Chronic cerebrospinal venous insufficiency (CCSVI) is a term used to describe a situation in which the venous system is not able to efficiently remove blood from the central nervous system. It is stated that this is related to narrowing of small venous structures in the neck, chest and spine. The suggested mechanism involves the development of ‘substitute circles’ of venous blood vessels in an attempt to facilitate drainage from central nervous system pathways. The hypothesis goes on to suggest that because these compensatory blood vessels don’t have the same wall integrity as larger veins, they tend to leak blood into the adjacent tissue, depositing iron there which triggers an immune response.
Where can I learn more about CCSVI?
Watch thisseries of videoson CCSVI hosted by the MS Clinic at Health Sciences Centre in Winnipeg on December 14, 2009.
CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis.1, 2,3,4 - As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine.1
People with CCSVI have one or more of the following blockages of the veins that drain blood from the central nervous system:
Stenosis is an abnormal narrowing of the veins that restricts blood flow. Types of stenoses include the collapse of the vein, twisting of the vein, ring-like narrowings in the vein, and other similar obstructions
An abnormal valve, septum, flap, or membrane that blocks or inhibits blood flow through the veins
Atresia, hypoplasia, or agenesis are severe venous problems, including veins that are partially closed, underdeveloped, minimally formed, or almost entirely missing
Click here to see an animation that shows how stenosis in veins draining the central nervous system can cause CCSVI. This animation was provided by Dr. Zamboni.
Last Updated on Monday, 17 October 2011 19:39
Fighting the War Against CCSVI One Patient at a Time
LIBERATION: Fighting the War Against CCSVI One Patient at a Time.
Society of Interventional Radiology Foundation sets research priorities for minimally invasive treatments for MS patients
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Society of Interventional Radiology Foundation: Careful, well-designed studies needed for evaluating patients with multiple sclerosis who have narrowed neck, chest veins; 'much work needs to be done'
June 16, 2011 -FAIRFAX, Va.—Evaluating patients with multiple sclerosis who have narrowed jugular and azygos veins—and the value of widening those veins with angioplasty—warrants careful, well-designed research, noted members of a Society of Interventional Radiology Foundation's Research Consensus Panel. And, the multidisciplinary panel indicated that while specific parameters for a large-scale, pivotal multicenter trial are not now available, that type of study is the "mandatory goal" in exploring a condition called chronic cerebrospinal venous insufficiency (or CCSVI).
"Much work needs to be done to better define, explore and prove the concept of vein obstruction playing a role in causing multiple sclerosis," said Gary P. Siskin, M.D., FSIR, one of the 12 research consensus panel members. The concept that a blockage in the veins that drains blood from the brain and spinal cord and returns it to the heart (CCSVI) might contribute to MS and its symptoms—and that widening those veins with angioplasty to improve blood flow may help lessen the severity of MS-related symptoms—are poorly understood, said Siskin, an interventional radiologist and chair of the radiology department at Albany Medical Center and the co-chair of the SIRF panel. "This is an entirely new approach to the treatment of patients with neurologic conditions, such as MS, and could be transformative for patients," noted Siskin. "Continued investigation is needed in this area. Researchers are clearly very early in their understanding of both the condition and the treatment," he added.
About 500,000 people in the United States have MS, generally thought of as an incurable, disabling neurologic disease¬ in which a person's body attacks its own cells. Currently, MS is treated with disease-modifying drugs, which modulate or suppress the immune response believed to be central in the progression of the disease, and these drugs carry significant risk. "The idea that there may be a venous component that causes some symptoms in patients with MS is a radical departure from current medical thinking. There is a healthy level of skepticism in both the neurology and interventional radiology communities about the condition, the treatment and the outcomes," said Gordon McLennan, M.D., FSIR, an interventional radiologist with the Cleveland Clinic in Cleveland, Ohio, and chair of the SIR Foundation, which supported the project.
The special communication in the Journal of Vascular and Interventional Radiology noted that individuals with MS are seeking treatment for CCSVI "despite the still-limited available scientific evidence." Siskin explained that patients are learning about this therapy and the role of interventional radiology in venous angioplasty through the Internet. "Individuals are discussing it among themselves—through blogs and social networking sites—and then turning to interventional radiologists for this minimally invasive treatment," said Siskin.
