Hi Sabrina’s Dad,
Welcome to our MM family!
You asked about the quality of life with MMD, do you mean with or without treatment? Without treatment, I’m sorry to say, with MMD a stroke is coming, we just don’t know when it will happen. This is a progressive disease, which means it gets worse as time goes on, so you’re always at risk of a stroke with this disease. The progression differs with each patient, some faster than others, but never the less, the arteries to your brain narrow and close off, so your brain does not get the proper blood, oxygen and nutrients it needs, and that’s a stroke/hemorrhage or even death waiting to happen. That’s why prompt treatment is so vital, and surgery is the ONLY treatment for MMD to help avoid that stroke or death. Surgery introduces new blood flow to the brain by either “direct” or “indirect” bypasses, which lessens the chance of a stroke. No medications stop the arterial “narrowing” process from progressing or the MM vessels from developing.
With treatment, you have an EXCELLENT chance at a normal, healthy and quality life,
IF you get the proper treatment with a doctor who has experience treating this disease.
We often see lack of experience with this disease in the medical community, so our advice is always to learn all you can about MM, so you can’t be steered in the wrong direction. For example, many doctors without MM experience, have their patients "WAIT and see", and then unfortunately a disasterous stroke, as in my family's case, then it's too late, the damage is done. Delay in treatment is the particular pitfall we see most often.
It may be wise to get copies of all your daughters’ films and have a MM specialist review them for his expert opinion. A second opinion is always very wise when dealing with a rare disease. Now a day, you simply mail the films for review and they contact you with their expert opinion, then you would know if you're on the best path for your daughter’s case.
There are "two" MM specialists in this country that deal with this rare disease on a daily basis. One is Dr. Michael Scott, in Boston, he’s a pediatric MM specialist and of course Dr. Steinberg, at Stanford, CA. He’s BOTH pediatric and adult MM specialist.
I am not a medical professional, so please take my advice for what it’s worth, but over the years I’ve found that children are resilient and just blow me away at how well they do. It's amazing. So, you’re on the correct path learning and asking questions. That’s a great start. Please feel free to ask anything, no question is too small. Many have traveled the same road and understand your fears, so we want you to know you’re not alone.
You'll be in my thoughts and prayers.
Mar
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Newly diagnosed MM for 6 year old daughter (Read 4647 times)
