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?

I would try to find a neurologist who is familiar with MoyaMoya.  I have had 2 haemorrhages (1980 and 2002) due to MoyaMoya and have also been told surgery is not an option but this may be due to my circustances not the bleeds.  It is always good to speak to someone who is familiar with the condition and not just read about it in books.  This site is a good start.

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   

I am new here also, but have read enough to know that my son needs someone who has experience with this disease.

His surgeon is talking about waiting and placing him on meds because his left arteries are trying to provide the occluded blood supply on the right.  He had a stroke 7/26 this year which affected left side and mouth.  He has regained full use of all body parts...praise the Lord!  But they still haven't decided on a treatment plan...and that was 7 wks ago.

I sent his test results via email to day to Dr. James Rose at The Memorial Hospital Houston and to Dr. Gary Steinberg in Stanford, CA.  I am in Texas, so Houston is the most practical place for us to start.

For comparison, his assigned neuro here has done 4 MM surgeries in two years.  Dr. Rose does 2-4 surgeries a month.  Dr. Steinberg has done over 700 MM surgeries.

Get a second opinion....quick as you can.  Best of luck.

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