To address the needs and concerns of MS patients who feel they cannot wait until definitive studies are completed, many doctors are currently offering endovascular therapy (or angioplasty, the nonsurgical procedure of threading a thin tube into a vein or artery to open blocked or narrowed blood vessels) to patients with MS. These treatments are provided with the hope of helping MS patients who suffer from intractable symptoms, but it is hoped that this work will also provide insights that improve the design of peer-reviewed studies that clarify the role in MS of treating venous disease with angioplasty (and possible stent placement), noted "Development of a Research Agenda for Evaluation of Interventional Therapies for Chronic Cerebrospinal Venous Insufficiency: Proceedings From a Multidisciplinary Research Consensus Panel."
The panel recommended that safety and efficacy trials should be conducted in well-defined and potentially smaller controlled populations under institutional review board approval and supported continued basic science studies to better understand the relationship between closed veins and the subsequent contribution of CCSVI to patients with MS. Siskin himself released details of a study in March that found that angioplasty is safe and hoped that those results would encourage additional studies for its use as a treatment option for individuals with MS. The SIRF report concluded that if such additional studies confirm initial reports in favor of CCSVI diagnosis and treatment, then large-scale, pivotal multicenter trials must be developed.
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Last Updated on Monday, 26 December 2011 13:12
Recent MS study on CCSVI illustrates need for sound science
A journal article last week that reported blocked neck veins in multiple sclerosis patients could be a sign of the disease rather than its cause grabbed lots of attention, especially in Saskatchewan which has Canada's highest rate of MS and whose government is funding clinical trials of a controversial treatment.
The study by University of Buffalo researcher, Dr. Robert Zivadinov, was published in the Neurology journal and found that the blocked neck veins -chronic cerebrospinal venous insufficiency (CCSVI) - was found in 56 per cent of MS patients, 23 per cent of healthy test subjects and in 46 per cent of patients with other neurological diseases.
Even though these findings didn't differ much from preliminary results Dr. Zivadinov had released last year based on Doppler ultrasound imaging of about 500 people, the interest they garnered is indicative of a growing debate about the efficacy of the so-called "liberation therapy" sought by thousands of MS patients now travelling abroad and paying thousands of dollars out-of-pocket to have their veins unblocked.
Dr. Zivadinov found that CCSVI, at 89 per cent, was far more prevalent in patients with the progressive form of MS than in those with the relapsing-remitting form of the disease, at 49 per cent.
"This is clearly a very important thing to take into account and we need to understand whether CCSVI is contributing to the disease progression, or is a consequence of the disease progression," he told the Canadian Press.
The Canadian MS Society, which is funding a two-year study by seven multi-disciplinary teams in Canada and the U.S. (one team includes Dr. Anthony Trablouse of UBC Hospital's MS Clinic and Dr. Katherine Knox of the Saskatoon MS Clinic at the University of Saskatchewan) to investigate the CCSVI-MS link, rightly stresses the need to let proper research carry the debate.
"The evidence to date neither proves nor disproves the CCSVI theory, underscoring the need for additional research," the society said in a statement. "We remain hopeful that the focus given to MS issues lately will continue to yield benefits to people living with MS."
A journal article last week that reported blocked neck veins in multiple sclerosis patients could be a sign of the disease rather than its cause grabbed lots of attention, especially in Saskatchewan which has Canada's highest rate of MS and whose government is funding clinical trials of a controversial treatment.
The study by University of Buffalo researcher, Dr. Robert Zivadinov, was published in the Neurology journal and found that the blocked neck veins -chronic cerebrospinal venous insufficiency (CCSVI) - was found in 56 per cent of MS patients, 23 per cent of healthy test subjects and in 46 per cent of patients with other neurological diseases.
Even though these findings didn't differ much from preliminary results Dr. Zivadinov had released last year based on Doppler ultrasound imaging of about 500 people, the interest they garnered is indicative of a growing debate about the efficacy of the so-called "liberation therapy" sought by thousands of MS patients now travelling abroad and paying thousands of dollars out-of-pocket to have their veins unblocked.
