Just would like to hear some people's experiences with re-vascularization after indirect bypass surgery for moyamoya if that's cool. I know my doctor said it could take months and it is different for everyone, but I would like to hear some real-life accounts. Did anyone have complications where they had to go back and get the direct bypass?
Any info would be much appreciated!
Thank you!

I had an indirect bypass 5 1/2 years ago and I'm doing well these days. I've had my 6 month and a 3 year check up so far and have been told my bypass is doing its job. I did end up with a direct bypass on my other side because I chose a different surgeon when the time came to need my right side done. I was still nervous and worried until my 3 year checkup but I figured that if it was working at that point, that I could relax and live my life.

Thank you for the reply! At your 6 month check up, was there any revascularization going on yet? Glad to hear you are doing well!

Hi!

I had a left EDAMS done in December 2016 when I was 24. At my 6 month follow up (only MRI), I was told everything was stable and there was good flow however it was too early to see any newly formed vessels. My 1 year follow up angiogram is in a few months so hopefully, there has been some revascularization :D.

I had a really great experience and only needed 3 weeks to recover from my surgery. I am lucky to have never had a real stroke. It was caught somewhat early because my main complaints were horrible migraines and tingling in my arm. Although there were areas of stroke found on my MRIs, my doctors said I probably had silent strokes but thankfully don't have any deficits. I only had a TIA a month prior to my surgery but didn't act on it because I was still in denial about having moyamoya :o. My doctors told me I do need to be more serious about my symptoms but thankfully since the surgery, I haven't had any. I continue to get migraines but they are not as frequent and easily managed with my migraine meds.

I do have evidence of disease on my right side but not as severe as my left was. I am just waiting for my angiogram to see if it has progressed since and if there is an indication for surgery. I am still early on in my moyamoya journey but I'd be happy to answer any questions you have! Hope you have a speedy recovery :).

At my 6 month checkup they were pretty vague about whether it was working or not. They did say that things were stable and they didn’t see any new signs of strokes. I know I felt hopeful after my 6 month checkup, but still nervous about my future. They did say the indirect revascularization process takes time. I had the EDAMS procedure at OHSU.

Was there a reason your different surgeon went with direct bypass the 2nd time around, SaraB?

My husband did a lot of reasearch and decided that he would rather I go to Stanford for my second surgery (STA-MCA). He didn’t feel like my first surgeon knew as much about Moyamoya as he had led us to believe.

Back in April 2017, I had my 1st stroke at 36 y/o. At the time, it was diagnosed cryptogenic stroke, meaning they really did not know why is happened. Also moyamoya was not detected, nor was it mentioned.

So I was told, lose weight, cut back on drinking alcohol, and stop smoking. And I did, I started hitting the gym, and did my best at dieting -  overall I lost 18 lbs in 7 months - not great but still a step in the right direction. I cut back on drinking - from 4 drinks a day to only weekends and cut back on smoking which I only did occasionally anyways.

In December 2017, Xmas eve, I had my 2nd stroke and was transferred to a different hospital since the one I was at still considered it cryptogenic. This time moyamoya was confirmed and surgery took place Feb. 2018.

I am concerned that since I have 2 strokes in 8 months if a direct bypass would be a better way to go than the indirect that I have already had on the left side. I have the right side to do still.
My Doctor, who is a very talented, kind, and is considered a specialist says that indirect would be best, but what do you all think?
I think its tough just holding on an hoping for the best after having the stroke cycle I've had

My sister had a combination of direct and indirect bypass 2 years ago and is doing well. The surgeon felt combining the two techniques would give her better blood flow.

update -my sister had an MRI and showed good revascularization on both sides. Her Dr. is soon to present her case at a conference.  8-)

Thats great to hear willow! How old is your sister if you don't mind me asking? I'm curious if her age had any correlation with her recovery. Thanks