Is this a good idea?

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

Is this a good idea?

Postby greenmtns » Wed Mar 30, 2011 12:45 pm

Could there be some sticky's that have 6 month-12 month-18 month-24+month after CCSVI surgery. That way we could see how people progress through each of the time periods and see the results. Maybe alot of people that are doing good or bad might change through the period of time. Sort of long term effects type thing.

Just kind of thinking out loud is all. I know I am new here but it seemed like it would be helpful in order to make an informed dicesion.
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Postby PCakes » Wed Mar 30, 2011 1:31 pm

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Postby greenmtns » Wed Mar 30, 2011 3:01 pm

It kind of helps me. I like testimonials my self.
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Testimonials versus numbers

Postby fiddler » Wed Mar 30, 2011 3:10 pm

Testimonials are interesting, but there are a lot of them and it's easy to be led astray by stories that are more dramatic or story-tellers that tell their tales with more conviction. It's better to analyze the numbers on http://www.ccsvi-tracking.com because, even though these are self-reported and only account for about 5% of people treated worldwide, they are some of the best aggregate data we have, so far, about the impacts of CCSVI treatment.
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Postby greenmtns » Wed Mar 30, 2011 5:02 pm

That is true and makes sense.
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Postby Cece » Wed Mar 30, 2011 5:19 pm

I have some difficulty reading the tracking thread, I find testimonials to be easier to follow.
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Tracking thread

Postby fiddler » Wed Mar 30, 2011 6:42 pm

Yes, I haven't read (or posted to) the tracking thread in months. But I do check the statistics on http://www.ccsvi-tracking.com pretty well every day. For the last few months the overall results have held quite steady: over 2/3 of people treated are seeing marked improvements (especially in fatigue, but in other symptoms as well), while most of the remaining 1/3 are seeing no change. Before I was treated, I tried not to hope for more than no change, so the improvements I've seen have been a big bonus.

Now that we have so many treated (13,000?) I find the stats on the tracking site the best way to keep up. The timeline graphs seems to show that people are generally reporting stabilization of their improvements into 10 months (which is as far as that graph goes, to date), so that is also heartening.
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