I must admit, I am so glad to have found this forum. I hope that my experiance might be able to help someone else with this condition.... or maybe we can just cry together (I do that alot LOL). This might be kinda long, though, so ya may wanna grab a cuppa coffee or some tea or something to tide ya over.
In January of 2000, I was putting Christmas decorations up in the attic and, and wound up loosing my balance due to a dizzy spell, although I didnt wind up falling, I felt a sharp pain in my hip and thought, ut oh, pulled a muscle. Didnt think twice about it, though. A few days later, I started feeling extremely fatigued, even after a good nights sleep, and having been anemic in the past, made an appointment with my GP to get it checked out. The blood test came out normal, but she went ahead and put me on iron tablets and Vitamen C supplement, just to be on the safe side. After a couple weeks, I was still having problems with just being so very, very tired, and went back. She didnt know what else to do, and decided to put me on prenatal vitamens.
About a month after this, I got a case of SEVERE tendonitis at work. My GP was on vacation at the time, so I ended up going to a different GP. After dx'ing the tendonitis, I told him about the extreme tiredness, and a seeming lack of strength in my arms, and unsteadyness in my legs. He directed me to two different specialists, a orthopedist and a neurologist. The orthopedist was first, and did a X-ray and CT of my spine and an EMG of both arms. He said I was suffering from Carpal Tunnel and suggested surgery on both wrists to correct the problem. Hubby and I decided to wait and see what the neuro said before commiting to THAT surgery.
The appointment for the neuro was about 3 weeks later. In that time, my symptoms had progressed to a list that was starting to really scare us. I had started having HORRIBLE migrains, numbness and tingling in my neck, shoulders, arms, and back, trouble walking, and craziest of all, was the fact that I'd lost feeling in my feet and the tips of my fingers. After ALOT of neurological tests at the initial appointment, he told us there were only 3 more things he wanted to do before making a diagnosis, a blood test to rule out Parkensons, another EMG and an NCV, and a head and neck MRI.
When the results came back, he told us that I had Chiari Type 1 Malformation. And suggested that we immediately consult with a neuro-surgeon from Vanderbilt. Two weeks later, we were informed that unless the pressure was reduced, that at the rate of neurological degeneration I was experiancing, we could expect neurological problems to start affecting "life sustaining organs" within a 6 month period. That was a Thursday, and I was scheduled for surgery the following Monday. I was released from St. Thomas the Wednesday after surgery, and have no memory of the next two weeks. Until this time, I had been in the hospital only to deliver my son, and was extremely adverse to taking medication. Upon leaving the hospital, I had a bag of prescriptions including muscle relaxers, pain killers, neuro blockers, and anti-seisure medication of some kind, and prednisone.
Apparantly at release I absolutely refused to wear a halo, and hubby was given strict instructions about my schedule of being up and laying down. The first 2 weeks were nothing but bedrest, the third week I could get up for like 15 minutes 4 times a day, fourth week 30 minutes 4 times a day, and etc. over the next 2 months. For the first 3 weeks hubby was told I was NOT to be left alone under any circumstances. Three months post-op, against advice of friends, family AND neuro, I started back to work.
Two years post-op, I quit work do to pain and fatigue and about 8 months later gave birth to my daughter Kathryn, who is now a boisterous 4 year old, gonna be 5 in December. Once I had gotten over the actual surgical procedure, I have residual nerve damage in the back of my head, neck, shoulders, arms and hands, which cause a constant dull ache. I also have dx'ed myofascial pain on even minor exertion and extreme fatigue, with major stress and tension headaches.
About 1 1/2 to 2 years ago, I noticed a major change in my visual acuity and comprehension skills. After 5 different opthamologists, I recently found someone who would hazard a guess that my visual problems might be related to the Chiari Malformation, or subsequent problem. He ordered a head MRI which I just had today, erm, yesterday looking at the clock.
We have recently begun the process of applying for SSA and SSI. So, that is my story so far. Thankyou all for you patience reading this, and I hope that someone might be able to use this in some way.
God Bless you all!!!!