CCSVI and MS FAQ - National Multiple Sclerosis Society

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CCSVI and MS FAQ

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What is the National MS Society’s view of CCSVI?

The Society is committed to pursuing all promising avenues of research that can lead to improved treatments and ultimately, a cure for MS. It is important for researchers to think outside the box and we believe Dr. Zamboni has done this. His hypothesis on CCSVI and its corrective treatment is a path that must be more fully explored and one that we are supporting with research funding.
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Do the reports of a possible association between insufficient vein drainage and MS mean that MS is caused by venous insufficiency?

Based on results published about these findings to date, there is not yet enough evidence to conclude that obstruction of veins causes MS, or to determine when this obstruction may occur in the course of disease.
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I have MS. Should I be tested for signs of CCSVI?

This is a personal decision to be discussed with your health care provider. At this point, no connection has been confirmed between CCSVI and multiple sclerosis, in fact, CCSVI appears to occur in many people who don’t have MS. In talking with your doctor, here are some of the questions you may want to ask: How is the testing done; Are there any risks associated with the testing procedure itself; how much will the testing cost; what would I learn by having this test done; do technicians need special skills to evaluate the test results; how accurate and reliable are the test results; if the test indicates that I have signs of CCSVI, does that mean I should have vascular surgery?
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Should I get surgical treatment for CCSVI?

Like all important medical decisions, the question of whether individuals should undergo any procedure is a personal one that should be discussed with their health care providers. There is urgency for more effective MS treatments, particularly for more progressive forms of MS. Each of us varies in our ability to tolerate risks; an intervention that may seem far too risky to one who is doing relatively well with his or her current treatment strategy may not feel very risky at all to someone whose MS is obviously progressing in spite of everyone’s best efforts. Each individual must make this decision in conjunction with a trusted health care provider.

Endovascular surgery, like any surgical procedure, carries some risks. This does not mean that it would not be considered as a potential treatment in the future if further research provides evidence of its possible benefit. We need to determine if treating CCSVI improves symptoms or changes the course of the disease in any way. That is why the Society is leading research efforts to determine how CCSVI may be involved in the MS disease process. To get the quickest answers and most reliable results about benefits and risks of any surgical procedure that might attempt to address blood flow in or out of the brain, as well as to further the overall understanding of CCSVI and how it may affect people diagnosed with MS, it is important that such surgery be performed as part of controlled trials, especially in light of adverse events reported to date.

Prospective candidates should know that there have been reports of CCSVI surgical procedures resulting in adverse events, including deaths. According to the Annals of Neurology and the Wall Street Journal, a person died of a hemorrhage in the brain while taking a blood thinner (anti-coagulant), which is commonly prescribed when stents are inserted into blood vessels. In another individual, a stent dislodged and moved to the heart, requiring emergency open heart surgery to remove the device. MS endovascular surgery was halted at Stanford University after these two adverse effects occurred. In another instance, a Canadian man is reported to have died from complications during follow-up surgery after having a stent inserted in Costa Rica. Other possible risks include: infection at the puncture site; damage to the blood vessel, which could lead to the formation of clots; and internal or external bleeding if anti-coagulants are used.

Virtually all FDA approved disease-modifying MS therapies have their own risk/benefit profiles. The difference is that these therapies have been shown, through large-scale, controlled clinical trials, to significantly reduce MS disease activity in certain individuals. Dr. Zamboni, who originated the CCSVI hypothesis, has emphasized the need for carefully controlled research on CCSVI, and has noted that people with MS should remain on their disease-modifying therapies, as has his wife after her endovascular surgical procedure.

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How can I get involved in research on CCSVI in MS?

A larger-scale clinical study recruited participants nationwide with the aim of evaluating the prevalence of venous obstruction in people with MS. This study does not involve treatment of venous obstructions. If there is a broad call for recruitment for participants of the seven newly funded CCSVI research studies, the information will be posted when it becomes available.

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If CCSVI turns out to be important in MS, can it be treated?

Surgical procedures for CCSVI in MS are still experimental. It is prudent that such procedures be undertaken in conjunction with formal clinical trials in order to assure that rigorous safety safeguards and long-term monitoring standards are followed.
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Does CCSVI make the standard treatments of MS meaningless?

No. There is ample evidence that the FDA-approved therapies for MS provide benefit to a significant percentage of people with the most common form of MS.

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How is the Society supporting the work of Dr. Zamboni and others regarding CCSVI?

Dr. Zamboni has called for more research to move his preliminary CCSVI research forward and the Society is leading the way in advancing that effort. As in all early research, Dr. Zamboni’s work has raised as many questions as it has potentially answered. The Society’s role is to ensure that whether someone is diagnosed with MS today or ten years from today there will be safe and effective treatment options available. On June 11, 2010, the US National MS Society and the MS Society of Canada announced funding of 7 projects investigating CCSVI in MS, valued at a total of over $2.4 million. In addition, the U.S. and Canadian MS Societies are in discussion with the Multiple Sclerosis International Federation to establish an international CCSVI Research Coordinating Committee to consider CCSVI research that is underway around the world.

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What are some of the questions raised in Dr. Zamboni and others’ research that need to be explored?

Why has venous obstruction recurred in such a large percentage of patients who underwent the endovascular surgery and what does that mean to the disease process for these individuals? Is there abnormal venous obstruction in all people with MS? How do we determine who, if anyone, might best benefit from endovascular surgery? Are such benefits long-lasting or temporary? Can Dr. Zamboni’s results be replicated in larger controlled and blinded studies of MS patients? If so, when does CCSVI occur in the course of the disease – is it a cause or effect of the disease process? How can we address the known risks associated with endovascular surgery? Acknowledging the questions that Dr. Zamboni himself has raised only helps in designing the necessary research to secure the needed answers.
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Is it true, as some people have suggested, that the Society’s dependence on money from the pharmaceutical industry is impeding its support of Dr. Zamboni’s research?

No. Last year, nearly 95% of our funding came from individual contributions. The vast majority of our gifts are less than $100. However, we partner with all those who want to do something about MS NOW, including pharmaceutical company support, which in 2011 was 4% of the Society’s total annual revenue.
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How can I contribute to the CCSVI research efforts?

To support MS research, including CCSVI research, please have individuals email their full name and contact information to giftplanning@nmss.org. An event participant cannot make that request on behalf of their donors.

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