I Have Syringomyelia

I have just found about 2 months ago that I have syringomyelia. I have it from my c6-t9. I am going to see a neurosurgeon in oct 12 and am very nervous/scared. I know what syringomyelia is but would like more information about surgeries an complications thank you.
Stronggirl4 Stronggirl4
18-21, F
4 Responses Sep 22, 2012

Hi, what about your surgery ?

Where do you live? Make sure you are seeing a specialist in Chiari and/or Syringomyelia. I saw many doctors, read lots of blogs and forums and really did my research. I do not have Chiari but Syringomyelia. I went to The Chiari Institute in NYC which is a bit of a drive but they are very informative and educated. Don't waste your time seeing someone who doesn't specialize in this. It's a rare disease. I was told I need a Cranio-Cervical Fusion. Hope this helps!

Go to www.asap.org, which gives you a LOT of information, complete with message boards. And surgery is not always the best option. Especially if there is not much neurological decline and/or problems.

Anybody who can give me any information I would really appropriate it thank you