hi my name is erica and my sister in law just found out that she has moya moya. she is 43 yrs old.  i was hoping that someone  may have some info on a specialist in washington state?  we also know that this is basically a syndrome for children and is uncommon in adults. does anyone out there have this that is around the same age as becky? please let us know, it would be really helpful. thank you.

Hi  Erica    ,    my name is Tammy  and I am from WA  ST  ,   i had my surgeries at  HABORVIEW  MEDICAL  CENTER   ,   with  DR   Sekhar .  he saved my life  

Erica~

I realized I had mm after I stroked at age 49. It's not really just a 'kid' thing anymore.

Hope Becky is getting to Stanford or another doctor. Check the listing on this site for doctors in Washington.

I live in Northern Calif and had surgery at Stanford.
Hope to be able to attend the 'reunion' in Washington this summer.

Linda

well, i am so glad to hear that mm isnt uncommon in adults, because that gives us alot of  relief. i have read on alot of these messages that stanford seems to be a good place to go, but we just cant get that far away. im a 23yr. old stay at home mom with 2 kids and a husband whos going overseas very soon.  thank you tammy for telling me about your doc. we were getting worried that we wouldnt be able to find an experianced docter to help us. my 6 yr old daughter actually has NF1 and i was really suprised to learn that its common for people with moya moya to also have that syndrome as well.  does anyone have any words of advice to give me as i help my sister in law through this? it would be very helpful. thank you all.

Find a doctor who knows MM and find out if she needs the surgery. There is a page in this sight that is a collection of doctors who you could go to. You may have to dig to find one in your area. Be strong and suportive. This can seem scary but it is your life and your quality of life. Do not take chances go to some one who knows MM and have them be your fallow up of if s/he knowns of a nurologest you can fallow up with for check ups like a physical. Your friends and family are your strengh! I will pray for you and your family.
Becky

Hi,
This disease effects people of every age, race and sex. I'm 54 and have bi-lateral moyamoya. I live in Langley, Washington on Whidbey Island. I had revascularization sugeries on both my left and right sides last Fall at Stanford Medical Center. I had a consultation with Dr. David Newell at Swedish Hospital in Seattle last October. He has performed over 250 surgeries for moyamoya. I chose Dr. Steinberg at Stanford Medical Center for my surgeries for many reasons which I can share with you, but I also had the flexibility to do so.
All of us here on this site will answer any questions you might have. Please encourage your sister-in-law to not delay. This disease can do so much damage and it can happen so quickly and unexpectedly.
Kim Tiller

Hi ,

This is Connie. I am 39 and have bi-lateral moyamoya.  I live in Bellevue and have two little kids at age 4 and 8..I was diagnised with Moyamoya Disease at the end of last month by Dr. David Newell in Sweidish Neuroscience Institute.  I was told he had experience with Moyamoya Disease and he did more than 200 By-pass surgeries. But I am not sure what's his  success rate. I met him twice. He is a reasonable Doctor, calm and nice. willing to answer your questions. He also had some pulications about Moyamoya Disease.

I am waiting for my insurence's approval to have surgery in Stanford. If I can not get approval, I will have my surgery by Dr. David Newell this summer.