Dr. Zivadinov found that CCSVI, at 89 per cent, was far more prevalent in patients with the progressive form of MS than in those with the relapsing-remitting form of the disease, at 49 per cent.
"This is clearly a very important thing to take into account and we need to understand whether CCSVI is contributing to the disease progression, or is a consequence of the disease progression," he told the Canadian Press.
The Canadian MS Society, which is funding a two-year study by seven multi-disciplinary teams in Canada and the U.S. (one team includes Dr. Anthony Trablouse of UBC Hospital's MS Clinic and Dr. Katherine Knox of the Saskatoon MS Clinic at the University of Saskatchewan) to investigate the CCSVI-MS link, rightly stresses the need to let proper research carry the debate.
"The evidence to date neither proves nor disproves the CCSVI theory, underscoring the need for additional research," the society said in a statement. "We remain hopeful that the focus given to MS issues lately will continue to yield benefits to people living with MS."
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Last Updated on Thursday, 05 May 2011 09:08
University of Buffalo Research Study: CCSVI may result from multiple sclerosis progression
April 15, 2011
A just released study on the relationship betweenmultiple sclerosis(MS) and chronic cerebral venous insufficiency (CCSVI), a narrowing of the extracranial veins that restricts the normal outflow of blood from the brain, found that CCSVI may be a result of MS, not a cause.
The study, conducted by University at Buffalo researchers, appears in the current issue of Neurology, the journal of the American Academy of Neurology.
Robert Zivadinov, MD, PhD, associate professor of neurology in the UB School of Medicine and Biomedical Sciences and president of the International Society for Neurovascular Disease, is first author on the paper.
Zivadinov says of the findings: "Given the intense interest in the hypothesis that CCSVI is a possible cause of MS, independent evaluation of CCSVI was identified as an urgent need.
April 5, 2011 (Chicago, Illinois) — Endovascular treatment of chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis (MS) is safe and can be performed on an outpatient basis.
Kenneth Mandato, MD, interventional radiologist at Albany Medical Center in New York, presented the results of a retrospective analysis of a single center's safety data here at the Society of Interventional Radiology (SIR) 36th Annual Scientific Meeting.
Ziv J. Haskal, MD, FSIR, FACR, FAHA, FCIRSE, chief of vascular and interventional radiology at the University of Maryland Medical Center in Baltimore, spoke with Medscape Medical News and described this approach to treating MS as "the most controversial thing I've seen in almost 30 years."
Dr. Mandato specifically evaluated the results of outpatient endovascular treatment of the internal jugular and azygos veins, identifying and describing adverse events and complications that occurred within 30 days of the procedure. The study consisted of 247 procedures that were performed on 231 patients (147 women and 84 men), who ranged in age from 25 to 70 years. For 99.2% (245 of 247) of the procedures, patients were discharged within 3 hours.
The authors note that procedure-induced arrhythmias occurred in 3 patients during the procedure, so cardiac monitoring is essential. Furthermore, additional studies are required to determine the utility of this procedure as a treatment option for MS. Specifically, research is needed to elucidate patient selection, angioplasty technique, and efficacy.
Dr. Haskal is one of the lead investigators of the SIR Research Consensus Panel on the Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients with MS, convened on October 18, 2010. Last fall, the consensus panel issued a position statement supporting high-quality clinical research to determine the safety and efficacy of interventional treatments for MS.
Approximately 500,000 people in the United States have MS — generally considered an incurable and disabling disease. According to Dr. Haskal, many patients with MS travel to Costa Rica, Kuwait, India, and other countries to receive angioplasty. He described the approach as "Facebook-driven medicine," and explained that there is a concern that patients will be preyed on by individuals who do not have their best interests at heart. He goes even further and adds that the majority of neurologists find this treatment approach to MS to be abhorrent. According to Dr. Haskal, "I cannot overstate the uproar over [angioplasty as a treatment for MS]."
The SIR's position statement notes that the use of any treatment in patients with MS should be determined on a patient-specific basis and should be based on the patient's disease status and tolerance of previous therapies, as well as the scientific plausibility of the treatment. SIR encourages patients with MS to continue to discuss treatment options with their neurologists. At this time, the scientific data do not support the routine use of angioplasty and stents as treatments for MS, but the SIR agrees that the preliminary results are very promising.
