kitty,
Please don't wait around for theses doctor's "wait and heal". this is very dangerous for Moyamoya(MM). Please get a second opinion with an expert in MM like Doc. Steinberg's team or someone listed in the surgeons with bypass experience tab on this site. Surgery is one of the only options we have.

I has a stroke before I was diagnosed and they put me on blood thinners and wondered why my condition was deteriorating. Then they did an angiogram and said this kind-of looks like MM but I can have it because I am not Asian. Well I looked up MM and then got a second opinion. Today is my six year anniversary of my successful surgery. I am here today because I got a second opinion from an expert in MM.

I will pray for your brother in law.

Don't wait for the second opinion.
Stay strong,
Becky
PS. Knowledge is power

I'm sorry to hear about your bro in law but as Becky said, don't wait and see. My son's neurologist told our family that he will be ok with ASIPRIN and doesn't need a surgery. When I got 2nd opinion from Dr. Scott in Boston and Dr. Steinberg in CA (which they both are the expert in moyamoya) they agree that my son needs a surgery ASAP! Please get a 2nd opinion from the MMD expert! My thoughts and prayer are with you. Take care.

Best,

Kim family

Thanks to all who have responded to badkitty.  I am another sister of hers, and we are both desperately searching for information to help our other sis & her husband.  This is so new for our whole family, not to mention extremely sudden.  Any info you can provide will be most helpful.  We'll keep you posted, and thank you again for your time, concern & information.

Thanks again guys.  It is such a blessing to have this resource online.  It turns out that the specialist at UT Southwestern also happened to be a friend of a friend of my brother in law's.  He has looked at the case and said that for now, his doc's are doing exactly as they should.  They basically need to get him past this and he is way too critical for surgery.  Dr. Duke said he will be keeping in communication with the dr's at Plano and will step in as needed. 

They brought him out of sedation briefly today, but he didn't respond well to commands.  He opened his eyes very briefly and squeezed his hand about 30 secs after they asked him to. They put him back under and will try again next week.  He is sedated w/ Propofol, so it is easy to bring him back and put him under as needed.  They are keeping him sedated, because he has almost injured himself when not and because they are trying to keep him as quiet as possible.

On a positive note, they were ripping tape off his right arm (affected side) while he was sedated and he jerked his arm and grimaced in pain, so we are hopeful there.  They are also going to try and see if he can breathe on his own in the next few days.  If not, he will be getting a trach tube.

I've been reading that bypass surgery cannot be done emergently, so I'm hoping we get him past this we no more strokes where we can schedule the bypass.

Again, thanks so much for any info you can give.  My sis, mudbug70 and I will be around!

I am so sorry to hear about your situation... I was in your position a year ago, desperately seeking answers, so I know what you are going through and your family will be in my thoughts and prayers. I wanted to share a bit of hope with you, Last October, the night before Halloween my father suffered a large hemorrhagic stroke on the left side of his brain. After much diagnostic work, the doctors said that he had "moyamoya vessles" and but not moyamoya disease. One of these vessels ruptured which caused his stroke... anyway after a week in the hospital my dad was sent home to recover and was told not to do anything strenuous, ever... and he should be okay, they would monitor him... anyway this didn't sit well with us so we began our research and sent his scans to Dr. Steinberg who diagnosed him with unilateral MM and wanted him to come out to CA for surgery, insurance denied the request so we had to find someone in our state who could perform the surgery... he then met with Dr. Arthur Day who confirmed the dx of MM, but could not do the surgery because he was leaving the hospital in Boston the next day to pursue a new position out of state... lucky us huh?! Anyway long story short, we ended up seeing Dr. Christopher Ogilvy (a brilliant neuro surgeon in Boston with MM experience) who saved my dads life!! My dad had his bypass 1 month ago today and is doing AMAZING!! He says its like he has a new life, most of his symptoms are gone and he says its the best he has felt in years...he is already back to boating, yard work and playing golf, a true miracle after all that we went through over the past year!! We know we will have to live with MM for the rest of his life, and that is scary, but the surgery truly was life saving, and life changing!! SO.... the point of my story is don't give up!! There is hope, there are good stories out there. A lot of what you will read is very scary, but just keep yourself educated and hopefully he will recover from this acute phase and then just work on finding him a surgeon and getting his strength back so that he can have the surgery. Without this Website my father wouldn't have had the surgery, and god only knows what his fate would have been. But there is hope, good luck to you and your family!! BTW, my dad was 55 when this all began.