Joint Invitational Meeting on Multiple Sclerosis Research

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

Joint Invitational Meeting on Multiple Sclerosis Research

Postby scorpion » Wed Sep 08, 2010 7:03 pm

Maybe this explanation has been posted but if not it DESERVES a thorough reading.

http://www.cihr-irsc.gc.ca/e/42381.html
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Postby Rokkit » Wed Sep 08, 2010 8:04 pm

Ok, I'll start. :D

This is wrong:
A proportion of the brain's venous drainage runs through the internal jugular veins when a person is standing, however when a person is lying down, that proportion of the venous return tends to flow through alternate venous routes.


So much for the experts. Sorry Canada, you're screwed.
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Postby CureIous » Wed Sep 08, 2010 8:09 pm

Rokkit wrote:Ok, I'll start. :D

This is wrong:
A proportion of the brain's venous drainage runs through the internal jugular veins when a person is standing, however when a person is lying down, that proportion of the venous return tends to flow through alternate venous routes.


So much for the experts. Sorry Canada, you're screwed.


Actually that's partially true, if one considers the IJV's may be obstructed to begin with ;)

Nice catch, but in fairness will go back and read the report anyways.
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Postby Rokkit » Wed Sep 08, 2010 8:11 pm

Dr. Zamboni acknowledged that the balloon venoplasty treatment does not work for MS patients with progressive disease.

Huh?
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Postby CureIous » Wed Sep 08, 2010 8:39 pm

Rokkit wrote:
Dr. Zamboni acknowledged that the balloon venoplasty treatment does not work for MS patients with progressive disease.

Huh?


I didn't see anything particularly intriguing or inventive. I'd swear Colin Rose wrote the "your head would swell up" part. Isn't that what collateral circulation and the VV's are for? Doesn't mean reflux isn't happening. Why does it always feel like these seemingly scholarly assertions always go back as far as possible to find the very preliminary postulates, then go after them with a vengeance? I see nothing we already didn't know about their position, "prove CCSVI even exists first, then we may study it later depending on that". Make sure to toss the cure word out there too, while assembling a panel that has zero experience firsthand with CCSVI testing or procedures, while keeping out anyone else WITH that experience.

Rokkit's dead on with the broad brushing of the "does not work on PPMS" part. If by does not work Zamboni means, "causes no baseline improvements at 18 months", then the assertion is correct, but that's not really how it reads, it reads as, "did absolutely nothing whatsoever". I'd bet dollars to donuts if I asked 100 PPMS patients whether they preferred a good chance of no progression, or stasis and whatever happens, happens, they'd choose the former, and that's just a guess on my part.

I'm wary to comment on PPMS because I'm not PPMS but it seems logical enough to assume they would prefer the possibility of no progression vs. uncertainty.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby scorpion » Thu Sep 09, 2010 9:03 am

Rokkit wrote:
Dr. Zamboni acknowledged that the balloon venoplasty treatment does not work for MS patients with progressive disease.

Huh?


Disease severity: In RR patients, the MSFC showed
highly significant improvement at 18 months (P 
.008; Table IV). MSFC showed significant although
limited improvement after the first 6 months in both
PP and in SP clinical courses, but at 18 months showed
no improvement respect to baseline.
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Postby Cece » Thu Sep 09, 2010 9:13 am

scorpion wrote:Disease severity: In RR patients, the MSFC showed
highly significant improvement at 18 months (P 
.008; Table IV). MSFC showed significant although
limited improvement after the first 6 months in both
PP and in SP clinical courses, but at 18 months showed
no improvement respect to baseline.

This is why he needed a control group. I might not understand PPMS perfectly but in a sizeable group, wouldn't it be expected that the group as a whole would have some decline in an 18-month period? Lacking improvements is unfortunate, but the story there seems to be that in 18 months the PPMSers maintained their health at the level they started at.

Even as an RRMSer, if I could know that I'd be no worse in 18 months, I would take it with gratitude. (Although like everyone else I am hoping for more.)
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Postby PCakes » Thu Sep 09, 2010 9:30 am

Cece wrote:...but the story there seems to be that in 18 months the PPMSers maintained their health at the level they started at.

Even as an RRMSer, if I could know that I'd be no worse in 18 months, I would take it with gratitude. (Although like everyone else I am hoping for more.)


right on Cece! ..it's hard to keep our eyes on the real prize.. thank you!
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Postby JCB » Thu Sep 09, 2010 9:48 am

As an individual diagnosed PPMS, no more progression would be a win. I can live with a limp. I can learn how to become left handed (already have). Treatment date next Monday, will let you all know the outcome.
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Postby PCakes » Thu Sep 09, 2010 9:57 am

Good luck JCB!!!.. :)
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Postby 1eye » Thu Sep 09, 2010 10:14 am

And such a huge sample of PPMS patients that the result must be valid for the rest of us, too. Simply must.
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'MS' is over - if you want it
Patients sans/without patience
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Postby NZer1 » Thu Sep 09, 2010 2:26 pm

The Fall 2010 issue of Momentum, the magazine put out by NMSS, has its usual interesting articles, but what really caught my attention was the closing column on the very last page....The NMSS had polled its readers to identify priorities and Joyce Nelson, President of NMSS, wrote about the three that really stood out -... more research, more MS doctor/researchers and

"More support and more visibility for those with progressed forms of MS. Nearly 50% of people living with MS today have secondary or primary-progressive MS.

the link to the PDF is http://www.nationalmssociety.org/multim ... x?id=24086
The magazine is on this link
http://www.nationalmssociety.org/multim ... index.aspx
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Postby garyak » Thu Sep 09, 2010 3:54 pm

This too deserves a thorough reading

http://my-darn-ms.blogspot.com/2010/09/ ... ealth.html
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Postby AMcG » Thu Sep 09, 2010 4:32 pm

"Disease severity: In RR patients, the MSFC showed
highly significant improvement at 18 months (P
.008; Table IV). MSFC showed significant although
limited improvement after the first 6 months in both
PP and in SP clinical courses, but at 18 months showed
no improvement respect to baseline."

This is an accurate quote and is also fair comment. But I think some people are making too much out of it.

This is just one test . The two other tests Zamboni did showed improvements but only one or two results reached significance. In fact the MSFC tests also showed improvements but they did not reach significance either. When you consider these groups are so small: SP=20 and PP=10 it is difficult to conclude anything very much from them.

It is certainly not justifiable to say they prove there was no improvement. The correct phrase would be failed to show a significant improvement. There might have been real improvements but you cannot tell.
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Postby Rokkit » Thu Sep 09, 2010 8:15 pm

AMcG wrote:This is an accurate quote and is also fair comment. But I think some people are making too much out of it.

Exactly. The expert panel definitely made too much of it by stating: "Dr. Zamboni acknowledged that the balloon venoplasty treatment does not work for MS patients with progressive disease."

Zamboni has never acknowledged anything of the kind. The closest he's come to anything like that is when he has talked about many PPMS patients having issues with lumbar veins that never developed and hence cannot be treated.
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