Dr. Mandato's research indicates that angioplasty for CCSVI is a safe procedure. If a patient is suspected of having CCSVI, Dr. Mandato suggested to Medscape Medical News that they first receive an ultrasound to determine venous insufficiency. When discussing the technique with Medscape Medical News, Dr. Mandato indicated that this initial research should help physicians understand the safety of the procedure.
Dr. Mandato also discussed the scientific basis of this approach. He explained that the initial idea came from Paolo Zamboni, MD, a vascular surgeon in Italy whose wife was diagnosed with MS. Dr. Zamboni made the connection between venous outflow and pathology in the brain. He published a series of cases of patients with MS who were improving after angioplasty of the jugular vein. This 2009 publication by Dr. Zamboni suggested that CCSVI might contribute to MS and its symptoms (J Neurol Neurosurg Psychiatry. 2009;80:392-399).
Dr. Mandato explained that from a medical standpoint, this publication received a great deal of interest — both positive and negative. Dr. Mandato also noted that more work needs to be done to understand the science behind any efficacy. He asked: "Is the venous outflow adding insult to injury, or are we dealing with abnormal veins that were there from the beginning?" He explained that there are still many theories that have yet to be supported by evidence.
He is currently performing a retrospective analysis of efficacy data from the cohort studied in the safety analysis and is currently gathering data from a prospective trial.
Dr. Mandato and Dr. Haskal have disclosed no relevant financial relationships.
Society of Interventional Radiology (SIR) 36th Annual Scientific Meeting: Abstract 3. Presented March 28, 2011.
Multiple sclerosis patients and endovascular interventionalists were elated when Italian researchers reported in 2009 that they had found evidence of chronic cerebrospinal venous insufficiency in nearly every MS patient they had studied and that in many cases, balloon angioplasty and sometimes stent placement of central thoracic veins reduced or eliminated signs of the disease. Neurologists, on the other hand, suggested that hope might be eclipsing reason in the rush to advocate the vascular procedure, given the single-center study’s small sample size and nonrandomized, uncontrolled design.
The opposing perspectives incited an apparent turf war within the MS community fueled by a firestorm of accusations, with both sides going for the jugular, according to Dr. Jack Burks, chief medical officer of the Multiple Sclerosis Association of America. At issue, he said, is the validity not only of the study results but also of the underlying hypothesis that toxic iron overload in the brain due to chronic cerebrospinal venous insufficiency (CCSVI) might have a primary role in the pathogenesis of MS – a hypothesis that contradicts the compelling body of evidence suggesting that MS is primarily an autoimmune condition.
On one side of the debate are the MS patients and endovascular interventionalists, dubbed the "liberators" by Dr. Burks because of their unflappable advocacy for what has become known as the liberation procedure – the endovascular surgery designed to open the lesions causing the venous insufficiency, he said. On the other side are the neurologists and MS societies, whom he lightheartedly calls the CCSVI nihilists because of their outspoken criticism of the surgery in the absence of more robust, conclusive scientific evidence.
"Neurologists believe the interventionalists are overstating the possible value of CCSVI and that commercial interests are overriding scientific inquiry," according to Dr. Burks, a neurologist and clinical professor of medicine at the University of Nevada, Reno. Patients, armed with anecdotal evidence downloaded from the Internet, are certain that CCSVI surgery is the miracle they’ve been waiting for and perceive the hesitancy of U.S. and Canadian neurologists to embrace the treatment as evidence of a possible conspiracy with pharmaceutical companies who stand to lose billions of dollars if the surgery becomes a first-line treatment, he said. Further, he noted, advocates of CCSVI claim that neurologists who refuse patients’ demands for diagnostic testing and surgical referral for CCSVI are jeopardizing the safety of those patients, who are traveling to foreign countries such as Poland, Bulgaria, Mexico, Costa Rica, and India to get the care that they cannot receive in North America.
We are back from the 3rd chapter of “Brad’s Liberation Journey”! What a remarkable roller-coaster we have been on – but we think we have finally got it right this time after two previous procedures at different centers.
