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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Drury
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Post by Drury »

People take risks on unproven procedures all the time - Botox swept in and no trials have ever been performed to my knowledge. Makes lots of money though!

Yes trials are necessary but I just do not understand why CCSVI brings about such venomous rhetoric from so many medical professionals. I am mystified why a procedure that is relatively safe with a possible upside to MS patients has been held to the flame so readily.

Just does not make sense.

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coach
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Post by coach »

I have a suspicion its a case of "follow the money". Of course that's just my opinion.
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:39 pm, edited 1 time in total.
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Post by scorpion »

Good point Lyon. I never thought of that but with people being so sue happy what doctor in their right mind would perform a surgery that has not been proven.
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Post by 1eye »

Right now the biggest related cases I have heard about are a class action against people for offering Liberation and a Human Rights case in Canada.
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1eye
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Post by 1eye »

What doesn't make sense to me is that it is not being offered to the 1 a day in Canada and 10 a day in the US who are on their deathbeds anyway. I think their co-operation will be there, and all the legal documents will be air-tight. I also think fear-mongering has been a problem, and I would like to see (maybe from Kuwait?) a paper published on the safety of Liberation.

People on this site could speak very compellingly on the very very very rare pitfalls.
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"I'm still here, how 'bout that? I may have lost my lunchbox, but I'm still here." John Cowan Hartford (December 30, 1937 – June 4, 2001)
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:39 pm, edited 1 time in total.
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:39 pm, edited 1 time in total.
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Drury
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Post by Drury »

Lyon,

I am not sure I would call it a cult following. I would have said people who are desperate and willing to go to extreme lengths to have some control over their disease.

I am not buying the suing thing. People have procedures everyday that could have adverse side effects even when proven. In the meantime 5 more cases of PML from Tysabri.........

I just do not understand why a potentially new medical breakthrough has not been embraced by the medical profession and given every opportunity to be tested until proven otherwise

Could it be that CCSVI was discovered by a doctor in Italy and that is just too much for all the highly esteemed establishments to bear?

1eye

Absolutely.

Drury
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eric593
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Post by eric593 »

Yes, but even with a guesstimate of about 1/2 restenosing and perhaps needing further ballooning, the CRABs only work about 30% of the time, so having restenosis occur half the time doesn't seem so bad when 50% have their veins remain open, whatever benefit that may result in. 50% failure rate doesn't seem so terrible in light of the CRABs only helping about 30% of the time.
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Drury
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Post by Drury »

Lyon,

Good points but are there any proven treatments that ALWAYS work?

eric593

Those were my next points thanks.

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Drury
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Post by Drury »

It was over a 100 years ago that the vascular theory surfaced and technology is finally able to allow us to pursue it.

Don't you think its about time?

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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:38 pm, edited 1 time in total.
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:38 pm, edited 2 times in total.
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Post by Cece »

Lyon wrote:Not to be pessimistic but in the name of accuracy, "liberation" has yet to prove to EVER "work".
What about Dr. Zamboni's endovascular treatment trial? He got positive results.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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