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  

Hi Mel,

My sister has mm and is now 44.

Have they ever considered surgery on the one side.  My feelings of mm are never a wait and see.  I believe the only way mm can be helped (not sure if helped is the right word) is with surgery.  My sister had the surgeries after a few TIA's and a severe stroke.

Keep researching and reading all you can.

Maybe someone else on ths board has heard of atypical mm.   I have not heard of it.  That does not mean anything I am only a sister of a mm victim.

Janice

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

Hi Mel---only my opinion, but I think you are in excellent hands with Dr. Marshall at Columbia Presbyterian and Dr. Spellman does the angiograms all the time to test for mm.....and, if surgery is recommended, Dr. Connolly will be the one doing it...and he is a moyamoya surgeon with extensive experience........I know that you are in good hands because I have been with those very same hands........just my opinion, Pat ;) [smiley=wave.gif]

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 :)

   
    Hello Mel, This is Tom G.  ditto to Pat M in that you really are in the right place.  Try to get Dr. Sean Lavine to do your angiogram at NY Presbyterian.  He is the best at what he does a great guy and has seen a lot of MoyaMoya.  Then make sure you hook up with dr Connolly. One of the best Moyamoya experts in the country,  and tell him I said Hello.  Good luck God Bless and stay in touch,  Tom Gallucci :) :) :)

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

Hi Mel

I 40 yr old European male with similar angiographic finding. I've had 3 TIA's during one single day more than 2 yr's ago. I do have occasional one-sided headache that I relate to the state of my right MCA. Otherwise I'm symptom free, and will run my first marathon next Saturday at roughly 4 hours. I've been followed through MRI and angiogram, and so far no progression has been seen. I'm on 100 mg aspirin daily. I guess I'm very lucky, and I do appreciate my life much more than I did before the finding.

There is no doctor in this world that can tell why and when the angiographic condition has developed or whether it will progress to a state where a by-pass surgery would be needed. I hope I will be one step ahead the condition, and get small signals of worsen condition before any major stroke which is of course of higher risk for us due to the more fragile collateral artery network.

All the best for you,
jv

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