cerebellar ectopia

[navecb23]

A few years ago my doctor said I have this condition and it was what was causing my headaches that are severe stabbing pain in my left eye and jaw with pressure headaches some of the time that accompany the pain. He suggested that the symptoms I displayed are not bad enough for surgery and he can see nothing on the MRI suggesting that I was herniated enough for surgery...never said how many MM. The last two years I get headaches occasionally which go away in a couple weeks! I can function in between them as they last 15-30 minutes and I move on with my day. My current flare up consisted of bad neck pain that if I touched my neck would cause a headache or even showered would cause pressure. Its starting to relieve again but it's scary to think it may not stop. I have to wait 3 weeks for my insurance to kick in before asking to see a doctor again. I am off balance most of the time but can manage it and my last bad flare up was a year and a half ago? I live in PA and unsure who is proficient and if chiari and this condition is the same?

[selmaS]

  Hi navecb and welcome to the Chiari forum.

Chiari symptoms do cycle and flare.....so this is typical for most of us...and this is what can make getting a DX difficult as there are more with this condition then there are Drs well experienced with it.

We do have a list of Drs other members here have been to, treated by and liked....I know there are Drs in Pittsburgh, Ohio, and Maryland....let me know what area you would like the names for to research.....not all on the list may be true Chiari specialists...so you will need to see a few and compare them....and to do so, educate your self on Chiari and ALL related conditions to help you know when you found the right Dr for you!