Syringomyelia in Remission?!
by Staci Wietrecki
Hi, my name is Staci Wietrecki. On January 21, 1989, at the age of twelve, I was diagnosed with Syringomyelia (SM) and a Chiari I malformation. My diagnosis came quite by accident. At the age of six I was diagnosed with "flexible" scoliosis. Well, there is no such thing and I went for years having spasms up my back that felt like fireworks exploding.
During this time I started falling down for what seemed like no reason at all so I went to a knee doctor. He did not know what to do and then I went to a heart doctor because I could feel the spasms in my chest. I went from doctor to doctor until I finally went to a neurologist. The neurologist told my parents that I needed to see a shrink because I was making this up for attention. Thankfully my parents wouldn't listen and demanded I have an MRI.
When I had the MRI the wrong doctor walked into my room and diagnosed me. My neurologist did not even know about SM. The neurosurgeon who diagnosed me was Dr. Jeffery Cozzens out of Evanston Hospital in Illinois. When he told me that I had SM he talked to me, not my parents (they were in the room) and explained to me what was going to happen. The only permanent symptom I had was a loss of temperature control, so he felt I had time to wait before surgery. He wanted me to have 3 more episodes of problems before we went ahead with a posterior fossa decompression.
In August of 1989 I would have my surgery (7 months after diagnosis). I had been swimming in a pool and lost control of my right arm and left leg. My dad was with me. He had to get me out of the water. At the same time, I had the most horrible headache and screamed for someone to cut off my head. I was taken to the emergency room and was told that I would be having surgery soon. I had total faith in Dr. Cozzens and knew that I would be o.k. My surgery lasted 6 1/2 hours.
I spent the first night in ICU and refused most pain medication. I don't know why! I transferred my self to the pediatric room and continued to refuse pain meds. I would be home in 4 days. I would be back at school for 1/2 days in 3 weeks and full time in 8 weeks. My syrinx which ran the entire length of my spine dissipated in the surgery.
I would have several MRI's after surgery and then went every 6 months unless otherwise needed. Today I have them only when the doctor feels its necessary. After surgery, I experienced migraine headaches that would knock me out for a week. That would happen every 6 months like clock work. They lasted about 2 years and I have not had one since.
I am now 21 years old and the only lingering effect I have is that of temperature control. I have learned to live with it. It usually requires me to be rehydrated twice a year. I dehydrate very easily. The doctor has only given me two restrictions, no deep sea diving or jumping out of a plane.
I consider myself to be in remission from SM. I can't say that I am cured because there is no research to say that. I believe that it will not return but if it were I would have the surgery all over again without a doubt.
About two years after my surgery, Barbara White, the founder of ASAP, would name me the Director of Children's Networking. For several years I wrote a page in the newsletter and still continue to talk to both parents and children who are facing the possibility of surgery.
One year ago I was involved in a very serious car accident in which I had immediate pain in my back. Luckily, after several MRI's I can still say that I am in remission of
Syringomyelia.
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