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Old 11-11-2009, 10:06 PM
brainiac brainiac is offline
Junior Member
 
Join Date: Sep 2009
Location: Illinois
Posts: 28
10 yr Member
brainiac brainiac is offline
Junior Member
 
Join Date: Sep 2009
Location: Illinois
Posts: 28
10 yr Member
Laugh Gabbys Princess

Quote:
Originally Posted by gabbycakes View Post
Hi All,

I am from the RSD family but I am posting here today because my 15 daughter was diagnosed today with Chiari Malformation. We are at the beginning of this journey.

She will be seeing a Peds. neuro. doctor who specializes in all headache and spine issues at NY Pres. Cornell on the 24th, I am also going to try and get her into the The Chirari Institute in Great Neck, Long Island, NY, they are suppose to be the best. .

I would greatly appreciate any input, suggestions, good or bad.

If anyone has info. on any doctors again good or bad please inform me. I want my daughter to get the best possible care.

My daughter is a great child and it is killing myself and my husband that she has to go through this so please any input at all would help.

Thank you,

Gabbycakes
Being on my fourth surgery, please,please do your homework and make them explain anything to you that you don't understand, because the doctors will rush you out of their office and your poor daughter will still be in pain. Make sure you keep copies of her MRI's before and after with Gadolinium, it will help the doctors find the problems in the nerves. Get 2nd and third opinions before any surgery and inquire about shunts just in case, I dont know the severity of her chiari but I'm assuming it's a Chiari I Malf. and there is probably a Syrinx involved,that causes pressure on the nerves as well as it could cause some damage if not corrected early enough. Some good news though is that you caught it while she was young, and the results are usually good for kids, for example my first surgery in 2002 my Goddaughter had the same surgery she recovered in 3 weeks totally and I was barely moving after one Month, Please let me know if this helped and I hope the best for you and your family.
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