Syringomyelia Life expentancy

General
1

Hi everyone,

I have been reading up on this disease and am getting conflicting information. I am reading that the life-expectancy of syringomyelia, once detected, is 10-13 years? I would think with proper medical care, we would have a good prognosis, right? I for one, my doctors didnt explain anything to me. They seemed to be trying their darnest to rush off as soon as they could, and deflected my questions to the next doctor I was to see, only for the next one to act like it was no big deal (neurosurgeon). The neurosurgeon said maybe in a couple of years something will how up. I am confused becausej my syrinx is from somewhere cervical(they didnt even tell me exactly how high it was) all the way to the conus. It has been there a while and I have many,. many symptoms.

So, I was wondering, if anyone has any experience on these areas or not! I am not afraid of my disease, I am searching for answers so that I can be knowledgable.

I am off to see Dr. Tew next month for more MRI's and maybe even repeating the one's that were already done, so I know I am in good hands. But, I would still welcome anyone's experiences.

Thanks Everyone! Have a good day- Beth

2

Beth,

I do not have syrinx so I'm not sure how much help I can be? My understanding is it is more about the herniation that can cause problems, since the cerebellum regulates your heart, etc. I have a friend who had the decompression surgery and I believe they drained his syrinx as much as they could. They can't remove them so I think the only option is to drain them to make them smaller. Not positive on that. His surgery was a success. A few years later he was rear ended and it burst his syrinx. He's fine but the pain is really bad now. I would definitely keep looking for a better doctor. Quite a few people have had to travel for their surgeries or consultations to find a Neurosurgeon who specializes in Chiari. It sounds like you found one though for next month? Hopefully he will be able to answer all your questions and put you at ease. More importantly I hope he listens to you!

Sarah