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Chiari Malformation Community
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Avatar universal

finding a specialist

Does anyone know of a Chiari Specialist in Winston-Salem N.C.? I was diagnosed in May of 2009. The PCP I was seeing moved to VA 8mths after I was diagnosed. since then i have been going through the ring trying to find a PCP who KNOWS let alone even AWARE of Chiari Malformation. I have been seeing Dr. Wofford for  the last  year when I first saw him he seemed to be interested in my condition, and willing to learn more about it.  When I went for my second visit with him after i said everything I needed to say he looked at me and my husband and and said " I HAVE HEARD ABOUT IT, I DON'T KNOW MUCH ABOUT IT, AND WOULD PREFER FOR YOUR NEUROLOGIST TO DEAL WITH IT". So before i left i gave him a web site to pull up so he can learn a little more about CHIARI. HE LOOKED at me and said "I have NEVER had a patient give ME HOMEWORK. I'll try to make time for it.
3 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

It is important to have a PCP willing to learn about Chiari...a neurologist is one that DX's conditions and a neurosurgeon treats with surgery....most times, treatment for Chiari is surgery, it is not a cure, but a means to restore CSF flow and slow progression.....

A true Chiari specialist is whom you need....we do have a list of Drs...and I am not sure if they are near or in the town you mention....many of us have to travel to get to a Dr that is well informed and experienced.

Use the list as a starting point as it is not meant to be a referral nor an endorsement for those on the list....our list was compiled by the members here of Drs they have been to, treated by, and liked......

Educate yourself on Chiari and ALL related conditions...so you know whaat testing the Drs should be doing and what conditions they should be ruling out....this aids you in knowing which Dr is the right one for you and having the right Dr is key.

I will bump the Drs list 2015 up on the page so you can locate it...if you have issues finding it please let me know via this thread.

Know you are not alone.
Avatar universal
I'm in NC also and I have my appointment with Dr. Michael Rosner in Hendersonville, Nc who is a specialist in this area and he's on the doctor list posted on this site.
9432311 tn?1432828685
Hello fellow North Carolinian. I am in New York as I write to you. Tomorrow I have my second surgery with a doctor I found here at the Chiari Institute in Long Island. I chose a surgeon here because I am from NJ. The traveling is a bit challenging. However, as Selma tells you above, finding a specialist is key. I have heard good things about D. Henderson, however, and I know he is on the list of specialists here on this forum.

For now, do all your researching, while you wait to see Dr. H. It is very helpful to keep a journal where you record symptoms and activities that may have brought them on. Keep watching this forum for great information as well as to get some really wonderful encouragement. A lot of people here are very experienced with this condition. Come here, so we can make you feel so not alone.
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