Latest Wheelchair Kamikaze Post on CCSVI

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

Postby 1eye » Fri Oct 29, 2010 1:04 pm

marcstck wrote:...After consulting with my IR, who advised me to hold off for several months to allow more info and real world experience to accumulate, I'm going to wait a while before "taking the plunge".


A laudable approach. I hope you have time.

marcstck wrote:Hard to advise people to forgo diagnostic screening and go straight to venoplasty, especially since insurance companies won't foot the bill for venoplasty without Diagnostic backup. I certainly wouldn't advise anybody, other than those in dire straits, to fork over many thousands of dollars to undergo a treatment which doesn't benefit all who submit to it, and also has a strong history of only temporary effectiveness in a large number of patients.


Yes, especially without all ducks lined up and follow-up arranged. That's why we are all in trouble, just because of our federal government, here in Canada. It's a personal opinion, outweighed by a person's own opinions, and those of their doctor(s). If you have 'MS' you can be reasonably certain (sure, screen if you think you need it, but remember the azygous...) you also have CCSVI. The Liberation procedure has (c'mon, a rose by any other name) a strong history of only temporary effectiveness in that the restenosis rate is high (50%). I am going to do all I can to remain on my side of that 50%. If I can, I believe there is no limit to the healing that is possible, once you have eliminated reflux and slow flow, hypoxia, iron deposition and breaches of the blood brain barrier.

marcstck wrote:Lots to sort out regarding CCSVI, lots to learn. For most patients, the wisest course of action would be to wait a while. The knowledge base is maturing, and the procedure itself is evolving.


As my IR said, we are just guessing. But I think it is a good, reasonable guess. The maturing and evolving can continue, but the procedure and the science can and will run in parallel. :D
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Postby cheerleader » Fri Oct 29, 2010 1:46 pm

Hey Marc--
great post, good to hear your "voice" back, and better than ever.

Wondering if you know who else NPR got ahold of?...we'd contacted them awhile back, heard they were interested, no more. Too bad the CCSVI Alliance wasn't contacted....but we all look forward to listening in.
take care,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby marcstck » Fri Oct 29, 2010 2:11 pm

MrSuccess wrote:marc - I was hoping someone would condense the ECTRIMS presentations
to a more understandable state ..... so the great unwashed public .... can understand what in hell they said . :roll:

Can you direct me specifically to where Dr. Zivadov say's he is not sure of the MS - CCSVI connection . I want to read that myself.

And as for the 25% of healthy test subjects having stenosis' ...... but not MS ......... I say this :

1. Healthy people DO NOT have blocked veins nor arteries .

2. If I was one of the so-called healthy test subjects - the 25% ers - that
have restricted flow in my veins ...... but demonstrate zero symptoms
of MS ........ KNOWING that pwMS have restricted veins ......
I would be wrought with concern that this condition may develop into
MS ..... tomorrow ........ and preventitive procedures are denied me.

3. As in your situation ...... it is my gut instinct that restricted veins
are as a result of the surrounding tissue condensing the vein.
such as inflamed tissue expanding --- virus ? -- swelling from injury
or trauma . It could be a bone has been moved . A pinch point.
Or all of the above :idea:

4. Mechanically speaking ..... if a soft round tube is flatened .... you can
produce what is called being '' wrung together'' .
This mechanical condition is amazingly strong .
Perhaps Angio is required to pry the vein open .... as the blood
pressure is no match for the strength of the wrung together vein.

5. things are getting mighty interesting .........

Mr. Success


success-several of the Zivadinov abstracts point to his finding that CCSVI may not be a causative factor in MS, and I link to these abstracts in my post. The first of these is the study in which he found that the severity of CCSVI abnormalities increases with the severity of the disease. This would tend to indicate that some unknown disease process is producing both the vascular and the neurologic abnormalities found in these patients.

