Position Statement: Interventional Endovascular Management..

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

Position Statement: Interventional Endovascular Management..

Postby concerned » Sat Oct 16, 2010 8:12 am

Position Statement: Interventional Endovascular Management of MS

http://www.sirweb.org/news/newsPDF/SIR_ ... t_JVIR.pdf

Don't know if this has been posted yet or not. I thought all the plumbers were on board:

3. At present, SIR considers the published literature to be inconclusive on whether CCSVI is a clinically important factor in the development and/or progression of MS, and on whether balloon angioplasty and/or stent placement are clinically effective in patients with
MS.
A compelling body of published research indicates that MS is a disorder
with predominantly autoimmune features and an unknown primary
etiology. The hypothesis that CCSVI may be a primary factor in the
pathogenesis of MS or an aggravating factor in its clinical progression, if
firmly established, would represent a major paradigm shift in the general
scientific understanding of this disorder.
The discovery of extracranial venous stenoses in patients with MS
certainly merits serious study, but it is unclear whether they truly represent a cause of MS versus a secondary effect of the pathologic process arising from the disease, an effect of MS treatments, or an unrelated finding.
Although promising, the pilot studies that suggest a clinical benefit
for patients with MS with the use of balloon angioplasty had important
methodologic limitations:
(i) small sample size (N  96 patients combined); (ii) single-center performance; (iii) lack of blinding of clinical outcome assessors; and (iv) nonrandomized design with lack of a placebo control group (particularly
limiting as a robust placebo effect would be expected in patients with MS)
(7,8). In addition, although balloon angioplasty and stent placement of
central thoracic veins have been performed safely for many years in
other clinical scenarios, the procedures are invasive and carry a risk of
complications. Also, the durability of clinical response has not been established.
Hence, the current body of literature is insufficient to judge (i)
whether an interventional treatment approach for MS is effective; if so, (ii)
for how long and (iii) whether its clinical benefits outweigh the associated
risks and costs; and (iv) which patients with MS, if any, should be
treated and at what stage in the disease process.
concerned
 

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Postby PCakes » Sat Oct 16, 2010 8:46 am

hmm.. seems to me that they are 'on board' and as all good mariners would.. are doing a safety check before setting out to sea.. 8)

4. Interventional radiologists possess
the ideal skill set to provide
interventional MS therapy with
maximum safety and effectiveness
when clinically appropriate.
If interventional MS therapy proves
to be effective, patients with MS must
be treated by physicians with specialized
expertise in delivering imageguided
venous treatments. Interventional
radiology is a recognized
subspecialty requiring dedicated training
that encompasses clinical patient
evaluation and management, noninvasive
venous imaging, catheter venography
and hemodynamic assessment,
and the delivery of targeted, imageguided,
minimally invasive treatments
to patients (15). Interventional radiologists
perform balloon angioplasty and
stent placements on a daily basis in
thousands of patients with diverse venous
conditions including acute deep
vein thrombosis, postthrombotic syndrome,
superior vena cava syndrome,
and portal hypertension; they also perform
procedures to maintain hemodialysis
access. SIR has a stated mission
to improve public health by pioneering
advances in image-guided
therapies. SIR and its members are
committed to developing and maintaining
the highest standards of excellence
in patient care, integrating disease
management, proficiency with a
wide range of imaging technologies,
and specialized technical expertise in
providing image-guided therapies. SIR
and its members adhere to the highest
standards of ethical behavior, placing
the interests of patients first.
5. SIR strongly supports the urgent
performance of high-quality clinical
research to determine the safety and
efficacy of interventional MS therapies,
and is actively working to promote
and expedite the completion
of the needed studies.
SIR believes that the completion of
high-quality studies on CCSVI and
interventional MS therapies should
be considered an urgent research priority
by investigators, funding agencies,
and MS community advocates.
SIR, through its Neurovascular and
Venous Service Lines, is moving rapidly
to catalyze the development of
the needed studies by bringing together
expert researchers in imageguided
venous interventions, neurology,
central nervous system imaging,
MS outcomes assessment, and clinical
trial methodology.
CONCLUSION
SIR recognizes the challenge and
the potential opportunity presented
by promising early studies of an interventional
approach to the treatment of
MS. SIR is pleased :) that public advocacy
groups have pushed the medical
community forward to meet this challenge
and is committed to assuming a
national leadership role in launching
the needed efforts.
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Postby concerned » Sat Oct 16, 2010 8:57 am

On board for investigation maybe, who isn't, but I don't think that they recognize CCSVI as a causative, or even secondary factor to MS. The evidence just isn't there.
concerned
 

Postby PCakes » Sat Oct 16, 2010 9:16 am

concerned wrote:On board for investigation maybe, who isn't, but I don't think that they recognize CCSVI as a causative, or even secondary factor to MS. The evidence just isn't there.


Your point is valid and i agree..they are calling for more research..we all know this is needed.. but when i read the statement i read guarded optimism and recognition of a real possibility that hey.. we might have something here..

the statement you pasted is infused with words like..

