8mm tonsillar ectopia; Radiologist says Chiari, Neurosurgeon says not, what now?

[katri200310]

My 14 year old daughter has been suffering from a wide range of symptoms for 3 years now.  I finally found a pediatrician to run more than just basic tests.  She has nausea every time she eats, her heart starts pounding, she gets shaky and weak, and the only thing that helps is to lie down; frequent headaches - some migraines, changes in position can cause headaches and exertion does too, fatigue that has progressed to her sleeping most of the day, she is having some trouble with balance - can't walk a straight line, she passed out in the shower in the morning - thought it was because she hadn't had breakfast yet but this was a first, She has started feeling weak and shaky with any exercise, having trouble concentrating (she is an A student), neck and shoulder tension/pain, skin is very sensitive to touch. I'm sure I left some things out but when her doctor said she thought it could be Chiari and I looked it up, I thought we might finally have an answer.  The radiologist report said she had chiari an 8mm tonsillar ectopia and the pediatrician called to tell us and refer us to a neurosurgeon.  We had our appointment today and the NS said she doesn't even have chiari.  I don't understand!  He said this as he showed me the mri and measured the distance of the tonsils in the spinal canal = 8mm.  I thought the criteria was 3-5mm. He said there is plenty of room there and no compression. He said we should get a more thorough workup by a pediatrician but not to rule out depression.  She isn't depressed yet, but being treated this way is driving us both to it.  Does anyone know of an expert in the Dallas / Fort Worth area?  I am so frustrated and tired of watching my daughter suffer. I don't want her to have surgery if she doesn't need it, but we need to know if she has chiari or not.  I'm not at all confident in what he told me today.  Any advice or information on specialists would be greatly appreciated.

[selmaS]

Hi and welcome to the Chiari forum.

It is very possible for the NS you went to , to not be well informed on Chiari and related conditions....I had a NS tell me I didn't have Chiari either.....mine according to him was a disk issue and I didn't need surgery...however, I had surgery with a different Dr and most of the severe symptoms I had are gone ...funny since I did not have my disks repaired.....
We do have a list of Drs but it is not a referral nor an endorsement of those listed...it is meant to be used to research the Drs....so educate yourself on Chiari and ALL related conditions....and this will help you know when you have found the right Dr for your daughter.

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

Do not hesitate to ask questions , we will do our best to help.