Hi Denise,

I’m from Pa, the suburbs of Philly, and I’m sorry to say that it’s been my experience over the years that they know very little about MM in and around my area. I can’t speak for all areas in PA, but there isn’t very much said about PA in the to safely suggest someone for you.

As far as a “MM specialist” goes, I’ve noticed many new members using the words “MM specialist” lightly on the board as of late, and I have to say again, the statement “MM specialist” should be defined clearly, so you’ll know there is definitely a difference. ”Although doctors are learning more and more about this rare disease every day, thank God, and some are successful in treating this rare disease, the fact is, there are only a few “MM specialists” in the entire country, if you define a MM specialist as we have here. We consider the following criteria to be a MM specialist. One who…

·      Deals with and treats 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 and has experience with the various versions of the surgery (i.e. EDAS, STA-MCA, EMS), based on each patients' individual case.

Many neurosurgeons can do a surgery required to treat MMD, but do they have the experience with MM, “the disease itself” is what’s so important for success, and unfortunately many in the medical field do not fit the criteria as a MM specialist, and experience is so important.

In our families case, the doctors here at the University of PA said they knew about MMD, and that my niece should “wait and see”. Wait for what?? Long story short, she ended up having four debilitating strokes because we didn’t know this was a progressive disease and that surgery was the ONLY treatment to avoid a stroke. So it’s important we learn all we can about this disease, and to get doctors that have experience with MM to make the important calls needed in treating this disease.

I’ve learnt over the years, that the majority of patients, who have been successfully treated for this rare disease, had to be proactive in fighting for their case, and in finding a doctor with real MM experience. Unfortunately there is not a set of guidelines or protocol yet in treating MMD, so if you can't get a MM specialist, at least try and get a doctor with as much MM experience as possible. Don’t be afraid to fight for the best care possible for your daughter’s case, even if it takes a second, third, or fourth opinion.

My thoughts and prayers are with you. If we can be of any help, please let us know.

Mar