Benefits vs. risks of surgical intervention for MS patients

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

Benefits vs. risks of surgical intervention for MS patients

Postby MSUK » Fri Nov 19, 2010 3:41 am

Image

Paolo Zamboni, MD, professor of surgery at the University of Ferrara (Ferrara, Italy), was among the 430 presenters at the 37th annual VEITHsymposium™ held at the Hilton New York (New York, NY).

In his November 18th discussion of multiple sclerosis patients who are experiencing decreased blood flow as a result of narrowing of specific veins of the head and thorax, Dr. Zamboni evaluated the risks of surgical intervention as opposed to the possible rewards. His summary was based on two recent pilot studies....Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2944
MS-UK - http://www.ms-uk.org/
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Wracking my brain some more

Postby Gordon » Fri Nov 19, 2010 8:44 am

A Contentious Issue

Jeffrey Cohen, MD, from the Cleveland Clinic Foundation ......

"My read on the data from the Zamboni and Zivadinov groups is that it appears the incidence of venous abnormalities in fact increases over time; thus, patients with progressive MS have a higher incidence than those with relapsing-remitting MS, who have a higher incidence than those with CIS — so that already suggests that this is not a causative condition," Dr. Cohen said. "If there is in fact an association, it's a modifying factor; maybe a comorbidity or perhaps just reflects a normal aging phenomenon."
\[b]

I am wondering ...

Could it be that as we grow older the veins continue to change and if they started off twisted they continue to become more and more twisted, much like a a small wrinkle on your face becomes a larger deeper wrinkle as we age ??


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Postby CCSVIhusband » Fri Nov 19, 2010 8:56 am

That seems to be the thinking of some Gordon, and I actually don't disagree with it ... so, if you get your veins fixed when you're young, you could ward off future complications due to them ...

I disagree that CCSVI isn't being found in young people or people with newly diagnosed MS.

I've provided laundry lists of that, I think you could find more and more people on Facebook with just that every day.

The problem is (and problem might not be the right word) ... but so far only about 5,000 people probably have ever been TESTED for (let alone treated) for CCSVI. Given the spread of ages of MS involved, and that few people, it means a lot of young people probably still haven't been tested to prove it or not. So the data isn't good scientifically ... but from the personal stories segment, you can see a lot of young people have CCSVI (some pretty bad) ... and I think as this goes along, you'll see CCSVI in more and more ... and then we can debate causality (or their relation to MS) ...

But - secondly - are you willing to know you have twisted or bad veins, and then NOT get them fixed just for science to watch over 20 years to see if they get worse, and as a result your MS gets worse? I certainly wouldn't be. I don't think anyone would ... that's a terrible thought.
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Postby MaggieMae » Fri Nov 19, 2010 1:10 pm

Remember reading last year that Dr. Zamboni found that over 90% of young children (he treated through adulthood) with a particular vascular issue ended up with MS 20 years later.
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Postby CCSVIhusband » Fri Nov 19, 2010 1:26 pm

MaggieMae wrote:Remember reading last year that Dr. Zamboni found that over 90% of young children (he treated through adulthood) with a particular vascular issue ended up with MS 20 years later.


I know MaggieMae ... I've said before, and I'll say again: in the end this is all going to prove out.

We can't (this group) move science any faster than science can move - as much as we wish we could.

Dr. Zamboni caught lightening in a bottle with this one ... now we just have to have other doctors figure out how to do the same thing (but do it better).
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Postby cheerleader » Fri Nov 19, 2010 1:37 pm

I feel it is important to include the notes I took from the pre-Congress meeting in Bologna, Monday, September 7, 2009, since they are mentioned above---this is regarding CCSVI PRECEDING an MS diagnosis---
http://www.facebook.com/note.php?note_id=130412202210


The origin of Dr. Zamboni’s work in Multiple Sclerosis began when he was a vascular surgeon in Sardinia, Italy. Sardinia is noted for its high level of epidemiology in MS in the general population. During 1987-1992, he noted a high prevalence in children with malformations of the jugular veins. His paper on this topic, “So-Called Primary Venous Aneurysms” was published in 1990. He noted AV fistula and a closed ring stenosis that could not be crossed by their blood in these children, external compression and this vascular anomaly appeared to be congenital. 20 years later, 90% of these children he studied have been diagnosed with MS.