It could be that vascular abnormalities are responsible for the concurrent neurologic damage, but there is also the possibility that some other mechanism could be driving the increase in vascular problems seen in more severe MS patients. Another of his studies looked at a gene factor with a known association to MS, and compared it to the incidence of CCSVI in MS patients. The results were equivocal, showing that CCSVI may be a risk factor in developing MS, or maybe a result of the disease itself. Yet another study looked at MS patients that presented with CCSVI versus MS patients that were free from vascular abnormalities, and found that those with CCSVI tended to have more aggressive disease, and higher levels of disability.

Because I was concerned about misstating Dr. Zivadinov's conclusions, I went through some of my contacts BNAC and had the good Dr. look over the paragraphs I had written about his research. He made a few very minor changes, but basically okayed what I had written as is. So, Dr. Zivadinov has read the materials I wrote related to the research he presented at ECTRIMS, and the conclusions drawn, and signed off on them.

As for your assertion that healthy people do not have blocked veins, that simply cannot be stated as fact at this time. While on its face it may seem like a perfectly logical statement, in reality there is no benchmark "normal" with which to separate out abnormal from normal in regards to CNS venous anatomy. When the doctors at the NIH reviewed my venogram images, they told me that they could easily pull out a dozen or more similar images from patients that exhibited absolutely no ill effects from the blockages found. They did not seem to think that such abnormalities fell outside of the parameters of what might be considered normal variance from patient to patient.

Like you, if I knew I had blocked veins but was experiencing no adverse effects from them, I'd be quite concerned. However, that concern might be completely unwarranted. We are all likely walking around with "abnormal" physical traits that don't manifest in disease. On the other hand, better safe than sorry, thus the terrific importance of both the academic and treatment trials that are currently ongoing.

As for my own personal situation, it's quite a conundrum. A muscle bundle is definitely pinching my right internal jugular vein, quite dramatically, but according to Dr. Zamboni's interpretation of my images, that blockage is not causing turbulent blood flow reflux, so is no real cause for concern. Easy for him to say. It may be that the only way to relieve this compression would be to undergo traditional open neck surgery, and excise the offending muscle, a fairly major surgery. I'm intrigued with the possibility that chiropractic manipulation might help the situation. But, it very well could be as Dr. Zamboni says, and this blockage is doing me no harm.

Like you say, things are getting mighty interesting. There is an ancient Chinese curse that translates, "May you live in interesting times"…
Last edited by marcstck on Fri Oct 29, 2010 2:24 pm, edited 2 times in total.
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Postby fogdweller » Fri Oct 29, 2010 2:12 pm

Excelent post. I do disagree somewhat with one thing. Apparently venous angioplasty is not all that uncommon. Periferal venous angioplasty has been around a long time. Central venous angioplasty for dialysis and also in some cancer treatment situations also is common. When discussing this with some interventional radiologists, it seems almost mundane. I myself thought venous angioplasty was unusual, but apparently not. Also, angioplasty in general is very safe if it does not involve stenting, and this is important to the calculus, especially of very disabled patients who are progressing fast.

An excellent interview by a leading IR at U of Washington Dr. Andrews. specifically check about -12:10 thru 10:53
http://www.komonews.com/home/video/1061 ... ?tab=video
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Postby marcstck » Fri Oct 29, 2010 2:15 pm

cheerleader wrote:Hey Marc--
great post, good to hear your "voice" back, and better than ever.

Wondering if you know who else NPR got ahold of?...we'd contacted them awhile back, heard they were interested, no more. Too bad the CCSVI Alliance wasn't contacted....but we all look forward to listening in.
take care,
cheer


Joan, I'm not sure who else was involved with the NPR story. I tried to put them in touch with Dr. Sclafani and Dr. Sadiq, but I don't think they contacted either one. My interview lasted over 90 min., but I'm sure the piece will include just a minute portion of what we spoke about.

