I am as some of you have read a 19yr old with moya moya who had surgery in Dec 04. I have had my left side done but not yet my right. I have a blockage on the right but the blood is still flowing so no surgery is needed. Do both the right and left side eventually have surgery or does anyone know if its possible that just one side or the other will be done and not the other. I know with a blockage there more then likely ill need surgery sometime or another but i was woundering if anyone knows the odds on only getting one surgery done.

It's a good idea to liase closely with your neurosurgeon on this, as I believe that both sides will eventually have to be done, as MM is a progressive disease, I believe the side that hasn't had surgery will eventually need it. Talking from a personal point of view, I had my left side STA-MCA bypass initially, and my neurosurgeon advised me to get the right side done within 6 months although I was not having any problems with my right side, and when they did the bypass on my right side, found that it was occluded worse than my left side initially. I would imagine that the others on this site would agree with me on this - I hesitate to give advice as I am not a doctor and don't want to panic you in any way, but I can only speak from my experience - hope this helps
Moira

Brad,

Not everyone (although most do) develops MM on both sides.  I am a case in point of unilateral MM.  That said, it sounds like you already have evidence of MM on your right side and my guess would be that sooner or later you will need to have surgery on that side also.  In fact, maybe it has already advanced to the point that you are ready for surgery on that side now hence your continuing, and seemingly worsening, symptoms.  Just a thought.

Regarding your post on dizziness.  About 2 months before my surgery I was HORRIBLY dizzy.  It was at it's worst while I was on the computer and when I was eating. I can understand why it happened while I was eating (less oxygen to the brain) but I still don't quite get the computer dizziness.  Anyway,  all that dizziness stopped after my surgery.  Just my experience.  

I still suggest pushing to get an angio done as soon as you can.  I think it will really be helpful to you, and your doctors, in figuring out what is really going on.

Lisa

Lisa,

Yes I do have MM on both sides but when i talk to my doctors more or less my nuerosurgen he said that there is a blockage but the blood is still flowing fine and he wont order a angio cause he doesnt want to risk me getting a stroke cause its still early after my first surgery. I do believe something though is acting up cause i have had a few episodes over the past couple of months and when i say a few i mean like atleast 5 that i know were something. I am going to get a second opinion done at a university were the specialize in my dizzy and hopefully he will order some test. On the post about dizzness mine too indeed did happen while i was sitting at my computer but all of my episodes have occured while watch tv or while i was on the computer. Thanks for your post and hope to hear other peoples thoughts.

Hi Brad,

With all due respect to your doctor, I have to say, IMO, that if you suspect that you are having symptoms that typically result from the progression to the other side and/or possible neurological deterioration... If it were me, I couldn’t get away from that doctor quick enough to get a second opinion with a mm specialist, to get the tests needed to know one way or another. I wouldn’t take the chance of permanent loss of function in any way, if these are warnings.

I can see the concern for any evasive test, but sometimes you have to weigh the risks of waiting. If you have permanent damage from a stroke anyway, (God forbid!) without having the angio, where does that leave you? See what I mean? If I were putting my life into another’s hands, it would be that of an expert on moyamoya.

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Mar

Mar,

I perfectly see what you mean. I have been trying to get away from my current surgeon from some time no to see a diffrent one. The only specialist are from a diffrent city and up until now my insurance wouldnt pay for it but they gave in and are going to send me to see a another specialist. With my doctor I think he was trying to play god with my condition and be one of the first docotrs to prove things about moya moya that doctors havent been able to prove. I would agree i think with all my symptoms right now should be more then enough to have a test done compared to what could happen if something isnt done. Cause whos to say these small symptoms that are probably being keeped in check souly cause of my meds arent signs of something worse to come. I mean onviously no one can look forward to having the test done of even the thought of a second surgery no one looks forward to but with MM you have to expect sooner or latter its more then likely going to happen. Thanks for your post.

There are cases where only one side is affected, but it sounds like you have moyamoya on both sides - just one side is more severe.   I think you'd need surgery on the other side at some point, if there's already a blockage.