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garyak
PostPosted: Fri Aug 20, 2010 11:39 pm 
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http://drpauldorio.posterous.com/sir-co ... eatment-of

Dr James Benenati - President of the Society of Interventional Radiology promises their position statement to be published in the Sept. Journal of Vascular and Interventional Radiology.
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Blaze
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PostPosted: Sat Aug 21, 2010 5:34 am 
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Thanks for posting that Garyak. I think it's the first we've heard from Canadian interventional radiologists. It's encouraging, but it still is looking at research, rather than treatment.

As Dr. Sandy McDonald said in a recent CBC Radio interview: "Clinical trials are important and in medicine compassion is important. I don't think compassion can be swept aside in our zest for a wonderful science. Science is important, but the patient is important as well and that can't be lost in the process."

Where are other Canadian vascular surgeons on this? Except for Dr McDonald and Dr. Godley (I'm not certain of his specialty) in Vancouver, they have been amazingly silent.
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frodo
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PostPosted: Sat Aug 21, 2010 6:35 am 
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Blaze wrote:
Thanks for posting that Garyak. I think it's the first we've heard from Canadian interventional radiologists. It's encouraging, but it still is looking at research, rather than treatment.


Were have you read that they are Canadian IRs? This seams comming from an international society.

EDIT: Sorry. I have found it. "The position statement [...] is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology"

EDIT 2: It is not an international society, but from the united states. They do not state it clearly but its implied in their services. For example:

http://doctor-finder.sirweb.org/

EDIT 3: I do not expect too much. They say "SIR will publish a position statement indicating its support for high-quality ethical clinical research to determine the safety and effectiveness of new interventional M.S. treatments". This means that they want more research before performing surgeries.

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You can get a worldwide list of available sites for CCSVI at http://www.ccsviclinic.info
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garyak
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PostPosted: Sat Aug 21, 2010 9:29 am 
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At least they are getting involved in making statements that are not negative to the general public . This will help balance the statements made by neurology.
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cheerleader
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PostPosted: Mon Sep 06, 2010 12:30 pm 
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Both official statements by the American and Canadian societies of interventional radiologists are now available online--
http://www.sirweb.org/news/newsPDF/Rele ... _final.pdf

Quote:
FAIRFAX, Va.—Recognizing that venous interventions may potentially play an important role in treating some patients who suffer from multiple sclerosis—an incurable, disabling disease—the Society of Interventional Radiology has issued a position statement indicating its support for high-quality clinical research to determine the safety and effectiveness of interventional M.S. treatments. SIR’s position statement is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology.

“The Society of Interventional Radiology would like to be actively involved in developing evidence- based therapies for the potential treatment of patients with multiple sclerosis,” said SIR President James F. Benenati, M.D., FSIR. “Completing high-quality studies—for example, on chronic cerebrospinal venous insufficiency (CCSVI, a reported abnormality in blood drainage from the brain and spinal cord) and interventional M.S. treatments—should be a research priority for investigators, funding agencies and M.S. community advocates,” added Benenati, who represents nearly 4,700 doctors, scientists and allied health professionals dedicated to improving health care through minimally invasive treatments.


and in Canada.....

Quote:
CIRA Endorses SIR Position Statement on Interventional Endovascular Management of Chronic Cerebrospinal Insufficiency in Patients with MS

The Society of Interventional Radiology (SIR) has published a Position Statement on Interventional Endovascular Management of Chronic Cerebrospinal Insufficiency in Patients with Multiple Sclerosis. The Canadian Interventional Radiology Association (CIRA) endorses this Position Statement, that states among other elements that "SIR (and CIRA) 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."

<shortened url>

cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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scorpion
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PostPosted: Mon Sep 06, 2010 1:03 pm 
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Isn't this basically what the MS Society said????? :?
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CureIous
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PostPosted: Mon Sep 06, 2010 2:26 pm 
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scorpion wrote:
Isn't this basically what the MS Society said????? :?


Yeah, didn't they say they would be "actively working to promote and expedite the completion of the needed studies." ?

Didn't they also say, "CCSVI, a reported abnormality in blood drainage from the brain and spinal cord) and interventional M.S. treatments—should be a research priority for investigators, funding agencies and M.S. community advocates,”?

Or, did they say, "basically", that they would spend years, using paltry sums in comparison to the whole of their organizations,to evaluate whether the condition even exists or not, and how to best go about evaluating whether it would be scientifically sound to have trials in the first place, and of course put the majority of those funds and decisions in the hands of neurologists.

Sounds reasonable to me...

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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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cheerleader
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PostPosted: Mon Sep 06, 2010 2:26 pm 
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scorpion wrote:
Isn't this basically what the MS Society said????? :?


No. SIRS is recommending angioplasty treatment trials now. The MS Society wants to wait until their testing studies that prove/disprove the connection of CCSVI in MS are completed.

SIRS believes the correlation between venous abnormalities and MS has already been established by international doctors, and recommends clinical trials --like the recently approved trial in Albany which is now recruiting here:
http://clinicaltrials.gov/ct2/show/NCT0 ... svi&rank=1

The MS Societies of Canada and the US refuse to fund any angioplasty trials at this time. This is why BNAC and Stanford were refused any funding.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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nicknewf
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PostPosted: Mon Sep 06, 2010 4:08 pm 
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Scorpion, I'm relative new here, so if you've answered this before please just point me to the thread -- are you someone with ms, a family member, a volunteer, just interested? You seem down on this whole thing, and yet you make a ton of posts.

Love the contrarian spirit here, but saying the ms societies are taking the same stand as SIR seems like you are grasping a bit.
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cheerleader
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PostPosted: Mon Sep 06, 2010 9:14 pm 
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Guys...Scorpion has MS, he's been on this forum a while and he was just asking a question. Hope I've answered it for him. The IR groups are recommending angioplasty treatment trials start now, while the MS Societies want to wait until their testing studies prove correlation first.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS


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Leonard
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PostPosted: Mon Sep 06, 2010 11:29 pm 
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dear all,
please do not underestimate the importance of this position by IR.
this will help to tip the balance over to the other side.
this is seen by politicians, other IR docters etc who will feel themselves strengthened by this.
the gates will then open.
of course they are careful and cautious but the trust/ trend goes into the right direction.
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Rokkit
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PostPosted: Tue Sep 07, 2010 7:42 am 
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Scorpion's just somewhat bitter I guess. So am I. The second half of my life isn't going to be like I spent the first half imagining it would be, so yeah I'm a little bitter. I know I need to give more people the benefit of the doubt here.
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Algis
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PostPosted: Tue Sep 07, 2010 8:03 am 
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It is healthy to have people who contest any idea; I think we also tend to become a bit 'paranoid' about anything that does not add up to our theory/belief/experience/whatever we call it.

I am glad we can discuss it openly here; even I very seldom give my own opinion.

Keep it on my Friends; we'll all get there (wherever that is).
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Lyon
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PostPosted: Tue Sep 07, 2010 8:06 am 
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Last edited by Lyon on Sun Nov 20, 2011 6:32 pm, edited 2 times in total.

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scorpion
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PostPosted: Tue Sep 07, 2010 8:24 am 
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cheerleader wrote:
Guys...Scorpion has MS, he's been on this forum a while and he was just asking a question. Hope I've answered it for him. The IR groups are recommending angioplasty treatment trials start now, while the MS Societies want to wait until their testing studies prove correlation first.
cheer


Thanks Cheer.
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Board index » Treatments » Chronic Cerebrospinal Venous Insufficiency (CCSVI)

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