Study suggests MS not linked to CCSVI

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

Study suggests MS not linked to CCSVI

Postby MSUK » Tue Nov 10, 2015 7:47 am

A new study claims an abnormality in blood drainage from the brain, known as chronic cerebrospinal venous insufficiency (CCSVI), is not associated with multiple sclerosis (MS)...Read more -
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Re: Study suggests MS not linked to CCSVI

Postby EJC » Tue Nov 10, 2015 9:44 am

Actually this doesn't surprise me at all. Until there is a complete shift in the way medicine and the health industry as a whole define MS we will continue going around in circles as people try to debunk or prove possible causes.

The problem I see with MS is the all encompassing list of symptoms that can lead to an MS diagnosis. All these patients with this diagnosis can't possibly be all suffering from the same single cause, to think that's the case is illogical in the extreme.

There are people posting all over this forum that have had success with various different treatments. My first hand experience is with dental and TMJ treatment that has allowed my wife to begin recover and start to learn how to walk again and enjoy life.

Has this treatment cured MS? I'm not so sure, I'm more inclined to consider the original MS diagnosis as questionable, despite lumber punctures, white lesions, optic neuritis and all the usual markers being present.

Until medicine stops pigeon holing people diagnosed with MS, ME, CFS and the myriad of other syndromes and starts addressing specific symptoms to find if there is anything that can be done to further understand of what is currently labelled "MS" then I can't see much progress globally.

Does someone who has a CCSVI diagnosis have to have MS to make this diagnosis valid? Is it actually any less valid if they don't have MS.

Are CCSVI and MS mutually exclusive or could you in fact have both, or one or the other? Ultimately this always arrives back with question what is MS?

How can you find a solution to something can't actually be clearly defined or understood?
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Re: Study suggests MS not linked to CCSVI

Postby ElliotB » Tue Nov 10, 2015 10:09 am

There have been several studies out of Canada that come to the same conclusion. Here is a link to one of them as posted on the Canadian MS Society website: ... 131008.htm

"The recent research findings from the study led by Dr. Anthony Traboulsee indicate there is no connection between CCSVI and MS."

I have found several other studies that come to the same conclusion.

Yet, some people seem to do well having the CCSVI procedure done (while of course many others do not).

A similar conclusion from another study:

CCSVI "...should be discarded in view of the numerous independent external validation studies contradicting Zamboni's observations.... has no proven efficacy, may exacerbate underlying disease activity and has been complicated with serious adverse events... should stop being offered to MS patients even in the settings of randomized-controlled trials

It appears this treatment is probably yet another 'dead end'.
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Re: Study suggests MS not linked to CCSVI

Postby 10yearsandstillkicken » Tue Nov 10, 2015 12:24 pm

Garbage in, garbage out.

appears to be a review of other studies. As we have batted around many times, many of these "studies" were flawed in some way. I had treatment a few years ago and there is no doubt it has helped. That is not my opinion. It comes from friends and family that watched my slide and the recovery since the procedure. I suppose that could be their opinion. But, there is no arguing with riding 10 miles in 100 degrees. Something that I can and do now but was impossible prior to the procedure.
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Re: Study suggests MS not linked to CCSVI

Postby Robnl » Tue Nov 10, 2015 2:27 pm

The current study also used a form of venous imaging called gadolinium-enhanced magnetic resonance venography, along with extracranial Doppler ultrasound, to compare blood flow out of the brain between 120 MS patients and 60 healthy controls. Both patients had one or more “proposed ultrasound criteria for diagnosis of CCSVI” in order to blind the testing radiologists to the patients’ actual clinical status. The researchers found there were no differences between the two groups when it came to CCSVI.

How, when, what?.......weird study.
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Re: Study suggests MS not linked to CCSVI

Postby AMcG » Wed Nov 11, 2015 7:36 pm

Most of this kind of research really has very little merit. Many seem almost designed to find nothing and do not surprise when they don't. The real problem is thinking of an experiment which would be convincing either way. Because of operator variability the ultrasound can always be interpreted as inadequate. Even CV alone does not reliably detect all intraluminal defects. I believe CV + Intravenous ultrasound in the hands of an experienced IR to be highly reliable and a very worthwhile avenue to pursue but there is little being published from that quarter. So nobody has provided sufficiently convincing results either way. Certainly neither camp has managed to convince the other camp they are right. The basic problem as I have pointed out several times is that if they cannot even agree how to reliably detect the phenomenon they wish to study how can they even know they are talking about the same thing? The fact that results vary so wildly proves to me they aren't. So I think the only sensible view to take is that the available evidence is not adequate to say it has been proven or disproven.

