Hi Cindy,
Welcome to our MM family!
I’m sorry to say I have no knowledge about the doctor you mentioned, however, I would like to say there isn’t a whole lot of doctors out there with a lot of MM experience and that’s very important!! The majority of patients who have been successfully treated for this rare disease had to be proactive in finding a neurosurgeon who has the experience needed for their case.
I’d also like to say that if your son's doctor said MM is sometimes treated with medication, red flags should go up immediately and tell you that this doctor does NOT have a lot of MM experience.
MM is a PROGRESSIVE disease. It only gets worse over time. The progression is different patient to patient, some faster than others, but never the less; you’re always at risk for a stroke. The symptoms you’ve described your son as having, are TIA’s (mini strokes), warnings of that stroke/hemorrhage that comes with this disease, and
the ONLY successful treatment for MM is surgery. You know a stroke is coming with this disease, you just don’t know when. Without surgery, the majority of individuals with MM will experience mental decline and multiple strokes because of the progressive narrowing of arteries, and without surgery, this disease can be fatal as the result of intracerebral hemorrhage.
I am not a doctor and I don’t know your sons’ specifics, but IMO, from what you’ve described, your son should NOT be drinking a lot either. Drinking dehydrates a MM patient and puts you at a much higher risk for a stroke. With MMD, your arteries at the base of the brain narrow and close off, so you do not get the proper blood/oxygen and nutrients to the brain, which is why your son has had strokes and is experiencing these warnings. Surgery bypasses the blockage to get the proper blood to the brain to avoid that inevitable stroke/hemorrhage or death. An experienced MM neuro would know this and what type of surgery would be best in his particular case.
I urge your son to learn more about this disease and the facts will speak for themselves. He’ll see the urgency of getting to a MM experienced neuro ASAP. He’ll learn that
MMD is a successfully treatable disease with a good MM experienced doctor. He can always mail a copy of his films to a MM specialist for a second opinion, and after reading the films, he’ll contact him with his expert opinion so he’ll know what path to take.
Please feel free to ask any questions. No question is too small, and read, read, read, to learn all you can about this disease.
You both will be in my continued thoughts and prayers.
Mar