to Fran about her campaign to empower people to take control of their own health. Here is a short synopsis of my story.
In 1992, shortly after my marriage to my wonderful husband of 17 years now, I started to have very strange and unrelated symptoms. My doctor sent me to the Mayo clinic which diagnosed me with "Dysautonomia". In computer terms, my system was just off-line. They treated the SVT, syncope, and other sx separately. In 1996 however, I started having horrible unbearable headaches. After a few visits with my neurologist, he found out that my intracranial pressures were too high and rising for no apparent reason. I was diagnosed with pseudotumor cerebri and was shunted to try to drain the fluids. The only problem was that this diagnosis made no sense since it usually just runs in generally overweight population and at that time I was 5'3 and 100lbs. I went to several large institutes of education and many blamed it back on me and said that it was all in my head...and yes, after four years of study on the internet, the proper MRI was taken and I was diagnosed properly with Chiari I malformation. I was a teacher at this time and had to stop teaching. I learned how to stand up for myself with doctors and learned that they were only people too and I HAD TO BE IN CONTROL of my OWN HEALTH!!!
In 2000, I had a surgery in Chicago wihich decompressed the area of the cerebellar tonsils that were hanging down into my spinal area. They removed a large chunk of the skull and placed a dural graft of bovine pericardium. It helped for a few years, and thankfully, I was able to have my beautiful daughter and go to nursing school. In 2004 however, the headaches came back. We tried everything but nothing was helping. Finally, I went to the Chiari Inst. in New York. in Jan 2007. They diagnosed me yet another rare condition with my Chiari which was Ehler-Danlos, and also a tethered cord. In Feb. I had a ten hour surgery to untangle the bottom of my spinal cord, and then in March, they did a surgery to lift up my skull with traction to relieve the pressure on the brain and then literally "screwed my head" back on from the occiput to C-5. The work they did was great, however, when I returned home, I spent most of 2007 in the hospital and was found to have pituitary failure, (Due to the high ICP's) which had squashed my pituitary down to nothing. They also found I have "Mixed Connective Tissue Disorder" which includes all the auto-immune DX like lupus.
Due to the pituitary failure, I have no TSH, and thus now am dealing with being diabetic also. Recently my GI system has shut down, so I'm on IV Phenergan through a port, just to keep the nausea to a level where I can eat something and stay out of the hospital. I have over 22 medications, have had a total of 27 surgeries, and over 70 lumbar punctures.
I don't feel sorry for myself, I just want to be able to use my teaching and nursing skills to help others deal with chronic illnesses. I wanted to get this to Fran and show support for what she is doing. Cyndy Bell, RN, BSEd