My son has just been diagnosed with Moyamoya and I'm in a country with a very small pool of patients.  Does anyone know of surgeons in my country with experience in this or should I be looking internationally?

Hey Sally

We were faced with a fairly similar situation being in South Africa. Lucky for you there have been a couple of Australians on here and the doctors name that keeps coming up is Prof. Stoodley in Sydney.

One is 'Briellesmum'. Here is a link to her profile, unfortunately there's no email address attached and she hasn't logged on for awhile:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=724259555C5C55435D455D300

The other one I remember is 21widmoya. Her email address is sxc_chik182006@hotmail.com and here's the link to her profile:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=4348501111290

We weren't satisfied with the experience of any surgeons in South Africa and had Luca's surgery in the UK. If you do start looking internationally, drop me an email and I can maybe give you some pointers.

Best of luck. You'll get great support here if needed.

Stay strong
Mark (Luca's Dad)

Hi, I live in Australia (Victoria) and my 18 y.o. daughter was diagnosed with Unilateral Moyamoya this year. She had STA-MCA bypass done last June. Think there might be more Moyamoya patients in Australia than we think. Send me a personal message with any questions. Would be happy to help, if I can.

hi there, i'm 28 and was diagnosed with moyamoya 5 years ago. i had two direct bypasses in melbourne in 2005 and 2006.
my surgeon was mr laidlaw (through the royal melbourne hospital) he is excellent!
there are NO surgeons (or medical professionals at all) in queensland with any moyamoya experience. i know there is one in sydney but i can't remember the name. there is mr laidlaw in melbourne and also prof. stevens (experienced but not with direct bypasses). there is also a surgeon in perth i think.
there are a few people in australia with moyamoya but not very many, i'm fairly certain it's between 5 and 10.
i am more than happy to answer any questions/provide contact details etc.. i don't check this board very often but i'll look for replies to this topic or you can send me an email.
keep in touch!
emily

Have to agree with Emily. My daughter Emily had Mr Laidlaw as her neurosurgeon last year at The Royal Melbourne Hospital. He was great.

Hi Sally, Welcome to our MM family.

I’ve heard wonderful things about the MM experience of Prof Marcus Stoodley, Sydney Australia.
Here is the link to the thread under Surgeons with Bypass Experience where Prof. Stoodley is recommended.
http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1181213093

Experience with this rare disease is very important, so it’s good that you’re researching MM experienced neurosurgeons.  There is an enormous amount of info about MMD here on the website under links. My advice is always to learn all you can. Knowledge is power.

Keeping your son in my thoughts and prayers.

Mar