IVCC/CCSVI, articles et liens de ce mercredi.

Publié le par Handi@dy

Barre google de traduction indispensable!

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Calls for MS liberation treatment grow louder

par CCSVI in Multiple Sclerosis, jeudi 27 mai 2010, à 05:54
Monday September 7, 2009
Bologna Italy
CCSVI PreCongress Meeting
6pm

Dr. Paolo Zamboni welcomes the gathered doctors and guests to the CCSVI Cenaculum Studiorum.
His topic is CCSVI, How to Move Forward-
He states that there are professionals gathered here from the studies of the blood’s path on the blood brain barrier side to the nervous system and that we all must share opinions and have exchanges. We need to dialogue and to learn from each other.

The origin of Dr. Zamboni’s work in Multiple Sclerosis began when he was a vascular surgeon in Sardinia, Italy. Sardinia is noted for its high level of epidemiology in MS in the general population. During 1987-1992, he noted a high prevalence in children with malformations of the jugular veins. His paper on this topic, “So-Called Primary Venous Aneurysms” was published in 1990. He noted AV fistula and a closed ring stenosis that could not be crossed by their blood in these children, external compression and this vascular anomaly appeared to be congenital. 20 years later, 90% of these children he studied have been diagnosed with MS.

In 2002, Dr. Zamboni noted that positive urine hemosiderin- a disease marker used to assess the severity of chronic venous disease- was administered to MS patients while they were in the midst of relapse. All of the MS patients tested positive. After he published a paper on this, he received an e-mail from Dr. FA Schelling- which referred him to Dr. Torben Fog’s paper- “Topography of Plaques in MS” The note from Dr. Schelling stated that perhaps Dr. Zamboni would now find what he was looking for...that the lesions of MS spread counter current from normal venous flow, and that there was where he should begin to study.

Dr. Zamboni then began to dedicate his work to develop a system of diagnosis of venus flow in the brain. He has found 100% correspondence with CCSVI and MS. He believes an international training program in Echo-Color doppler needs to be developed. and that there needs to be cooperation of neurologists and vascular surgeons. He mentioned endothelial disrupters such as smoking, cpn, EBV, and intracellular iron deposition as all being means of exacerbating this mechanism of disease. He spoke of his collaboration with neurologist Dr. Fabrizio Salvi of Bologna and the Jacobs Neurological Dept of SUNY Buffalo as being an example of such a collaboration.


Dr. Robert Zivadinov, Assistant professor of Neurology at Jacobs Neurological Institute at SUNY, Buffalo and Buffalo Neuroimaging and Analysis spoke next as to the Aim of the Meeting. He stated that we need to synthesize the current concepts about evaluation, pathogenesis and clinical relevance of CCSVI in MS. Individual variability in MS makes identifying the causative process very difficult.

He stated that the Journal of Vascular Surgery will soon be publishing the open label EVT intervention results of Zamboni, and that the current study at Jacobs, which will be completed in October ‘09 with the original 8 patients from America- has confirmed Dr. Zamboni’s results 100%. Dr. Zivadinov said that Jacobs is now recruiting and training new centers to test, diagnose and treat CCSVI in America.

He stated that he believes the next ten years will see 20,000 papers on CCSVI in vitro, vivo and animal studies. He reiterated that we need cooperation of various practices to find the solution. We need both the neurological and vascular perspective. He will be presenting at ECTRIMS after the Bologna conference.

Dr. Claude Franceschi- Director of the Paris Hospital Vascular lab spoke next on the Hemodynamic Factors of CCSVI.
The venous system is responsible for draining tissue, and the central parameter of drainage, transmural pressure, is changed when venous drainage is impaired. If TMP is too high, tissue suffers, edema and inflammation and vein dilation results.
Extra pressure on the nervous system comes from cerebral spinal fluid. Hydrostatic pressure is posture related- changing when the patient is supine or standing. The residual pressure- in which arterial blood surges into the venous system- is reduced in micro circulation. There is an increase in DR (downstream resistance) which is blocked by an obstacle. Obstacles can cause collateral veins to open as vicarious shunts and CSF will be excessive, causing edema and plaques. Cerebrospinal tissue is more sensitive to this. He believes the answer to CCSVI may lie in postural therapy, or a direct change in pressure via the Liberation technique or stenting.

