Hi Jennifer,
I first wanna say, there is no stupid question when you’re dealing with this rare disease, none of us have all the answers, cuz we ourselves have questions every day. But I want you to know that the facts are, to date, all research says the cause of MMD is unknown. MMD may have been seen in patients who had previous brain radiation or associated with other things and other disorders, but it has NEVER been proven in any research that any of them or anything is the cause of MMD. So, IMO, the fact that your doctor said that you caused it, or anything for that matter caused it, would certainly answer my question about that doctor, just from that statement alone.
As far as your question about “what makes a doctor a specialist or an expert?” We’ve had this discussion before and DJ worded it perfectly, IMO, when he said,
"I, personally, would consider someone a "specialist" that:
· Deals with moyamoya on a daily basis
· Does research, testing, studies, teaching on moyamoya
· Directs their practice towards the treatment of moyamoya, not just does the surgery because they can
· Does various versions of the surgery (i.e. EDAS, STA-MCA, EMS), based on each patients' case" Many neurosurgeons can do the surgery Jennifer, but do they have the experience with
"MM, the disease", and know what surgery approach is best for each individual particular case, based on their experience, research and dealing with this disease on a daily basis, such as Dr. Steinberg? The facts always speak for themselves when researching a specialist for MMD, IMO. Unfortuanately, there are only a few that fit that category.
That's my
, for what it's worth.
Keep the questions coming. In learning all you can, it will only help you make informative decisions dealing with this rare disease.
God Bless!
Mar
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