In the last six months, my eight year old's symptoms have returned. She is having headaches, leg pain, memory issues, and numbness in her hands. Unfortunately, her doctor at UCLA (Dr. Lazareff) retired and we can't seem to find a pediatric neurosurgeon in CA that has experience with Chiari. I called The Chiari Institute in NY last week. Does anyone have experience with this facility?
I read on here where there is a Dr. Trumble who practices in my state Florida. I have read and saw others posts that he is the doctor to see with Kids. He is on this group. I saw older posts where he had answered parents with struggling kids. Thinking of you and prayers. I looked him up on the internet and he has a lot of good recommendations. My heart hurts for you and your daughter. Prayers.
I would highly recommend Dr. David Frim at University of Chicago. There is a Ronald McDonald house that is right there by the hospital we always stay in.
Dr. Gerald Grant is a neurosurgeon who used to be at Duke Children's Hospital in NC but he is now located at Stanford/ Lucile Packard Children's Hospital. He is the chief peds neurosugeron at Stanford. He is an incredibly knowledgeable about Chiari & Syringomyelia along with Ehlers-Danlos/POTS. He was a founding member of the Chiari & Syringomyelia Foundation NC chapter. I personally know 2 of his chiari patients, 1 brain tumor patient & 1 tethered spinal cord patient. (He operated on my 9 year old son to release his tethered spinal cord.) He is the kindest, most sincere doctor & I am so incredibly thankful he was here when my son needed surgery!! The phone # is (650) ■■■■■■■■.
http://www.stanfordchildrens.org/en/doctor/default?id=gerald-arthur...
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I have no experience with them, but have heard great reviews of them. If you search Chiari Institute under the "General Discussions" tab, you will find a great deal more about their facility and experiences with them! Hope this helps! XOXO