Dr. Fabrizio Salvi- Head neurologist at the University of Bologna spoke of his clinical observations as a neurologist working with the CCSVI paradigm for three years. He told us that in 500 MS patients he has tested now, 100% have CCSVI. He stated the doppler is a wonderful tool of diagnosis and their needs to be training in the technique. He has a hypothesis as to why there are different varieties of screening in high risk subjects- because prognosis is related to the type of malformation. He wants to answer the question if the Liberation procedure is a disease modifying treatment in MS. He will give proof tomorrow that there is plasticity and remyelination in the CNS and the Liberation procedure have proven to activate remyelination in the CNS as shown by MRI.

“Yes!!!” stated Dr. Salvi...”no one is lost!!”

Dr. Patricia Coyle of Stony Brook University asks a question-
“How do we diagnose CCSVI?” The first answer comes from Dr. Zivadinov-
Doppler investigation is the beginning. If there is non-direction of flow in any body condition, or continual flow in the opposite direction- CCSVI is implicated. Transcranial doppler in the deep cerebral veins shows reflux. And then it is necessary to locate the stenosis. In MS, the jugular/Vertebral veins flow is consistently subverted. Dr. Zivadinov states that they had tested a 25 year old girl who had come into Jacobs as a control. A healthy girl, who presented with bilateral jugular occlusion. Months later, she had her first CIS attack of MS, and an MRI was done to show two lesions. She also has a familial history of MS. He reiterated that all of the doppler testing was blinded, yet it corraborated CCSVI in MS 100%.

Dr. Dake then stated that he had also tested a relative of a confirmed MS patient. A woman who had not been diagnosed with MS, but who presented at Stanford with jugular occlusion and a variety of neurological deficits, yet no MS diagnosis. She also showed lesion activity on an MRI, and he stented he occlusion the day before he flew to Bologna.

Dr. Zamboni makes the final statement to this question...he wants to articulate again that flow is more important than stenosis- especially as a preliminary diagnostic tool.

We are dismissed and all walk to a lovely formal dinner at the beautiful estate, Circolo della Caccia.
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Speaking to Harmony

 *Professor Jelinek / Annual General Meeting of People with MS (Victoria)

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What are we to make with CCSVI?

What are we to make of current developments in the theory of chronic cerebrospinal venous insufficiency (CCSVI), the theory that multiple sclerosis is caused by back pressure from narrowed veins taking blood back to the heart from the brain? Professor Paolo Zamboni, a vascular surgeon from the University of Ferrara, Italy, has turned the multiple sclerosis world on its head in recent years, postulating that this back pressure leads to blood leakage around small veins in the brain, iron deposition from the blood and subsequent inflammation, producing the typical lesions of MS.

Zamboni’s motivation in proposing this hypothesis is clear. His wife, Elena Ravalli, was diagnosed with MS in 1995 at the age of 37, and Zamboni was a vascular surgeon who had previously published extensively about venous back pressure causing inflammation and ulcers in the legs. His research team’s many publications have led to people with MS world-wide clamouring for access to angioplasty to open these venous narrowings. But in my view, it is difficult to say with any certainty whether CCSVI is a real entity, and if so, what causes it, whether it causes MS, and what role angioplasty has to play in it, without further research. I have summarized the current research on CCSVI under Causes of MS on this site (http://www.overcomingmultiplesclerosis.org/About-MS/Causes-of-MS/CCSVI/).

Much of the initial optimism about CCSVI has been thrown into confusion by two recent publications in Annals of Neurology. These two publications, one from Germany and another from Sweden, through different methodologies, found no real evidence of venous obstruction in people with MS compared to people without MS (http://learningtolivewithms.blogspot.com/2010/08/studies-cast-doubt-on-new-ms-theory.html).

The whole CCSVI issue is clouded by conflict of interest. Conflict of interest in this case is when a researcher, research group, or commentator have a vested interest in the subject under study and are therefore potentially biased. Conflict of interest can come from many sources; it is commonly financial, such as when a researcher stands to profit from the product being researched (such as when a drug company conducts a clinical trial of a new agent they have developed); but conflict of interest can also be related to career advancement, or prestige, or relationships that researchers have.

