My husband is being treated for cancer.  The chemo often has left him weak and dehydrated, and he fell a few weeks ago, hitting his head on the wall.  Long story made somewhat shorter -- a few days later he agreed to go to the emergency room, they did a head CT that showed a blood-starved area that they thought was an "old infarction".  They did an MRI the next day and gave him a neurological test that he passed with flying colors. 

His oncologist was alarmed enough at this that she insisted he see the neurologist at the well-reputed cancer center where he is being treated.  THREE radiologists identified what they saw on the MRI as moyamoya.  We have an appointment with a stroke radiologist (Dr. Babak Navi) at Weil-Cornell coming up.

There is NO history of stroke in my husband's family.  He has no memory of anything that might be indicative of a stroke, though I do know that for the last decade, he has been withdrawn, angry, unable to hold down a job for any significant period of time.  I have chalked it up to midlife crisis and an inability to face getting older, but now I wonder if he had a stroke with no effects other than personality changes. 

Because of the moyamoya preliminary diagnosis, he has been taken off chemo because the chemo drugs are associated with stroke.  He now faces surgery which he does not want.  His medical social worker says he should be skeptical of this diagnosis because no one in his family has had strokes (though his mother died in her 40s so we don't know if she had any predisposition).

According to the Stanford moyamoya center web site, they see inherited disease in 8-10% of patients.  Everything you see about this disease talks about a genetic or inherited trait, but 8-10% seems kind of low.  So are ~90% of cases NOT inherited?

He is clinging to this idea that he can't have moyamoya because he is asymptomatic AND has no family history.  Is that a reasonable belief, or should we trust the experts?

i would trust the experts enough to at least seek a fourth or fifth opinion if it helps, but i wouldn't just ignore the diagnosis, especially from three different doctors

Hi

Moyamoya doesn't start with a stroke but could easily end a life with a stroke.

Catch it early enough and you could avoid a life of extreme difficulties.

Trust the experts.

Good luck
Mark (Luca's Dad)

Well, after a whole bunch of tests and opinions, and after a carotid angiogram in which atherosclerosis was ruled out, it seems my husband has bilateral moyamoya.  He is having EDAS done at Weill-Cornell in the next few days.  I sure hope they know what they are doing...

He has been completely asymptomatic, though he has had at least one stroke.  Last fall he had a few days where he had trouble pronouncing certain words (that went away after a few days), and then he had the fall a few weeks ago.  He passes all bedside neuro tests with flying colors.  He does not have headaches, weakness, numbness, or any other symptom other than those that show up in the scans and angiogram.  Has anyone ever heard of a moyamoya this asymptomatic?  What should I expect after his surgery?  The doctor is saying of course that this surgery is routine and he should be fine afterward, but when I read about people who had strokes after surgery or personality changes, I get worried.

I got in contact with a MM patient a while ago and she didn't have any symptoms at all! nothing!During or after  a surgery for something else, can't remember which, she had a small stroke. She was still in the hospital and they ran a few tests on her. That's when they discovered she had MM.