From reading other posts it does not appear to be the norm to do both sides in the same surgery.  Has anyone had this done?
My son was 1 year old when the doctor decided to do both sides.
Thank you

My son had his surgery in Boston with Dr. Scott and Dr. Smith. They did both sides at the same time as well. Malachi was 2 years old and was discharged from the hospital after 4 day.

Ted,
I am sorry for you loss.  I am sure the doctors did everything they could. They are correct in that it is very uncommon.  But I am shocked that they don't have an expination.

I am not a doctor but I would think they might have said that the surgery corrected the major blockage but then there were other areas that also had some issues. That they could not see the other areas well becuase the major area dwarfed the other ones.

I hope you find your answers.
Stay strong,
Becky

Ted,

Wow, I am so very sorry to hear your son passed after surgery! I am also sorry to hear nobody could give you a valid reason as to why your son suffered so many massive strokes following surgery.

My son was 11 last year when he had both sides done at Boston's Children's Hosptial. Both sides were not done at the same time, but they were  done during the same surgery. I was told if the neurosurgeons saw my son was having any type of problems while doing the one side of the brain, they would not have continued on to do the other side.

My son did suffer many strokes prior to being diagnosed with Moyamoya, and he also suffered a stroke the day after surgery. Thankfully he recovered. I was told there was a chance (don't remember the percentage) of him having a stroke during surgery and/or within the first month after surgery. I have yet to read or hear about a patient dying after surgery, aside from your son (not that it hasn't happened before) .

Again, I am so sorry for your loss

Karen

He had a synangiosis.  We were told the rate of stroke was between 4-10%.  We were also told that the eeg was normal throughout the whole surgery.  All they can tell me is that is must have happened within a few hours after surgery.  What I was told was blood vessels are fickle and there is no telling how they will respond when manipulated. 
My hospital has never had a death from this surgery, yet my son was their first.  From meetings with the doctors there have only been two other children that have died.
I was told from the start that it was extremely rare for Teddy at 10 months old to be presenting with an aggressive scan of MoyaMoya.  He stroked three times and would recover within a day, even after full paralysis. He took his first steps after his third major stroke, he started saying mama and dada.  The morning of his surgery he learned to turn on and off a light switch. I can remember being so proud of him.  My son, from what I was told was very rare when it came to Moyamoya.  His neurologists and surgeons all told me Teddy amazed them.  He was perfectly healthy, no signs or symptoms, no predisposing conditions, 10 months, etc.  I am sure you heard how rare it was for your son at 9 months to have it was as well.
How is your son doing?

I wish your son and your family the best of luck. Please keep us informed.

Dawn, may I ask how old your daughter was at the time of surgery?

Ted,

I should mention one more thing. I wanted them to "do both sides" as I had heard/read that MM progresses. They would not, saying that sometimes if the other side has not progressed enough (with blockage), the surgery won't be helpful.....meaning it has to be significantly compromised before they will do other side. (at least that was my understanding). My daughter had a blood transfusion during both surgeries too........and I believe another transfusion shortly after one of her surgeries. She also had a mild Factor IX coagulation disorder.
I have communicated with several others with mm and find symptomolgy and circumstances so different.....I don't really think there is a typical MM.
Dawn