..A compelling body of published research..
..if firmly established, would represent a major paradigm shift...
..The discovery of extracranial venous stenoses in patients with MS
certainly merits serious study...
..it is unclear whether they truly represent a cause of MS versus a secondary effect of the pathologic process arising from the disease..
..promising..

My glass is 'half full' .. i think their statement was only meant to reinforce the very promising possiblity of CCSVI and the obvious URGENT need for more research and clinical trials to nail down 'best practice' treatment and get on with it!!
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Postby Cece » Sat Oct 16, 2010 11:17 am

The sentence immediately before what concerned is of use:
When conclusive evidence
is lacking, SIR believes that these
often difficult decisions are best
made by individual patients, their
families, and their physicians.

Their next statement, that concerned did quote, was that conclusive evidence is lacking. Therefore in this situation the decision should be made by us, our families and our physicians.
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Postby concerned » Sat Oct 16, 2010 11:41 am

Yes, that certainly is true, and it should be an informed decision.

I've never said that people shouldn't be allowed to choose to have the procedure done, just that they should know that nothing is proven yet, and the safety profile of the procedure is largely unknown.
concerned
 

Postby 1eye » Sat Oct 16, 2010 12:12 pm

Why? Because only money-grubbing capitalists like Simka say it is safe? What about Zamboni and Zivadinov, and the others we know about? Well, we prevented as much Liberation as possible, but a few slipped through the cracks, so safety was established but we never said they could, so it doesn't count?

What kind of inhumane sadistic game are we playing now? Of course people should be allowed to choose to have the procedure done, *and* to decide how much they think is 'proven'. Otherwise Liberation will not happen and CCSVI will remain nothing but a research topic and coincidental meal ticket, for aloof scientists, and never get out of the research laboratory.

It remains to be said, over and over: people are dying and can be saved. No, Liberation doesn't "always work." So since oceans are wet and cold, and people have no feathers, they should not try to fly. Could get wet. Might save their lives, but let's not get anybody wet...
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby scorpion » Sat Oct 16, 2010 1:32 pm

concerned wrote:Yes, that certainly is true, and it should be an informed decision.

I've never said that people shouldn't be allowed to choose to have the procedure done, just that they should know that nothing is proven yet, and the safety profile of the procedure is largely unknown.


I do not see how a decision can be informed when most people only want to hear one side of an argument; the side they want to believe. Recently I read an article where a family is suing a drug manufacturing company or the Federal government(I forget which) because they claim a vaccine their child received in childhood caused autism. There are websites that still claim associations between autism and vaccines although there are large studies that refute this claim. Looking for results you want to find and making a decision based on what you find is not an informed decision.
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Postby 1eye » Sat Oct 16, 2010 1:39 pm

The Final Arbiter of Information has Spoken. Careful where you look: you might find something someone doesn't want you to see.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby scorpion » Sat Oct 16, 2010 2:02 pm

1eye wrote:The Final Arbiter of Information has Spoken. Careful where you look: you might find something someone doesn't want you to see.


...or you can make witty comments when a post is made to show you are one of those people who only want to hear one side of a discussion.
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Postby 1eye » Sat Oct 16, 2010 2:55 pm

Sorry. I forgot. I only hear what I want to hear. Therefore I am misinformed. But what if the thing I want to hear is true, regardless of what I want? Like death and taxes. In fact the truth rarely cares whether I come anywhere near it. I am not misinformed because of what I want or don't want. Mine is not the only opinion under consideration. A lot of times I am misinformed because I believed the wrong people, took expertise and qualifications too seriously.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Postby Cece » Sat Oct 16, 2010 3:47 pm

The people at this website are sufficiently informed. It's people who hear about this procedure from other people and never read up on it that might not be. But most of them will be filled in by the IR doing their procedure. Any IR who is doing this procedure without explaining in full what it is and what can and cannot be expected has failed his patients. I do agree with what Dr. Siskin has said, I believe it was at the July symposium in Brooklyn, that he spends time talking to patients about expectations and that even when it's been logically explained, the patients still may not hear it because their hearts are all in. (Those aren't his words, those are mine, but that was the general concept he was expressing.)
concerned wrote:I've never said that people shouldn't be allowed to choose to have the procedure done, just that they should know that nothing is proven yet, and the safety profile of the procedure is largely unknown.

We are in agreement!
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Postby cheerleader » Sat Oct 16, 2010 5:12 pm

http://www.thisisms.com/ftopic-13359-0- ... -sirs.html

a thread on both the Canadian and US society statements from August.
Good discussion--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby drsclafani » Sat Oct 16, 2010 7:34 pm

cheerleader wrote:http://www.thisisms.com/ftopic-13359-0-days0-orderasc-sirs.html

a thread on both the Canadian and US society statements from August.
Good discussion--
cheer


on Monday, a group has been convened by the Society of Interventional Radiology in Washington DC. We will discuss plans regarding establishing registries and defining a research agenda for CCSVI in North America.
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Postby sbr487 » Sat Oct 16, 2010 9:13 pm

drsclafani wrote:on Monday, a group has been convened by the Society of Interventional Radiology in Washington DC. We will discuss plans regarding establishing registries and defining a research agenda for CCSVI in North America.


Thanks. Hope to get more info. in the coming week ...
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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