Cerebrospinal Drainage Not Tied to Multiple Sclerosis

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

Cerebrospinal Drainage Not Tied to Multiple Sclerosis

Postby scorpion » Fri Feb 11, 2011 4:11 pm

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Re: Cerebrospinal Drainage Not Tied to Multiple Sclerosis

Postby Salvatore24 » Fri Feb 11, 2011 4:50 pm

scorpion wrote:This seems pretty decisive.

Not really, there were only 50 patients in this study.

Fifty patients who presented with clinically isolated syndromes and dissemination in space of the inflammatory lesions, suggestive of MS, underwent diagnostic tests

Not to mention they weren't even using patients clinically diagnosed with Multiple Sclerosis.

Several of the researchers on this study disclosed financial relationships with pharmaceutical companies, including Pfizer, Sanofi-Aventis, and Merck-Serono.

This does not help their credibility or objectivity either.
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Postby MrSuccess » Fri Feb 11, 2011 4:52 pm

( o )

Mr. Success
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Re: Cerebrospinal Drainage Not Tied to Multiple Sclerosis

Postby frodo » Fri Feb 11, 2011 5:28 pm

scorpion wrote:This seems pretty decisive.


As I said before in other thread, a negative association is NEVER decisive.

On the other hand, If somebody finds a positive association in a blind trial, then that can be considered really decisive.

This is why blinded trials are important.

A positive finding in one of them is enough evidence to dismiss any number of negative findings no matter how much they are. If somebody can predict blindly the presence of MS looking at the veins of a patient it does not matter than one hundred of other people are not able to do the same. The relationship can be considered true.
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Postby ikulo » Fri Feb 11, 2011 5:47 pm

I believe this was already discussed here: http://www.thisisms.com/ftopict-15484.html
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Postby AlmostClever » Fri Feb 11, 2011 8:42 pm

"Several of the researchers on this study disclosed financial relationships with pharmaceutical companies, including Pfizer, Sanofi-Aventis, and Merck-Serono."

Is it common for drug companies to support studies that don't involve their drugs, let alone no drugs at all?

MS and CCSVI are different critters - maybe they're related, maybe not. Who cares? If you had a broken leg, would you go to the hospital and get a cast or go to your neuro to see what drug you should take?

I know where I'm gonna go first...
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby CuriousRobot » Fri Feb 11, 2011 8:53 pm

Too bad you can't vote people down in this forum.
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Postby Lyon » Fri Feb 11, 2011 10:28 pm

CuriousRobot wrote:Too bad you can't vote people down in this forum.
Tell me about it!
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Postby Rokkit » Sat Feb 12, 2011 7:17 am

Lyon wrote:Tell me about it!

Right or wrong, that's probably an election you would lose. We ccsvi zealots are nothing if not numerous. :D
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Postby scorpion » Sat Feb 12, 2011 7:50 am

Rokkit wrote:
Lyon wrote:Tell me about it!

Right or wrong, that's probably an election you would lose. We ccsvi zealots are nothing if not numerous. :D

Just to clarify CCSVI is a medical hypothesis described by Zamboni that he believe MAY be linked to MS. How the so called "CCSVI zealots" manipulated it is unfortunate for everyone who has MS and is involved with MS research. Instead of a uniformed front to tackle this disease the "CCSVI zealots" have created divisions among the individuals who should be the most united in finding a cure , people with MS. While we should be waiting for research results to see if angioplasty can help relieve some symptoms of MS, people seem to be wasting their time making things up as CCSVI research goes along to ensure it remains a "miracle cure". A study didn't get the results that we wanted? Must be a conspiracy on the part of the researchers due to their association with drug companies. Maybe worse they are neurologists trying to keep their business hopping. Maybe the researcher held the ultrasound wand wrong? Maybe it was the wrong technique? Maybe they do not know what they are looking for? If the procedure does not work it must be because there were blockages missed. Still feeling bad after the procedure it must be restenosis. Veins are open? I bet not all of them are that is why you do not have improvements. How unfortunate this all has become.
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Postby CCSVIhusband » Sat Feb 12, 2011 10:22 am

The first part of my previous post makes NOW no sense - since the references were removed ... so I'll get rid of it ... no problem - it wasn't anything personal, just responding to questions.

But I think the 2nd part (below) is an interesting tale especially at the bottom, and some relevant questions ...

Now ... whether CCSVI proves out or not, time will tell. From what I've seen with my own eyes, there's something to it for sure.

