Waz wrote on Jul 6^th, 2009 at 9:04am:

I’m sorry I can’t answer you as to whether there is a MM specialist at the Maya Clinic or not, because it depends on what you mean by a MM specialist? We’ve had this discussion before in our forum and DJ worded it perfectly I think, when he said, he considered someone a MM "specialist" that:

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

Any good neurosurgeon can do the surgery, but do they have experience with "the disease" itself and all it's important factors? Many doctors may now be diagnosing more cases of MM and treating them, but IMO, it does not make them a MM specialist unless they have the credentials as stated above. I’m sure there are doctor’s that successfully treated MM, but the two doctors’ you mentioned seeing, Dr. Scott and Dr. Steinberg who have successfully treated hundreds of cases, are the only two moyamoya specialists’ that I am aware of, with those type of credentials and fit the above criteria, here in the USA.

I wish you all the luck in the world with your appointments. You'll be in my thoughts and prayers.

Mar

http://www.mayoclinic.org/neurology-rst/cerebvascgroup.html

Well that was a total waste of time  

I had more information on this before I walked in there and left the office feeling so horrible...he sat with us for about 10 minutes, took my pulse, had me walk in a strait line, do a 360 and stick my tongue out....that was the gist of the appointment.  At least I got a referral out of him to see Dr. Scott in Boston so I will be getting in touch with that group and moving forward from there.  Thanks for all the warm wishes, thoughts and responses.

-Waz

Waz wrote on Jul 8^th, 2009 at 1:50pm:


Hey Waz

This is great, I think your time was well spent. Good luck with Dr Scott, although I've heard some rumblings about the way potential patients are being treated at his practice. I'm not privvy to reveal any more detail than this right now and I also know there's two (or three) sides to every story.

Good luck and keep us updated
Mark (Luca's Dad)

If Dr. Scott won't take you, DON'T hesitate to see Dr. Steinberg...he is the only other SPECIALIST I would trust to do the surgery.

Just my 

Hi,

I heard back from Dr. Scott @BCH and he told me that he would be unable to treat me due to my age (29).  He stated that he can now only see new patients that are under the age of 21.  He recommended that I contact Dr. Arthur Day at Brigham Hospital in Boston, I sent him an email and will wait and see what he comes back with.  In the meantime I am going to try and get some information to Dr. Steinberg and go from there.

Getting closer!!   

-Waz

I just wanted to say that my daughter has MM and had both surgeries last summer.  It took me years to just get an MRI because they (neurologist and geneticist) had her do those simple "in office" neuro tests and she was fine even up to the day before surgery.  She had almost no blood flow to the right side of her brain!  She is doing really well.   I am so glad that you have got things rolling!!!  I hope things work out just as well for you.

-Audrey