chiari malformation with Ehlers Danlos

[kekdahl]

I and my 9 year old daughter have Ehlers Danlos Syndrome. Question: can chiari malformation cause symptoms of MS? and How can I convince my daughters pediatricians to have her checked for this. She exhibits instant intense headaches, dizziness in hot showers, has postural orthostatic tachycardia, leg weakness..... etc. Any advice would be quite helpful
thank you
kekdahl

[youngwife]

Hi!  Well, we saw dozens of doctors that didn't properly diagnose my daughter, and it was agonizing each time we left with no answers.

However, once we saw a REAL Chiari specialist, it was no problem.  He knew what to look for, and found things that no one else even checked for.

So, I see that you are in Colorado.  Dr. Oro is a true Chiari specialist.  You can probably email him, and ask him to take a look at you and your daughter's films
.
Here is a link to his web site with contact info and lots of educational info...

http://www.chiaricare.com/Welcome.html

HTH! :-)

[kekdahl]

i have done research, and I agree however, our medical condition (in addition to) is rare and i can't get anyone to listen to me. How did you get your physician to take you seriously?  I feel like they just don't get it and the ones I did see/daughter saw didn't even have a familiarity with chiari.
kekdahl

[youngwife]

The symptoms that you have described sound very much like Chiari.  But, you may need to find a Chiari specialist.  Not all neurosurgeons are specialist.  I would highly recommend that you do a ton of research.

Here are a few sites to start at:
www.chiarione.org
www.conquerchiari.org
www.asap.org/forum
http://www.chiariinstitute.com/Videos/index.html (click on patient education and scroll down to find Chiari malformation)

My daughter's neurosurgeon is in North Carolina, yet we live in Mississippi.  It is well worth the drive to have her correctly diagnosed, and properly treated.

If I can help in any way, please let me know!
Rebecca