This Is MS Multiple Sclerosis Community: Knowledge & Support

Story about me and my brother going to Poland on CBC national tonight.
(Also covered in today's Globe and Mail)

We're trying to bang the drum!

...Might be the only wake to wake up local IRs, etc.

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

The attached 2 CBC reports seem to cover your story...interesting that CBC will accompany you to Poland...all the best!

http://www.cbc.ca/canada/ottawa/story/2 ... rgery.html
http://www.cbc.ca/ottawamorning/archives.html

Great radio interview. Good going on that, and having a CBC crew go to Poland with you. I look forward to the National tonight - more than usual.

All the best to you and your brother.

_________________
My name is not really Johnson. MSed up since 1993

Really fantastic interview. Well-spoken, intelligent, measured and analytical as you explain your reasons for heading to Poland.

I'm proud to have you as a fellow CCSVI'er.

All the best to you guys!

Wonderful interview. We all all cheering for both of you.

nice work, d!! The more we keep this in the public eye, the better. It's just not going to go away.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I saw your story in The Globe and Mail. Very impressive! Full page!
Good luck to the both of you!
a

Saw you on the 6pm news (CBC). Way to go! The drum just keeps getting louder.
jo

_________________
Katowice, April 7/8

I'll be watching CBC National tonight for sure-- best to both brothers!

Enjoy my brother's blog-post on Dr Marrie's comments on the risks of our procedure - "DEATH! – a big, yet small, risk":

http://evanthornton.wordpress.com/2010/ ... k/#more-60

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

Gee, like this "risk of death" would be new to us from our treatments?

Watched your story last night! Glad to see you were both on the computer on TIMS during the shooting, ha ha.
I also noticed that the 'death' that didn't happen was mentioned once again.
Best wishes!
a

We stayed up late to watch it too. Your kids are so cute!

How old was that neurologist who clumsily delivered the party line that there was one death - 18?

Actually, that's Dr. Ruth Ann Marrie, the Director of the HSC MS Clinic in Winnipeg. But even if I knew how old she was it would be rude to speak of a woman's age in public... (although I might add Dr Marrie has also publicly questioned Dr Zamboni's ethics for performing the liberation procedure on his wife - although of course it WASN'T Dr. Zamboni who performed the procedure).

But here's what makes me most cynical about the HSC stand on the liberation procedure. I left a message with my neurologist (who works along with Dr Marrie) about my plans to see Dr Simka. If he thought it really was a significant danger, surely he would have been *ethically obliged* to call and tell me that?

And aside from the whatever the dangers are - there probably aren't much more than 300 people in the world who've have this done. If one of them was YOUR patient, wouldn't you at least be CURIOUS?

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

dunkempt wrote:
And aside from the whatever the dangers are - there probably aren't much more than 300 people in the world who've have this done. If one of them was YOUR patient, wouldn't you at least be CURIOUS?
(if I could figure out how to use the 'quote', I'd use it!)


I totally agree! I said that from the first time I heard CCSVI being dismissed by doctors. I thought, aren't you even curious to see if one or two or three of your patients have this condition??

I suppose, sometimes you don't ask questions you don't want to know the answers to.