We arrived at the offices of Pacific Interventionalists in Newport Beach, CA on Wednesday and met with Dr. Michael Arata. This doctor is an Interventional Radiologist who has become quite a specialist in angioplasties and stenting in patients who have had previous treatments with little or no success, or who have had complications. He proved to be the ultimate professional that we were hoping for! He knew that Brad was going to be a challenge for him. Dr Arata was convinced that we were not going to leave there without Brad having proper blood flow. His protocol involves rupturing the valves in the veins rather than just performing angioplasty to widen the veins. He also uses considerably larger angio balloons – up to 20 mm, while other doctors are using 14 mm. Dr. Arata has found that this procedure works much better to keep any re-stenosis or vascular recoil at a minimum. We feel that this is exactly what has happened to Brad with his two past procedures with different doctors – he was under-treated with smaller angio balloons and they did not address the valves.
Brad’s procedure was another 3+ hour ordeal – even Dr. Arata admitted that Brad was the most challenging case he had seen. Brad had a small blockage in the right jugular which Dr. Arata angioplastied and ruptured the valve in that vein. Then he moved on to the azygos vein along the spine and although there were not any blockages, he angioplastied that vein as well, just to make sure. Then, came the tricky part – the left jugular vein. What he found there was quite a surprise! The two previous procedures had been treating what they thought was a split jugular vein – these two veins were actually collateral veins that were trying to do the work of the jugular. Brad’s left jugular was 100% blocked and virtually non-existent! Dr. Arata explained that it was like a plastic bag – when it is filled with fluid, it has shape to it, but when the fluid is drained and you crumple up the bag, it basically disappears. That was the condition of Brad’s left jugular vein! After over an hour of threading catheters through Brad’s head and neck, Dr. Arata finally found the opening of the left jugular and actually re-built it using three stents!
In the recovery room, Dr. Arata asked Brad if any of his MS symptoms felt different than before the procedure. Brad noticed that the “pins and needles” tingling on his left side was completely gone! The next day, we noticed a huge difference in his ability to swallow and his voice is now stronger. His gait is slightly improved and hopefully will get better with time. These were improvements that we saw with the first two procedures, but they were very short-lived.
Brad is taking blood-thinners now, and we are hoping that he will continue to see more improvements as time goes on. The benchmark is about two months – if he sees sustained improvements for the next two months without any complications from clots or re-stenosis, he has a very good chance of retaining those improvements. Brad will also be monitored every few months with ultrasounds to make sure that clotting is not taking place around the stents.
We are very optimistic this time! With improved blood flow, healing may finally be able to occur. In the past year since this procedure has been linked to MS symptom relief, the interventional radiologists who perform this procedure have already made strides in improved techniques. As with any pioneering effort, the technology, techniques and expertise continue to rapidly improve. It has been a journey, but things seem to be headed in the right direction now.
Thanks again for all of your positive thoughts and prayers!
Cheers, Lisa & Brad
- Lisa and Brad are from BC, Canada
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Preliminary studies have suggested that a phenomenon called Chronic Cerebrospinal Venous Insufficiency (CCSVI), a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy who published initial findings in June 2009 from a study of approximately 65 patients. There have been additional studies published since then, some of which showing results that conflict with the original findings. Read more about published studies to date.
National MS Society research leaders first met with Dr. Zamboni in February at New York University’s Society-funded MS Center of Excellence and again in April when the Society hosted, along with the American Academy of Neurology, a liveWeb forum on CCSVI.Based on the results of preliminary research which has been published in respected peer journals, Dr. Zamboni and others have recommended larger scale studies to determine if CCSVI may be treated through an endovascular surgical procedure, which involves inserting a tiny balloon or stent into blocked veins in order to improve the flow of blood out of the brain and spinal cord.
Dr. Zamboni suggests that if further evidence supports the link between MS and CCSVI, that its treatment may ultimately add to the arsenal of therapies available for MS. He emphasized the need for more research on his hypothesis, and noted that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure.