Many of the studies referenced above are also backed by the Pharmaceutical industry and looked very much like a rushed attempt to discredit CCSVI because of its potential for affecting their profits. Of course they can easily achieve that end by producing poor studies which find nothing and then trumpeting them as proof that CCSVI doesn't exist what I think of as the 'Nelson' effect. Traboulsee's study was exactly like that - poorly conceived experimental design with statistical analysis that an undergraduate would be ashamed of which was trumpeted world wides as the death knell for CCSVI. More a marketing exercise than scientific research. It always makes me think of 'Laboratoire Garnier.'

However a good number of other studies relating to the venous hypothesis have broadly confirmed Zamboni's insight. Hypoperfusion, ischemia as well as extravasation have been confirmed multiple times by sound experiments which do not have the flaws of the bulk of studies aimed at discrediting CCSVI. And ideas based on Case studies continue to evolve.

You will also find many people who have posted here who will attest to the benefits they have personally experienced (and I am one.) There is nothing more convincing than having the treatment and seeing and feeling the benefits in your own body.

I have no interest at all in pushing CCSVI nowadays. I used to be a keen proponent but I have learned that many people simply do not want to know and I respect their right to remain so if that is what they want. But I think we are now past the stage where CCSVI can reasonably be opposed. There is definitely something there and there is now enough empirical and theoretical support to prove that much. Exactly what it is and how it will all turn out I don't know but as Joan has been saying from the beginning the vascular connection in whatever it actually is that we call MS is now beyond doubt. It can no longer be denied. Blood flow and CSF flow matter.

Although I think it is criminal to let idiots like Traboulsee oversee treatment trials I nevertheless look forward to him publishing the findings of his next study although I have little doubt it will be poorly designed. How can you design criteria for the effective treatment of a condition you claim to have proven doesn't exist? It will be interesting to see.

I am not sure what prompted the original post but if it was the idea that CCSVI has somehow been discredited then I would say that is far from true. I think there is a lot yet to discover in relation to vascular dynamics and neurological problems but we are past the point where the topic is struggling to get in the air. The topic is now safely flying. It remains to be seen how it develops.
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Re: Study suggests MS not linked to CCSVI

Postby cheerleader » Wed Nov 18, 2015 4:57 pm

Here's a data base of over 400 peer-reviewed papers which contains hundreds that find a relationship between MS, CCSVI and venous flow. Note that most are from vascular publications. ... ask=search

The ISNVD is holding their next meeting at the Academy of Sciences in New York City---and there will be dozens of researchers there who are publishing on the vascular connection to MS. From Gladstone Institutes finding that a drop of blood on brain tissues can create MS disease process, to the discovery of the brain's lymphatic vessels which drain thru the sinus and jugular veins, to cerebral microbleeds seen in MS brains on 7T MRI, to the heart brain's no longer possible to say there is no vascular connection to MS.

Here's the program.... ... 1-2015.pdf
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Re: Study suggests MS not linked to CCSVI

Postby 1eye » Sat Nov 21, 2015 1:16 pm

I was just wondering, when will we stop getting announcements about some study that says the same tired old thing about MS not being "linked" to CCSVI, or caused by it, or even in the same room with it?

How much is accomplished by telling these slanted stories over and over? Many of the biggest stakeholders in this confabulation have no interest in reading more of the same biased and conflicted reports. Is anybody listening?

If "CCSVI is dead", why do they keep having to do more studies? I suggest people consult cheerleader's database of scientific papers which support its existence and relevance.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
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Re: Study suggests MS not linked to CCSVI

Postby Rogan » Sat Nov 21, 2015 7:28 pm


Very interesting to read your "MS News" updates.

Sounds like the news I was reading about MS my whole life until I found

Turns out posting links like.

Chocolate may help
B cells may be involved
Cancer drugs might help
HIV drugs might improve symptoms

Is about as helpful as saying
Congested brain veins are not linked to MS

How can a site say this.?

Does anyone read your site ?

If most of your posts contain the word "might"

How can you definitively say an anatomical flaw is "not linked"?

Back to bee stings viruses and haywire immune systems.

Throw in sun spots and neutrinos too while your at it

UK medicine sucks anyway.

Good luck to your backward unscientific posts.
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Re: Study suggests MS not linked to CCSVI, etc.

Postby 1eye » Sun Nov 22, 2015 8:09 pm

Well, I have very seldom found any direct links to supporting papers on MSUK. Usually I find press releases and have to hunt around (which is often easy enough to do) for original source material. I think ignoring posts which say stuff like "MS not linked to CCSVI" is also easy enough to do.

Perhaps something could be added to the Announcements/sticky topics which warns people of the likelihood of finding relevant information in places known to be frequently irrelevant, trivial, or not very fruitful.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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