Hi firefli66, Welcome to our MM family!

The first thing you should do IMO, is learn all you can about this disease. It will help you feel more confident about the decisions you’re about to make. I'm sorry to hear you've been diagnosed with MMD, but you've come to a great place for support and information.

I don’t know how much you know about MM, so I’ll start by saying, MMD is a progressive narrowing of the blood vessels to your brain, so your brain does not get the proper blood and oxygen it so desperately needs, but what’s amazing is, over time, your brain grows it’s own blood vessels, to try and get the proper blood flow to it. These are the MM vessels they see on the Angiogram, (Puff of smoke) and how they diagnose that you have MMD. BUT these are abnormal MM vessels, and although they are supplying blood temporarily to your brain, they are weak and fragile vessels and they can rupture or bleed, which can cause a stroke. That is why surgery is so important. Simply put, the surgeries for MMD “bypass” the blockage to get the proper blood flow to the brain and therefore reduce the risk of a stroke. MMD is a progressive disease and delay in treatment (surgery) could allow unnecessary progression of this disease which puts you at a higher risk for a stroke.

It’s very important that your doctor have experience in treating MMD, to know if it IS in fact safe to wait for the surgery. We’ve seen medical professionals that do not have enough experience treating this rare disease, so they advise their patient to wait, and end up suffering a stroke. My niece was 20 years old and ended up having 4 strokes that left her in a coma and paralyzed. I don't want to see that happen to anyone. Please don't get me wrong, I don’t know your specifics or if you are having stroke symptoms, I’m simply saying please do not delay treating this disease.

I understand how overwhelming all of this information can be when you're first diagnosed, but that’s why it’s important to learn all you can about it. Please feel free to ask any questions you need to. We are like family here and will help you in any way we can.

Mar

"spells" are getting worse.  Getting so worn out from all of them.. TIA's everyday now.. and increasing on some days.  Got in touch with Dr Steinberg/Stanford Hosp about reviewing my case.. WOW! He emailed me within 20 mins with instructions of what to send to him.  Now just a waiting game for the Dr's to order the MRI's & MRA's to send him the films.. Hoping that BC/BS isn't going to give me a hard time about wanting the surgery out in Cali.