Hello all, it has been awhile since I have been on the board. mainly because I have been working alot to pay for last years medical expenses. I need some info maybe somebody on here can help us with. Our daughter Megan had the pial synangiosis (both sides) surgery Jan of 05, and seem to be doing well. About 7 weeks ago she had a major stroke.  We contacted Dr. Scott and was already scheduled for a angio on April 10, Well on the drive up from virginia to boston, she had another major stroke in the car in pennsylvania, after shipped from hospital to hospital ...we finally made it boston...after the angiogram in boston...DR. Scott said, while her surgeries did extremely well, none grew in towards the back of her brain, hence the two recent strokes. He is going to do some surgery to the back of the brain to get blood flow back there, but i cannot find any information on what is going on...is it the same type as the pial sygnosis.  Does anybody know anything about this? I believe I heard him say he has only done two of these in the past and it is much more complicated than the normal surgeries.  I know we don't have many or any options but to do the surgery. But any feedback or suggestions you could give us would sure be beneficial. oh yeah, he did double her dose of asparin.

                                            Megan's Pop

hi there,
i'm not sure i'll be of much help but if it's any consolation i have moyamoya in the back of my brain too.
my stenoses are in the vertebrobasilar artery and where it splits into the posterior cerebral arteries (both sides).
so far i haven't had any strokes from this, just a few TIA's, fortunately... i am not sure what pial sygnosis is... i have had a STA-MCA bypass on my left side last november and am going into today for my right side to be done on thursday.

because i have fetal PCA my right anterior arteries are suppling my PCA region (rather than the other way around or however it works)... anyway, my surgeon is hoping that this STA-MCA this week will hopefully massively increase the blood flow through the PCA region and eliminate surgery in the basilar region. because like your surgeon, mine has only done it once or twice before and it is more complicated (i think mostly due to the depth into the brain).
i'm pretty sure it would have to be some sort of bypass, i don't think a muscle transplant in that area would be possible??? but most of that is just guesswork.... basically we are just waiting to see how this op pans out to make the next plans...

anyway at least you're not alone! and let me know if you get any more info...

  Your family will be in my thoughts and prayers for a safe surgery and quick and uncomplicated recovery.It really is so much for a little girl to go through she must be one tough little girl.I feel the same way about Kathleen so often, that this is just too much for one kid to deal with, but she just makes it so easy for me.Her smile and hugs just make it all OK.She has helped me through it all because I see how with every stumbling block she's thrown ,she just gets more and more determined.She still has a long road to recovery but it just never gets her "down".I'm sending many many prayers and ((((HUGS)))) your way.
Mary Grace

hey, sorry i didn't make any sense....

basically, because of where my two bypasses currently lie, they can't "sprout" to the back, but they can supply that area with blood... (through the round-about action of the circle of wilils) to hopefully avoid strokes/TIA's caused by a failure of bloody supply.. i'm not entirely sure how your daughter's bypasses were done... they all seem quite difficult, my STA was isolated and attached to my MCA through a hole in the skull (which is still there)....
the surgeries [that i've had] won't help stop or slow down the narrowing in the back arteries, which, if it progresses fast enough, could still result in strokes etc.. in that area..
basically though, because i was only diagnosed 6 months ago, we don't know how fast the narrowing in that area is progressing..
basically from now on i'll be having 2/3 monthly MRI/MRA's to check on the blood flow, to see if we have to operate in the back.
if we do, the incision will be pretty much right in the middle of the back of my head - in line with the ears [subject of course to where the supplying arteries will come from].... however this will all just be taken one step at a time as this kind of surgery is apparantly quite risky and difficult (a fairly deep incision must be made and i'm not entirely sure how a bypas would work... perhaps a transplant would be easier, if time isn't an issue).

dunno if that helps at all sorry...

hey crew... well i've had another long open honest discussion with my surgeon about my moyamoya in the basilar region...
according to him, when they first diagnosed me, they didn't think it could get any worse!! (they've been breaking it one step at a time.. hehe... clever!)

apparantly where my narrowing is at the back is all the way up the vertebrobasilar artery where it supplies the brain stem, and all the branches that come off it - especially the ones that supply the visual field (the pca's)... yehaa!
the conclusions drawn from a few conferences and meetings has been that a direct bypass, of any sort, in the area is incredibly dangerous... at best a 50/50 chance of "working".. and not reccomended by most surgeons.... (mine would try it but will have to wait until the risk of surgery is less than the risk of no-surgery - tricky guesswork!)..
another method is a muscle transplant in that area, but apparantly not many muscles are appropriate.... something he has done once before was use a stomach muscle that apparently is compact but can be very stretchy.. and stretched it up around the brain stem etc...
i don't quite get the technicalities but it sure sounds cool! would make for some wicked scars anyway...

for now though it's just a waiting game... monitor the symptoms.... wait till it gets too bad.. then make some decisions...

at the same time, it may just have stopped where it is right now and no more will need to be done!