Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis - dummies

Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Multiple Sclerosis

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

In 2009, Dr. Paolo Zamboni — a vascular surgeon in Ferrara, Italy — introduced a phenomenon called chronic cerebrospinal venous insufficiency (CCSVI) to the MS world. Following a study of 65 people with MS, Dr. Zamboni proposed that an abnormality in blood drainage from the brain and spinal cord may contribute to nervous system damage in MS.

Further, the study looked at whether treating this condition by opening blocked veins might have a major impact on people’s symptoms and on their ability to function. In the study, Zamboni’s team evaluated the safety and preliminary outcomes of endovascular surgery to open blocked veins in 35 individuals with relapsing-remitting MS, 20 with secondary-progressive MS, and 10 with primary-progressive MS.

This type of surgery 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. The team reported positive benefits from the procedure, but also found that after surgery with balloon dilation, 47 percent of internal jugular veins went back to having restricted blood flow.

CCSVI has caused a stir in the MS community, and efforts are under way to understand what the relationship might — or might not be — between CCSVI and MS. Do people with MS have blocked veins? Is this condition unique to MS?

If it occurs in MS, is it a cause of the disease or a result of the disease? Does opening blocked veins improve symptoms or alter the disease course in MS? Do the benefits of opening blocked veins outweigh the risks of the surgical procedure?

As with other experimental treatments in MS and other diseases, the answers to these questions can only come with time and careful study.

For many people with MS, this waiting game feels intolerably long. Some CCSVI advocates have embraced CCSVI and its treatment as the solution to all the challenges they have been facing, and they want the treatment today, before their MS progresses any further.

They have become very vocal in the MS community, expressing their frustration with the neurologists and other physicians, researchers, and MS organizations that are urging caution regarding surgery to treat a condition whose relation to MS is still undefined.

Several important research initiatives are under way around the world to increase understanding of the possible role of CCSVI in MS:

  • The National MS Society and the MS Society of Canada jointly funded seven international research teams, made up of experts from the fields of radiology, vascular surgery, and neurology, to answer thorny questions:

    • What is the most accurate and reliable way to measure CCSVI?

    • How frequently does CCSVI occur in MS, and how often does it occur in people who don’t have MS?

    • Is CCSVI a cause of MS or related to MS in some other manner?

  • Controlled clinical trials are planned in the United States and Europe.

  • U.S. and Canadian MS Societies are working with the Multiple Sclerosis International Federation and other MS Societies around the world to coordinate information and to share research data from ongoing work in an effort to speed progress.

The studies that have been published up to this point have not confirmed a connection between CCSVI and MS. However, you can stay up to date with the latest CCSVI information and research findings via their website.

MS specialists — and Dr. Zamboni — recommend that people with MS continue their regular MS treatments. Given that the relationship between CCSVI and MS has not been clearly demonstrated, any decision to be tested for CCSVI or to undergo a surgical procedure to correct blocked veins should be thoroughly discussed with your physician.