I am a new poster looking to see if anyone else has the same issue as my daughter.  She is 14 and was diagnosed with MM early last year.  Symptoms prior to diagnosis were headaches and bilateral vision loss that would return to normal after a few seconds.  The vision episodes were happening 1-2 times a day prior to surgery.  She had direct bypass surgery on her right side in June of 2012.  Since then the vision episodes have gotten better but are not completely gone as they had hoped.  She will have one in a day and then might not have one again for 1-1/2 weeks but then will have sometimes 5-7/day or 2-3 for a couple of days in a row.  Has anyone else had a similar experience that could offer some insight?  They seem to be puzzled by the fact that the vision loss is in both eyes at the same time.  We are frustrated... :-/

my daughter didn't have vision problems but she does have some other issues before and after surgery.  She gets migraines and now she will get tingling in her hands and a tiny droop on the left side of her mouth.  After many tests the doctors thisnk it may not be moyamoya related...they just can't be sure.  If you haven't had her eyes checked I would.  It's possible that there is something going on not related to MM. It is frustrating though when we can't know what's going on.

Thanks for your insight.  We have had her to a neuro opthamalogist but unfortunately he was not familiar with moyamoya or the type of surgery she had so he could not offer much with regards to that.  He was able to tell us that there is nothing structurally wrong with her eyes - in other words no explaination for the episodes from an eye standpoint.  The only thing he could offer was a generic thought that based on his knowledge of vascular disorders in general he could possibly see how it could be related to her MM.  We are waiting to hear from her neurologist.  I just worry about her daily....does that ever get easier?

My daughters transient bilateral vision loss has changed a bit and wondering if anyone that is new to this site has had any of these issues.  She now gets tingling in her fingers during the vision loss episodes.  Local neurologist has looked at everything and strongly feels it is either directly or indirectly related to the blood flow from moyamoya.  He is looking to put her on Verapamil in addition to the 81mg of baby aspirin she takes.  Anyone else have experience with these types of symptoms? 

I to lose vision in both eyes at the same time. I don't think my doctor really believed me when I told him "that I go blind and can't see at all" this only last for very short periods but I can count on my vision being a problem all day when it happens.
I will be passing this on to him on my next visit. Thank you Sue B.