Hello Tony (and others)

I saw your message on DJ's moyamoya page (guest book). I just want to encourage you that not all moyamoya cases are rapidly progressing ones.The entire diagnosis is a bit hazy. I'm 40 years old male and diagnosed with MM two years ago after I had, during one single day, three short episodes of left side weakness. The diagnosis was done after arteriograms.

I'm on small doses of aspirin daily, and have had no further episodes after that. The blockage in the artery remains, moyamoya vessels are there and I do get a mild headache when not enough sleep, not enough of fresh air, too rigorous exercise. No further blockage is apparent in repeated arteriograms, to be honest doctors can't quarantee when the process of blocking has started and whether it will proceed. If it will proceed, it is up to the normal regulation processes of brain circulation if it can keep up with the blockage (compensatory circulation).

During summer time, I run 3-5 times weekly, on winter I mostly do cross-country skiing. I try to pay attention to my diet. I'm considering training for a marathon. I understand I'm a potential stroke patient (bleeding or blocking), but I just want to say that research suggests that a part of adult MM patient may live fairly normal life. This conclusion is based on my reading through MM related medical articles available in the medical journals. Hope I'm right on this one.

God bless you all.

JV

Hi Alice

Although we both could do wihout having MM, it is very nice to hear you have been around since 1964 (the year I was born  ). My first reaction when finding out about MM was desperate, told my kids about it waay too dramatically etc. I just hope you keep hanging there, I keep hanging here. Best wishes to everybody else less lucky than I am, human body and modern medicine can do wonders.

How were you diagnosed 1964, I guess you have been diagnosed afterwards, and supposed you had MM already back then.

jv

Hi Annica,

I'm certainly no expert, but I have did extensive research on mm and absolutely nowhere has it ever said that mm syndrome is eventually fatal if you've had the surgery. Yes, it does say it is fatal if left untreated, but only left untreated. jv is suggesting it may be ok if left untreated in some cases. Absolutely no where have I ever read that! Surgery is the mainstay of treatment for mm syndrome because along with progressive narrowing of the brain blood vessels, the patients clinical condition eventually will worsen. That is why the surgery is so important. As far as Alice's statement of a fatal prognosis... well, I can't speak for her but I'm sure she wasn't speaking for all. That may just be in her case. Every case is different depending on the health status at the time of the first diagnosis and hers being 40 years ago. After surgery, all research studies to date says the prognosis is good, but again, every case is different depending on each individual and their various medical conditions.
Please don't worry. We've been told that follow up is extremely important. This forms the basis of their knowledge regarding prognosis and ultimate outcome of this condition.

Mar

Studies suggest that unilateral (narrowing and MM vessels only at one side) type, especially in adults, maybe a distinct form from typical bilateral form of MM. Classification is hazy here, and ofter terms "moyamoya syndrome" or "quasi-moyamoya" have been used.

I agree that not all have the luxury to sit and wait (carefully monitoring arteria through regular angiograms and paying attention to symptoms), but those cases do exist.

Cheers
jv

I guess I also fall in the "unusual" category of only having the disease unilaterall--at least so far!  My doctor told me that maybe the moyamoya had "run its course" on me because I am 5 years out from my STA bypass and he said the additional vessel damage should be much more extensive if it was going to be really aggressive.  I don't know about this and am hoping to have my case reviewed by Dr. Steinberg for a 2nd opinion.  Regarding follow up, my doctor doesn't recommend anything like annual angiograms due to their risk.  They generally would only do it if I am having bad symptoms I think.  this is the thing  I hate the most--you feel like a walking time bomb wondering when it's going to get another vessel! I've decided the best thing is to adopt the attitude that it's run its course and hope that pans out!

Siri

JV:

When I first started having TIA's, I was 8 years old. My MM was only on one side of my brain, and therefore, they told my parents it WAS NOT MM. Now, of course, they realize that it can be on one side only. Anyways, the reason I am telling you this is because, MM presented on one side of my brain, and then the other. It took them a while to figure it out.

It also worries me that you haven't had a surgery. I have always been very active, but I always knew that I am just lucky that I had surgery BEFORE having a stroke. I do not mean to alarm you, I just think you should get a second opinion maybe: if they think you don't need surgery. And the only reason is that I care. I am now 23, and have only my docs to thank!