I had a stroke in 2005. In the hospital it was diagnosed that the cause of my stroke is moyamoya. I am still revovering from the stroke. Is it helpful to get the bypass surgery now? My neurologist says that sine I already had a stroke thee is no point in having a surgery now., The small collateral arteries that have formed naturally should be good enough. Please advice what I should do?

This doctor obviously does NOT have any MM experience. MM is a PROGRESSIVE disease. It only gets worse over time. The progression is different patient to patient, some faster than others, but you’re always at risk for a stroke.

You know a stroke is coming with this disease, you just don’t know when. Without surgery, the majority of individuals with MM will experience mental decline and multiple strokes because of the progressive narrowing of arteries, and without surgery, this disease can be fatal.

The collaterals will NOT be enough to supply your brain with blood and oxygen after a period of time, I'm sure...they may have been formed because of the occluded carotids, but this is to compensate for the loss of blood flow. Does that make sense?!

The best and ONLY advice I can give you is to contact a Moyamoya Specialist, or someone who KNOWS what they are talking about.

I wish you the best of luck!  READ READ all you can on this site, it is FULL of information on the TREATMENT of MMD.

Steph

We’re use to seeing this lack of experience with MMD in the medical community, but it still upsets me when I hear statements like your neuro made. When are they going to research this disease better, before they tell their patients stuff like that?! When you say,

“the small collateral vessels formed naturally and should be enough”,

you have to know more about this disease, there is a lot more to it, that’s why this is a sneaky, silent killer, and why an experienced MM surgeon is so vital. Although the collateral vessels are supplying blood and helping at the moment, (thank God) please note, they are ABNORMAL MM vessels. They are weak and fragile vessels that can rupture or bleed at any time, which can cause a stroke/hemorrhage or God forbid, death. Those collateral vessels that grew are NOT equipped to deliver the volume of blood needed over a long period of time. This is why ALL MM patients are at risk of having a stroke or hemorrhage without surgery. Like they said in all the other posts, this is a progressive disease, so there lies the danger.

You asked if it was helpful to get the bypass surgery now… I don’t know your specifics; all I can say is… the facts speak for themselves, surgery is the ONLY treatment for MM, and without treatment, the majority of patients will continue to decline and stroke/hemorrhage.

My advice is always to learn all you can about this disease, and to get a second opinion from a MM experienced neurosurgeon.

Mar