Dr. Patricia Coyle of Stony Brook University asks a question-
“How do we diagnose CCSVI?” The first answer comes from Dr. Zivadinov-
Doppler investigation is the beginning. If there is non-direction of flow in any body condition, or continual flow in the opposite direction- CCSVI is implicated. Transcranial doppler in the deep cerebral veins shows reflux. And then it is necessary to locate the stenosis. In MS, the jugular/Vertebral veins flow is consistently subverted. Dr. Zivadinov states that they had tested a 25 year old girl who had come into Jacobs as a control. A healthy girl, who presented with bilateral jugular occlusion. Months later, she had her first CIS attack of MS, and an MRI was done to show two lesions. She also has a familial history of MS. He reiterated that all of the doppler testing was blinded, yet it corraborated CCSVI in MS 100%.

Dr. Dake then stated that he had also tested a relative of a confirmed MS patient. A woman who had not been diagnosed with MS, but who presented at Stanford with jugular occlusion and a variety of neurological deficits, yet no MS diagnosis. She also showed lesion activity on an MRI, and he stented he occlusion the day before he flew to Bologna.


Dr. Simka also reported at ECTRIMS that he sees stenosis is early MS, and he saw no correlation between length of disease of severity of CCSVI. I believe the jury is still out on causation.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby scorpion » Fri Nov 19, 2010 5:01 pm

CCSVIhusband wrote:That seems to be the thinking of some Gordon, and I actually don't disagree with it ... so, if you get your veins fixed when you're young, you could ward off future complications due to them ...

I disagree that CCSVI isn't being found in young people or people with newly diagnosed MS.

I've provided laundry lists of that, I think you could find more and more people on Facebook with just that every day.

The problem is (and problem might not be the right word) ... but so far only about 5,000 people probably have ever been TESTED for (let alone treated) for CCSVI. Given the spread of ages of MS involved, and that few people, it means a lot of young people probably still haven't been tested to prove it or not. So the data isn't good scientifically ... but from the personal stories segment, you can see a lot of young people have CCSVI (some pretty bad) ... and I think as this goes along, you'll see CCSVI in more and more ... and then we can debate causality (or their relation to MS) ...

But - secondly - are you willing to know you have twisted or bad veins, and then NOT get them fixed just for science to watch over 20 years to see if they get worse, and as a result your MS gets worse? I certainly wouldn't be. I don't think anyone would ... that's a terrible thought.


You lost me. Are you saying 5,000 people is not enough people to confirm or deny CCSVI or causation? So the data is not good scientifically why? The good thing for you is that you don't have MS so you will not have to wait for anything.
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Postby CCSVIhusband » Sun Nov 21, 2010 5:44 pm

scorpion wrote:
CCSVIhusband wrote:That seems to be the thinking of some Gordon, and I actually don't disagree with it ... so, if you get your veins fixed when you're young, you could ward off future complications due to them ...

I disagree that CCSVI isn't being found in young people or people with newly diagnosed MS.

I've provided laundry lists of that, I think you could find more and more people on Facebook with just that every day.

The problem is (and problem might not be the right word) ... but so far only about 5,000 people probably have ever been TESTED for (let alone treated) for CCSVI. Given the spread of ages of MS involved, and that few people, it means a lot of young people probably still haven't been tested to prove it or not. So the data isn't good scientifically ... but from the personal stories segment, you can see a lot of young people have CCSVI (some pretty bad) ... and I think as this goes along, you'll see CCSVI in more and more ... and then we can debate causality (or their relation to MS) ...

But - secondly - are you willing to know you have twisted or bad veins, and then NOT get them fixed just for science to watch over 20 years to see if they get worse, and as a result your MS gets worse? I certainly wouldn't be. I don't think anyone would ... that's a terrible thought.


You lost me. Are you saying 5,000 people is not enough people to confirm or deny CCSVI or causation? So the data is not good scientifically why? The good thing for you is that you don't have MS so you will not have to wait for anything.


What's your point? I think I was quite clear in my answer. You just want to argue (as usual).
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Postby David1949 » Mon Nov 22, 2010 4:17 pm

And then there is the risk associated with not getting Liberation treatment; you get sicker and sicker and more disabled. Then you end up in a wheelchair, wearing diapers and maybe drooling on yourself. And then you die.
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