Hi and welcome to the Chiari forum.
We do not refer, but we do have a list of Drs that the members here have gone to and liked...u will still have to research them and see who is the best one for u...we do suggest u educate urself so u can recognize a true chiari specialist...not all on our list may be, but they did successfully treat via surgery....
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
What type of symptoms r u having?
Do u know if u have a CSF obstruction?
Thanks for the welcome!
I have suffered with a number of symptoms for a number of years - most of my adult life - that were attributed to many other things, including TMD, arthritis, and disc problems in my cervical spine. I have had headaches, neck pain, numbness, extreme sensitivity to sound, and unrelieved pressure/tension in my neck and lower skull since I was in high school. However, I recently developed some new symptoms, including eye pain, ear pain, numbness and tingling in my face, upper back, shoulders, and arms.
I recently had a brain MRI and cervical MRI and discovered the chiari, and my neuro essentially said that it was no big deal and that I was probably born with it - and that's it. Not very helpful. I do not know if I have a CSF obstruction and have not had CSF flow tested, which seems like the next thing I need to explore.
I'm just trying to figure out next steps and get more informed...
Most of us have had that same reaction from Drs, until u get to a Chiari specialist is seems to be like that....
We all were born with it, unfortunately they did not start using MRI's widespread to dx until the late 1980's and even then were so expensive it was not all that often....so, it is a condition too many Drs do not know much about.
Well u r in the right place and know this u r not alone : )
I live in Chapel Hill, and the most understanding docs have been my ophthalmologist who Dx'd the visual disturbances, and the neuro-ophthalmologist at UNC hosp. He understood the danger to my vision from Chiari. I went to the head of the NS dept there too--he's my DH's dr.--but he was shocked at how dismissive the NS was. I told him that this was "par for the course".
The NL I saw in Durham told me that NMH was no big deal. Oh, really? Docs should be subjected to some of the symptoms we endure!
There's a Chiari specialist at Duke, but I heard he was only seeing peds pts. There may be others; you might want to check. Duke has a good patient pamphlet online. They're also studying the genetic link.
My NS is Dr. Rosner in Hendersonville.