Couldn't find what you looking for?


I was diagnosed with Chiari in 2006 and had the decompression surgery. I had Chiari and Syrinx. I was amazed to find how little information there is on this condition. Now I'm on a mission to bring awareness to this condition. Decompression surgery rarely fixes the nerve damage already done before surgery. Chiari causes the headaches at the base of the head and neck where they connect. The syrinx in your spinal cord causes all of the central nervous system damage. I had both of these conditions. I'm still numb on my left side from head to toe, I dont walk normal, all of my skin on my body is numb, I still get dizzy if I bend over or move my head while walking. But I do have peace of mind that the damage to my body will not get worse. There are situations where people have to have more than one surgery. I dont understand this because if they remove the problem part of your brain how does it come back? Are they not doing the surgery right the first time? After 2 years my brain has not started to lower again. I have had new MRIs this year and it shows no lowering of the brain. Also why does the medical community as a whole not know of this condition? Chiarians are always having to teach thier Drs. about this condition. Thats just wrong! We are sick yet we look normal so alot of Drs. do not take us seriously. With what I know now I had symptoms starting at 18 but was not diagnosed until I was 42. No Dr. I ever had took me seriously and some thought it was all in my head or I just wanted drugs. Why should I have been sick and miserable for all of those years because Drs. were not staying up to date on things outside thier specialty? Now I'm better, but I will be disabled for the rest of my life.
So I decided that instead of being angry or feeling sorry for myself I would do my best to bring awareness to this condition. I would like to invite anyone who wants to, to help in this cause.


Thanks for posting.

I'm glad to hear that your condition is stable for the time being.

Good luck and thanks again for sharing.