Hey Caili,

You should get a second opinion from one of the doctors on this website under Surgeons with bypass experience.  My wife had complete occlusion on the left side and almost complete occlusion on the right side.  She had the surgery and is doing fine. 

I think you are on the right track in questioning this and I would have her see someone quickly.

Hang in there you are doing the right thing, and good luck to you.

Wayne

Hi Caili. I am Nikki.I am very glad you found this site, and YES, GET A SECOND OPINION. My mom also has mm and had a massive brain hemorrage/stroke almost two years ago. At that time we had never heard of MM and it was mentioned after they did an angiogram to see why she bled, but we were never told for sure one way or the other and she was treated as a stroke patient. They also told us that there was no surgery that could be done to help her. My mom was only 42 and was in a coma for a month, from which she was never supposed to wake up. But she did and she got better until June when she had another one, this one even bigger than the first. We got in touch with Dr. Stienberg at Stanford and she had surgery done on both sides a couple of weeks ago and is doing pretty well, great actually considering all she has been through. I just wish we had gotten a second opinion after the first one, we just didn't know enough at the time. I hope this help and please keep us posted. How old are you if you don't mind me asking? You are more than welcome to IM or e-mail me if you want to talk about our moms or just talk. Good luck.                                                                  Nikki

ABSOLUTELY!!!!!!!!!

When our local docs suspected MM, they immediately had radiology load all of Sean's scans onto a CD for us to send to the specialist of our choosing.   

Time is important here ... get out your 'red tape' cutting scissors!!!!

Steve

Hi Caili,

We too were told no surgery. We sought a second opinion with a doctor who specializes in moyamoya and were told my niece needed surgery immediately. The second opinion saved her life. So IMO, by all means, DO get a second opinion and preferably one who has experience with mm.

The mm blockage you speak of in your question is a irreversible blockage of blood and oxygen of the main blood vessels to the brain as they enter into the skull. This vascular occlusion (blockage) continues to progress and starve the brain of the blood and oxygen needed. The brain attempts to overcome this narrowing and subsequent reduction in blood flow by enlarging other smaller blood vessels, a process called forming “collaterals,” but surgery is usually the only alternative if the brain isn't getting enough blood flow. Their are several different types of surgery, and basically with the same goal, and that is to "bypass" the mm blockage and get the proper blood flow to the brain, instead of repairing the blocked mm vessels as you spoke of. I hope that made sense. That's why my other advise to you would be to continue to read all you can about mm, so you know the decisions you're making are that of the best informed information out there and the best surgery for your individual case. What we have found here on the website is, not all neurologists/neurosurgeons are as up to date as the mm experts.

You all are in our thoughts and prayers. Please keep us updated on her progress.

God bless,
Mar

I'm so glad your making some progress.I will keep your mom in our prayers.
Mary Grace