That's great that your daughter is feeling so well after surgery. I think that's exactly what you can expect for her a normal life without much restriction.(except the hydration and hyperventilation percautions) I think you can expect a very normal life for your daughter. I think the strokes are what really change the lives of most moyamoya patients. My daughter had several strokes and the only issues we have are the complications that these caused. She has had no more problems with the moyamoya, and she's 11 years post surgery. Her blood flow is very good. Kids recover so quickly it seems. Will the Dr.s keep an eye on the other side for MM? If you have any other specific questions please feel free to ask away. I hope your daughter continues to recover without complications.
Mary Grace

My daughter never had a stroke.  We found hers because of headaches.  She had surgery on one side almost 5 years ago.  She continued doing all the things she had done before surgery...band (played clarinet), rollercoasters, riding horses (hunter/jumper).  If she felt she was getting to her limit she would stop.  The hardest thing for her was to stay hydrated.  she wasn't in the habit of drinking a lot of water.  After 5 years she's finally getting better.  She now has it on the left side so another surgery is in her future...hopefully before a stroke.

My son had surgery 5 years ago and he never had any strokes either. He is now 10 and enjoys cross country running, swim team, dive team, canoeing, rock climbing, bike riding, roller coasters and playing in the surf at the ocean.
We did stop the Karate lessons when they started sparring.

Your lives can return to "remarkably normal" after the initial worry and panic.

Am I the only one who does have problems?
My energy levels are low. I can't work over 20 hours a week or I'll just collapse.
I still get tired way more quickly than other people. If I had a busy day I'm in bed by 9.30
Note, I am 29 now and it is frustrating not to be able to maintain a normal job.
The worst part is people don't seem to understand that I can not do what others can. For me MM also effected my speech and when I am tired I can no longer articulate well.


Staying hydrated is still a problem for me at some days. I simply forget to drink. Does anyone have any tips for me on this. I know I need to drink more than I do.

Thank you, although it is not a pleasant matter. it is comforting to know I am not the only one.
It's like you say, others can not understand how exhausted I get.
Tired simply doesn't cover the load. I have a coach who gives me some counseling me in my current job and I tell  her I won't be able to work 4 5-hour shifts a week in stead of 3 6,5 hour shifts. The difference is not only the rest I miss because there is an extra day, also  I get a 15 minute break in a 5 hour shift in stead of 45 minutes in my 6,5 hour shift. She thinks I  just have to get used to the whole thing. There is no getting  used to, I get tired and then exhausted, I need time to recover. She says she has seen it happening with other clients. I am not other clients, None of her clients have MM besides me. It seems like other people always seem to know better than us what seems to be going on in our minds and bodies. They don't know what it feels like but pretend they do because they know this or that person who has a similar thing going on and is doing just fine.
Sorry for my rant but I get so sick of explaining every time to everybody why I can't do all the things I want.
It is so nice to know that you understand me Mary Grace.

Moyamomma, So sorry for the diagnosis but I'm glad you found this group. If you have any questions post them up and I'm sure someone can answer them. It's so much to digest. Has your daughter had any strokes so far? It sounds like the Dr.s are moving quickly which is great. Waiting can be unbearable. My daughter had a couple strokes so surgery was delayed while she healed but she kept having them so surgery had to be done under not the best of circumstances. She had several strokes. Her complications after surgery are mostly because of the strokes. As far as the moyamoya she has not ahd any strokes or TIA's since the surgery. Recovery from the surgery went well. Recovery from the strokes is still a long haul 11 years later. Kids are so much stronger than you think. They really seem to recover well and quickly. Stay strong and you will make it through together. I know she's little but age is on her side for a complete recovery. When our daughter was diagnosed it was all we could think about 24 hours a day. We didn't have this group to ask questions and we felt very alone. I hope this group is helpful to you and your family. My daughter was not quite 5 years old and also has Down syndrome which made her slightly more likely to have moyamoya. I hope all is going well. I will certainly keep you and your daughter in my prayers. Keep us posted. If you would like to email feel free
Mary Grace
mgrace5@nycap.rr.com