FAQs on the CCVSI procedure for MS patients

Find information about the best way to test for CCSVI, and learn more about what North American MS researchers are working on.

What's the best way to test for CCSVI?

The Italian group uses Doppler ultrasound to scan patients for signs of reflux in the two jugular veins. The technique developed by Dr. Zamboni and his colleagues, is a modified test that appears to require some training -- after which there still appears to be a learning curve. That is because ultrasound technicians are not accustomed to looking for reflux, which is backwards blood flow in neck veins.

Patients also need to be tested lying flat and in a degree sitting position. There is a specific protocol for this test, where patients must meet certain criteria for blood flow. Studies suggest that healthy people may have small amounts of backflow but those with CCSVI have sustained problems in several sites. Technicians from UBC, Saskatchewan and a clinic in Barrie have been trained at a class in Ferrara, Italy. More classes are planned, and there are already some 100 people on the waiting list.

The most accurate test for CCSVI is the venogram. This is a procedure done in an angiography suite, in which a catheter is inserted into a vein in the groin. The wire is threaded up into the azygos vein in the central chest and the two internal jugular veins. Dye is injected and doctors watch the blood flow. MRVs, which are MRIs of the neck, have been suggested as a diagnostic tool for CCSVI, but reports and some studies are showing they may not give an accurate picture, as some of the anomalies cannot be seen when the patient is lying down. Researchers, however, say that MRIs and MRVs are still needed for studies that will track patients before and after treatment to see what happens, if the treatment makes a differences, and changes to the brain venous system.

For more information, please see this website.

How many centres in North America are planning studies on CCSVI?

We are aware of four in the U.S: Georgetown University, Boston Medical Center, The Institute for Vascular Health and Disease in Albany, N.Y., and the Buffalo Neuroimaging Analysis Center. Some are testing the association between CCSVI and MS. Others are also proceeding to treatment studies.

Canadian studies so far will only study the diagnosis of CCSVI and the link to MS. No treatment studies are planned at the moment. The MS Society says it will not fund any treatment studies until the theory has been proven and the link to MS confirmed.

In Canada, three centres have publicly announced plans for studies: the University of British Columbia, the University of Saskatchewan (study is in conjunction with UBC), and St. Joseph's Hospital / McMaster University in Hamilton.

There are other groups that have applied for funding from the MS Society of Canada but the recipients of those grants won't be announced until June.

What about the 6th patient treated in the group?

That patient declined interviews for personal reasons, but is also reportedly having improvements in his MS-related symptoms post-treatment.

What is the diagnosis of the patients in the group interviewed?

Lianne and Matt had relapsing remitting. Lianne was on Copaxone, Matt was not taking any disease modifying drugs at the time of his diagnosis or treatment. He is still not on any medications. Recent tests of his neck showed the veins have remained open. Steve is secondary progressive and was not, and is not now taking medications specific to MS. Sandra Black is secondary progressive as is Michael Gandhi. There are no treatments for this phase of the illness. Michael was undergoing chemotherapy to control his symptoms and his family believes they may have damaged his voice, and caused him to lose his hair. Neither is on medications for MS.

What does the MS Society say?

See MS Society of Canada's Q&A page.

What is the position of doctors who specialize in treating multiple sclerosis?

A review article in the Annals of Neurology discusses the recent investigations that led to the groundswell behind CCSVI, challenges the role of CCSVI in MS and discourages patients with MS from any invasive procedures until there is more conclusive evidence to justify their benefit for treating MS. Eleven world experts in MS, radiology and medicine have now reviewed what is currently known about CCSVI, the validity of the experiments undertaken to link CCSVI and the development of MS, and the steps required to prove CCSVI and its treatment benefits.

After careful scrutiny of Zamboni's studies, they concluded several technical and study design issues were found to compromise the validity of the results including: the small number of patients involved in the studies, the lack of suitable controls, the use of inconsistent MRI protocols, and unblinded evaluations by the doctors of study subjects. All patients also remained on disease-modifying therapies making any interpretation of ‘efficacy' questionable. Consequently, these experts advise a cautious interpretation of Zamboni's results.

What about metal stents used by some clinics to prop open veins?

The jugular veins re-narrow in 47 per cent of patients according to Dr. Zamboni's pilot study. Only 4 per cent of azygos veins re-block. Dr. Zamboni says that stents have not yet been validated as a safe way of keeping veins open. He discourages their use until more studies are done.