This Is MS Multiple Sclerosis Community: Knowledge & Support

An article that appeared today in one of Holland's leading newspapers. I translated it to the best of my ability. Depressing


A blow to revolutionary MS therapy

An estimated 50 Dutch patients who suffer from MS, a CNS disease, underwent the procedure abroad, and 50 more who are on waiting lists in either Poland, Germany or Italy.
Desperate patients who suffer from a degenerative disease, are paying lofty sums of money. The German clinic, Private Scan, is recruiting Dutch patients thru a Dutch language website and is charging 1225 Euros for diagnosis. The procedure costs another 5995 Euros. The patients themselves need to bare the brunt.

But does the therapy work?

Physicians from the VUmc (Free University medical center) MS center in Amsterdam are skeptical. In fact they were skeptical from the onset about the therapy that was developed by the Italian vascular surgeon, Paolo Zmboni. But then again, Nobel prizes were handed before to individuals who at first were booed by the establishment.
For this reason Amsterdam scientists wanted to give the theory a fair review. This also happened due to pressure from patients who were enthused by the Italian who hit the pres last year with his much criticized treatment.

Meanwhile the VUmc scientists have completed their research into the biological probability of Zamboni’s approach. They can’t support his claims. “in fact, our findings undermine the foundations of the theory” said Bob van Oosten, a VUmc neurologist and Mike Wattjes, a VUmc Neuro Radiologist, during a presentation held for the patients who participated in the research.

Zamboni’s theory is revolutionary because it questions the widely held autoimmune theory by which immune cells assault the nervous system leading to progressive damage, paralysis, spasms etc..
But if we are to believe Zamboni, something different is at hand; he seems to have discovered that his wife, who also happens to be afflicted by MS, and 500 more MS patients were all suffering from Stenosis of their Jugular veins. This is what he claims is the cause of MS. The narrowing of the Jugular veins impedes blood flow from the brain and comes to a still stand. The mounting blood pressure causes blood to leak into brain tissue. This is the cause of MS symptoms.
Zamboni treats the root cause: He balloons the narrowed Jugulars which removes the blockage and allows the blood to flow freely. This results in the alleviation of symptoms.

This all sounds great. “But the truth of the matter is that there is n scientific proof to back this” says Dr. van Oosten. “So far Zamboni has only published one paper in which he describes the treatment of 65 patients with Angioplaty. There is no control group of patients who underwent a fake procedure. His findings are therefore not conclusive and the reported alleviation of symptoms could be ascribed to nothing more but a placebo effect.

Dr. Van Oosten’s critique goes further: “is it plausible that the majority of MS patients suffer from Stenosis while healthy individuals don’t? Zamboni may as well say so, but this kind of black and white scenario is not customarily seen in nature. Doctors at the Buffalo University of New York could not confirm this. They reported 53% with Stenosed veins and 23% for healthy subjects.

The Amsterdam research leaves even less of Zamboni’s clear cut distinction between MS and healthy patients. “We have images of the veins of 40 subjects: 20 MS patients and 20 healthy individuals, same age and same gender” says Neuro Radiologist Mike Wattjes. “This is called MRV or MR-Venography – a special application of MRI that gives a good picture of the veins. The images were evaluated by colleagues who did not know whom the healthy subjects and whom the MS patients were. 50% of al subjects appeared to have Stenosis, equally distributed among the MS and healthy subjects. Bottom line, we see no systematic difference between people with and without MS.”

This conclusion is bad news for Zamboni’s theory. But the researchers made an even more striking discovery: They set out to see whether blood stagnated or refluxed in brains of people with narrowed veins. Nothing of the kind seemed to be the case. Blood kept flowing freely despite the narrowing in the Jugular veins. “Such narrowing is thus not a pathology” concludes the Radiologist. “it’s just like red hair doesn’t need to be treated”.

But you can never know, many patients think. If it doesn’t do any good, it won’t do any harm either. Usually it is only arteries that are ballooned, not veins. Veins are thinner and more vulnerable than arteries and may therefore be easily damaged. “The procedure could cause infections that in turn cause the veins to narrow and block” warns Dr. Wattjes. “There is no research into this yet. We can not guarantee that the procedure is safe”.

In the medical literature there are two known cases of serious complications.

Just another disgruntled Neurologist studying veins... Make no sense...

