New Blog Post-CCSVI: Separating Fact from Fiction

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

New Blog Post-CCSVI: Separating Fact from Fiction

Postby marcstck » Mon Nov 30, 2009 9:15 pm

I just posted this to my blog, in response to the massive waves of misinformation and mistaken assumptions that are flooding the Internet chat rooms and forums.

Comments please.

http://www.wheelchairkamikaze.com/2009/ ... ating.html
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Postby CureIous » Mon Nov 30, 2009 9:25 pm

Yeah unfortunately any post ANYWHERE on the net now becomes replicated so fast there's just no way to control it. Thanks for taking the time to put out a concise resource to point to. I read the entire thing and cannot find anything per se I would disagree with on a factual basis, opinion maybe but that aint worth much lol.

Very well done, and something I will point prospective patients to, to provide balance. After all, we have nothing to hide, much to discuss, much to discover, and tomorrow can't get here fast enough!!

:) Mark.
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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very good

Postby mohzi » Mon Nov 30, 2009 9:27 pm

You have outlined in your post, basically the same thing that I have found. A lot more research needs to be done. Stents in veins is relatively new and can be dangerous.

This is not like a trip to the dentist.
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Re: very good

Postby cah » Mon Nov 30, 2009 9:52 pm

mohzi wrote:This is not like a trip to the dentist.


Well, I had a trip to the dentist that went completely wrong when a piece of the root of a wisdom thooth that was removed surgically broke off and slipped into my sinuses. Some hours later I laid on a surgeons table, having my cranium cut open through my mouth to remove it... really was a nasty thing, but healed quickly.

There's risk in everything. The question is, is it calculable and bearable? This questions can only be answered through research. But thruth is: There won't be any treatment without any risk - there isn't any for anything yet. But I think it's a legitimate question whether radeck's complication was an accumulation of bad luck or could have been foreseen (maybe with more research). On the other hand, I really can understand anyone suffering from MS who don't want to wait. Oh dear, it really is a dilemma.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby zap » Mon Nov 30, 2009 10:03 pm

Nice post, very well done.

One question I wanted to ask - is 100% of MS pateints really a red flag out of such a small sample size?

The rather small group of patients studied to date is often pointed out by skeptics who wish to dismiss the theory/studies, but those same skeptics seem not to consider this when they're pointing to the 100% number.

Now, if Zamboni had studied several hundred people and still reported 100% match between the parameters and the MS-diagnosed, I might wonder ... but I don't think it's that shocking in the small group in question.

Also, if they were rigorous in selecting their MS patients, deliberately avoiding borderline diagnoses and new cases, it becomes even less surprising to me.
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Postby cheerleader » Mon Nov 30, 2009 10:14 pm

Nice job, Marc. Very well-written, concise and on point.

Dr. BB Lee addressed the geographic incidence question at the Bologna conference- he stated that venous malformations occur in Caucasians- who also happen to settle further from the equator. Also, women suffer from venous insufficiency at a higher rate than men. These are known, studied facts in relation to other venous diseases, but have not been written about in CCSVI, since we've only known of this pattern for a year. Dr. Zamboni's team is currently studying EBV and a variety of other external influences (smoking/fats/obesity/Lyme/Cpn) in endothelial disruption and exacerbation of stenosis and reflux. But there are no papers available today. Therein lies the problem, and the flights of fancy in the current speculation. We just don't have the research today (Check back tomorrow for the Liberation Procedure paper.) Dr. Zivadinov stated that he believes there will be thousands of papers studying CCSVI authored in the next ten years. But that's a while off. This may be the first time in medicine that the patients request treatment before the papers are printed...and that's the good and bad thing about the immediacy of the internet.

Jeff saw his closed veins and all those crazy collaterals and made a personal decision to deal with it now. He is glad he did, but each individual needs to understand their own risk/benefit ratio. Just as every MS patient is different, how they approach their disease will be different. And type and location of stenosis will affect this decision, too. It is not the same for everyone, and the treatment approach will need to be tailored to the individual situation. Some will find ballooning sufficient, others will choose to have stents. Some will have no treatment options for awhile-some will wait until there is more research. The individual needs to assess and decide.

