Does anyone have any surgical experience with this doctor.  I am told he is one of the best, but did not see his name on this list. 

My son Christian, 34, was diagnosed with MM in the first week of Aug.  He went to ER at our insistence when his mouth began drooping on the left side, and he had tingling/numbness in his left hand/arm and in his left leg.  He was referred to UT Southwestern in Dallas, but took a month to get him in.  He has had MRI, MRA, CAT scan, Arteriogram last Thursday, at which time they confirmed MM, right side predominent. (Middle right artery blocked, interior right 75% blocked, and anterior? right 30% blocked)  He is scheduled for blood flow study on this Thursday before we begin discussing treatment options.  Apparently he has had over a dozen strokes over time.  Two were new, the rest all much older.  His homocysteine levels are high and they have just started him on B supplements to bring that down.  He is on cholesteral meds and blood pressure meds, as well as low dose aspirin.  He is having headaches almost daily.

His neurologist mentioned that sometimes MM is treatable by medication, however, everything I've read suggest surgery is the option that minimizes any returning strokes  and increases the likelihood of a normal life returning.  Anyone have any info on meds that are effective?

He continues to work (HVAC technician) climbing ladders on commercial buildings and often alone on rooftops in the Texas heat.  It worries me greatly. 

He also continues to drink two/four nights weekly with his buddies.  He is currently on several meds and I don't think the alcohol is helping anything.  He says he has been honest with the doctors about this lifestyle.  Any comments/info from anyone on this?

I am very new to this disease....and hence all the questions.  Any additional info would be appreciated.

Hi Cindy, [smiley=wave.gif] 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

Ditto what Mar said, and I'll add that, in my experience, the greater risk is for ischemic stroke, and I take Plavix. It was prescribed to me after I had coronary stents inserted. However this is not a proper therapy for those prone to hemorrhagic incidents.

Apparently, his neurology doctor said that some symptoms can be treated with meds, not particularly the MM.  The neurosurgeon called yesterday and set an appt for 2 pm today.  They called the study center and said they needed his study at 11 read right away so that they could have the results for the appt. this afternoon.  Christian also said that he is not seeing Samson, but some other neurosurgeon whose name he did not have at present.  I have asked him to obtain copies of all his test results so that we can ask for a second opinion.  Guess I'll know more later today.  They seem to be moving very rapidly once we actally got him in to see them, so that is reassuring.  It's been less than two weeks and he is having his surgical consult.  I'll post again later

I've met Dr Duke Samson!  But I ended up seeing a doctor in Japan.  Even though Dr Samson suggested surgery, doctor in Japan didn't.  So, currently, I'm sticking with "no surgery" option, and been fine for last three and a half years.  Apparently, surgery for patients who had hemorrhage doesn't help much.  We just have to wait for research to advance in order for this disease to be treatable :D