Arnold-Chiari Malformation Support Group

I beleive I have told you about these drs before . Dr. Benzel at the cleveland clinic is tops in Chiari and Dr. Tew at the mayfield clinic is tops in Chiari .

Maybe you did Rozia I don't remember. But thank you. It is a long drive for me but I still haven't got a call from my neurologist so this makes me think she is having trouble finding one here in my area. Well there is some here with the mayfield clinic but they don't use my insurance.

Insurance can be tricky. If you have some time (meaning you don't need immediate intervention) begin the out of network coverage process with your insurance. It takes persistance and good support information backing your request/demand. We went to TCI which was excellent in every way including instructions and support regarding getting out of state/network coverage. I am sure any doctor you choose has insurance personnel that is familiar with what you will need and will be your ally through the process. Remember, persistence and document every call with your company. You just have to jump through all the hoops.

All I can say is YOU have to do your homework. ASK the ns for their success rate. If they give you bunk about it then find some one else that will provide that to you. Ask for it in writing and ask for patient referrals that you can actually talk to. Remember that just because "they" or "some one" says they are experts in treating Chiari means nothing. How is their follow through? How well do they understand the myriad of other disorders that can accompany Chiari? Like I said YOU need to do the home work. I have worked with many ns in my medical career and there are a lot of egos out that that "want" to tell you "they" are experts so "they" can get another notch on their belt so to say. I wish you luck in your search.
Kellie
kellie@chiariansunite.org
www.chiariansunite.org

Personally, i didnt want just anyone touching my head when it came time for my surgery. I drove all the way to MAYO clinic in Minn. From michigan. Well worth it, atkinson is the best doctor in the country!