European interventional radiologists are against CCSVI

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European interventional radiologists are against CCSVI

Postby thisisalex » Wed Dec 01, 2010 2:57 am

CIRSE (Cardiovascular and Interventional radiological Society of Europe http://www.cirse.org/) has just released an announcement about CCSVI. I don't find the original announcement on the internet, but here is the hungarian version please try to read it with google translate:

<shortened url>

it looks like a very narrow minded stuff with lots of problematic statement...

Signed by dr. Barkhof who is famous about the Barkhof - criteria... used in diagnosing MS.
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Postby joge » Wed Dec 01, 2010 3:55 am

Barkhof & Polman (neuro) are as a team wellknown. Their specialty is early diagnosis of MS.

VUmc, Amsterdam, (dr. Bob v. Oosten) recently published negative about the relation between CCSVI & MS.

I guess Barhoff cs. have a lot of influence in the medical community... sadly..
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Postby happydance » Wed Dec 01, 2010 6:23 am

Hungarian to English translation
European radiologists: a lot of controversy about the CCSVI

2010th December 01, Wednesday

Intervention by the European Society of Radiology (CIRS) has recently published a commentary in the official cerebrospinal chronic venous insufficiency (CCSVI) scientific position. Below is a complete communication CIRS original Hungarian translation available.

The clerk professionals commentary:
JAReekers Dept of Radiology, AMC, University of Amsterdam, The Netherlands.
MJLee Department of Academic Radiology, Beaumont Hospital, Dublin, Ireland.
A. M. Belli. Department of Radiology, St. George's Hospital, London
F Barkhof Department of Radiology, MS Center Amsterdam, VU University Medical Center, Amsterdam, The Netherlands

Chronic venous insufficiency or cerebrospinal CCSVI some people suspected by the new theory, which is a direct causal relationship with this vein, with symptom of multiple sclerosis (MS). (1) The core of the theory that the jugular vein and / or narrowing of the azygos vein in the brain due to inadequate venous drainage. They claim that this specific ultrasound criteria (which venous insufficiency hemodynamic severity score - VHISS - called) is characterized by abnormal blood flow within the venous drainage of the brain disorder or vérelfolyási problem, which is the deposits in the area around the ventricles. (2) CCSVI The theory is that they are very similar to the deposition of the lower limb veins around the depositions of iron, which occurs in chronic deep vein thrombosis. Dr. Zamboni, the first tuple of this new theory, balloon dilatation of the blood flow treat this disorder, thus curing the CCSVI and this proportion is - according to some accounts - alleviating the symptoms caused by MS. However, this theory does not fit into the pathophysiology of MS is now generally accepted scientific data on the weights.

At the same time increasing the CCSVI balloon angioplasty and related acceptance around the world, ignoring the fact that the procedure is not supported by scientific evidence. Further argument against is that most information comes from a single source. The treatment is a treatment called liberation and the results can be viewed on YouTube. There are well-documented reports that according to this improved quality of life of MS patients after treatment. However, there are no data in patients in whom treatment was unsuccessful, although this would provide a much more balanced picture. It seems that the CCSVI and thus the successful treatment of MS in the current forum is the Internet. The CIRS office in Amsterdam and the Centre of SM-20 receives a request about 10 months. CIRS is a lot of intervention radiologist turns to for advice. A multi-center world perform balloon dilatation of stent surgery, with or without due CCSVI. So far, no currently available test data and no randomized clinical trial (RCT) process. This new treatment for patients based on anecdotal evidence and available on the Internet "testimony" is based on the reports. The CIRS feel that this is not a good basis for the adoption of a new treatment for possible complications of the procedure, an often desperate patients.

The inconsistency is more than the argument

The CIRS believes that the CCSVI theory in its current form poses a number of contradictions. First: this is the essence of the new theory CCSVI syndrome, ie, abnormal venous drainage from the brain. The head of the anatomical variations of venous drainage of many shows, which is not very well cataloged in most textbooks. The head and neck veins on the keyboard also show great variability. Those in the intervention radiologists who practiced in the parathyroid samples, well aware of the enormous anatomical diversity of veins. In addition, the jugular vein of the great variability in addition to the two known natural narrowing, as well as other prominent theory CCSVI vein, the vena azygosnak no role in venous blood draining from the head. The azygos venous blood, leading to the spinal cord, but not alone, as many intercostal vein also provides the same function.

