Hi Hikaisista,

You pose a very good question and it's one that's come up several times lately.

Obviously, there are many different ways the arteries in the brain can become blocked... plaque, blood clots, etc. all of which can cause TIA's and stroke.  The distinguishing factor that defines moyamoya is the formation of the 'moyamoya vessels', or 'puff of smoke' on the angiogram.  The National Institute of Neurological Disorders and Stroke (NINDS) defines moyamoya as "a rare, progressive cerebrovascular disorder characterized by the narrowing or occlusion of major blood vessels leading into the brain, and the formation of abnormal blood vessels called moyamoya vessels."

With everything I've learned about moyamoya, my understanding/belief is moyamoya is a very easy disease to diagnose by looking at the angiogram.  If there is the presence of the 'moyamoya vessels' (or puff of smoke) it's moyamoya.  No 'puff of smoke', no moyamoya.

I think this is exactly why we all push so much for people to have a physician experienced with diagnosing and treating moyamoya to look at each individuals films!

As moyamoya gets more and more media attention, my fear is that moyamoya will become the "popular diagnoses".  As I said before, not all blockages are caused by moyamoya.  Other options (such as ballooning, stints) are available for plaque, blood clots, etc. which are much less invasive than the surgery recommended for true moyamoya disease.

In your case I would recommend you have someone very experienced with diagnosing moyamoya (Dr. Steinberg or Dr. Scott) look at your films for a second opinion.

Just my  

Hope this helps some and all the best,

DJ

Hi Hikaisista,

Welcome to our mm family. I'm sorry you had to hear the words moymoya, but you've come to the right place for support, information or just good people who have been down that same road as you and are willing to help you in any way they can.

I can understand your confusion, we too have felt that same way, and from that, we found the best advice is to read all you can about MM. The comfort is in learning everything you possibly can about this rare disease. Unfortunately the medical community doesn’t know enough about moyamoya “the disease”. In fact, we see more misdiagnosis then we do the correct one, it seems. That’s why a second opinion with a mm specialist is a must with this rare disease.

A way that helped me understand the difference between MMD and the many other conditions that can cause a stroke was… when you have MM disease, the narrowing of the blood vessels stop the proper blood and oxygen to your brain, and what’s amazing to me is… over time, you grow new blood vessels that try and get the proper blood flow, BUT, these are the abnormal mm vessels, "the puff of smoke" , they’d look like dozens of wires entangled behind your computer or stereo system, and that’s what shows up on the angio like a "puff of smoke," all those (wires) of vessels trying to get blood to the brain, but they’re weak and fragile mm vessels, they can bleed or hemorrhage and cause a stroke. Yes, there are many other different reasons/conditions that can cause a stroke, but as DJ said, the “puff of smoke” is either there or it isn’t, and that’s what confirms the diagnosis of moyamoya disease. I have to tell ya Hikaisista, one look at your angio by a MM specialist who deals with MM on a daily basis, would know the difference in a NY second, without a doubt. We over-nighted a copy of our films to Dr. Steinberg, at Stanford, a MM specialist and our family was contacted within 24 hours with his diagnosis that saved my niece's life. Knowing may ease your fears or concerns, and all the info is right here on the website to contact a MM specialist.

Again, I can't emphasize enough to learn all you can about this disease, it will help you feel more confident in your decisions down the road. Our thoughts and prayers are with you and please keep us updated.

Mar