B W van Oosten
Department of Neurology, VU University Medical Centre, P.O. Box 7057, 1007 MB Amsterdam, the Netherlands, bw.vanoosten@vumc.nl

Failed attempt at immunomodulation:



NEUROLOGY 1997;49:351-357
© 1997 American Academy of Neurology

Treatment of multiple sclerosis with the monoclonal anti-CD4 antibody cM-T412: Results of a randomized, double-blind, placebo-controlled MR-monitored phase II trial
B. W. van Oosten, MD, M. Lai, MD, S. Hodgkinson, MD, F. Barkhof, MD, D. H. Miller, MD, I. F. Moseley, MD, A. J. Thompson, MD, P. Rudge, MD, A. McDougall, MD, J. G. McLeod, MD, H. J. Adèr, PhD and C. H. Polman, MD
From the Department of Neurology (Drs. van Oosten and Polman), Free University Hospital, Amsterdam, the Netherlands; the National Hospital, Institute of Neurology (Drs. Lai, Miller, Moseley, Thompson, and Rudge), Queen Square, London, United Kingdom; the Department of Neurology (Drs. Hodgkinson, McLeod, and McDougall), Liverpool Hospital, University of New South Wales, Liverpool, Australia; the Department of Diagnostic Radiology (Dr. Barkhof), Free University Hospital, Amsterdam, the Netherlands; and the Department of Epidemiology and Biostatistics (Dr. Adèr), Faculty of Medicine, Free University, Amsterdam, the Netherlands.

Those two known cases are anecdotal, they are not in the medical literature.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

OK, so I guess they are also concluding that it's not a big deal if blood DOES reflux back into the brain? It seems like blood not draining properly from the brain would be a bad thing.

Does it seem to anyone else like we're getting a little off topic with this whole "OK, I found 10%", "no, wait, I found 90%", "oh, no, it's 110%", "no, it's negative 1%" thing? What happened to the issue of what happens physically when de-oxygenated blood appears in the brain (even if it only shows up in, say, .123456789% of people)?

Yeah cathyb, but what they are saying is that there is no such thing as reflux.

Again, not attacking the messengers...we'll have to see their research. I'll wait until the papers are published to comment. However there are many, many inaccuracies in that news piece...and I find it curious that vascular-led research around the globe is finding proof of Zamboni's research, while neurologically led studies find the opposite. Hmm.

And I wonder if these neurologists would just let patients with Budd Chiari or May Thurner live (or die) with their "adequate" blood flow and red hair. Good thing the vascular doctors understand chronic venous insufficiency, huh?

The vascular docs had better get publishing.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cece-
Best not to play their game--we know in fact from extensive reporting on this site (and elsewhere) that there were indeed two cases with serious complications (and there might be more that we don't know about).

The issue here is not to nit-pick--it is to read their critique and find the serious flaws, if they are there, and then to discuss these flaws.

Maybe this should be brought to Dr Sclafani's attention ?

I can't wait!!!!!!!!!!!!!

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

Sigh............ not worth reading to the end. You know where it's going.
" ... Zamboni's theory has no scientific proof...."
Well, the f*&king autoimmune theory has no scientific proof either, and the f*&king medications we take are not working and the f&*king chemotherapy is way more dangerous than balooning the narrowed veins.
Don't even get me started on the "placebo thing " for heaven's sake how stupid do these guys think we are?
I'm too sick to argue and ... you should never argue with idiots.
So my dear fellow MSers or better said CCSVIers, keep on getting liberated.
Instead of paying the insurance for expensive med. that doesn't work and damages your liver/kidney/etc, spend money and get liberated.
health to all,

Dear Vivianne766, June the 26th on my way to Dr. Kosteki

Oh and just wanted to say that I pay $338 every month for health insu. to cover my MS medication and $10 for med's when I get them every month so that's $348 min. for the med./insurance industry.
and I've been told that I don't pay much.
My med. is around $2800 a month.

sure, shye...I get frustrated when I see them trying to have it both ways. To me 'medical literature' has a specific meaning, which is research published in journals or compiled in reviews and textbooks.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

My own neuro had a deer in the headlight look when I mentioned the fact that MS patients were posting before and after videos in regards to treatment. I mean how do you explain when patients can barely walk or not and then the day after treatment are fine. Yes, I know,, not everyone but still quite a few are seeing improvement. IF blowing open veins has no effect on the disease then why are patients improving? GIVE ME A BREAK!

I think the up-and-down nature of MS + placebo effect could account for that, which is why controlled studies are needed.

http://en.wikipedia.org/wiki/Placebo

Where is the CCSVI mouse model ?? It seems like that would be proof enough ! I hope someone somewhere is feverishly working on a CCSVI mouse model for MS.

ozarkcanoer