With upcoming
animal models, where veins in animals will be occluded and limit flow from the brain and spine ... if they develop "MS" symptoms, I'd imagine that will be pretty telling. (though I wonder how you ask a mouse, or cat, or dog, or monkey IF it's numb). (or how to spell WORLD backwards - as I read in another post this morning).

with further research into whether doppler or MRV are even valuable diagnostic tools considering so many IRs are finding on venogram CCSVI in ALL people with "MS" ... maybe it is completely unnecessary to even waste time with the doppler and MRV as they don't give a true picture of "in the veins". (remembering that viewing the vein (azygous) draining the spine is hard to image using either diagnostic method)

However what they do, do, is show that there is reflux and improper architecture. So for a diagnostic tool, it might not be bad ... (on my wife's first doppler - by an IR - she was found to have 1 of 5 criteria). The venogram showed something vastly different. On her 2nd doppler, it showed 3 of 5 criteria (a much more experienced doppler operator - who trained with the best in Canada). The 2nd venogram found problems in the areas of those criteria ... but was the doppler actually necessary?

Between you and I, Bob ..., I'd be more than happy to contribute to the science and have a doppler, MRV, or venogram ... to help prove "healthy" controls are different. (I don't know what angioplasty would do for me, considering I have NO "MS" symptoms - but I'd be willing to let them do one just to see what happened if they did so to my veins). But until they call for volunteers to do that, I doubt any doctor every would or could just to prove a point.

So the research is held back by previously held theories.

I'm sure part of it is the "business" of MS patients - for the drug companies ... who we know give money to neurologists for "research". Make no mistake, there is a BUSINESS of MS. Billions of dollars annually. And people who hold access to that kind of money - with no end in sight, and a limited but growing client list - won't let it go easily (would I? would you?). They know their drugs don't work, but continue to promise 'breakthroughs' are just around the corner (for decades now). And they keep this business going by ongoing studies, payments, shifting of drugs designed for one purpose into a different purpose (see Ampyra) ... make no mistake, "MS" is a business. - and until the status quo changes (be it CCSVI, or some other theory that proves out) business is GOOD. Neurologists aren't questioning the CRABs drugs, because it's ALL they have that has shown ANY benefit (no matter how small). And they can basically keep you on for 10 years (generally) until they change your diagnosis to SPMS - and even then still keep you on it.

Part of the problem is the scientific method. IF we're going to allow poorly designed and executed studies by neurologists to trump research by IRs and vascular doctors ... then "science" is flawed - just because neurologists "owned" "MS" in the past. Times change, and should change IF science dictates. There is obviously something to THOUSANDS of MS patients being found to have CCSVI at this point ... so I ask ... WHY do none of these studies on CCSVI by neurologists have vascular surgeons or IRs working with them. Who MIGHT see something different.

After years of practicing neurology ... are they really skilled in analyzing doppler results? (when was the last time you'd suspect they did use one)? I'm not accusing neurologists of being dumb nor ignorant ... I'm just saying, why don't they go sit through a venogram ... with an IR ... and see what's going on INSIDE the veins instead of a potentially useless diagnostic tool?

Interview the patient before the procedure. Do a neurological assessment. Watch the procedure, take whatever notes you want, ask whatever questions you want. THEN interview the patient, x hours after the procedure. x days after the procedure. x months after the procedure. And do neurological assessments again. Instead of dismissing it without ever seeing it from the patients point of view.

Again, "science" can be manipulated ... when you want it to be. And "science" can be held back.

What neurologists don't know ... is A LOT. Why aren't they willing to look at new theories?

I'll bet someday soon they do. Neurology is still going to be a big part of "MS" ... and CCSVI isn't going to be the answer for ALL I'm positive. After all, in a 1st MS attack someone may be completely devastated neurologically ... and need a neurologist to manage neurological symptoms. But WHEN CCSVI proves out ... they might just only need repeated ballooning (or stenting when stents are developed that work for life (continued implantation of dissolvable stents, or something we don't even imagine). I mean, 30 years ago who'd imagine you could read live what I write on a box sitting on my lap that weighs no more than 1 pound, that's not connected to a single wire. The world changes. Things develop. People learn. Information travels faster. The wave of CCSVI is still young ... the tsunami is building.

Just so we're all aware, I have presented CCSVI to a board of directors of big name companies (for a work "project" - in a debate/discussion of business operations - again see letting access to billions of dollars as a company go) ... where nobody knows anything about it, or much about MS ... as a way that science is flawed. Whether CCSVI pans out or not ...

Just the facts as we know them now ... each on the board agreed, as a company, they'd not want CCSVI to pan out - and would do what it took to anti-marketing attack it pre-emptively (even if that meant that CCSVI could be the "cure" to the disease).

Afterwards, you wouldn't believe how many people out of the hundred or so in the room came up to me and said ... "is this real"? "is this really happening"? "how sad" ...

The dream of any business model is to have unlimited access to a product and market segment that will always grow or remain stable. "MS" fits that description.

It is a HUGE, BLOATED cash-cow ... in a business that is also a rising star (in that profits will continue to rise - as we see that more and more worldwide are diagnosed with "MS" and go on these drugs).

Those fists are tightly gripped around that money ... it won't be easy to pry them away.
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Postby Jugular » Sat Feb 12, 2011 10:35 am

Scorpion and Lyon, long may your torches burn on Thisisms CCSVI!

