Hi everyone,

I wanted some feedback on some confusion on my part about moyamoya.  What is the difference between moyamoya and a normal stroke?  I realize that most people when they have a stroke, there is plaque in their vessels and in moyamoya patients, the vessel dies and become narrow overtime.  In the angio pictures, do both patients have collateral veins and what is the difference?

The reason I ask is because I now have two different opinions on my condition.  I have been diagnosed w/moyamoya since my small stroke back in January by my local neurologist and the neurosurgeon that will be doing my surgery in North Carolina.  But, I also sent my workup to someone at Northwestern.  This neurologist does not think that it is moyamoya and would like to repeat my angiogram and maybe balloon the site and put a stint in.  My local neurologist is not recommending this and still believes that I have the early stages of moyamoya.  All of my other workups have been good...my echo cardiogram was normal, cholestrol, and no diabetes.

This is all very confusing and emotional!  Of course, I do not really want to have surgery but if it is the only way out then I will do it.  I only have moyamoya on my right side.  There is no sign of it in my left side.  I have also sent everything for one more opinion at UCSF and will wait for their opinion.  I currently am scheduled for surgery on April 25th in North Carolina.  My blood pressure continues to be all over the place...infact I will be having a stress test tomorrow.  Still not back to work and won't be back until after the surgery.

This is such a great site.  I have gained much information from reading everyone's posts!  Thank you in advance for all of your help and guidance!

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  [smiley=twocents.gif]

Hope this helps some and all the best,

DJ

DJ,

Thank you sooo much for your early reply!  This whole thing is very complicated.  Actually, I truely believe in my neurologist as has seen many moyamoya cases.  Here in Hawaii,  because we have a high population of asian, we have our fair share of moyamoya.  

I will continue to pursue this until I come to a decision.  In the meantime, I will continue to log onto this wonder site for more information.

Mahalo for your help!

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