Hi there,

after 3 years of fighting with insurance companies and Medicare we're finally booked in to get my fiancee Rebecca a proper evaluation with Dr Steinberg!

I need a little help from the MM community here though.  Rebecca's mother is on the other side of the country and is frantic with worry.  We've tied to get her to get involved with the group here but she's disabled herself and hasn't been able to get around the message boards all that well.  I'd love to know if there is a peer out there she could email directly, a mother who has had an adult child go through this process and come out the other side.

If there's anyone out there willing to strike up a correspondence with her, please let me know and I'll put the two of you in touch.

Thanks for such a wonderful resource,

Ted

PS.  looks like Rebecca and I will be at Stanford for the picnic at the end of this month so I look forward to meeting some of you then!

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)

ted wrote on May 8^th, 2009 at 3:02pm:

Hi there, after 3 years of fighting with insurance companies and Medicare we're finally booked in to get my fiancee Rebecca a proper evaluation with Dr Steinberg! I need a little help from the MM community here though.  Rebecca's mother is on the other side of the country and is frantic with worry.  We've tied to get her to get involved with the group here but she's disabled herself and hasn't been able to get around the message boards all that well.  I'd love to know if there is a peer out there she could email directly, a mother who has had an adult child go through this process and come out the other side. If there's anyone out there willing to strike up a correspondence with her, please let me know and I'll put the two of you in touch. Thanks for such a wonderful resource, Ted PS.  looks like Rebecca and I will be at Stanford for the picnic at the end of this month so I look forward to meeting some of you then!

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.  

may i ask was your son young as i am 21 and have been ill since i was 9 ended up in wheel chir for three years was told i would not livee past 1o and just found out i have moya moya after giving birth to my first son myself! so was just wondering if any 1 hass ever been through this at my age or only young children? i am very scared! plz help explain!....... :'(

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

Ted,
My Mom would love to chat with Rebecca's Mom. If you email me her infromation to beckychelberg@yahoo.com, I will see that my mom gets it. I was 22 when I had my stroke and it took almost a year for them to deside that I had MM. I had a bad neurologest but not amymore. I see that Rebecca is seeing Dr.Stineberg, he is the best doctor for MM in the USA. I hope all is well with you.
Becky

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.