Need Pediatric Chiari Expert in Texas/Louisiana

[Twingirls1]

I feel like a mother who is out for battle.  My 2 year old daughter was diagnosed with a 9mm Chiari, no CSF flow posterior to tonsils and nystagmus about 3 months ago.  This all came from me demanding an MRI due to her dizziness, headaches, balance issues, feeding issues and eyes crossing at times.  I have seen two pedi neuro doctors in Houston.  One I just couldn’t communicate with and one (who happens to be the chief neurosurgeon at TCH) who seems to know nothing about Chiari.  She has headaches, vertigo, issues swallowing solid food and sensitivity to light at least 20/30 days.  I have documentation on each and every day and even videos - which I showed the doctor.  In addition, she has had a cough for 4 months.  The doctor at TCH said ... those symptoms really aren't Chiari related.  Let's see her again in 4 months.  Then what could it be???

So should I sit here and watch her suffer from headaches until she can actually "verbalize" she has a headache ... which will be years from now?  She is a twin and she is so developmentally behind her twin.  A normal toddler does not want to "go lay down (in a dark room)" after playing for 10 minutes, squint and rub her eyes and cry for hours every other day.  I can only imagine her symptoms are headache-related.

I need your help:

1.  Any recommendations on a Pediatric Chiari Doctor?  I live in Houston but willing to travel ANYWHERE to get a second opinion.
2.  If she does not have surgery, could her symptoms get worse?
3.  Is it possible for her to develop a syrinx later?

Thank you in advance!!!!!!

[melephant]

I would definitely recommend Peter Yeh!!!  He is not a pediatric neurosurgeon BUT the last time I was there his assistant was talking about a kindergartner that he did the decompression surgery on because she had severe blockage.  He really knows what he is talking about and if your CINE mri shows any significant blockage he will give it to you straight.  I don 't think he would let you walk out without a solution, especially if your daughter is in OBVIOUS pain.  After some crap neurologists in the Houston area I almost wanted to give up, so I went straight for a neurosurgeon and now I can honestly say that when I do have my surgery, I trust Peter Yeh with my skull + brain 110%. (:

Was the one you saw at Texas Childrens?! the chiari specialist? I can't remember his name ... but my mom wants me to go see him.  I still should find a neurologist since I'm not having surgery yet.  

[selmaS]

Hi and welcome to the Chiari forum.

First let me say I am so sorry ur little one is having to deal with this condition...and to u for having to watch ur child suffer.

I copied a few drs names from our list...u have to do research...I have no idea if they r true chiari drs or r pediatric NS's which u will need.

The problem u r having with the drs u have gone to is that they r not chiari drs.

There r some very good pediatric drs out there...a Dr Frim in Chicago....but do research as I have not had ne personal experience nor do I know if he is still practicing.


Here r the names of drs in TX-

TEXAS

Dr.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. Kim
Dr. Chen
Misher Neuroscience Institute
6410 Fannin St
Houston TX 77030
713-704-7100


Will her  symptoms get worse- it is possible they may.....surgery is not a cure, but a means to slow progression.

Yes, she could develop a syrinx later if she has an injury to her back or has another CSF blockage...the surgery is to allow the flow of CSF and help avoid the syrinx from forming.

As to ur DD's cough- many with chiari have acid reflux/GERD...this could account for swallowing issues as well...until u know for sure there r things u can do to help her.
http://www.medhelp.org/health_pages/list?cid=236
Use the above link to read foods that r safe and foods to avoid...she may be ok with some on the avoid list and vice versa....so do keep a journal.

Also, elevate the head of her bed to help keep the acids down....do not let her have dairy products late in the day as it can slow the LES  and allow the acids up into her throat.

Keep pushing for answers
"selma"