Our son, JJ, was diagnosed and had both of his bypass surgeries in late 2007.  Since then he has recovered well and his follow ups have all looked good.  He had an angiogram yesterday and the surgeon said something that got us worried.  He mentioned that the disease is progressive and that there are some blood vessels that his neurosurgeon might want to keep an eye on because they have started closing off.  This lead us to the topic of his prognosis.  He is now 9 years old and is doing well in school.  He never had any strokes or major issues.  We wanted to know, if the disease is progressive, what kind of life expectancy might he have.  He really kind of skated around the issue and said basically that no one could tell us that and that we just needed to enjoy the time we had!  I agree, we always try to live life to its fullest, but at the same time that kind of bothered me.  He made it sound like it could be any minute and we had been thinking that he would have some residual symptoms like the headaches and that it could reoccur, but we were not prepared to think that his time is as limited as it now seems.  Both my husband and I are feeling frustrated and like we didn't really get anywhere with our questions.  Does anyone else know more about the progression of the disease and the prognosis for young children with the disease after having both bypasses?

I would appreciate any input!

The disease is progressive.  The blood vessels that were affected will eventually completely close.  The blood vessels that grew after the surgery will basically take their place. 

However, the disease seems to pick the blood vessels it is going to affect, narrows them, and then stops.  I had visions of my son later having narrowing in an artery to his liver . . . or his big toe.  But the doctor that treated the narrowing in the artery to his kidney (making him doubly rare -- because it was NOT just the cerebral arteries) had seen other moyamoya patients and was the one to assure me of this.  That went a long way in making me feel better.

My son was 7 when he was diagnosed.  At the time, most of the Circle of Willis (a major blood vessel formation in the brain) was affected by the moyamoya.  The narrowing in the artery to the kidney was discovered at the same time.  He had the surgery for the brain a couple months later in Boston with Dr. Scott.  He had the surgery for the kidney a few days before his 9th birthday by Dr. James Stanley at the University of Michigan's Mott's Children's Hospital.  It was Dr. Stanley who gave me this information.  (He did, however, lose the kidney due to other complications -- a whole other story in itself -- that supports PARENT education and advocacy with doctors!!)

My son is now seventeen.  He is doing very well.  That fact that your son had no strokes is a wonderful thing!!  My son had three incredibly mild strokes.  You would not be able to tell if you met him today.  Dr. Scott says the prognosis is based on the condition of the brain at the time of surgery (well, actually, the time of follow-up when the vessels have had a chance to grow).  Everyone's healing is different due to the extent of the strokes, the age at stroke, and the differences between each person's body.  Because your son had NO strokes, his prognosis should be that much better.  He doesn't have that damage that needs to heal. 

While I am not a physician, I think it sounds like your son will be able to live a normal, happy life.  And my son too!

Kimber -- mom to Matthew, three strokes at the age of 7 and doubly rare with renal moyamoya -- though now only a single kidney, Laura, 22, Jacob, 14, and Kay, 10. 

My cardiologist believes that MM has something to do with the narrowing of my coronary arteries. I'm 45 and have 5 stents in my heart, even though I've been eating properly and exercising and all the good stuff. He doesn't, and apparently no one knows for sure if my issue is MM related.

I also worry, it has been 6 months since my second edas and still have no idea what the future holds, Has anyone had any ill effects post surgery?

I had my surgeries in 2000 and 2001, and suffered no ill effects. I actually haven't had a major migraine since my first surgery, and I used to have them a couple times a week pre-op.

I am 50 yrs old. I have had symptoms of MM since pre-school. Had stroke and bypass surgery at 40.  I think the significant point is that no one really knows our prognosis. This certainly was the hardest part for me for the last ten years. Unfortunately I have no wisdom to share that can make it easier.  However,  I am 50 with no significant disabilities. That's a good long time.
Russ

russan1959 wrote on Jan 9^th, 2010 at 9:32am:

I think the significant point is that no one really knows our prognosis. This certainly was the hardest part for me for the last ten years. Unfortunately I have no wisdom to share that can make it easier.  However,  I am 50 with no significant disabilities. That's a good long time. Russ

That was the most difficult part for me, the uncertainty. I realized that nothing is guaranteed in life, not even tomorrow. I can walk out of this coffee shop and get hit by a truck/bus/icicle and be dead, but I taught myself to not dwell on that. This is my favorite smilie, but it's not on this board. :|

My daughter had her bilateral direct bypass with Dr. Steinberg back in August of 2007.  She is now 11 years old.  She's had TIA's ranging from 3 minutes to an hour since the surgery.  The more intense ones happen once or twice a year and the shorter 3-5 minute TIAs happen one a month to 3 times a week.  Stanford had no explanation except that prognosis differs for each patient.  Our local neurologist assumed it was seizures so she was put on Keppra, which appeared to lesson the intensity and frequency.  However, her recent incident took her to the emergency room.  CAT Scan and MRI showed no signs of stroke/irregularities.  However, when she was asked to hyperventilate during her EEG, she felt numbness on her left side, similar to her experience with TIAs.  What was concerning was that the EEG showed no irregularities.  Based on this test, our neurologist was inclined to conclude that the episodes were TIAs as opposed to seizures.  We have a 3 year followup with Stanford in June of this year.  We may have to move this date up.  I'll keep everyone posted.  Please let me know if anyone has any insight.

Hi,
Several folks have posted about having returned to Stanfrord because of experiencing TIAs. Many were told that it may be related to not staying well enough hydrated. I try to drink 2-3 liters of water every day, though some days I don't quite manage it. I don't know what the recomendation is for a child. It can't be easy for a youngster to incoporate such frequent drinking of water into her schedule.
Kim