For instance with CCSVI, Zamboni has a clear conflict of interest in that his wife has MS. I understand that conflict perfectly, given that my mother died of MS. Personally, I find that such a conflict of interest can be very helpful, in that it often makes the researcher very passionate about the research, and more likely to persevere in the face of adversity. But it can cloud the judgement of the researcher; I am aware that to some extent my conflict of interest produces a bias towards research that supports things that can be actively done to improve outcome, like diet, exercise, meditation, etc, whereas I tend to be biased against research that suggests such interventions are not helpful. But I try hard to remain objective. Zamboni may well have similar bias towards finding a cure, and towards vascular techniques, and this may subtly influence his assessment of ultrasound scans, for example, when he knows that the person being scanned has MS. Those of us who use ultrasound daily know just how subjective and operator-dependent the interpretation of these scans is.

Some people with MS have argued that most neurologists have a conflict of interest against CCSVI because they have close ties to the pharmaceutical industry, and the possibility of angioplasty taking over from drug therapy as the main therapy for MS threatens them. There may be some truth to this, although in my experience, most neurologists would be delighted if a cure was found for MS tomorrow, whether it was angioplasty or any other cure.

There may also have been subtle conflict of interest in the publication of the two negative studies in Annals of Neurology recently. The editor of Annals, Stephen L Hauser, who approved publication of the papers, was the neurologist who complained to Stanford University after one of his patients required open heart surgery to remove a stent that had dislodged from a cerebral vein after angioplasty for CCSVI. It was this complaint that stopped Stanford’s angioplasty program for people with MS. Although the peer review process ensures that independent researchers assess the papers and provide a recommendation to the editor about publication, it is the editor’s call in the end whether the paper is published. As a journal editor myself, I am aware of the extent to which the editor has a guiding hand in what is published.

One thing is sure: at the end of a lot of research, we will know whether CCSVI has any role in causing MS and whether venous angioplasty has any role in treatment. Fundamentally, CCSVI is either a real phenomenon or it is not, and a concerted research effort will answer that question, and we will know the answer for sure. For now, the Buffalo findings suggest it is real, with their results of 500 people, some with MS, some with no illness and others with other neurological diseases, showing that around 55% of people with MS had the criteria for CCSVI, about 22% of people with no illness had the criteria, and around 43% of people with other neurological conditions had the criteria. But these findings are difficult to interpret given that they have not yet been published; also, they contradict the complete 100% association found by Zamboni between CCSVI and MS. But, they are far more believable; they suggest that the presence of venous abnormalities of the cerebral circulation may roughly double the risk of having MS or other neurological disease. It will be important to see how the results are presented once the methodology of the study and its findings undergo rigorous peer review for publication.

Now we have other studies from reputable groups of neurologists who have used similar or other techniques to try to demonstrate CCSVI but have been unable to find any evidence of it. It is difficult to summarise these conflicting data. From the point of view of a specialist medical practitioner of over 30 years’ experience, an academic medical researcher, and a person with MS, with my own peculiar conflict of interest, I make the following observations.

Zamboni developed an ultrasound technique for finding venous abnormalities in the brain, found some abnormalities only apparent with this technique which he termed CCSVI, developed the criteria for its diagnosis, and developed a treatment. Other researchers investigating the condition have either found a significantly different incidence of CCSVI in MS or not found it at all. This raises the question of the extent of the un-blinded observer bias in the ultrasound assessments of the people with MS in the early studies, and hence the reliability and validity of those early conclusions. Consequently, I don’t have any idea whether CCSVI exists or whether it has any role in causing MS. I just don’t think we yet have enough data on which to base an opinion about this, and much of the data are conflicting. Further, I have no opinion about whether venous angioplasty is likely to be of any benefit in MS, even if it is shown that a person has CCSVI. The fact that in the only formal study of the procedure there was no difference in relapse rate for the group before and after the procedure is of concern. Further, the single death from cerebral bleeding and the serious side effect of a venous stent migrating to the heart, need to be weighed against any potential benefit.

As a person diagnosed with MS, I hope there is something to the CCSVI theory and that effective treatments for MS might become available as a result; as an academic researcher, I have to say it is important for us to be patient while the medical research community goes about studying this issue. Certainly at the moment, along with the original CCSVI researchers, I would not advise anyone with MS to try angioplasty, except in the context of a properly run research study. We simply don’t know if it would work and what the side effects are likely to be, particularly long term (what would happen if venous constrictions get worse after being ballooned open for instance?: it appears they often re-develop quite rapidly).  Clinics are springing up charging a lot of money to have this procedure; judging by the location of some of these clinics, the medical standards involved in the procedure are questionable and the outcomes very uncertain.

