Sask enrolling

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

Sask enrolling

Postby 1eye » Thu Jan 12, 2012 4:07 pm

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Re: Sask enrolling

Postby Cece » Thu Jan 12, 2012 5:45 pm

I'm excited for this one! It's a large double-blinded 2 year trial, by an IR with experience with CCSVI patients, and Canadians get to be in it. Finally some love for Canadians.
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Re: Sask enrolling

Postby 1eye » Thu Jan 12, 2012 9:36 pm

I bet a lot of people with CCSVI are going to be pleased. This is a randomized placebo controlled trial. I'm sure there will be good blinding. If you are a Saskatchewanian who is going into this trial, be of good cheer, because a lot of people are cheering for you. I know what its like to be on placebo for 2 years. You can do it. You'll come through OK, in spite of the ravages that will be allowed to go unchecked. I don't know if they are planning to allow people to continue on DMDs, but even if they don't, DMDs are marginally (if at all) better than placebo anyway, when you aren't risking your life. I don't know what the inclusion parameters are, if they are taking PP"MS" people. If they want to reproduce Dr. Zamboni's work, they have to. I don't think there should be a washout period. That would delay things even more, and they are not testing a new drug, but a proven, safe procedure. If there are immediate results, you'll hear it argued that that was the DMD you are not on any more. The results, if they happen at all, will be obvious. Better than anything you ever got from a drug. I progressed while I was on placebo. Make sure you take care, get exercise, and follow cheerleader's program. It makes the treatment work even better.

You'll survive, you will go back on treatment, whatever that is, if the procedure doesn't work (fat chance), and you'll have the gratitude of a whole lot of Canadians. If it were me I'd be going back on nothing, no DMDs, which is what they have to offer. That's because of my SP"MS" status. I hope they run the trial on all pw"MS", and that by random chance, the number of SP and PP people who are in the placebo group is zero.

Restenosis: They will want to distinguish a treatment effect from placebo. One of the arguments is likely to be, that it wasn't restenosis, it was just placebo wearing off. I do think all should be followed after the trial ends. There are bound to be disputes when restenosis appears. I think that will be less likely as time goes by. My symptom relief lasted more than 1 year. Though I was treated 1.5 years ago, plenty of people have been treated since me, and there has been a lot of experience gained. I think by another 1.5 years, restenosis rates will be way down. For some it has lasted well, but it is still early. The use of IVUS will make things a lot better. The IRs will sort that out. JMHO.
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Re: Sask enrolling

Postby Robnl » Thu Jan 12, 2012 10:32 pm

First scientific evidence? :mrgreen:
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Re: Sask enrolling

Postby Cece » Fri Jan 13, 2012 11:34 am

Restenosis: They will want to distinguish a treatment effect from placebo. One of the arguments is likely to be, that it wasn't restenosis, it was just placebo wearing off.

Do you know if they plan to do additional procedures if restenosis occurs, or if it's just one-shot chance? I don't know how they'd be able to work additional procedures in and keep it sham/blinded. So I would guess that if patients restenose, they are left that way.

I can't help but compare it to how my treatments went: first procedure covered fully under insurance except for the travel expenses to NY, and then a second procedure where restenosis was found and treated, again fully covered under insurance. Yes, I'd pick that experience over being in a clinical trial, maybe getting two years of sham, and not getting treated for restenosis if restenosis occurs. But if I had no access to the procedure and couldn't afford to self-pay, I could only hope to live in Saskatchewan and be among those randomly drawn to participate in this trial.

It does get back to the conversations we had quite a long time ago, about whether or not a randomized controlled trial of CCSVI would be ethical. I can't imagine going untreated with my bilateral high-grade jugular stenoses, especially in hindsight knowing how much better I am post-procedure. If randomized controlled trials are necessary, then they are necessary, but it is a shame that obstructions in the outflow from the brain are not an obvious condition in need of treatment.

I bet it's the two-year time frame of the study that upsets me. Dr. Dake's proposed three-month study was an easier amount of sham-time.

I second what 1eye said in support and appreciation of those who participate in this trial!
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Re: Sask enrolling

Postby Cece » Fri Jan 13, 2012 5:05 pm

Though the Albany trial is expected to take two years, Wall is already strategizing. While saying he didn’t want to get ahead of himself, the premier did allow that “if we find any symptom relief for MS, treatments that work for the many who suffer—the 3,500 plus in this province—I think it will be incumbent on the province of Saskatchewan to provide those proven and efficacious treatment to those patients.” Those are compassionate words. They’re also fighting words, suggesting that Saskatchewan, the home of once-universal Canadian health care, could also be ground zero for furthering CCSVI science—and possibly providing new treatment for a mysterious, incurable condition that afflicts so many Canadians.

http://www2.macleans.ca/2012/01/13/sask ... al-trials/

From a Macleans article.
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Re: Sask enrolling

Postby 1eye » Fri Jan 13, 2012 5:10 pm

I'm with you on the restenosis angle. That, to me, is the most compelling evidence of efficacy. There should have been follow-up on the so-called medical touristes. Restenosis and symptoms should have been very much more closely monitored. "Wrong until proven right" is, and should not be, their creed.

But I credit the scientists with being humane enough to at least treat the symptoms of restenosis, as they occur, as well as they ever did with "MS". Also, I'm sure nobody ever has to stay in a trial against their will. At the same time I am not the right person to ask, when it comes to doctors behaving badly when crossed, which you might be risking if you dropped out. I'm sure most people stay on their doctor's good side.

My gratitude to all those participants. Get better!
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: Sask enrolling

Postby Cece » Tue Jan 17, 2012 10:12 am

http://www.lloydminstersource.com/News/ ... fault.aspx

According to this, FEBRUARY 24th is the deadline to apply to be in the trial if you are a person with MS living in Saskatchewan.

Anyone have a link to information on how to enroll? I'm not seeing that in the news articles.
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Re: Sask enrolling

Postby allyMcG » Wed Jan 18, 2012 6:14 am

My hope is that this trial in Saskatchewan, will prove what is now know in other parts of the world...
That many PWMS have narrowed veins, (found that I have four more than two years ago). That when opened, (blood flow is important) some symptoms improve & we feel better.
I read a post recently done by a woman who had this done. She said that the worst part of this treatment, was that she had to lay still for an hour & she had a bandaid on her arm.
Does that sound like a big problem to anyone out there? Not me.

She ended up able to walk witout hanging onto walls. I do this myself & call it "wallwalking". The internet is filled with testimonials done by those who have had this treatment done, (check U-Tube under "Liberation.)

The reason that this just has to be done locally, is because sometimes veins will re-stenose. In this case angioplasty needs to be repeated. How many want to travel to another country for a necessary medical treatment?
How many could affort to do this?
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