SIR Conference 2012

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

Re: SIR Conference 2012

Postby DrCumming » Tue Mar 27, 2012 6:53 am

We missed having Sal at the workshop but Hector took charge and our presentations went great with good discussion after.
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Re: SIR Conference 2012

Postby Cece » Tue Mar 27, 2012 10:23 am

DrCumming wrote:We missed having Sal at the workshop but Hector took charge and our presentations went great with good discussion after.

Glad to hear it! I liked the format of this workshop, with a focus on cases.

from the "IR Doc blog":
http://irdoc.tumblr.com/post/2000018666 ... ctor-in-ms

CCSVI a causal factor in MS?

Well this is a big thing in the US. A potential cause with an IR treatment for MS? Lots of interest and investment into a treatment that may well have no current good scientific evidence to support it, I’m heading to a 2 hour session tomorrow am to see if I can be convinced.

I wonder if he'll post again whether he was convinced or not. I am not sure who the IR Doc is but it's good to get the point-of-view, however brief, of someone new to CCSVI. (As an aside, IR doc has a number of cases laid out on his main page http://irdoc.tumblr.com and his images are excellent. I am amused that I have now seen enough images to distinguish excellent from average. No jugulars though. He is not one of the doctors treating CCSVI.)
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Re: SIR Conference 2012

Postby Cece » Tue Mar 27, 2012 10:52 am

from facebook ccsvi in ms:
Carol Schumacher
Actually the presenter said that they are settling in to a pretty steady rate of 10 procedures a week after having an initial "Bolus" of up to 6 a day. he said this is still a lot for a new procedure and that it was easy to incorporate in a standard IR practice. he said that "bolus" was also typical for new procedures.

Dr Dake and I were on KGO evening news a few minutes ago. We were both speaking for clinical trials. I'll let you know when they post the segment on the web. he will start his trial this year!

I think this is about the presenter from sunday who said there was a decrease in patint visits.

from twitter
SIR: Interventional radiology's role in healthcare is changing

Ok, I am scrounging for information here. There isn't much coming out of SIR aside from the news articles, which are admittedly all in support of CCSVI. Here's a comment that Interventional radiology's role in healthcare is changing, and I think it is changing as they take on more and more. Minimally invasive has a natural advantage over more invasive techniques, if a disease can be treated that way. Before learning of CCSVI and becoming involved as I have, I would have thought that IRs only treated patients with heart disease. Shows what I knew. There was talk at SIR of an endovascular treatment to reduce blood flow to the stomach, which reduces the production of ghrelin which stimulates hunger. If it ended up being as effective as bariatric surgery but with fewer complications, then it's brilliant, and innovational, and exactly what we've come to expect from our IRs.
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Re: SIR Conference 2012

Postby Cece » Wed Mar 28, 2012 9:32 am

Cece wrote:from the "IR Doc blog":
http://irdoc.tumblr.com/post/2000018666 ... ctor-in-ms

CCSVI a causal factor in MS?

Well this is a big thing in the US. A potential cause with an IR treatment for MS? Lots of interest and investment into a treatment that may well have no current good scientific evidence to support it, I’m heading to a 2 hour session tomorrow am to see if I can be convinced.

I wonder if he'll post again whether he was convinced or not. I am not sure who the IR Doc is but it's good to get the point-of-view, however brief, of someone new to CCSVI. (As an aside, IR doc has a number of cases laid out on his main page http://irdoc.tumblr.com and his images are excellent. I am amused that I have now seen enough images to distinguish excellent from average. No jugulars though. He is not one of the doctors treating CCSVI.)

And he did post again! It's interesting to have the point-of-view of an IR who is new to CCSVI with potential healthy skepticism.
http://irdoc.tumblr.com/post/2003954877 ... e-workshop
CCSVI a causal factor in MS (after the workshop)

5 speakers presenting their cases and giving tips on technique in diagnosis and management. All speakers agreed that they think the treatment works in some patients, but they dont know why. Interesting as they all seemed to have slightly different opinions on some aspects of diagnosis. I was left in no doubt that there is a group of patients with MS who seem to have a genuine stenosis of the jugular vein/veins. However I am well aware of many patients without MS who also have this.