In addition, this imaging test done supine position, which affects blood flow and image interpretation. A recent randomized comparative studies have been carried out so-called venous constriction in patients with MS and not MS. (3-4) both studies show that there is no difference in the incidence of venous congestion between the two groups. This seems a very strong argument against the existence of CCSVI. However, the doctors who handle CCSVI pointed out that these studies have been carried out in the venous hemodynamic insufficiency severity score (VHISS) tests. Another part of the theory that the venous obstruction should be treated. However, where there is a real hemodynamic venous obstruction, there should be pressures, which should result in the gradient disappears after successful balloon dilatation. It has been demonstrated, and balloon dilations CCSVI because investigators have confirmed that the so-called never stenosisnál no measurable pressure. The process is carried out so they say, it's not the pressure gradient, but the pattern changes caused by the narrowing of the outflow, and this mintaváltás pathological entity.

Really, this success is what to say?

There is still a matter of successful anecdotal treatments. Undoubtedly there are patients whose symptoms subsided after treatment with the CCSVI, but could easily be that it's just placebo effect, as we used to see in this case. A lot of medical treatment, the success of the foundation, or assisted in the placebo effect. There is nothing wrong per se with the placebo effect, as long as we are aware that this plays a role. It is also known that the more invasive treatment, and the more the physician considers that the treatment is effective, the greater the placebo effect. In addition, the SM from the emotional impact may be factors. Anyway, the characteristics of the disease relapses and spontaneous improvement. It is therefore difficult to collect the scientific evidence supporting the theory CCSVI-t RCT without proof.

The dilemma now is that by being promoted to the new treatment procedure, the success of some pioneering early szétkürtölte the popular press, and also reduced the chances of a properly conducted investigation, because of concern, may be unethical, if not offered to the patient, this new and promising treatment. The doctor, however, the primary task of "Do not harm" so as not to damage. We believe that the damage can occur if a certain treatment is offered, without any scientific evidence of the effectiveness of the procedure would be available. A pseudo-arguments like "There's nothing else." or "Do you know how much you paid for a kezelésekért, which is not six?" may not be truly valid and they are not scientific arguments.

Without research, there is no evidence

Faced with these contradictions, and because the effectiveness of the treatment CCSVI for lack of evidence, some of the pioneers of treatment of MS patients with their work is called phase 1 study. However, a phase 1 study protocol, the medical ethics committee approval, leaflet, consent, or without the supervision of the safety committee is not appropriate. The CIRS believes that a properly conducted investigation and scientific rigor to solve this dilemma. We believe that there is a need for prospective randomized "placebo" arm examination. Independent company to monitor this investigation, for example. Intervention by the European Society of Radiology (CIRS) and / or the European Society of neurologists would be ideal.

As physicians and interventional radiologists, would certainly hope that all the anecdotal reports, which reported an improvement in the quality of life, and confirmed that patients will benefit from this new treatment. We, the public has long been used radiologists pioneered treatments which have proven very beneficial for patients over the past 30 years. Fibroid embolization is the latest in the vertebral and carotid artery stent surgery plastica is already well proven procedures in a randomized study. We believe that the CCSVI treatment should be assessed in this way. Furthermore, we believe that as long as there is no real scientific data on the t-CCSVI and dilation of the balloon, this treatment is not recommended for the treatment of MS patients outside of a well-designed clinical trials.

(Translated by dr. Klotild Matthias)

Links:
1: Zamboni Fri The big idea: iron-dependent Inflammation in venous disease and multiple sclerosis in Proposed Parallels. J R Soc Med 2006; 99:589-93.
2: Zamboni P, Menegatti E, Weinstock-Guttman B, Schirda C, et al. The severity of chronic venous insufficiency in cerebrospinal Patients with multiple sclerosis is related to Altered cerebrospinal fluid dynamics. Func Neurol. 2009; 24:133-8.
3: Krogias C, Schröder A, Wiendl H, Hohlfeld R, Gold R. Chronic cerebrospinal venous insufficiency "and multiple sclerosis: critical analysis and first-Observation in an unselected cohort of MS Patients. Nervenarzt. 2010; 81:740-6
4: Doepp F, Paul M, Valdueza JM, Schmierer K, Schreiber SJ. No cerebrocervical venous congestion in Patients with multiple sclerosis. Ann Neurol. 2010; 68:173-83.
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Postby Leonard » Wed Dec 01, 2010 8:53 am