At the time of the interview, I was still rather feverish from my mysterious illness, so who knows, I might have been speaking in tongues. I can't wait to hear the piece, but I'm not getting up at 6 AM to do so. I'll probably wait for it to be archived on the NPR website…
Last edited by marcstck on Fri Oct 29, 2010 3:27 pm, edited 1 time in total.
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Postby marcstck » Fri Oct 29, 2010 2:23 pm

fogdweller wrote:Excelent post. I do disagree somewhat with one thing. Apparently venous angioplasty is not all that uncommon. Periferal venous angioplasty has been around a long time. Central venous angioplasty for dialysis and also in some cancer treatment situations also is common. When discussing this with some interventional radiologists, it seems almost mundane. I myself thought venous angioplasty was unusual, but apparently not. Also, angioplasty in general is very safe if it does not involve stenting, and this is important to the calculus, especially of very disabled patients who are progressing fast.

An excellent interview by a leading IR at U of Washington Dr. Andrews. specifically check about -12:10 thru 10:53
http://www.komonews.com/home/video/1061 ... ?tab=video


fog-thanks for your input. It is true that venoplasty has been performed for quite some time, but is usually performed on late stage renal or cancer patients, and the complication rates of these procedures run rather high (clotting, problems with stents, etc.).

Angioplasty, and venoplasty for that matter, are both very safe if they do not involve stenting, which I did state in my post. My intention was not to scare anybody off of having the procedure done, but to point out that having it done six or 12 months from now might give them a better chance at seeing long-lasting success.

Thanks for the video link, I will definitely check it out.
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Postby MrSuccess » Fri Oct 29, 2010 3:20 pm

marc - thanks for the reply . It must be nice to be able to go straight to
the source of information . ie Dr. Zivadov himself.

I still think that healthy people do not have reduced or plugged
veins. I have said this before ..... it is monsterous to take no
preventitive action ......to remove even the slightest chance of
any of the 25% ers from developing MS.

The more thought I put into external causation for vein collapse ..
the more it makes sense. I'll explain my theory in another post.

I hope I didn't hijack your thread .




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Postby thisisalex » Fri Oct 29, 2010 3:26 pm

Marc,
i am glad you write again :)

great summary as usual, but may i have a question?

you wrote:
One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course. These findings were backed up by papers presented by researchers from Beirut and Italy.


you seem to suggest that the papers from Beirut an Italy are supportive of Zivadinov. but i think they are not. Especially not the italian paper which states:

Eight out of 50 pMS patients (16.0%) met the CCSVI criteria


what do you think?

regards
alex
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Postby concerned » Fri Oct 29, 2010 3:29 pm

MrSuccess wrote: I still think that healthy people do not have reduced or plugged
veins. I have said this before ..... it is monsterous to take no
preventitive action ......to remove even the slightest chance of
any of the 25% ers from developing MS.

Mr. Success


So you think 1.5 billion people should get venoplasty and then require continual after care or risk dying? And after that, at least 750 million will require getting it again in 3-6 months? We're going to need a lot more doctors in the world.
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Postby marcstck » Fri Oct 29, 2010 3:33 pm

thisisalex wrote:Marc,
i am glad you write again :)

great summary as usual, but may i have a question?

you wrote:
One paper demonstrated that the severity of CCSVI increases with the severity of Multiple Sclerosis symptoms experienced by patients, and with a more advanced disease course. These findings were backed up by papers presented by researchers from Beirut and Italy.


you seem to suggest that the papers from Beirut an Italy are supportive of Zivadinov. but i think they are not. Especially not the italian paper which states:

Eight out of 50 pMS patients (16.0%) met the CCSVI criteria


what do you think?

regards
alex


hi Alex-the conclusions of the Italian and Lebanese papers say it all.

From the Italian paper: "Conclusions: Our findings do not support the hypothesis that cerebral venous congestion plays a causative role in the pathogenesis of MS."

From the Beirut paper: "Conclusion: CCSVI is an unlikely cause of MS since it is not present in most cases early in the disease, and in only a minority of MS patients affects more than 1 extracranial vein. It is likely to be a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy."
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Postby thisisalex » Fri Oct 29, 2010 3:38 pm

marcstck wrote:hi Alex-the conclusions of the Italian and Lebanese papers say it all.

