Hello everyone, I am new to this group.
I was recently diagnosed with Moyamoya in July after suffering a stroke.
I have had an EC-IC bypass surgery done on both sides.
My neurosurgeon does not think a follow up (i.e angiogram)  is necessary as long as no major stroke like symptoms occur.

Everything else I've read online suggest follow ups to check blood flow. I am rather bothered by this.
I am in my 20s and I just want reassurance, confirmation.
Is it standard to not get any follow ups? I would like to get a general consensus before contacting my neurosurgeon again. Thank you. 

Hi there.  I was diagnosed this May and had MCA-STA bypass surgeries bilaterally.  They gave me an angiogram the day after surgery and I am scheduled to have an MRI next February.   Just wanted to give you an answer. 

Thank you for your response. My neurosurgeon will not give me an angiogram till next year. I'm not sure what to do anymore.

My sister had the bypass surgery on both sides. The doctor did the 1st angiogram 3 months after the 1st surgery (before the 2nd) and did another at 6 months after the 2nd side. The next follow-up will be in a year unless she has some symptoms.

Hello all, I was just diagnosed last week after having 4 strokes (very blessed to havenow residual effects) found out today and found this site i am 44. It looks like i am old to be diagnosed with this from what i read on here. But I have been told the neurologist wants to give me an MRI every 6 months.

I dont know much but sure glad I found this site.

I wasn't diagnosed until I turned 43, so you aren't too odd, Kstan.  Lol.  Welcome to the club. 

CTA is a rather serious event so I can see why the dr would wait. The first week post op they are concerned about clots, pressure, and recover.y

MRI blood flow is typically much safer. You should have one before and then after. With a indirect bypass you will have to wait  6 to 8 months after to see the impact.

hi christine,

with the caveat that we are talking about a child, and not an adult, perhaps this might be helpful. our child was diagnosed with moyamoya a few years back and had two neurosurgeries. we have a neurologist in our extended family, and through him we were able to find a pediatric neurologist who is quite literally world-class. She was the head of the team that did our son’s two neurosurgeries (simultaneous direct and indirect bypass). i remember asking her specifically about whether or not a post-operative angiogram would be helpful given what i had read on this site and elsewhere. her response was that a not insignificant number of bypasses fail due to clotting of the newly attached vessel, and that taking an angiogram in the days and even weeks following would not tell us whether the surgery was successful because an angiogram that showed a blood vessel with good flow was still well-within the window of failing due to blood clotting. because the angiogram is invasive and would not reveal reliable information about whether or not the surgery was successful, and would not in any way change treatment of our child, she suggested that we simply wait a few months and then have a less-invasive mri/mra that would reveal what we needed to know. This is what we elected to do, and continue to do on a yearly basis. My son has never had a post-operative angiogram, and in retrospect we are happy that we didn’t subject him to one given that it would not have changed his situation in any way.

in sum, a post-operative angiogram wasn't going to give us information that we could count on, and the results of the angiogram were not going to change the prescribed course of action. i have no idea if this is what your doctor is thinking, but perhaps it could be something to bring up with her/him. good luck.

As I have just posted my surgery is just been scheduled but even this Dr has said I will have to follow up yearly with at least an MRA, Please get another opinion. I have seen 3 neuro surgeons each  said they knew but none really did. I have found more info on this sight even basic then the Dr would tell me.

It turns out that I was ordered to have a contrast CAT scan rather than an MRI.  But it was good news.  The blood is sprouting up all new in fresh veins, so that was good. But, when my surgeon told me I probably didn't need my second surgery, I was less than thrilled.  But, I guess better safe than sorry.