Thousand of patients have been treated, evidences accumulate; this is no longer single sourced.
Treatment centres are mushrooming, around the world.
The liberation treatment grows like a grassroot campaign.
More and more people will be able to go local, and get proper after care.
A position statement by CIRSE like this would be a bit unfortunate.
Let individual IR and patients decide on their own faith.
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Postby cheerleader » Wed Dec 01, 2010 9:11 am

What I find interesting is that it is neurological/radiological teams head up the European IRs--CIRS. Barkhoff does have a lot of influence. In the states and Canada, the IRs are lead by cardio-thoracic doctors. Perhaps this might explain the radically different response to CCSVI angioplasty? Dr. Dake explained to us that he understood central venous stenosis of the major veins in neck and chest---since he treated superior vena cava syndrome and worked with the heart.

Hopefully more research in the US will interest the CIRS to investigate CCSVI. And maybe the cardio-thoracic doctors of the CIRS will speak up.
interesting,
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby joge » Wed Dec 01, 2010 10:38 am

I'm reading about CIRS, but shouldn't it be CIRSE?

http://www.cirse.org/

Searching for CCSVI on their site: ZERO results.

Not the talk of the town overthere...
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Postby TMrox » Wed Dec 01, 2010 10:52 am

There is still a matter of successful anecdotal treatments. Undoubtedly there are patients whose symptoms subsided after treatment with the CCSVI, but could easily be that it's just placebo effect, as we used to see in this case. A lot of medical treatment, the success of the foundation, or assisted in the placebo effect.There is nothing wrong per se with the placebo effect, until we realize that this plays a role. It is also known that the more invasive treatment, and the more the physician considers that the treatment is effective, the greater the placebo effect.


I thought this was a joke when I first read it, "there is nothing wrong per se with the placebo effect." That's what I tell to all my gone symptoms: daily migraines, the spasms, the elevated liver enzymes, the paresthesias, the pins and needles.
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 eve » Wed Dec 01, 2010 11:07 am

We're so screwed in the Netherlands with van Oosten, Polman and Reekers - no neurol dares to move without their say-so.
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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Postby cheerleader » Wed Dec 01, 2010 12:12 pm

eve wrote:We're so screwed in the Netherlands with van Oosten, Polman and Reekers - no neurol dares to move without their say-so.


It appears that the Netherlands' physicians are the most vocal, and the president of the entire EU group of IRs, CIRSE association, is Jim Reekers, who is on faculty at VU in Amsterdam with van Oosten, Barkhof and Polman.

I'm wondering if they really, sincerely would like to monitor the BNAC, Albany and Stanford placebo blinded clinical trials....

We believe that there is a need for prospective randomized "placebo" arm examination. Independent company to monitor this investigation, for example. Intervention by the European Society of Radiology (CIRS) and / or the European Society of neurologists would be ideal.


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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby joge » Wed Dec 01, 2010 12:21 pm

More about Jim

http://www.amc.uva.nl/?pid=151&rm=perso ... rkerid=359

and (sorry, in Dutch). In this video, he advises Dutch collegues against CCSVI and CCSVI treatment. Published recently in 'Medisch Contact'.

<shortened url>

'It's desturbing that, because of the new media, it has become imposseble to show, with reasonable scientific arguments, that this story is not true', is the first phrase of this video.
<ZAMBONI VIDEO CLIP>
Jim Reekers: 'Scientificaly, there is no basis, to assume that this is true. What you often see and hear is: how is it possible that people feel better after this treatment? It is true, that people feel better. I myself spoke to somebody who got better. Also, on the internet you can see testimonials, however, never of people who didn't feel better. But the placebo effect is well known. If docters believe in it, very often you see improvements, without objective evidence. Also, this treatment has never been proven. Never has been 'measured' that people really improve. What is also disturbing, is that such a treatment, if we did it here, would cost four or fivehundred euro's. For less than sixthousend euro's you cannot have the procedure done (by a commerial Dutch company). When you go to Poland, you pay ten thousend euro's. When you go to Kuwait even more. It's nothing more than offering people false hope. And making profit.
What dr. Zamboni suggests is that all the studies that are done are no good, because they are not done according the 'Zamboni-criteria'. The good thing is, in Tilburg (Dutch city) they are going to do it according to the Zamboni criteria. Maybe this will give an answer that supports what Zamboni is suggesting.
That's why I want to warn all collegues : when patients come with questions about MS, try to inform them: this treatment, at this moment, is absolutely not proven. It is based on no real evidence.
Last edited by joge on Wed Dec 01, 2010 10:57 pm, edited 1 time in total.
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Postby cheerleader » Wed Dec 01, 2010 1:33 pm

Why I find interesting is that one of the more outspoken EU IRs,
Dr. Roel Beelen, who is now conducting research into CCSVI,
practices in a country which has NOT joined CIRSE.
Belgium has an independent interventional radiology society--
The Royal Belgian Radiological Society.
Dr. Beelen will be publishing in their own independent journal.

