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.
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.
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.
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.
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?
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!!
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