Chiari Malformation Community
Need a Chiari specialist in Knoxville, TN
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Need a Chiari specialist in Knoxville, TN

I am posting for a co-worker who has been diagnosed with a Chiari malformation.  She desperately needs a neurologist/neurosurgeon in Knoxville, TN as she is very symptomatic.  I had the surgery 10 years ago but my surgeon is located in Florida.
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620923_tn?1416285879
Hi and welcome to the Chiari forum.

What a great friend and co-worker u r to advocate finding her a chiari dr. we do have a list that is compiled of the members drs, it is not a referral list, just a means to help one get started in researching drs that have treated chiari.

Please note, ur friend my need to travel to get to a dr as we all do not have one close by.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1293483

Please let us know if there is nething else we can do and I hope u encourage ur co-worker to join us for the support, even tho I know she has it in u, it may be good to hear what others r going thru at the same time.

As for urself, may I ask how u r doing 10 yrs post op?

Glad to have u join us here, but not happy for the reasons u had to seek us out.

"selma"
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As Selma said, it may require her to travel to see a good dr who actually knows something about chiari. If she's unlucky like me, stuck with a dumb HMO that won't let you go out of network, then she might have a battle ahead of her. If that's the case, she should contact her insurance carrier right away and inform them of her diagnosis, that it's difficult to find a dr who specializes in chiari, and ask them to help her. They usually won't be able to do much, but it allows the insurance co to have a record of what's going on, so if her med group can't get her into someone qualified, they know the time-frame, etc. I'd recommend contacting the med group to ask for a case manager as well. They will usually be able to help advocate for you within the med group to get the care you need.

I've been waiting 3 months now since I was diagnosed with chiari + optic nerve swelling from intracranial pressure to see a NEurosurgeon. It took a 2 month battle to get referred and approved to see a dr I think is qualified. I'm going in a month to UCSF. Unfortunately, specialists can often have bad waits to get in and be seen.
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Thanks for the referral list ... I printed the list and will give it to my co-worker when she gets to the office this a.m.  

Almost 10 years post-op and I am doing great.  I am mostly asymptomatic but do have an occasional headache if I cough or strain but it goes away quickly.  Also, I tend to have the hiccups a lot!!  I am extremely hyperreflexive including my gag reflex!  Other than that, my outcome and life since the surgery have been absolutely miraculous.  I had a great neurosurgeon in Fort Walton Beach, FL.  I was ready to travel ANYWHERE to have the surgery but was blessed with Dr. Robert Feldman, who trained in New York.  He is phenomenal and I would recommend him to anyone.  I will try to track down his address,
phone number, etc. to post here.  

Did you have the surgery?  What was your outcome?  How long ago if you had the surgery?
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620923_tn?1416285879
HI


We would appreciate that add on to our thread of drs ....

Yes I had my surgery in May of '09...I am still recovering as I do have a few other issues to tend to....slowly getting better. I was just put on Topamax and doing much better.

I also have EDS and tethered cord, and a bulging disk.....both of which cause pain...I know I had a successful surgery...it is the little things that mean a lot, like knowing what month it  is .....

If u click on my name(blue is a hyperlink) it will take u to my profile page and  on the left side is my journal and I have all the info on my surgery.

I am amazed that u found a dr that knew chiari 10 yrs ago, since sooooooo many of us r having issues finding them now....u were very lucky or fortunate...maybe both to be near that dr.....so glad to hear  10 yrs of feeling so well.....awsome!!

"selma"
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Dr. Carl Hampf is in Nashville and is a wonderful NS. He did my surgery Dec.'08 and I have done great!!!
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