This Lead is Being Pursued
The Society shares in the public urgency to advance the understanding of CCSVI as quickly as possible. In order to pursue new and unanticipated leads in MS, the National MS Society established the Rapid Response Fund. An example of this fund in action is the global outreach and expedited review process that led to the more than $2.4 million which the US Society, in collaboration with the MS Society of Canada, is devoting to thefunding of seven initial grants that focus on the role of CCSVI in the MS disease process. Work has already begun on these grants.
Canadian Institutes of Health Research make recommendation to the Minister of Health that more research is needed before funding a CCSVI clinical trial. Read more in the press releaseor meeting summary
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Society of Interventional Radiology Supports Research for New MS Treatments. Read more in the press releaseor summary
Research into a possible connection between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis (MS) is sparking intense interest in the MS community. People with MS are calling for more access to a controversial treatment to correct CCSVI. Some have even traveled to clinics in India and Poland to undergo the unproven treatment, which can cost thousands of dollars.
More than 2,400 people tuned in to a live Web forum on April 14, sponsored by the National Multiple Sclerosis Society and the American Academy of Neurology (AAN), called “What Do We Know About CCSVI?” The forum gave people an opportunity to hear about the research directly from the doctors who developed the theory and conducted initial research into the MS-CCSVI link. These frequently asked questions provide an overview of the issues discussed in the Webinar.
Continue reading by clicking on either or all of the following links:
IS CCSVI a result of MS? Or, the Cause of the Disease?
Published in : May 2010
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What you need to Know
The Society's Commitment
What Experts have to say
Staying Informed about CCSVI
IS CCSVI a result of MS? Or, the Cause of the Disease?
John Gardiner and his sister Gail Pilek (in wheelchair) attend rally at the Legislative Building on Wednesday demanding increased access to developing research, testing and treatment of MS.
WINNIPEG -- A big announcement from the national MS Society could mean the tide is turning for supporters of a hot-button new theory on multiple sclerosis.
On Wednesday, the MS Society of Canada announced it will lobby the Canadian government to channel $10 million into researching a link between blocked veins in the head and neck -- a condition dubbed chronic cerebrospinal venous insuffiency, or CCSVI -- and MS.
"The MS community has spoken. They want access to diagnostics and treatment for CCSVI in Canada," said Linda Lumsden, chair of the national board of directors for the MS Society.
The announcement came on the same day that thousands of supporters rallied at government buildings across Canada to demand increased access to research, testing and treatment for CCSVI. In Winnipeg, members of the grassroots advocacy group CCSVI Manitoba returned from an afternoon rally at the provincial legislature to discover the MS Society's announcement.
"This is extremely exciting," said Nicole Boyd-Benes, who helped organize the rally. "This is what we've been pushing for since we got this organization together. Finally, it feels like we've been heard and that the MS Society is listening to us. I finally feel like I'm supported... now I hope it follows through!"
Lumsden will meet today with federal Health Minister Leona Aglukkaq to formally request $10 million in CCSVI research funding, to be directed to the Canadian Institutes of Health Research. Previously, the MS Society had opened a competition for funding proposals for CCSVI research. The successful proposals will be announced in June.
Critics have sometimes characterized the MS Society's response to CCSVI research as sluggish. Meanwhile, many Canadians have taken matters into their own hands, spending tens of thousands of dollars to travel to a clinics in Poland and India to get their veins opened by balloon angioplasty in the hope of relieving MS symptoms.
"The safety and health of people living with MS is our primary concern," Yves Savoie, president and CEO of the MS Society, said in a statement on Wednesday. "The Government of Canada can play a leadership role in addressing the needs of Canadians living with MS by funding research, including clinical trials in CCSVI and MS. Doing so will both advance research and provide safeguards to those seeking treatment."
A new medical theory that links multiple sclerosis to blocked veins has the interest of many people. At a meeting of international neurologists in Toronto, the theory was the hot topic.
By Ed Susman, Contributing Writer, MedPage Today Published: April 12, 2010 Reviewed byAri Green, MD; Assistant Professor, University of California, San Francisco and Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner
TORONTO -- Invasive procedures designed to correct venous blood flow in multiple sclerosis patients should not be performed until clinical trials can prove that the treatment is safe and effective, physicians here suggested.
