I just had to relate a story to all ... my co-worker tells me the other day that she went to her dry cleaners.  They were chit-chatting about the news that Katie Couric is going to CBS (my co-worker's husband works for CBS).  My co-worker said that she couldn't believe the amount of money they pay these journalists when, for the most part, all they do is read news notes that someone prepares for them (her words, not mine, so don't flame me if you have any issues with that!!).

Anyway, she adds that 'it's not like it's brain surgery or anything' and her dry cleaner replies with 'funny you should say that as my husband had brain surgery last year.  he has this rare disease and he could have had surgery in california or in new york and eventually had it in new york'.  

My co-worker said, 'if you tell me it's moya moya, I'm going to have a heart attack'.

And the dry cleaner responds, 'how do you know about moya moya?'



It just makes me wonder...how rare could Moya Moya be?  

Trina

hey i was thinking about this just the other day...
as far as "i know" (which is based on not much really!!!) there are about a handful of people in Australia with MM (diagnosed anyway..) but i'm curious as to whether there are more that i just don't know about....

i'm going to ask Laidlaw next week and see what he says...

but still.... no general medical practitioner in this country had heard of it and it's not really in any databases or textbooks....

so i guess more than anything, finding medical practitioners who know what MM is - is rare!!!

Hi All,
Yes I agree the medical world needs more education about MoyaMoya. My daughter is 26 and the MRI done at age 7 shows MoyaMoya when reviewed now but was not diagnosed then. I am hoping to look for some grant money to help fund medical education and diagnosis. Anyone wanting to help lets get a project going!
Best to all!
Bridget

Hi,everyone you don't know me but my daughter Jeanette has MM. I was just with her in North Lawrence,N.Y. She just had her second surgery. With in about fifty miles of her,she has found three other people with MM. I don't think it's so rare.
                            Her Mom'
                            Shirley

All,

We also need to remember a few things....doctors today are finally starting to become aware of MM and that TIA's may be related to more than precursors of strokes...hence, they are starting to look for MM.

For example, three years ago, when I had my first TIA, I had a MRI...no stroke, hence it must be stress. I visited with 9 different neurologists in my area and all said the same thing....STRESS.  Fast forward two years, I had my second major TIA, this time my new neurologist (who trained at Columbia Pres with Dr. Marshall and Connolly) knew enough to request the MRA along with the MRI. Although no evidence of a stroke was found, they did find the restriction in the artery.

Second, medical technology has increased dramatically over the past decade. The speed and resolution of today's MRI's/CT's/SPECTs are far better than they were ten years ago. My first SPECT scan took nearly an hour (it was a single head unit). The Spect scan I had last summer was over in less than 15 minutes (three heads and better resolution).


Mary Grace...
North Lawrence is just outside of the north western corner of the Adirondacks....(pretty much due north of Utica (almost to Canada), about three hours North of North West from Albany.


Shirley,

I went to college in Potsdam and spent many of weekends visiting friends in Malone....hence the only reason that I know where North Lawrence is. Give my regards to your daughter as that protion of NY is one of my favorites (yes, even with the mass amounts of snow).

Have a good evening everyone,
Greg

Hi Emily, my cousin who live in Australia have MM also but he choose not to surgery( don't ask me why), but here in Richmond VA, to my friends, relatives, neighbors, coworkers,MM is the 1st word they ever hear from me, and I'm the only MM patient with my neurology doctor so I think it's rare.

moody wrote on Apr 13^th, 2006 at 3:29pm:


really? where does your cousin live?

Hi,
My name is Wanda and my daughter Amanda was diagnosed with Moya Moya on 8-11-1990. She had 13 stroke in a 3 month peroid and a double bypass also in 1990 at Herman Hospital, Houston Texas.. She had to learn how to eat , drink and walk all over again. She still has a hard time with eating and she drinks using a towel and she lost her hearing and speech and she is vision impaired. We us (ASL) to talk to her. She is a angel sent from heaven for us. We thank God every day for her and bless any one who has Moya Moya. She is every smart, love to draw, paint and is pretty good at it. But I guess the thing that hurts me the most is she has no friends. So I do a lot with her but we both enjoy it very much . We have a lot of fun together. This year in June she will turn 25 yrs old. So I know we are lucky and so for she has been doing good and no signs of strokes. May God Bless you all.
April 17th 2006
Wanda