I certainly can’t answer your question directly, but I can say Dr. Steinberg is one of only two moyamoya experts in the country, with Stanford being one of the largest moyamoya referral centers in the world. So as far as the people here on this website are concerned, they most likely would send their films to him because they have already been diagnosed with MM or suspect a diagnosis of MMD and are seeking his expert opinion. Many patients with MM symptoms and their family members see the lack of knowledge and experience with this rare disease in the medical community, and seek a second opinion from Dr. Steinberg because of his expertise and his high rate of success in treating moyamoya.



Mar

The best way to put it, IMO is, if you have a MM appearance (puff of smoke) on an angio, it’s MMD. It’s that simple. See when you have MMD, you have narrowing of the arteries at the base of the brain and so you don’t get the proper blood the brain so desperately needs, so the brain tries to revascularize itself. It grows it’s own vessels to try and get the proper blood and nutrients it needs, and those tiny MM vessels that grew are the MM vessels that look like a “puff of smoke” on the angiogram. That's moyamoya, no if's and's or but's.

The sad thing is, many doctors do not have the experience with this disease yet and often steer the patient in the wrong direction. For example, they may say, well you have the collateral vessels (MM vessels) that are helping you with the blood flow to the brain, so they assume it’s ok to wait for treatment, but although they are helping you get blood to the brain, they are ABNORMAL, fragile vessels that can rupture or bleed. That is why every MM patient is at risk for a stroke with this disease. There lies the danger. My niece had four devastating strokes at 20 years old because the doctors here were so inexperienced with the proper approach to take in her case. This is a progressive disease; it gets worse over time, so prompt treatment is vital.

If you get a MM diagnosis BEFORE a stroke, you’re one of the lucky ones. Many are diagnosed after a stroke. This is a successfully treatable disease, IF the proper approach is taken.

If your hubby is diagnosed with this disease, please know you’re not alone and you have many wonderful people here who will help you in any way they can. Feel free to ask any questions.

Mar