Hi Kieu,

Welcome to our MM family!  I am sorry for the circumstances that brought you here, but you've definitely come to the right place!  There is a real feeling of community here and wonderful people who have all walked the same road in one way or another.

One of the most important things for you to do is to educate yourself to the best of your ability about this disease.  The second is to find a MM specialist - someone who sees it on a DAILY basis.  You will find many doctors who know the name "moyamoya", but just a handful of them have seen and treated it frequently.

There are at least two people on this site who live in your area.  Michelle and Shane (brother and sister) live in Fredericksburg, and both had surgery with one of the premier MM specialists, Dr. Steinberg at Stanford.  I am sure either one of them would be happy to share their knowledge and experience with you.   

Before I go further, it's my turn to introduce myself.  I am the mom of an 18 year old girl who was diagnosed in 5/04 and had her surgeries in 6/04, at the age of 17.  She had been diagnosed with migraines at age 6, and now in hindsight, we consider ourselves very lucky that she didn't have a major stroke prior to getting the "real" diagnosis.  Fortunately, we were referred to one of the few specialists I mentioned above.  Tara's surgeries were successful, and now you would never know she'd had surgery!

Aside from educating yourself, my suggestion is to send your test results to Dr. Steinberg.  He has performed several hundred MM surgeries, and is willing to offer an opinion free of charge.  I can recommend him without hesitation.  His expertise with this disease is unparalleled - you just can't get any better care.  In addition to that, he has a wonderful bedside manner.  People are coming to him from all over the country (and world).

Good luck to you as you sort this all out and decide how best to proceed.  Please don't hesitate to ask questions here!  Everyone is willing to offer advice based on their knowledge and personal experience, and you'll find a great deal of support as well.  Keep us posted . . . you will be added to my prayers.

Warmly,
Jill

Hi Moody,

I also wanted to welcome you to this wondeful site too.  ;  This "rare" disease is very unfortunate; however, you'll find much support and great information here.  I found this site after my emergency double bypass last May and don't know how I could've done it without the wonderful people I've met here.  DJ is such a blessing to us all!

You will be in our thoughts and prayers.  Please keep us posted on your progress.

Take care,
Shan