Hi Jim, Welcome to our MM family.
I have to say first, that you’re very wise sensing the urgency with MMD. We know a stroke or hemorrhage is coming with this disease, we just don’t know when it will be, so when a doctor doesn’t aggressively treat a case with warning signs such as Samantha’s, to try and avoid that stroke/hemorrhage, it’s usually because they do not have enough experience with this dangerous, rare disease.
This is a PROGRESSIVE disease, and
NO medications stop the arterial “narrowing” process from progressing or the MM vessels from developing. There’s the danger! So, you are absolutely right; IMO, to approach this aggressively, and you’re on the right track getting a second opinion from a MM specialist, then you’d know exactly where you stand and the best path to take for Samantha’s case.
As I understand it, Paula is correct, the quickest way to get in touch with Dr. Steinberg, is to
contact Teresa, his right hand man, so to speak. Her email is:
teresa@stanford.edu
Contact her ASAP. She’ll tell you everything you need to know and what to send and where to send it. She knows this disease and what it’s capable of. Stanford, IMO, has the best MM program currently in place anywhere, and is one of the largest moyamoya referral centers in the world.
Anyone I know who’s had successful surgery before a serious debilitating stroke, has been aggressive in their care and fought in some way to get that proper care. I can only commend you for learning all you can and taking an active and aggressive approach. Continue to learn all you can. Knowledge is power when dealing with a rare disease. It may save her life.
Feel free to ask any questions. We’re like family here. We’re with you every step of the way! You’re not alone.
My prayers are with you both.
Mar