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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Frustrating being Canadian with MM

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Frustrating being Canadian with MM (Read 3695 times)

Canadian_Girl

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I love YaBB 1G - SP1!

Posts: 46
Canada, canada, 340, 346, ON, Ontario
Gender: female

Frustrating being Canadian with MM
Sep 7^th, 2004 at 6:43pm

It is very frustrating living in Canada and having MM. We do not have the doctors who specialize in MM. Insurance will not cover into the U.S. We have just made our 1 year anniversary with this disease, with only one minor TIA (knock on wood). My husband has been back at work now, coming up on 9 months. Sorry to vent, I just needed to get that out! Thanks! DJ, you rock!!!

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CarasMOM

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: Frustrating being Canadian with MM
Reply #1 - Sep 8^th, 2004 at 2:23am

Hang in there Canadian Girl. Roll Eyes

...something will open up for you at the right time !!! I was on a website that was for cochlear implants...and many were from Canada experiencing long waits to get their cochlear implant and they wanted to come to the US to get them done, too...but insurance wouldn't cover....but eventually time flew by and they were able. I'll pray that "a mm surgeon decides to take a vacation to Canada" and trains surgeons to do that" for you !!!! While this is a rare disorder...it seems to be growing. Tight hugs, CarasMOM

Warm Hugs and Prayers, CarasMOM (Carol)

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Annica

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My daughter lives with
mm

Posts: 173
Stockholm, Sweden, europe, 317, 154
Gender: female

Re: Frustrating being Canadian with MM
Reply #2 - Sep 8^th, 2004 at 12:48pm

Hey Canadian Girl!!

Do I know what you´re talking about and how you´re feeling?? FOR SURE!!!! Living in Sweden (a whole continent away, and being unable to read all the info in your native language) with this disease is HELL Sad

sometimes!! I really tried to invite Dr. Scott to Sweden two years ago and he patiently described to me how he needed his own staff and own equipment to perform surgery...... Certainly I knew that but I was so desperate...
So if you need to vent this subject I´m here for you ; Grin

And I really second you on DJ, I´m one of his biggest fans and without him and this site I´d probably be broke on "shrinks" (sp.....)
or totally alone in this world after wearing all my family and friends out.... Undecided

Love you all.... Kiss

Annica

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tomg

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West and wewaxsation at
wast. What I crave.

Posts: 216
HowellNJ, USA, usa, 499, 119, NJ, New_Jersey
Gender: male

Re: Frustrating being Canadian with MM
Reply #3 - Sep 13^th, 2004 at 2:43pm

Hi, I don't know where in Canada you are but Mcgill University Hospital in Montreal has a world renowned neurosurgical department. My brother is a surgeon and did his pediatric surgery residency there, He said to give them a call and you'll most likely get the help you need.

Take care and Pray for guidence, Tom Gallucci

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icepick New Poster Offline I love YaBB 1G - SP1! Posts: 3 bergen, Norway, europe, 244, 119 Gender:	Re: Frustrating being Canadian with MM Reply #4 - Oct 4^th, 2004 at 12:04pm hei canadian girl,i understand just how you feel,beiung in norway,where they haven't evebn heard ogf this.but i would advise you to call the calgary stroke research centre and talk to dr.alstair buchan.i have a strong hunch he can help you out!!! ;
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E_K

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Toronto, Canada, canada, 387, 400, ON, Ontario

Re: Frustrating being Canadian with MM
Reply #5 - Oct 7^th, 2004 at 4:04pm

Hi, I live in Canada, and have MM myself......I totally understand what you're feeling...
I am an adult, and have had it for over a year....

If you're a mother of a child who has MM, there is a doctor who might be able to help out at the Hospital for Sick Children in Toronto. I got a lot of information from him, (sorry, I cannot remember the name... but he is originally a practicing neurolosergion in Japan, and now working here).

If I were a child, he could have helped me, but i'm a grown up! But, maybe, if you have a child who has MM, it's the best hospital to at least try to go visit around here.

Warm Regards,

EK

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icepick New Poster Offline I love YaBB 1G - SP1! Posts: 3 bergen, Norway, europe, 244, 119 Gender:	Re: Frustrating being Canadian with MM Reply #6 - Oct 7^th, 2004 at 6:44pm hi ek and Cgirl dr.alastair buchan of the fotghills ,medical research facility in calgary is a known nwurosurgeon with adult mm surgery.maybe you can contact him.i have also heard of one in toronto,but unfortunately i don't know his name.all the best
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