Boston has two doctors that are expert at Moya Moya: Dr Richard Scott and Dr Christopher Ogilvy.Dr Scott is at Brigham and Children's Hospital and Ogilvy is at Mass General, at least they were a few years ago.

Hey JNL

I'm terribly sorry to hear about your father, but I'm glad you found us.

Luca's first doctor was also bleating on about head injury causing the stroke until we consulted with a neurologist familiar with moyamoya. From your limited explanation, my non-medical response would be that it sounds just like moyamoya. Obviously you shouldn't take me by my word, but seek out the advice of an expert; there are many listed at the link below, Dr Steinberg probably topping the list:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=surgeons_board

Your doctors are right in saying that there is a waiting period after stroke before they can do anything; there is no blueprint for the timeline with these things. The chances are, if it's moyamoya, he will have another stroke because as we know this disease is progressive, but when is anybodies guess; it could be next week or next year, or never. The important thing is to do what you can as quickly as possible; that's all you can do.

You say your father is only scheduled for an MRI on the 15th, but they must have done some form of scan to come to the conclusion that there's a blocked artery and collateral vessels. Request copies of these images on disk and courier them ASAP to the moyamoya expert of your choice. Or send copies to a few experts, most of them are happy to give free opinions.

Every case is unique. Of course your father is fatigued easily, a stroke is a very traumatic experience on the body and brain, he needs rest. There is no way of saying how long to recover but luckily, by the sound of it, he's not too badly affected.

Unfortunately Luca is too young to tell us about symptoms, but reading posts on here I would say the most common are TIA's, headache, fatigue, numbness and, of course, stroke. TIA's, as I understand them, are mini strokes but without the lasting effects.

Luca's strokes were also caused by a hemorrhage and her surgery is considered a success and her blockage has been bypassed, but moyamoya is something that you live with for the rest of your life, getting checked periodically to make sure the blood is still flowing. Recovery from the hemorrhage is very likely, it's recovery from the stroke damage caused by the hemorrhage that can be lengthy. But again, every case is unique. For Luca, the hemorrhages caused strokes which affected her eyesight and the strength in her limbs. Now, a year later, she's recovered a lot of her sight, her arms are quite strong again but her legs are still very weak and it will take awhile for her to learn to walk.

I hope you manage to extract some useful information from my waffle above, all of which is just my opinion. Get an experts opinion as soon as possible.

Stay strong and keep us posted
Mark (Luca's Dad)

      Thank you, thank you for your replies! Your stories ,are so inspirational for anyone who is suffering, or has a family member suffering from MM.
      To Luca's Dad.... as a mother of a one year old, I cannot imagine going through this with my son, what a strong little girl you have! It is heart breaking that MM is so prevalent in children, but it looks like things are going great for you guys, you are so strong, I really admire that! Going through this with my dad has been really difficult...
      To KTiller.... congratulations on your marathon!! That is wonderful to hear My dad is a VERY active man... and hearing stories of people continuing exercise and physical activity, such as walking a marathon 2 years after STA-MCA bypass will be very comforting to him!!
      We are actively starting the process of pursuing second opinions from MM specialists. The neurologist we are working with is leading toward MM as a dx.... so my mom is already making the preparations to have everything sent to Dr. Steinberg, she got all his info from DJ (Thank you!). She has also been in touch with Dr. Scott (we live about 20 mins out of Boston)... Dr. Scott replied to her within an hour and although he does not treat adults, he did recommend a colleague of his at Brigham and Woman's in Boston, Dr. Arthur Day... Does anyone have an info/experience with him?? 
       So... we are on our way... Dad is getting stronger and stronger every day. Its been two weeks since his hemorrhage, and his speech is much improved... sometimes almost back to normal! He is home, and doing everyday things... he is still very fatigued and doesn't feel quite right, but compared to how he was even 1 week ago, its amazing! So... any more stories of hope  or advice would be wonderful inspiration for us/him. Thank you for this website... and all your feedback! Best wishes to all... you will all be in my thoughts & prayers!

J