SOS Dr/ surgeon needed for Chiari

[MummyGB]

Hello all, pleased to meet you.  Looking for a dr for Chiari in Oklahoma or N. Texas

My situation derives from Vitamin D deficient Rickets.  This also has caused a pheochromocytoma.= Benign but dangerous adrenal tumor.  I read here that most have horrible pain.  I'm so sorry, it sounds awful.  Does anyone not feel any pain at all.  I feel no pain unless under stress or extreme trauma.  i.e. broken leg.  But, this pain only lasts for an hour and then there is 0 sensation in the break ever.  I have no idea if i ever get a headache but, a migraine will give me floating in the eyes, nausea and pressure.  Trying to figure out if this is due to my Chiari  or CSF pinching my spinal nerves or the fact that I don't have any Norepinepherine (a neurotransmitter)   due to the Pheo.  No dr has figured this phenomenon out yet. any guesses?  

[selmaS]

Hi and welcome to the Chiari forum MummyGB,

For some with Chiari that also have a syrinx it is possible to not have the same pain or type of pain as a typical Chiari headache as the nerves affected by the syrinx can make the pain feel as if it is coming from a different area/place.....it can also cause one to not feel anything including extreme heat or cold which can be dangerous....
Make sure you are checked for Syringomyelia, a syrinx that can form anywhere in the spine....so a cervical , thoracic and lumbar spine MRI should be done as well as a CINE MRI to see if you have an obstruction to CSF flow.

Below are lists of Drs other members here have used...it is not meant to be a referral nor an endorsement of those listed....only a tool to help you get started researching Drs..... you want a true Chiari specialist.


TEXAS

Dr. Jeremy Denning
Dr. Richard Jackson
Dallas Neurosurgical and Spine Associates
Presbyterian Hospital of Dallas,
Professional Building III,
Suite 220,
8230 Walnut Hill Lane,
Dallas, Texas 75231
Phone: [phone]

Victor Kareh, MD
Neurosurgery, Spine Surgery
21216 Northwest Freeway
Suite 230
Cypress, TX 77429
281-640-2121

Gulf Coast Brain & Spine Institue
Dr. Peter J. Yeh, MD, FACS
Board Certified Neurological Surgeon
6565 West Loop South, Ste. 450
Houston, TX  77401
713.661.8900
713.661.5535 fax

Dr. David Jimenez
UT San Antonio Health Sciences Center
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
210-567-5625 • FAX [phone]
Adults and Pediatrics
San Antonio , TX 78229-3900

Dr Dong H. Kim
Mischner Neuroscience Associates
6400 Fannin Suite 2800
Huston, TX
713-704-7100

Dr. Rob Parrish
Methodist Hospital
Huston, TX


OKLAHOMA

Dr. Caple  A. Spence
8121 National Ave Suite 219
Midwest City, OK


I am not sure if they are in the area you specified...but many f us do have to travel to get to a Dr that not only knows Chiari but is well experienced.