Hi,

I have an appointment at Yale on Wednesday with Dr. Balsari who is the moyamoya specialist there.  My Aunt is coming up from Florida to go to this appointment with me.  If we do not get the answers that we are looking for from Yale we are going to get up to see Dr. Scott in Boston and possibly then to Dr. Steinberg at Stanford.  I have been working with the Yale Neurology group for the last year seeing Dr. Susan Spencer who has recently passed away unexpectedly.   :'(

A friend of mine is diagnosed with L.E.M.S. (Lambert-Easton myasthenic syndrome) and has gone to the Mayo Clinic in Minnesota and had really great results.  Does anyone have any information on any Moyamoya specialist's there?  If so, please let me know.  Thanks much!!

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

Does anyone have any information on any Moyamoya specialist's there?  If so, please let me know.  Thanks much!!

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.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1099429647

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

Waz,
I had my surgry done by Dr. Fredric Meyer. I had the STA-MCA bypass and encephalomyosynangios.  He makes sure you ONLY loose the nessasary hair for the surgery. He also talks to like you are human not a hunk of meat to be experimented on.  The nicest group of people I have ever had the pleaser of working with.

Contact Info: Secretary 507-284-5317
                    Nurse       507-284-2820
                    His Voice mail 507-284-2511
                    Fax           507-284-5206

Dr. Meyer's Office Address
200 First street SW
Rochester, Minnesota 55905

I hope this helps,
Becky

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

Congratulations on getting a referral to Dr. Scott!!!  I believe you are on the right path!  Good luck, I will be praying for you!

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

At least I got a referral out of him to see Dr. Scott in Boston........

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)

Thanks Guys,

I got in touch with Dr. Scott by email yesterday evening and he said that they have an age and weight limit at the Boston Children's hospital, so I told him how old I am and what I weigh and am waiting to hear back as to whether they can take me or not.  He also said that if I do not meet the qualifications for BCH he will refer me to a colleague at Brigham Women's Hospital in Boston that we works closely with...so it is a waiting game now.  I will keep you updated as to what I hear.  Thanks all.


-Waz   ;)

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  [smiley=twocents.gif]

I am totally up to go see Dr. Steinburg, my Aunt is willing to do whatever she needs to in order to help me get this taken care of.  I live in CT and it would be much easier for me to do the Boston thing but want to have the best care I can get.

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!!   :D

-Waz

I just a call from Dr. Day's assistant t Brigham and she has set me up for an appointment to meet with him on July 29th at noon.  They are going to send me a new patient package tomorrow, they need all my charts, scans, notes, etc. put on a disc and sent out which I will get tomorrow....moving right along!!  

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

thank you very much Audrey, I made an appointment yesterday with Dr. Day at Brigham Hospital in Boston for 7-27...we will see how that goes and move on from there.   :)