John Corboy, MD, professor of neurology at the University of Colorado School of Medicine, Denver, reviewed studies performed by Paolo Zamboni, MD, professor of vascular surgery at the University of Ferrara in Italy. Zamboni has been the leading investigator into the possibility that chronic venous insufficiency could be a causative problem in multiple sclerosis.
"The logic for this is based on the fact that multiple sclerosis plaques are perivenular and that multiple sclerosis and chronic venous insufficiency share several features," Corboy said at the annual meeting of the American Academy of Neurology. Among those features are the expression of adhesion molecules, hyperactivation of matrix metalloproteinases, macrophage and T-cell infiltration, and iron deposition in the location of the lesion.
In the first paper in 2007 (Curr Neurovas Res 2007; 4(4): 252-58) Zamboni and colleagues found significantly increased bidirectional flow and/or reflux in deep middle cerebral veins and the transverse sinus in 89 multiple sclerosis patients compared with 60 controls, Corboy noted.
In an expanded study published in 2009 (J Neurol Neurosurg Psych 2009; 80(4): 392-99), the researchers looked at extracranial flow in the jugular and vertebral veins among 65 multiple sclerosis patients and 235 controls. They noted abnormalities in the blood flow in the multiple sclerosis patients and performed balloon angioplasties in those 65 patients, Corboy said.
That study found what the researchers termed a "dramatic" association between multiple sclerosis and venous abnormalities, with an odds ratio of 43 (95% CI 29 to 65, P=0.0001).
"After the procedure there was a small drop -- and I would emphasize small drop -- in the pressure gradient of about 2 to 3 cm of water," Corboy said. "They did report statistically significant reductions in relapse rate, an increase in the number of patients who were free from relapse after 18 months, a reduction in magnetic resonance imaging gadolinium enhancing lesions, and improvements in quality of life. In this uncontrolled fashion it was perceived that these were improvements for the patients." In an uncontrolled study these are likely to reflect regression to the mean -- a phenomenon frequently observed in the placebo arms of MS clinical trials.
He also noted that a study from the University at Buffalo, according to the institution's press release, described similar numbers when comparing 280 multiple sclerosis patients and 161 controls.
Hundreds of Canadians who have multiple sclerosis are demanding access to a new procedure that MS specialists warn is at best experimental and at worst dangerous.
More than 20 Canadians have gone to a private clinic in Poland in the past two months alone. It is one of a handful of locations worldwide offering an operation to remove blockages in neck veins that drain blood from the brain back to the heart.
Dr. Paolo Zamboni of Ferrara, Italy, describes the condition as chronic cerebrospinal venous insufficiency or CCSVI. His research suggests the narrowed or blocked veins lead blood to move backwards or reflux back into the brain and spine, causing damage.
The hypothesis is unproven and studies are underway to show how common CCSVI is in MS patients, those with other neurological conditions and healthy people, as well as to explore its potential role as a major risk factor in MS.
While studies in Canada get underway, some patients are travelling overseas, paying for tests and surgery out of their own pocket. Others are lobbying for the Canadian health-care system to cover the diagnostic tests to look for blocked veins in people with MS.
"Even the Doppler testing is not covered by OHIP, for example," said Andrew Katz of Ottawa, who has MS and uses a wheelchair. Katz was willing to pay $500 out of pocket for Doppler ultrasound testing in Montreal.
Katz and his friends are also putting together posters and signs to carry in a march planned for May 5 on Parliament Hill.
"The point of the rally is to demonstrate and voice our opinions about the way the government is handling the CCSVI situation," said Katz. "It's not moving fast enough."
Tears of hope
Katz's fellow campaigner Rebecca Cooney has secondary progressive MS, which means she never has periods where she can function normally.
Over almost 18 years, Cooney 's condition has worsened and she is losing the use of her legs. Cooney walks with a cane and worries that within a year she will be in a wheelchair. She has already moved to a house with fewer stairs.
"I was with my family and my daughters," Cooney recalled of first hearing news about the surgery. "I started to cry because I felt it was finally something tangible that can be done, that can be fixed."
Even if the angioplasty or stent surgery doesn't reverse anything, Cooney is optimistic the decline could be stopped. So far, she has spent $4,000 for tests in the U.S. that showed two severely narrowed internal jugular veins.