And I also noted that Dr. Thomas Vogl, who is studying
CCSVI in Frankfurt at the Goethe University, and is practicing
in a CIRSE affiliated country,
is involved with the CIRSE "educational dept."
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Postby frodo » Thu Dec 02, 2010 1:13 am

Who cares if CCSVI is related to MS? The important thing is that they admit that they don't know the consequences of living with a stenosed jugular vein, and they admit that a stenosis is not a normal condition.

If they deny a treatment of a potentially dangerous condition as a blocked vein, they are acting against their medical duties. More if they say that they don't know the consequences this problem will have.
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Postby Leonard » Thu Dec 02, 2010 3:22 am

cheerleader wrote:What I find interesting is that it is neurological/radiological teams head up the European IRs--CIRS. Barkhoff does have a lot of influence. In the states and Canada, the IRs are lead by cardio-thoracic doctors. Perhaps this might explain the radically different response to CCSVI angioplasty? Dr. Dake explained to us that he understood central venous stenosis of the major veins in neck and chest---since he treated superior vena cava syndrome and worked with the heart.

Hopefully more research in the US will interest the CIRS to investigate CCSVI. And maybe the cardio-thoracic doctors of the CIRS will speak up.
interesting,
cheer


You find the same names on this critical article from earlier this year.
http://www.konkretia.net/pdf/Neuro_Critique.pdf
Also look further to the back of the article because a few more names are given there. It shows the circle they are in.
Clearly these people - my compatriots - have not yet made the mental click.

This is all about culture, and we know how difficult that is too change.
And that is not only so in this medical world; I can write a book on that but then for another sector.
This article touches on this in quite a subtle way..
http://onlinelibrary.wiley.com/doi/10.1 ... 340153/pdf

When something as disruptive as this happens, the new knowledge and the developments will come from elsewhere.
These people from the VU will go flat on their face; they are already overtaken left and right by others, including in the Netherlands.

In Europe we may not be quite as homogeneous as your society is, but Europe is well-organised and a multitude of coordination mechanisms exists.
It would be unfortunate if these people would be allowed by the wider constituency of IRs to misuse this European circle to create some sort of an artificial control point to try and slow down things.
I hope and I trust that some correction mechanisms are in the system to prevent that from happening.
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Postby cheerleader » Thu Dec 02, 2010 9:04 am

Leonard--
I love that paper you linked on vascular/neurological heirarchy...we've had it on here many times. It's a good read.

I consider the US much less homogenous than the EU. (Maybe you meant heterogenous?) We are a melting pot. Granted, it's still mostly white men in positions of power in the states---but with an African American president, women in Congress and cabinets and many people of color and varied ethnicities in our leadership roles, we've been changing. My teenager is friends with kids of all races and religions from all over the world...he knew last night was the first night of Hannukah, speaks Spanish and plays jazz.

This experience with CCSVI had opened my eyes about what is truly special about the US. Yes, commerce is still king...but our country is used to radical and inventive ideas leading to seismic shifts in business or culture. Think Google, Apple, Microsoft, Facebook, Jimi Hendrix, Dr. Norman Shumway, rap and Frank Gehry... (OK, that's a random list...) Perhaps it is good not to be too well-organised?

In meeting and working with the US doctors investigating CCSVI, I have found open-minded and caring individuals who are accustomed to thinking outside the box, and used to getting some flack for their innovative thinking. I can only hope that their published studies will encourage further investigation in the EU. I know it's been tough for Dr. Zamboni and his team in his homeland....
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dx dual jugular vein stenosis (CCSVI) 4/09
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Postby Leonard » Fri Dec 03, 2010 2:27 am

Joan, thanks for your reaction. The fact that we are exchanging ideas here between Europe and the US and that this can be seen by the whole world is due to US policies, namely those that made the Internet thrive. Your country has (at least had) the power to move old things and entrenched interests away, to bravely pursue new ideas, new lines of thinking. Let us hope that for ccsvi we get that same chance.
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