A striking case was shown of severe bilateral stenosis in a patient with progressive and severe MS. He was treated with angioplasty and definitely improved significantly beyond what you could expect from any placebo effect. Anecdote I know, but striking. I remain in some doubt as to whether CCSVI is a genuine abnormality that can cause MS.

The only distinction I would make is that he's talking about CCSVI as a cause for MS, and we shy away from that 'c' word, along with other 'c' words like cure. Dr. Dake described CCSVI as a promoter of MS, similar to smoking being a promoter for lung cancer but not the only way you can get lung cancer, and I've been down with the 'p' word ever since.
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Re: SIR Conference 2012

Postby cheerleader » Wed Mar 28, 2012 9:52 am

Not sure if folks saw this ABC News feature on CCSVI, Dr. Dake and patient Carol Schumacher---Dr. Dake is pushing for his clinical trial to get underway. He's fully funded...just waiting for a neurologist in the Bay Area to come on board.....
http://abclocal.go.com/kgo/story?sectio ... id=8596500

We had a great Doctors' roundtable last night. Jeff introduced our hero, Dr. Dake. Robust discussion and some new relationships made across practices. I'll write more later. We missed Sal terribly. Hope he's recovering.
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Husband dx RRMS 3/07
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Re: SIR Conference 2012

Postby Cece » Fri Mar 30, 2012 3:43 pm

https://www.facebook.com/media/set/?set ... 118&type=1

Such great pictures.

I wonder most about what Dr. Goodin's reaction was?

Hey, I came across Dr. Cumming in the pictures! And there is Jeff talking. I remember going back to read through the very first posts here at TiMS, when I was trying to learn what there was to learn, and there were many many posts from Cheer for many months and then at last a thread from Jeff telling his side of the story about the procedure he'd had.

I see a picture of Dr. Arslan presenting on Putnam, and the early vascular hypothesis of MS that was neglected in favor of the autoimmune hypothesis in later years.

And what's holding Dr. Dake up is not yet finding a neurologist to partner with? What an opportunity for the neurologist who ends up taking it. This is the groundwork that is being done, there will be papers on CCSVI for years to come, that will build on and cite the papers done now.
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Re: SIR Conference 2012

Postby cheerleader » Fri Mar 30, 2012 4:07 pm

Cece wrote:And what's holding Dr. Dake up is not yet finding a neurologist to partner with? What an opportunity for the neurologist who ends up taking it. This is the groundwork that is being done, there will be papers on CCSVI for years to come, that will build on and cite the papers done now.


You got it, Cece. What's holding him up is partnership with a Bay Area neurologist-- he is fully funded, has the patients and is ready to go.
Dr. Goodin seemed interested...we'll see where it leads. We need this interdisciplinary cooperation.

Yup, Jeff can actually talk for himself, Cece :!:
and I sometimes let him get a word in edgewise :)...(he's actually a really wonderful public speaker, and since venoplasty, he no longer worries about searching for words or stammering.) He was thrilled to introduce Dr. Dake, the man that gave him back his brain.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: SIR Conference 2012

Postby cheerleader » Tue Apr 03, 2012 8:45 pm

CCSVI Alliance president, Sharon Richardson, gives a great summation of her experiences at SIR and the Alliance Doctors' Roundatble--with links to abstracts --on Facebook. If you don't like CCSVI Alliance on FB yet, make sure to do so!
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https://www.facebook.com/notes/ccsvi-al ... 5743943126
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: SIR Conference 2012

Postby Cece » Wed Apr 04, 2012 8:49 am

Thanks, Cheer. I'll be looking forward to the edited video of the roundtable.
Sharon mentions that the abstracts we've been reading were retrospective studies. Is that true? I had assumed they were prospective.
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