Hi Amber    Welcome to our moyamoya family!

It’s really hard to say what to expect without knowing your specifics (like the degree of blockage, if any strokes, additional problems, etc) In that respect, MMD is different with each individual, but in EVERY case diagnosed, it means your brain in not getting the proper blood, oxygen and nutrients it needs, which leaves you at risk for a possible stroke. MMD is PROGRESSIVE, and why we urge people to see a MM specialist. A doctor who has the experience with this rare disease and can perform the best surgery suited for your particular case.  Unfortunately, surgery is the only eventual treatment for MMD to prevent a possible stroke. Although medications help in the treatment, no medications prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing, so there lies the danger.

My niece, at 21, had hardly any symptoms to expect a stroke, yet she had 4 devastating, life changing strokes out of nowhere. The doctors here in Philly said to wait to have surgery, they did not have the experience to treat her MMD, so we sent her films to a MMD expert for a second opinion, Dr. Steinberg at Stanford, where he said she should have the surgery immediately. He saved her life! So what I’m saying is, your doctor having experience with MMD is so very important!!! Equally important is to learn all you can about this disease, your Dad is wonderful for researching all he can, so when you have to make your decisions down the road, they’ll be informative decision and you’ll feel much more confident in dealing with this rare disease.

We’ll be happy to help you in any way we can. There is a wonderful group of people here to lend support, friendship and answer any and all questions you may have. No question is too small.

You’re in my thoughts and prayers Amber.

Mar