My friend wife has been diagnosed with the disease and require surgical procedure to be done soon since she had hemorrhage. It required fluid to be drained for past week and a half.  Although she requires surgery, it has been difficult to find the doctor and neither the hospital nor my PCP has provided definite answers on what to do next since it is first time they have patient with this disease.  I would really appreciate any inputs, suggestion as well as option available (i.e. traveling to Standford or oversee) to get right treatment.  Thank you.

I would suggest a specialist, ESPECIALLY if her doctor has never treated a Moyamoya patient.  If travel is n option I would suggest Dr. Scott or Dr. Steinberg.  Sending films to the doctors is the first step.

Dr. Gary Steinberg contact info.
If you want to contact them please use Teresa's email   teresab@stanford.edu
http://med.stanford.edu/profiles/Gary_Steinberg/

Dr. Michael Scott contact info.
http://www.boston-neurosurg.org/faculty/scott.html

CaptKim2008 wrote on Nov 13^th, 2008 at 1:44pm:

Yes, that's correct, without a doubt!!(IMO) There are sooooooo many important factors to consider with this disease, and every single factor is where the “expertise” is so vital. I’ve seen in many cases at the very first moment of diagnosis, there’s a life and death decision made, simply by how their doctor approaches their case. The important factor being whether they take an aggressive or laid back approach. I’ve seen that one single decision alone destroy lives, simply because they didn’t understand or know enough about this disease and took a moderate approach to a progressive disease.  Understanding this disease and what it’s capable of is so important!

As far as surgery goes, I would bet ANY good neurosurgeon can perform the surgery, but do they have enough MM experience to know which surgical approach is best? One type is the “direct” surgical approach where you get immediate blood supply and the other is the “indirect” approach, (this approach may take 6-12 months before new vessels and blood supply can develop) so these crucial decisions should be based on knowledge and experience and what’s best in YOUR particular case, not just because they can do the surgery.

You’ll find there are many other important factors as well, from all the testing on down to the pre & post surgery. As you mentioned, anesthesia with a MM patient is a totally different protocol from other patients, So YES, the best team/group who has experience with this disease is the way I’d wanna go, most definitely! Generally speaking, there are risks with ANY type of surgery, but when dealing with a rare disease, I would want someone like Stanford, whose staff/MM team has the MM testing and procedures down to a science, and Dr. Steinberg, who has 500 successful MM surgeries to his credit. My family is from PA, and thanks be to God, we were able to make it to Stanford where they had MM experience. Unfortunately, I can’t even suggest a doctor in NYC with credentials even close to that, but I pray for the day when I can.

Mar

CaptKim2008 wrote on Nov 13^th, 2008 at 1:44pm:

Almost all of the information I've read about the importance of an anaestheologist's experience with moyamoya has to do with children and surgery.  Haven't seen much emphasizing this point in adults.

Anyone seen anything different?

DJ