MS patients warn of complications after CCSVI treatment

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Cece » Tue Nov 16, 2010 8:59 am

cheerleader wrote:The difference between going to Stanford University and a clinic in Cabo is huge. The difference between participating in a clinical trial and spending your life's savings on a procedure that is not one-time for many is huge. I thought this was self-evident. But it's not....
cheer

MS can get pretty desperate, desperation makes us gamblers. :(

I think we need to keep emphasizing that this is not a one-time procedure and that there is a risk of ending up worse (mainly with no aftercare and post-procedure clotting complications despite the blood thinners) and financially broke too. The doctors don't know the full risks but it seems as if proper after-care mitigates the risk. The worst stories now seem to be coming out of Canada, where there is the worst aftercare situation.
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Postby bluesky63 » Tue Nov 16, 2010 9:43 am

Medical "tourism" is not unique to MS. What happens to people who have complications from other overseas procedures? Are they also told to go back to their original clinics, or are they treated in Canada for emergency complications? The investigative journalist in me is wondering how to find this out.
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THIS Sums it up - Canada is to blame

Postby Gordon » Tue Nov 16, 2010 9:51 am

Not the poor souls whe need help !!

cheerleader wrote:Marc's right....the Canadian situation spawned lots of tourism (check out the "Free CCSVI informational meeting" ad on the general thread),
This was the predictable outcome of the Canadian health ministry's refusal to test and treat for central venous occlusion. In the US, our IRs have been able to test and treat and in most cases patients have been able to receive good care and follow-up.
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Postby Cece » Tue Nov 16, 2010 10:22 am

bluesky63 wrote:Medical "tourism" is not unique to MS. What happens to people who have complications from other overseas procedures? Are they also told to go back to their original clinics, or are they treated in Canada for emergency complications? The investigative journalist in me is wondering how to find this out.

I think this is worth finding out.
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Postby esta » Tue Nov 16, 2010 11:10 am

yes, i am canadian
yes, i went abroad,
yes, i returned abroad again and now have a stent
yes, i am worried
BUT there's the private clinics-False Creek-dr. godley in bc
he was outspoken, what about dr sandy mcdonald in ontario
he knows how successful the procedure was?
perhaps we have to start with them.
that's my next alternative. wish me luck...am i hangin on a very small limb?
yes, but i think instead of being a victim, its about just getting the job done and standing proud.
we're letting big pharma get its tenacles in, wherevere , however they can,i say
NO, WE MUSN'T WAIVER, WE MUST KEEP UP THE FIGHT.
the changes are mostly significant for us, its a conspiracy...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby happydance » Tue Nov 16, 2010 5:43 pm

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Postby scorpion » Tue Nov 16, 2010 5:51 pm

esta wrote:yes, i am canadian
yes, i went abroad,
yes, i returned abroad again and now have a stent
yes, i am worried
BUT there's the private clinics-False Creek-dr. godley in bc
he was outspoken, what about dr sandy mcdonald in ontario
he knows how successful the procedure was?
perhaps we have to start with them.
that's my next alternative. wish me luck...am i hangin on a very small limb?
yes, but i think instead of being a victim, its about just getting the job done and standing proud.
we're letting big pharma get its tenacles in, wherevere , however they can,i say
NO, WE MUSN'T WAIVER, WE MUST KEEP UP THE FIGHT.
the changes are mostly significant for us, its a conspiracy...


What in the world are you talking about?
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Postby beerduff » Tue Nov 16, 2010 9:05 pm

You have to look at the big picture, would you have advised the Farrell family that it would be better to stay at home.
Believe me there are lots of Barb Farrell's in Canada.
I do agree people with milder symptoms of MS should hopefully wait for the system in Canada to get it's act together.
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Postby cheerleader » Tue Nov 16, 2010 9:39 pm

beerduff wrote:You have to look at the big picture, would you have advised the Farrell family that it would be better to stay at home.
Believe me there are lots of Barb Farrell's in Canada.
I do agree people with milder symptoms of MS should hopefully wait for the system in Canada to get it's act together.


Actually, the Farrells stayed relatively close to home in North America because her condition was so fragile....Dr. McDonald was ready to treat her at home, but was shut down. Barb also has an ongoing relationship with Dr. McDonald, who is monitoring her with doppler technology and follow-ups. She saw one of the best IRs, and is being treated by doctors who have worked with Dr. Zamboni. She had severe venous stenosis throughout her body. Many people believe that Canada needs to take care of Canadian citizens which is we support Angioplasty for All.
http://www.angioplastyforall.com/
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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