MS vein-opening trial announced for B.C. and Quebec

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

MS vein-opening trial announced for B.C. and Quebec

Postby oreo » Fri Sep 28, 2012 8:35 am

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Re: MS vein-opening trial announced for B.C. and Quebec

Postby PointsNorth » Fri Sep 28, 2012 10:34 am

Great. A Neuro/MSSociety collaboration. Surely they will find exactly what they are looking for?!
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby 1eye » Fri Sep 28, 2012 8:02 pm

Surely this is where the rubber hits the road. These are the national trials we've been waiting for. I know he's supposed to be a "nay-sayer" but I guess if anyone wants observer status they'd better speak up now or forever hold their peace. We can't just wait for operational mistakes and blame it on the MSS. These trials are taking place in Vancouver and Quebec so far. Will someone who is someone ask to liaison between the trial researchers and the stakeholders in Canada, examine blinding, read protocols in advance, request use of IVUS, monitor anti-clotting regime, follow-up plans, etc.? Or are we content to wait for publication? These trials don't start until September.

How is the Ministry of Health involved? Kirsty Duncan or other MPS?

Do they intend to consult with acknowledged experts in this field? Or do they have to wait for the experts to publish? Is anyone from Italy involved?
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby CureOrBust » Sat Sep 29, 2012 6:17 pm

1eye wrote:... request use of IVUS, monitor anti-clotting regime, follow-up plans, etc.?...
If the trial has been approved, I would guess the protocol has been defined and approved.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby 1eye » Sun Sep 30, 2012 9:58 am

It don't start until November. I don't think things like that affect whether it will retain it's approval. Use of IVUS might affect its funding, but not, I would imagine, in a major way. I think anything the good Doctor asks for will be duly considered until well after mid-October.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby Cece » Sun Sep 30, 2012 10:29 am

a Macleans article
http://www2.macleans.ca/2012/09/30/fina ... issed-off/

1eye wrote:Will someone who is someone ask to liaison between the trial researchers and the stakeholders in Canada, examine blinding, read protocols in advance, request use of IVUS, monitor anti-clotting regime, follow-up plans, etc.?
Hopefully the CCSVI Coalition Scientific Advisory Board had effective input ( http://ccsvicoalition.org/board-of-experts ).
I wouldn't want the trials to be derailed at this point but I hope they chose wisely in all the things you listed, 1eye.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby Cece » Sun Sep 30, 2012 10:35 am

http://www2.macleans.ca/2012/09/30/fina ... issed-off/
But he also raises a big concern: that doctors performing CCSVI treatment in the Canadian clinical trial won’t have prior hands-on experience. Interventional radiologists say it takes upwards of 60 procedures to achieve proficiency; Salvatore Scalfani, a veteran interventional radiologist in Brooklyn NY, has reported it took him 200 procedures to feel comfortable. Traloubsee told Maclean’s the technologist and radiologist involved in the trial spent a week with Zamboni and his team in Italy. The vascular team has had “extensive conversations with many international colleagues who’ve performed the procedure,” he says, including Dr. Gary Siskin who’s running the Albany trials.

I don't consider conversations about a procedure to be a substitute for experience performing the procedure.
With the stakes as high as they are, I would want this to be research done by experienced providers.

And here's the bit about Anthony Trabbolouse:
At the helm is an CCSVI naysayer: neurologist Anthony Traboulsee, director of the UBC Hospital MS Clinic, who has voiced skepticism about CCSVI in the past. On the 2012 CBC’s MS Wars: Hope, Science and the Internet, Traboulsee expressed disappointment that CCSVI research has pushed funding for stem cell research, which he called “one of the greatest futures of treating all neurological diseases,” back by five years. Traboulsee was also a member of the CIHR’s Scientific Expert Working Group formed to oversee research into CCSVI clinical trials. CIHR spokesman Coloumbe says there’s no conflict of interest in Traboulsee now overseeing the shebang, and promised a full explanation as to why on Monday.

