I wish I could remember what percentage my blockage was, but I can't. What I can tell you is this: by the time I was correctly diagnosed (I was also misdiagnosed with ms) the doctor told me that I had to have the surgery immediately or risk a debilitating stroke.

There are no words to express just how important it is that you and your husband get a second opinion. Moyamoya ALWAYS gets treated with surgery if it is treated correctly. I highly suggest that you get in touch with Dr. Steinberg over at Stanford for a second opinion. 80% is a pretty serious amount of blockage. In a simplistic analogy, imagine trying to use your sink with the pipe 80% occluded. I don't imagine it would be very effective or that it would supply you with enough water to the jobs it needs to. I believe that it works the same way with the brain.

I'll be praying for you as you and your husband make some very important decisions in the days to come and I really really hope you take my suggestion. It's one I think that most if not all of the "moyamoyaers" on this site would give you.

Jesenia

my daughter was diagnosed in sept 2008 with left side 100% blocked and right side 70-80% blocked. We left for Stanford for surgery on her left side Nov. 5, 2008 and she suffered 2 strokes on the right side during surgery that surgery. MMD can progress very fast and you can never know when that next stroke can occur. It was unpredictable that her right would 100% occlude at that time but we sure are glad that she was in a wonderful place for that to happen. God Bless Dr Steinberg and his team!

NEVER WAIT!!!!!!!!!!!!!!!! You need an MM specialest!!!!  Call Dr.Stineberg's team. He can give you advice on what steps need to be done. I would find a nurologest in you home town that knows more anout MM then the person you are seeing now.
I will pary for you and your husband. I hope you find the safest choice.
Becky

What does it mean to profuse the brain?

Michele

Shari,

Through the years I have kept myself updated with the neurosurgeons in the Chicago area that I would trust to handle MoyaMoya.  I highly do not recommend UIC at this time (see other posts elsewhere on this board).  I would say try U of C although, if I were in your shoes, I would send my films to Dr. Steinberg-it's free, get his written recommendation of how to proceed from here, and show this to your husband's present neurosurgeon (or a new neurosurgeon in the area) and go from there.  A good doctor will graciously take advice from another doctor that has more experience in cases like this.  Mine did.  I can understand that going to Stanford may not be an option, so this may be the next best thing.  Whatever you end up doing, arm yourself with information and facts about this disease so you can tell if a surgeon has enough experience with MM and you can feel comfortable with their advice/course of action.  

Please feel free to e-mail me anytime.
Lisa

Shari,

For what it’s worth, I learnt first hand, generally speaking, that teaching hospitals and the medical staff mean absolutely nothing when it comes to MMD. It’s experience and knowledge about “ the disease itself” that’s the most important factor. As I mentioned before, we were told we had one of the best medical staffs in the country here at the University of Pennsylvania. In fact, we had the head of neurology/neurosurgeons expert opinion, but sadly, they just didn’t have enough MM experience, and their one bad call cost my niece her future and any chance for a normal life. I agree they had an excellent medical staff and many brilliant neuro’s there, but they did NOT know enough about this rare disease. That's the difference in many hospitals throughout the country.

So no matter where you go, please remember that MM experience is so important. It saves lives. Like when Lisa posted her opinion about UIC, that was strictly her opinion, I grant you, but she too knows from experience the nightmares she experienced there from the lack of MM experience and only wants the best care possible for you or any new member.

I understand that Stanford isn’t an option for everyone. I wish it were. I think many here are simply saying that since Stanford is one of the largest MM referral centers in the world and Dr. Steinberg is a MM specialist with almost 600 successful surgeries to his credit, that if you requested a second opinion from him, you would then know if your concerns are valid and if you are on the best path for your particular case. We constantly see the battle with members trying to find a doctor with enough MM experience for successful treatment. That’s all we can hope for. I can’t wait until I see some guidelines/protocols set for MMD, so that experience and knowledge will be there for everyone that needs treatment, but until then, we’re simply trying to guide people in the best direction based on our experiences.

You and your husband remain in my thoughts and prayers.

Mar

You have to find someone with MM experence!!! I was missdagnosed for 6 months. I was seeing a nuologest who said i could not have MM since I was not asian! I was lucky and got a scecond opinion form some one who said it was MM. I got help from this sight and got a better nurologest. Don't be afraide to sent you info to Dr. Stineberg, he should be able to help you find someone in your area or give you info to the nulogest who you are seeing.
Becky

Hi Shari!!  I'm so glad you're getting that second opinion.  My daughter has MM and the neurosurgeon here in Michigan, who has MM experience, wanted to wait to do the surgeries.  I had already been on this site though and the one thing we didn't want to do is wait.  Emily had both of her surgeries performed by Dr. Steinberg and we are so very happy with the results and she is doing so well.    I hope everything works out great for you too!!!

-Audrey