need a neurosurgeon not UPMC in Pa to remove plate in 16 yr old.

[JeannieBrackett]

My daughter was diagnosed with Chiari back in 2012 , the doctor said he tested her for EDS and put in the titanium mesh plate.  a few months went by and all seemed well, so she took my grand daughter in to see this guy because she had symptoms, she was about 14 at the time.  Doc said yep, Chiari, needs surgery just say when. He did not test her for EDS , and his specialty was adult Neuro, not children. But they went forward with the surgery.  My grand daughter came out of the surgery with autonomic dysfunction and nearly died more than once from dehydration before they figured out what was wrong.  Months of therapy  go by. with little improvement, skyrocketing and plunging blood pressure, fatigue, hip pain etc. Her headaches are horrible. she misses a  lot of school, her shuffle is back her vision is poor , she has lost an inch in height as well.   She is only 16 and her quality of life could be so much better.  If you know of a neuro in Pa, (because of insurance)  who will at least look at her, we would be forever grateful.  NO UPMC DOCS PLEASE.  

[selmaS]

  Hi the member you are replying to may not be a current member, you can attempt to send a PM ( private message) which will initiate an e-mail to be sent so they know someone is trying to communicate.

[btlist]

JeannieBrackett - can you tell me what dr. you saw in Pgh? I am trying to track down a good dr. and would like to eliminate the bad ones. Judging from the list above I think I'm going to have to travel outside the state :(. I have an appointment with a general neurologist here but it's not until Sept

[selmaS]

  Here is the PA list Dr Bejjani is the Dr I was thinking of in Pittsburgh.....and there is a listing for Hershey, but I am not familiar at all with this name or Dr.

Do research all Drs you want to use and visit a few to see which one is right for you.
Keep in mind this list is not a referral nor an endorsement for those listed on it.

PENNSYLVANNIA

Dr. Bejani
Pittsburg, PA

Dr Gardner
UPMC Presbyterian Hospital
Pittsburgh PA

Dr. Alfred Bowles Jr. MD, FICS
Director of the John P. Murtha Neuroscience and Pain Institute
Johnstown, PA

Dr. Donald O'Rourke
Hospital of the University of Pennsylvania
Philadelphia, PA

Dr. Mark Iantosca
Penn State Hershey Medical Center NEU
30 Hope Dr Suite 13
Hershey, PA 17033
[phone] (Office)

[JeannieBrackett]

Thank you for the list.. I will see which ones are NOT connected with UPMC.and go from there.

[selmaS]

  Hi....I know of one Dr in PA...Western Pa and  not sure if her checks for EDS either and places a mesh plate as well.....because of Drs not really being well informed or experienced in PA I went out of state.

In the last few years I have heard some talk about a Dr at Hershey....but I was never given a name. But I am sure it was a peds Dr.

[JeannieBrackett]

Can you tell me her name and where she practices please?   I'll research the Hershey area and see if I can get a name,  thank you so much.