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1468090 tn?1289093410

A GREAT NS NEAR KY?

DOES ANYONE KNOW A GREAT CHIARI DOCTOR NEAR KY? I HAVE LOOKED AT SOME ONLINE IN NASHVILLE TN,AND SOME AT THE CLEVELAND CLINIC OHIO,BUT I WOULD HATE TO TRAVEL THAT FAR AND THEY NOT BE GOOD DRS.
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620923 tn?1452915648
COMMUNITY LEADER
The list we have here is compiled by the members,...the drs on the list are our drs and are only put on once we had surgery and liked the dr....u have to do the research to find the dr.

Many of us do need to travel in order to get to the right dr for us.....Plus there r orgs out there that will fly u to ur dr appointments.

"selma"
Helpful - 0
1468090 tn?1289093410
That is great,i think i'm going to try the dr.s in tennesee,i was just afraid of going all the way out there and them telling me the same thing the drs here tell me.do you know the name of the orgs who might could help me get there,i have a car but i'm only allowed to drive here in town because of my eyes,and it wouldntt make it that far to let someone else drive it,i can't get a cab to take me with the medical card because i have a car!

thanks for all your help selma,it's nice to be able to talk to someone who understands ,my friends sorta just go along with me ,they really dont think i'm that sick i dont think.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER
http://www.medhelp.org/health_pages/Neurological%20Disorders/Links/show/538?cid=186

This is a link to the links page in the Health Pages...it has several different links to orgs that can  help...Wishes and Rainbows is another one....http://www.wishesandrainbows.org/

Well remember not to be too upset with them...there r way too many drs that do not believe or understand chiari's effects...how can we expect family and friends to?

Hang in there : )

"selma"
Helpful - 0
Avatar universal
I live in KY and I have looked high and low for a neurologist who knows about Chiari. to follow me after surgery. I went to the Cleveland Clinic to have my surgery on August 20,2010.  Dr. Xiao Di is great and extremely Chiari intelligent.  However; they are sloooooow at getting back with you, and after surgery they disappear off the map.  My husband and I have put in 6 messages in 3 weeks concerning some possible surgery related complications, the receptionist always says she'll put my message in as urgent.  Still no call back.  I'm very disappointed in them. Cincinnatti has a wonderful neurosurgeon who is a chiari specialist, his name is Dr. John Tew and he is with the Mayfield Clinic there in Cincy.  I opted for Cleveland because of Dr. Di's endoscopic surgery, you heal much faster. Sadly, because of their lack of follow-up after the surgery, I am no longer suggesting Cleveland as top choice.  I gave up on them calling me back and went to my PCP this afternoon.  He talked about admitting me to the hospital due to heart palps and chest pain, I told him I didn't think it was necessary because I know how things goes for all of us...they won't find the problem.They took an EKG in his office and it was good. I really think it is due to my brain stem issues after the surgery, but I let him run several blood tests to make sure there isn't something else going on.
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620923 tn?1452915648
COMMUNITY LEADER
http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Do use the list and please research all drs u consider seeing.

"selma"
Helpful - 0
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