what to do now?

[notmytime]

I had Decompression Surgery in Dec 07 went without symptoms of Chiari for 2 mos.  All of a sudden they returned with a vengence.  I feel like I'm going to die.  Doc quit the practice and has a no compete clause, so he can't see me.  No other doc will treat me cause they don't deal with Chiari.  Anyone have any ideas where to go from here?!?!

[dieselann]

Contiue to look. Go on the web to www.chiariconnectioninternatioal.com      I am from Canada and I am looking for a specialist in the States because we don't have any chiari institutes here.You can find of list of all specialist in the world there

[(Not so) Spunky]

Wow- I can only suggest you visit ASAP.org. They have lists of Chiari experts and hopefully there is one by you.. Can your old Dr not refer to you someone? Or at least call/write a letter to your new NS regarding your condition? I'm so sorry that you're going through all this. It sucks that Dr's are not informed more about this condition and some even refuse to accept it as a serious one. Do you have a syrinx also? That sometimes will get a better response from Dr's because of the seriousness. Although, I would think a failed PFD should get quite a bit of attention. Let me know if there is anything I can do to help- I can't stand the fact that some Dr's refuse to even acknowledge Chiari as a "condition". Maybe print out a bunch of research papers from the internet and bring to your PCP? Not sure about yours, but mine didn't necessarily disregard my symptoms, but did not think it was the cause. But he did refer me to an EXCELLENT NS per my request, and well, since I had the surgery, he has apologized numerous times for not taking it as seriously as he should have. Just please don't give up and use the ASAP.org site as much as possible. It was a lifesaver for me!!