Conflict of interest.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby 1eye » Sun Sep 30, 2012 10:59 am

Conflict of interest.
Hey if he had accepted tons of moolah from drug companies recently I might be worried. But aren't we in another thread looking right at stem cells combined with the CCSVI treatment? Wouldn't it be cool if he were able to crank up a comparison group that included autologous stem cells? If he were talking to the experts in that area about it, as well as the angioplasty experts?

OK, so he was disappointed. Maybe he got over it.

He might even want to invite Dr. Sclafani to assist. But not if anyone holds a gun to his head, including this forum.
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BC Trial

Postby PointsNorth » Sun Sep 30, 2012 11:20 am

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Re: MS vein-opening trial announced for B.C. and Quebec

Postby 1eye » Sun Sep 30, 2012 12:26 pm

Code doesn't dispute that blocked or twisted veins are not the cause of MS. But he says liberation therapy can relieve the worst of its symptoms.

"We have the expertise among our vascular surgeons and interventional radiologists. We have some of the best in the world. But they're being hand-cuffed by a small number of people who aren't willing to look at the bigger picture," he said, speaking from Canmore, Alta., where he's slated to give a talk at the second annual Exploring Frontiers in Neurovascular Health conference Sunday, put on by the Canadian CCSVI Foundation, where he sits on the board.


He got that right.

They have to bring up the latest death, just to be thorough. It wouldn't be worth its journalistic salt if they left that out. They forgot to mention that about 500 Canadians or so have died from "MS" since then.

Other than that, it's an OK article.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby Robnl » Mon Oct 01, 2012 3:47 am

It's great news.

What I (still) don't understand: Why isn't a kind of 'supervisor' used in these trials...i mean a very experienced ccsvi doctor.
We all know results are very much influenced by the way the trials are performed...
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby drsclafani » Mon Oct 01, 2012 9:39 pm

Cece wrote:http://www2.macleans.ca/2012/09/30/finally-ccsvi-clinical-trials-so-why-is-everyone-so-pissed-off/
But he also raises a big concern: that doctors performing CCSVI treatment in the Canadian clinical trial won’t have prior hands-on experience. Interventional radiologists say it takes upwards of 60 procedures to achieve proficiency; Salvatore Scalfani, a veteran interventional radiologist in Brooklyn NY, has reported it took him 200 procedures to feel comfortable. Traloubsee told Maclean’s the technologist and radiologist involved in the trial spent a week with Zamboni and his team in Italy. The vascular team has had “extensive conversations with many international colleagues who’ve performed the procedure,” he says, including Dr. Gary Siskin who’s running the Albany trials.

I don't consider conversations about a procedure to be a substitute for experience performing the procedure.
With the stakes as high as they are, I would want this to be research done by experienced providers.



I spent a week with Dr Zamboni too. I asked dr Galleati how many cases it took for him to be comfortable and he said fifty.

I then showd galleoti and Zamboni a case study and they both got it wrong and missed the stenosis.

I can tell you that a trial done by inexperienced physicians will lead to the following results:

1.It is dangerous. many patients thrombose their jugular veins
2. many patients will have benefits that last a couple of weeks to a couple of months

A group of us offered our help and advice. No one ever contacted me.

it is a situation that makes me angry
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby Robnl » Mon Oct 01, 2012 11:10 pm

That's what i mean; with all the 'confusion' the last few years you would expect some structural approach and 'requirements'....but no....just the same old story....it's frustrating :evil:
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby CureOrBust » Tue Oct 02, 2012 5:00 am

drsclafani wrote:I spent a week with Dr Zamboni too. I asked dr Galleati how many cases it took for him to be comfortable and he said fifty.

I then showed galleoti and Zamboni a case study and they both got it wrong and missed the stenosis.
Any chance you could let us know what their thoughts on IVUS are? I can not remember seeing them comment on this topic either way.
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Re: MS vein-opening trial announced for B.C. and Quebec

Postby drsclafani » Tue Oct 02, 2012 5:19 am

CureOrBust wrote:
drsclafani wrote:I spent a week with Dr Zamboni too. I asked dr Galleati how many cases it took for him to be comfortable and he said fifty.

I then showed galleoti and Zamboni a case study and they both got it wrong and missed the stenosis.
Any chance you could let us know what their thoughts on IVUS are? I can not remember seeing them comment on this topic either way.

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