Cooney's objective is to help promote research and testing of CCSVI. She laments the lack of standard protocols and training to diagnose the condition.
National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum on the Topic: Chronic cerebrospinal venous insufficiency (CCSVI)
On April 14, 12 p.m. ET the National Multiple Sclerosis Society and the American Academy of Neurology (AAN) will hold a live 90-minute Web forum for journalists and the general public on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and what it could mean to people living with multiple sclerosis. The event will cover what is currently known about CCSVI and what yet needs to be determined in order to establish what its relationship to the MS disease process might be and whether surgical intervention can improve the disease course. The live Web forum will feature the following panel:
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Dr. Paolo Zamboni, Director, Vascular DiseasesCenter, University of Ferrara, Italy
Dr. Robert Zivadinov, Associate Professor of Neurology at the University at Buffalo, StateUniversity of New York
Dr. Andrew Common, Radiologist in Chief at St.MichaelsHospital, University of Toronto, Ontario, CA
Dr. Aaron Miller, Professor of Neurology and Director of the MS Center at Mount Sinai, New York, member of the AAN Board of Directors, Chief Medical Officer of the National MS Society
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Register now online(12 p.m. ET April 14) and ensure your system will support the live Web forum player. Questions for the panelists can be submitted online in advance of the live Web forumthrough Facebook or Twitter,or in real time through the live Web forum player. The recorded webcast will be available online after the event for those who are unable to attend.
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Read more on Chronic Cerebrospinal Venous Insufficiency, when using the MS Views and News CCSVI link
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Drs. Kim and Kabutey are leading new studies on Chronic Cerebrospinal Venous Insufficiency (CCSVI), a new treatment for multiple sclerosis (MS). Initial research has shown an improvement on MS symptoms. To read more information on CCSVI, click on the links below for published studies:
A collaboration with the leading research groups on the link between CCSVI and MS
CCSVI and MS Studies
We are very pleased to offer Canadian and International patients the opportunity to undergo MRV/MRI and also doppler studies for the diagnosis of CCSVI. Our 3TGE MRI machine is fully equipped with state of the art technology inaccessible in any public hospital in Canada. We are collaborating with the leading research groups on the link between CCSVI and MS. We are using the MRI protocol put forward by Doctor E. Mark Haacke.
What To Expect
When you come in for your diagnostic you may either have the MRI and the Doppler Ultrasound on the same day, this is preferable or you may schedule the scans on different days.
It is now 3 days after "Liberation Day". Sunday afternoon 12:30 pm. February 28th, 2010.
Three days ago, Dr. Mohsin Saeed at Scripps Clinic opened my left jugular vein with angioplasty and my right jugular vein with angioplasty followed by a stent. The procedure is called by its inventor, Dr. Paolo Zamboni, The Liberation Procedure. It is a revolutionary treatment for an old, disabling disease -- Multiple Sclerosis. Until about 3 months ago, the only theory I knew about MS was that it was an autoimmune disease which attacked and destroyed myelin, the external coating around nerves. For unknown reasons, nerve conduction was slowed while plaques formed in the brain. It was always unclear why or when attacks would happen but they did and were difficult to control. Modern medicine responded with anti-inflammatory drugs and immune suppressants following the line of reasoning that if the disease was caused by an immune response, then stopping the immune response would stop the disease.
I was always leery of this approach because as a doc, I felt I needed my immune system to stay well in the face of my patients who carried diseases. In fact, I was quite proud of my ability to stay well in the face of wintertime time viruses, etc. So even though my life and body had deteriorated significantly over my ten or so years with MS, I kept my head buried in the sand in terms of using the pharmaceutical technologies available to me and my peers with this affliction.
Multiple Sclerosis (MS) is a chronic neurological disorder that affects the central nervous system, (CNS) comprised of the brain and spinal cord. In the CNS, nerve fibers or axons are surrounded by a layer of insulation called myelin. Myelin allows nerve signals to travel properly. CLICK, to Continue Reading
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MS Views & News
"Providing Youwith 'MS Views and News', is what we do"
Using State-of-the-Art technology to provide information for those affected by Multiple Sclerosis.
