Hi Ted

It's great news Rebecca will be seeing Dr Steinberg shortly. Sorry I can't help with her mother.

Mark (Luca's Dad)

Hi Ted:
My Daughter in law alerted me to your posting about finding a peer for Rebecca's mother to talk with about her concerns for her daughter going out to California to see Dr. Steinberg.
My youngest son just had surgery out at Stanford on April 8th, and he's doing great. I can't say enough wonderful things about everyone out there at Stanford. I was very apprehensive too about our son being so far away for such a major surgery. We live on the east coast. The people at Stanford were wonderful, kind, and caring. I don't think we could have been in better hands.
Tell Rebecca's mother not to worry, her daughter will be with people who genuinely care, and are committed to her recovery and well being. Dr. Steinberg, his staff, everyone was just wonderful. I would encourage everyone who is diagnosed with MM to make the trip to Stanford and see Dr. Steinberg.
Our son showed signs of recovery within hours after surgery. Our daughter in law called a few hours after surgery to tell us our son was talking, moving around, and joking with the ICU nurses a few hours after surgery. The following morning, he was well enough to be moved to a regular room, and was up walking completely on his own, and walking down the hall. I had to hustle a little to keep up with him. He was discharged from the hospital within a few days. It was wonderful.
My prayers are with you and Rebecca as you head out to California. My wish for you is that you recover as quickly as our son has, and that you are back with your family, safe and sound, and healthy again.

No. My son was in his 30's before he had any symptoms.

ted,

I don't know if my mother can help, but I was 16 when I was diagnosed and just had my last suregery 2 months again at the age of 22. I know for a fact that if you wanted to get your mother-in-law in touch with her, my mother would be more than glad to help.

21widmoya,

You are not alone!! Send me an e-mail at moyamoyagrl@yahoo.com if you want to chat. Moyamoya affects the young the old and the in between. You are most defintiely not alone in this.