Hello everyone! I am so encouraged by all the topics and information on this website! I was just diagnosed with unilateral moyamoya 2 weeks ago and I'm having bypass surgery in 2 weeks with Dr. Dan Barrow @ Emory University Hospital! It all seems like it's going so fast! I was wondering if anybody out there has had experience with Dr. Barrow? Also, when I was first diagnosed (not by Dr. Barrow but by another neurosurgeon) that doctor told me that moyamoya could be "cured" through surgery but by doing research, it looks like it never really goes away and can always come up on the other side. Also, once you have surgery, what happens to the area (mine was the right side) that was already affected by moyamoya??

I'm hoping that after surgery, I'll be able to get back to my routine of exercising and being really active. In the meantime, I'm just scared I'll hemorrhage again so I'm pretty much scared to do anything right now.

thanks for reading!

Hi, hannajc and welcome to the mm family. I see you have done your research on mm. You are right that there is no cure but having surgery will add year's to your life. I was diagnosed in 2002 and had bypass on the left side in 2003. All of us are scared when are told but just live one day at a time and live your life to the fullest.

thank you so much for the encouragement! There's definitely good, positive days and then there's the not so good ones.  Thank you for sharing your story too. I really appreciate it!

I had visted Dr. Barrow in June of this year.

Hey Hanna

Moyamoya is a progressive disease meaning that the chances are if you don't have surgery it will probably get worse. In theory, once they've bypassed the blockage you should be OK. But there is no hard and fast rule and every case needs to be taken on it's own merits. The difference going forward is that you will now be aware of whats going on in your head and your doctors should schedule six monthly scans to keep an eye on the affected area and as soon as they believe there is a possibilty of another episode, hopefully they will operate again to bypass.

Knowledge is the key here. Arm yourself with information.

When you say the area affected by moyamoya, do you mean blockages or damage done to your brain by stroke?

If it's damage done by stroke you're reffering to, it's my understanding that damaged brain cells don't regenerate. But it's an amazing organ and very often other parts make up for deficits.

I'm not a doctor and this is very much my interpretation of some things. I am open to correction from other users if I'm wildly off target.

Take care and good luck
Mark (Luca's Dad)

Hi Mark! Thank you for your post.

By "affected area" I meant the area where the moyamoya vessels are. Right now, the doctor said on my right side of the brain, they're larger than normal because of the vessels trying to compensate for the blockage, therefore it makes them weak (that is how I had my bleed in the brain because one "popped"). So I was wondering if after surgery, that area goes back to normal so that I don't have to worry about popping another one. Does that make sense? The area where I had the bleed is continuing to resolve and I only have a bit of numbness in my leg left (thank the Lord God!)

I am one week out from my surgery!