hi everyone! I am so glad I found this site two weeks ago it has helped a lot. First off I want to say that I am praying for everyone on this fourm and I hope you all can have as many pain Free days as possible. I am 17 years old and have Arnold-Chiari Malformation. It's basically ur skull is too small and malformed so my brain herniated down the hold and sits on my spinal cord. I have had three brain surgeries for this all with in the last year and a half. I am in pain all the time and it is very hard to do basic things like go to school therefore I am hardly there. I had a spinal tap last march and my ns at the time said everything was normal. Now I'm with a different ns and he read the report that noted I had. An op of 28. So I have been on diamox for two months and it makes me feel awful and does nothing for the pain. I am having a spinal tap on dec. 20 and if my pressure is still high my ns wants to put a shunt in because the diamox isn't working and when I have spinal tape they can't get to a low cp because it is bad to have spinal taps with chiari so they drain as little fluid as possible. Sorry for all the rambling, it feels nice to know other people can relate.
Posts You May Be Interested In