My neice of 17 years old was diagnosed with this horrible disease a few months ago and recently had her surgery (6/27/07) on both sides of her brain. She has not been able to wake up after surgery and has had a couple of strokes after. She has now started having convoulsions and I was wondering if anyone has any information on who I can go to, maybe a specialist as it seems that the Dr. that performed the surgery has not come up with any information. This was his first surgery and seems to be totaly confused as to why and is not coming to us with any hope. I would appreciate any and all information that can be given to our family as we are VERY desperate to get her back.

Waiting on your response
Rosanna

7/2/07
My niece has woken but not completely she looks at us, but will close her eyes almost imediatley after  opening. They placed a feeding tube into her on Saturday and made some what of a noise. When asked to move her left side she can, her right side is a different story. And the Dr. still has not come to us with anything. I thank you all for responding to me with the information provided as my sister-in-law will be following up hopefully with the Dr. in Phoenix. I would still like any new information that anyone might have.

Waiting
Rosanna

Rosanna,

I'm very sorry to hear about your niece.  May I ask who your surgeon was (or at least at what hospital)?  I noticed you are in AZ and Dr. Speltzer is a neurosurgeon in Phoenix who is supposed to be very familiar with MoyaMoya.  You can contact Dr. Steinberg in CA and have your current surgeon consult with him (should be free -- Dr. Steinberg consults with doctors all over).  (I believe Dr. Scott does this as well, and seeing as your niece is young, it may be appropriate to consult him as well). 

The fact that your niece has not woken up scares me and that her care is being handled by someone who never handled a moyamoya case before this. 

Please contact the three surgeons -- I think they will be of great help to you.  You can get their information from the internet - just search on the following info.

Dr. Gary Steinberg - Stanford Medical Center
Dr. R. Michael Scott - Children's Hospital Of Boston
Dr. Robert F. Speltzer - St. Joseph's Hospital Phoenix

Please keep us posted.  My thoughts are with you and your family, esp. your niece. 

Hugs,
Trina

I so sorry to hear about your neice. I was dx at the University of Iowa Hospitals. After I had surgery I seen a Dr.Adams Jr. who is a neurologist that is world known for strokes. You can find him on the internet and check him out. You and your famliy are in my prayers. God Bless Sharon