My son had 2 mild strokes before being diagnosed with MM.  He then about 6-8 TIA episodes.  He had surgery at Boston on 1/12/12.  He is recovering well from the surgery, but I can't seem to find the help he needs now.  His personality is different -- irritable, anxious, easily frustrated, and excessive crying.  He gets very upset if he has to read or write.  Smells and noises drive him crazy.   I read that after pediatric strokes you should get a neuropsych eval. to help with some possible learning and emotional problems.  We saw a new neurologist who supposedly knows about MM and strokes, but he was saying this stuff is unrelated and maybe OCD or Asberger's.  I am not sure what to do now.  Are these side effects of a stroke or MM?  Who can I get to listen about the emotional state of my son, and the problems he has now with reading, comprehension, language, sensory, etc.?  People see him and say he seems fine, but we have seen such a big decline from who our son used to be.  I don't know how to help him now. Any suggestions?

Personally I would insist on a neuro-psych evaluation.  We didn't have one done until about a year after my daughters surgery and she did have some cognitive issues.  they have improved but for a while she struggled.  Short term memory was a problem,  she would struggle to think of words when she talked and she would have to ask teachers and friends to repeat things a lot.  It cna't hurt to have it done and hopefully your insurance will cover it.

Hi!  Your son has had his surgery very recently. Dr. Scott and Dr. Smith perform the pial synangiosis type of in-direct surgery where they lay arteries on the surface of the brain and let them grow.  In-direct surgery works very well for children because they are still growing rapidly but the in-direct surgery takes time to start supplying extra blood flow to the brain.

Remember, your son had strokes because the arteries that supplied blood (and oxygen) to the brain were narrowing and could not provide ample supply.  Those arteries are still narrowed... even after the surgery and the new network of arteries hasn't had the time to grow just yet.  His brain is like an ankle that has been severely sprained or a bone that has been broken.  It takes time to heal.  Just because he's had surgery to repair the fracture, the bone still requires time to heal.

After reading stories on this site for the last 9 years, I can assure you that your son will get better.  Every day those arteries grow a little bit more and within a couple of months I'm confident you will start to see vast improvement in all aspects of his recovery.

Hang in there!  We will keep you and your family in our thoughts and prayers!

DJ

HI, SP, it really depends on what areas the strokes were in your son's brain. I was recently dianosed a few months back (I'm in my 40s) and reading the reports, there are several regions in my brain that have been hit by a stroke, including the thalmus (emotions). Family have said that I have appeared to loose ut a lot easier over the last year or so. So, it might be because of the area of the stroke.

My son had his stroke (one and only) at 18 months old....He had surgery with Dr. Scott and Dr. Smith at2 years old. He is now 3 1/2 and we still see emotional/behavior issues which our neurologist tell us is due to the area of his brain that loss blood supply during the stroke.  While we are hopeful these traits will lessen over time, we also understand that this happens often when people have strokes! As our son gets older we hope to provide him with skills to cope with his emotions. Hugs to you, I know how difficult it can be!

Hello.  My son had surgery with Dr. Scott when he was three.  He had previously had a few small strokes and one more substantial one  He is now 4 and a half and doing great, just some left hand weakness.  BUT, for quite a while following the surgery, he would have major fits, get very angry, cry excessively, etc.  I was told that it took a very long time for the impact of the surgery (medication, anesthesia) to wear off and that he could be irritable and have emotional issues in the interim.  Also, it takes about a year for the new vessels to develop, which may be causing some of the issues as well.
I wish the best for your son and I am confident that his temperament will improve over time.  Having said that, we are going to have a neuro-psych evaluation for our son before he starts school to make sure any cognitive issues are addressed. 
Best of luck to you.

Thank you everyone for the comments to my question.  Sometimes I start to think that I am crazy and over-analyzing everything.  But then other days I can see how frustrated my son is with himself and I want to know how to help him.  I talk to doctors or therapists and they don't even know what Moyamoya is so it can make you feel like you are just going nuts after awhile!

Hi, I havent had an operation yet, but I can honestly say that since I had a stroke, my personality has changed. I was always emotional, lbut that has become worse. I cry for the tiniest bit. Happy or sad, doesn't matter. Tears come. I also get frustrated very fast when things don't go my way and I was depressed for a while (even before I was diagnosed MM) so yes, a stroke has it's effects. The abbiltity to learn things or remember them, that got a little better after some training. SO glad I did that! But like DJ said, your son his brain needs time to heal and I don't know how old he is, but if he is the age that he gets what happened to him...he needs time to process and accept his life has changed. Best wishes.