OneStoneTwoBirds
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Moyamoya is progressive. It does not get better on its own. If you have moyamoya, you are prone to strokes.
My husband was dx in July 2013 while undergoing chemo for bladder cancer. He passed out in the bathroom one day, hit his head, finally went to ER where they did a CT scan of the head and after a bunch of neurologists and radiologists looked at them, and did some more scans, they agreed that yes, as unlikely as it seemed, this 58-year-old guy who passed every neurological bedside test and was asymptomatic had moyamoya.
I know he'd had a TIA the previous year because he'd talked of "having trouble pronouncing some words" -- but he refused to get it looked at. I also know that his personality changed a lot in the last decade -- depression, inability to handle social cues and office politics, short temper, unwillingness to interact with other people. So how long he'd been having TIAs and ignored them is anyone's guess.
By the time he was diagnosed he was severely narrowed on the right and somewhat better on the left. He had EDAS in August last year and had a very easy recovery. "Brain surgery" sounds very daunting but it's amazing how quickly one recovers from this. He was out of the hospital 3 days after surgery, stitches out 2 days later. And if he hadn't a) drunk a ton of tomato juice, deluding himself that this was "hydration" and b) bonked his incision site on a kitchen cabinet door that he'd left open, I think he might be here today. But he did both those things and did have a sizable stroke that went into seizures and refractory status epilepticus.
His moyamoya was pretty advanced and the neuro said that "smart people are often able to compensate" -- which is why he was largely asymptomatic. Plus he'd been through dose-dense cisplatin chemo and cisplatin elevates risk of stroke all by itself. So he was a time bomb waiting to go off for years.
If your disease is not as advanced and THE big gun in MMD in the country says surgery, then I'd recommend flying out there and talking to him. MMD is not something to trifle with and surgery does usually have good results. My husband was an odd case because of other complications. Your experience will likely be far more positive. But the surgery and recovery are not that big a deal. On YouTube there is a series of videos by a young woman who had surgery for moyamoya -- including right after surgery and a few weeks later. Look for them, they will really help you make your decision. Good luck to you all.
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