Trying to keep it factual on the Facebook page, and correcting erroneous posts over there as much as I can, but it's a full time job I don't want :) Appreciate the help keeping it real, Marc. Thanks!
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MamaGirl » Mon Nov 30, 2009 10:41 pm

Marc, thank you! That was honest, factual yet hopeful. Beautifully written.
Full of information.
-MamaGirl
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Postby prof8 » Mon Nov 30, 2009 10:46 pm

Marc, that was a fantastic post. I think you summed it up perfectly. Thanks for that.
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Postby mrhodes40 » Tue Dec 01, 2009 4:50 am

I really liked it Marc! Really superb.

If I am not mistaken though, the first installment of JNI replication is due out in weeks.

I appreciate the mention of the neurological community and pharma community objecting in such matter of fact terms also. It is simply unrealistic to imagine that they could accept this information gladly without having to do some serious stepping back and re evaluation of everything they believe. No human being likes to be forced into that situation, it is human nature.

thanks for a good reference point!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Boreas » Tue Dec 01, 2009 5:30 am

WOW! This is going to be one of the classics of ccsvi-writing. :wink: Best start you can get - cool!
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Postby whyRwehere » Tue Dec 01, 2009 7:23 am

Hi, you said:

"Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated."

I think Zamboni's results said up to 50% of the jugular blockages needed to be redone, not the azygous blockages, and I wonder about the multiplied risk in the liberation treatment. Why is it more risky the next time and even more risky the time after that? Just curious.
[/i]
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Postby sou » Tue Dec 01, 2009 7:42 am

I understand it as:

r is the risk of 1 operation, R is the total risk

1 operation: R = 1 * r
2 operations: R = 2 * r
3 operations: R = 3 * r
...
n operations: R = n * r

Each time the risk is the same. But it is multiplied with the number of operation. But, if r tends to 0, R is not that high compared to the benefit...

sou
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby ozarkcanoer » Tue Dec 01, 2009 7:46 am

Very well written Marc. A breath of fresh, cautious air. We are all looking forward to more "evidence, evidence, evidence". As a CCSVI activist I want to help push forward the trials that will provide more evidence. There are two relatively easy things that could bring more evidence.

1. Every MS patient, as part of his/her periodic MRI, should be imaged by Dr Haacke's protocol (that is if his pilot study has merit)

2. The doppler sonography techniques should be spread to more and more hospitals and MS centers. There should be serious training on these techniques. This is a 0 risk procedure. MS patients may elect to have the sonography. I certainly would.

These two suggestions would gather a huge amount of evidence on the correlation of CCSVI and MS without a lot of funding or prolonged clinical trials.
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Postby marcstck » Tue Dec 01, 2009 8:19 am

whyRwehere wrote:Hi, you said:

"Unfortunately, as many as 50% of the patients treated suffer restenosis of the veins opened by the Liberation Procedure, and thus require multiple interventions. As with any surgery, there is risk involved, and that risk is multiplied each time the intervention must be repeated."

I think Zamboni's results said up to 50% of the jugular blockages needed to be redone, not the azygous blockages, and I wonder about the multiplied risk in the liberation treatment. Why is it more risky the next time and even more risky the time after that? Just curious.
[/i]


An easy, albeit very dramatic, way of looking at it is to imagine playing a game of Russian Roulette with a six chambered revolver.

By placing a bullet in only one chamber, that leaves five chambers empty, making the odds of blowing your brains out on anyone attempt 5 to 1 against the unfortunate outcome. However, if you repeat the exercise six times, your odds are better than even money of winding up with a huge gaping hole in your head.

And yes, I have done a fair amount of gambling in my time, though I've wisely shied away from Russian Roulette...
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Postby Algis » Tue Dec 01, 2009 8:27 am

...looking at it is to imagine playing a game of Russian Roulette with a six chambered revolver.
...


That dramatically reduce the chances 8O
If ballooning is 1/6 for complication I really start to worry :?

Let's make the chamber a 200 bullets chamber, no? :roll:
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