Nevertheless, I do have some problems with this study and those like it. In their inception they set the bar too high by asking if CCSVI causes MS and in their execution, they leave out too much.

Scientific causation is a difficult animal to prove at the best of times. CCSVI does not have to CAUSE MS to support liberation trials. Thus far, nothing has been proven to be THE cause of MS, including the autoimmune model. Yet we have autoimmune acting drugs as approved therapy.

Regarding execution, these studies tend to be jugular-centric and stenosis-centric. What about valves and the azygous?

I had liberation therapy and experienced a measurable and objective improvement in my neurological function such as I have not experienced since I've been on this skid for over 10 years. Years of accumulated disability have been reversed.

The question that should be asked is whether improving cerebral drainage benefits MS patients. The hows and whys of it all to me are secondary. More to the point, a study such as this is not a justification for deep-sixing liberation trials.

While not subscribing to conspiracy theories, I can see drug companies sponsoring these sort of studies as they provide justification for not including anything about CCSVI in negative share information. If CCSVI causes MS, then autoimmune-based drug therapy isn't justified then sales plummet. If CCSVI is proven not to cause MS, it's business as usual.

But that's the thing. CCSVI only has to play a role in MS causation or treatment for everyone to win. CCSVI is not a cure so I guess we'll likely need some kind of drug to get us the rest of the way - think remyelination. Drug companies need to get off their asses and come up with it if they want into my wallet.
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Postby CaptBoo » Sat Feb 12, 2011 11:45 am

For every neurologist-inspired, pharmaco-funded study trotted out by the "Skeptics" and for every "Zamboni's magic wand" study trotted out be "CCSVI-zealots", there are hundreds of us that have actually had the procedure and had real and lasting improvements in our MS issues. The cat is out of the bag and it's going to be pretty difficult to get it back in. The efforts of those nay-saying the benefits of venous angioplasty are looking quite futile as every IR doing the procedure has wait-lists months long. The louder they yell, the more publicity they generate and that brings more pwMS to the table, so to speak. So yell on.
<div>There be no dragons   ...Reese Palley</div>
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Postby debp » Sat Feb 12, 2011 11:52 am

I am new to reading medical studies and as I read more I find it really funny sometimes what the people running the study conclude so decisively.

One or more abnormal extracranial venous ultrasound findings were observed in 26 of 50 (52.0%) pMS patients, in 35 of 110 (31.8%) healthy controls (HCs) (HC1+HC2), and in 41 of 60 (68.3%) TGA patients.

Isn't that about in line with what BNAC found initially? Their numbers suggest to me that pre MS patients are about twice as likely to have venous anomalies as healthy controls. Why did BNAC find these kind of numbers compelling enough to study further, but these guys conclude that it means that CCSVI doesn't exist?

Also they weren't examining MS patients, they were patients who were likely to develop MS?

The conversion rate observed in our pMS patients during the study period (11/50, 22%) is in line with the expected value.

I wonder how many of those 11 were in the 26 that had abnormalities, I couldn't find the information in the study but it is relevant don't you think? And if the ones who developed MS were among those that had abnormalities, which ones did they have? Are there some types of abnormalities that are worse than others?

And further information about Healthy controls,

Although both age and gender should not have constituted a significant bias, especially considering that Zamboni and colleagues found CCSVI in 100% of MS patients and 0% in HC, it has to be pointed out that in a large study on healthy volunteers, a retrograde venous flow (demonstrated in 55/125, 44.4%, of subjects) was significantly more frequent in men and at older ages (≥50 years).

I think this is a little off topic but does anyone else find that really interesting?

Thank you for the link Scorpion. I think it is always worth reading the studies and not just the conclusions and I appreciate your efforts to bring them to our attention. Good and bad. :)
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Postby CureIous » Sat Feb 12, 2011 2:18 pm

Jugular wrote:Scorpion and Lyon, long may your torches burn on Thisisms CCSVI!

Nevertheless, I do have some problems with this study and those like it. In their inception they set the bar too high by asking if CCSVI causes MS and in their execution, they leave out too much.


That has been their MO from the very beginning. Just like any good lawyer in a trial, ask the question that you already have the answer for.
"Does this cause MS?"

"Nothing to see here folks, let's all move on",
and this way, when the patients ask the neuros whats up with all this CCSVI stuff they've been hearing about, they can whip this study out and case close the whole thing before it gets out of hand.

It's lame, it's weak, it's ad hoc and getting more desperate by the minute, as these quickie imaging studies are trumpeted as some kind of final word, then, when the dolts in the media get around to reporting on it, they can report on CCSVI followed immediately by something like, "but a recent study published in xyz journal has reported no such causal link" blah blah, as if the causal link needed to be proven to be efficacious.

Damage control, get the "conflicting studies" published before the ink is dry, get your name in the hat first, set a precedent.

Not just damage control, control period.
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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