It is important for all of us involved with MS to keep an open mind about CCSVI, whatever our own particular conflict of interest. CCSVI may well be an important part of the MS jigsaw, but until we have more information, it is not possible to say much more than that. We urgently need more research, and I strongly support governments, funding bodies and MS societies prioritising research funding to this area. With an appropriately concerted research effort, we should not have to wait too long to know the real answer."

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Community raising funds for MS treatment

*New Studies Show the MS Drugs Don’t Slow Progression  (de l'inefficacité des traitements de fond SEP qui sont nocifs et n'empêchent pas l'évolution de la maladie. PDF)

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Research a necessity

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Nonsurgical Vertebroplasty Is Effective Pain Treatment for Spinal Fractures Caused by Osteoporosis or Bone Tumors

*CCSVI Information and Links

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MS therapy divides even sufferers, as social media drives hype (parce que les médias ignorent la procédure et ne savent pas que parfois il faut attendre pour voir les résultats, jusqu'à 18 mois selon Zamboni, ndlr)

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Bay Area women participate in MS treatment (avec vidéo)

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 CCSVI Victoria(toutes les photos du congrès)

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Treatment gives man new lease on life

*I sent this letter to newspapers across Canada.


Liberation Treatment Should Be a Non-Issue

Is dying better than angioplasty? Is progressively getting more disabled better than angioplasty? Is going blind better than angioplasty? Is lying in bed missing your kids growing up better than angioplasty?

We all know the choices we would make given these alternatives. Here in "democratic" Canada these choices have been taken away from people who have Multiple Sclerosis. Our federal and provincial governments have prevented doctors who want to help people from fulfilling the oath that they took when they became doctors.

Angioplasty is a well known, standard medical treatment. It is not a drug and clinical studies are not needed to prove that it is safe. The approximately 1,000 successful liberation treatments done to date around the world should be enough to encourage the Canadian health-care system to allow the treatment as an option to patients.

The arguments against the Liberation Treatment are: “it hasn't been proven to help people with MS”; “not all the clinics are using the Zamboni method”; “Stents are dangerous in veins”; “we only have anecdotal evidence of the results”; “we don’t know the long term impact”; “the veins can re-stenos”; “not everyone who has MS has CCSVI”.

If we don’t do the Liberation Treatment and track the results we will never be able to prove anything. There is a global community of doctors that are performing the procedure, sharing their experiences and learning and improving together. We are falling way behind because we are not even in the game! Thousands of dollars are leaving Canada because we refuse to listen. The MS Society is not listening to its members; the provincial and federal governments are not listening to their constituents; the health care systems are not listening to their patients. Brad Wall is the first person in power who has stepped forward to say we need to do this.

Pharmaceutical companies control the medical research that is done because they control the money. This procedure does not need pharmaceuticals so there is no money to do the procedure. Or so it would seem! Many people with MS: take drugs that cost over $20,000 a year – paid for by insurance companies and governments; are on disability – paid for by insurance companies and government; see doctors regularly – paid for by governments; have MRI’s – paid for by governments; don’t work and therefore don’t pay income tax and may be on social assistance – paid for by governments.

If we could change this scenario in just a few of the thousands of Canadians with MS we could easily pay to do the procedure, track the results and become part of the global medical community that is sharing information. We don’t need to do everything ourselves. We don’t need to prove everything ourselves. We could start with the many Canadians that have already had the treatment. Follow them, collect the data about them.

What we need to move this forward is:

-         Introduce compassionate legislation so that anyone can get medical treatment for compassionate reasons

·         Allow the Canadian doctors who’ve already been trained to start doing the Liberation Treatment

·         Allow other interested vascular specialists and radiologists to get the training that is needed to ensure they know how to test for CCSVI and do the angioplasty

·         Set up a tracking system to gather data about everyone who is tested and treated.

·         Include open minded neurologists to follow their patients before and after treatment

·         Connect with the global community of doctors to share information

If governments really feel that we can’t afford to do this, call it an elective procedure and charge a fee for having it done. At least the money would stay in Canada and benefit Canadians.

Most importantly, allow us to make a choice about our life. Don’t make the choice for us because you’re scared, sceptical, or think you know best.

Verna Mang

I’ve had the procedure and I’m improving for the first time in over 14 years."

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MP Mark urges province to support experimental MS treatment

*La société canadienne de SEP se réveille:

FAQ on MS Society of Canada-Funded CCSVI Studies
MS Society of Canada
June 11, 2010

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Michele's MS Journey of Hope

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Campbellford woman hopes to walk again

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Woman hopes controversial treatment will ease her MS

 

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