I was diagnosed with "Atypical MoyaMoya" of my right MCA.  My left MCA is normal, as are my carotids.  I had two tests (CT Perfusion and Cranial doppler with co2 challenge) which indicated blunted/decreased blood flow on the right side.  My MRA clearly diagnosed a "puff of smoke".  Until 5 weeks ago, I was asymptomatic, at least no conscious symptoms.  We've noticed quite a few subconscious adjustments that Ive developed over the years  to get by.  I am a 42 year old white male living in upstate NY.  Anyone have this type of Moya Moya condition.  Thanks, MEL

Mel,
Most neurologists and neurosurgeons have little experience with diagnosing or treating Moyamoya.  Is it possible for you to get to a doctor who specializes in MM?  In addition to "Atypical MM," there is also "Probable MM."  Not sure, but I think these terms are used when MM is evident on one side only.  There is also "fibromuscular dysplasia" which may be confused with MM. 

FYI - Dr. Robert Spetzler, Chief of Neurology at the Barrow Neurological Institute, Phoenix, AZ and Dr. Gary Steinberg, Chief of Neurology Stanford Medical Center, CA both recommend SPECT scan and angiogram for patients with MM.  If possible, it's best to have all of these tests done at one of the institutions that specializes in MM.  Just as it's important to have an experienced neurologist/neurosurgeon for MM, it's equally important to have SPECT and angiogram done by the experts as well.
Best,
Roni

Just wanted to note for the record that I received a pm from Barbara, Mel's wife.....that is why I know so much about Mel's prospective treatment...P

Hi Mel,

Sorry, this might be long but I feel the need to vent on this subject, on my case anyway.  I too "supposedly" have atypical MM.  I say supposedly because my docs don't have very much experience with MM and even though I was diagnosed and had surgery in 2002, no one mentioned atypical until last month. In fact, in 2002 I was told there WERE signs of MM on my right side but not bad.   I have to say that I am very suspicious of my docs declaring it atypical for various reasons.  I have not had a recent angio, I am currently experiencing symptoms related to my supposed "good" side and I'm not sure what my docs base this reasoning on.  My docs recently wrote me that " there is no sign of Moyamoya on the right" and that "you will never have Moyamoya there- it usually develops before your age if it is to develop at all."  Well, all of us here KNOW a few things ourselves.  While MM does develop at some certain ages more than others, no age can be considered safe.  For goodness sake, I'm only 2 years older now than when I was diagnosed!  If it happened at 34 it can happen at 36!  Makes no sense to me.  Also, I know that a lot of people on this board  had surgery done on one side and then 2 years later the other side progressed.  

Needless to say, I plan on getting another opinion soon,  especially because I was recently told that on my "good" side I "might" have an atypical unruptured aneurysm that "can not be treated surgically".  Go figure!

I hear that your doctors are very good so I wouldn't second-guess them at this point but I would always be prepared for the other side to be affected by MoyaMoya.  Just my experience.   Boy, I wish there was more statistics and research on all this!

Done venting!  Hope I didn't confuse or frighten you!  Like I said, this is just my unfortunate personal experience!  I'll feel much better after another opinion and another angio.  By the way, have you had an angio yet?

Lisa

I had this very issue in 1988. I had an arteriogram done, and I only had MM vessels on one side so they discounted it. After another year, I had them on both sides and they finally dx me. Doctors need to realize this is a progressive disease and just because you catch it early, doesn't mean you don't have it...

Please make sure to get tested on the other side again. It sounds so much like my story, and waiting is not a safe bet (I was lucky that I didn't have a major stroke). When I was dx, they were convinced MM was only in adults (odd, huh?). Well, as you can see on this site, it affects all ages. Just take care of yourself, even if you have to fight the docs. I know my mom went to battle, and I am very blessed to have her!

Sara