From the Italian paper: "Conclusions: Our findings do not support the hypothesis that cerebral venous congestion plays a causative role in the pathogenesis of MS."

From the Beirut paper: "Conclusion: CCSVI is an unlikely cause of MS since it is not present in most cases early in the disease, and in only a minority of MS patients affects more than 1 extracranial vein. It is likely to be a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy."


yep
but you wrote:

... These findings were backed up ...


...they were NOT backed up...
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Postby Lyon » Fri Oct 29, 2010 3:41 pm

..
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Postby marcstck » Fri Oct 29, 2010 3:57 pm

thisisalex wrote:
marcstck wrote:hi Alex-the conclusions of the Italian and Lebanese papers say it all.

From the Italian paper: "Conclusions: Our findings do not support the hypothesis that cerebral venous congestion plays a causative role in the pathogenesis of MS."

From the Beirut paper: "Conclusion: CCSVI is an unlikely cause of MS since it is not present in most cases early in the disease, and in only a minority of MS patients affects more than 1 extracranial vein. It is likely to be a late secondary phenomenon, possibly related to chronic central nervous system (CNS) disease and atrophy."


yep
but you wrote:

... These findings were backed up ...


...they were NOT backed up...


They certainly do back up Dr. Z's conclusions.. Dr. Zivadinov's research casts doubt on the idea that CCSVI causes MS, which was very much in line with the more decisive conclusions drawn by the Lebanese and Italian researchers. Dr. Z still leaves open the possibility of a causative nature to CCSVI, but his findings are not what you would expect to see if indeed CCSVI causes MS.
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Postby TMrox » Fri Oct 29, 2010 4:09 pm

Thanks Marc for your blog. I really like all the work you do there.

Here some interesting comments from Dr Zivadinov:

"Featured Masters Questions and Answers
Robert Zivadinov, MD, PhD
June 2010

The basic theory behind chronic cerebro-spinal vascular insuffiency (CCSVI) is that blood is not properly draining from the brain and spinal cord. CCSVI can include several different types of venous anomalies, including constrictions external to the vein and intraluminal anomalies. The internal jugular and azygous veins are among those involved.

Vascular abnormalities in patients with MS are not a new concept—they were first identified in the 1800s and have been described since the 1930s. Nor are venous insufficiencies specific to MS. Our studies have found CCSVI in about 25% of normal individuals and about 40% of those with neurologic diseases. It could be that an abnormality of the blood vessels triggers an immune response leading to the inflammation and myelin degradation seen in MS, possibly related to deposits of iron in the brain.

My view at this point is that CCSVI is associated with MS; however it is yet to be determined whether CCSVI is among the risk factors that, along with others, increase a person’s susceptibility to developing this disease. The fact that CCSVI prevalence is about 38% in patients with a first clinical attack of MS and almost 90% in those with secondary progressive MS and a disease history of 20 years suggests to me that venous insufficiency has a high likelihood of affecting people with MS over time.

Info taken from:
http://www.mastersofms.com/masters_qas.php
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.
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Postby 1eye » Fri Oct 29, 2010 6:44 pm

TMrox wrote:...
My view at this point is that CCSVI is associated with MS; however it is yet to be determined whether CCSVI is among the risk factors that, along with others, increase a person’s susceptibility to developing this disease. The fact that CCSVI prevalence is about 38% in patients with a first clinical attack of MS and almost 90% in those with secondary progressive MS and a disease history of 20 years suggests to me that venous insufficiency has a high likelihood of affecting people with MS over time.

Info taken from:
http://www.mastersofms.com/masters_qas.php


This is a piece of news to me. This means, that, with my history being almost exactly the one he describes, *I* have about a 90% chance of having CCSVI. So why would *I* think twice about wanting venoplasty? That's good enough for me, and should be good enough for the most entrenched neurologist, the MS Society, the government, and all the IRs you can shake a stick at.
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