Clinic to test for controversial condition linked to MS
Published Monday, February 8, 2010 9:39PM EST
One of the first clinics in North America devoted to testing for a vascular condition that some experts believe is linked to multiple sclerosis is set to open later this month in Buffalo, just as scientists are to release more findings on the controversial theory.
The Buffalo Neuroimaging Analysis Center (BNAC) has announced that it will begin to offer testing for the newly discovered condition, called chronic cerebro-spinal venous insufficiency (CCSVI), in mid-February due to overwhelming demand from MS patients.
Italian scientist Dr. Paolo Zamboni believes that CCSVI causes veins in the neck and upper chest to twist, narrow or become blocked; in some cases, these veins never form at all. The result is poor blood drainage from the brain.
Zamboni has found that more than 90 per cent of patients with MS have these malformed veins, and improper blood flow from the brain.
Due to the overwhelming response to Zamboni's research and to its own study on the condition, the BNAC said it will begin offering diagnostic venous testing to patients beginning in mid-February 2010.
Testing will include:
- An MRI of the brain to measure the level of iron deposits
- An MRI of the neck to study the jugular, vertebral and other collateral veins
- A Doppler exam of the head and neck to determine blood flow
- A follow-up visit with a doctor to discuss the findings
News of the clinic opening comes days before scientists from the BNAC release data from their study that includes 500 MS patients who were tested for CCSVI.
"What I can tell you today is that the preliminary results are exciting scientifically and will generate a great deal of discussion among our colleagues, the worldwide press, and individuals like you who are following very closely any developments about CCSVI," Dr. Robert Zivadinov said in the BNAC newsletter.
Zivadinov said the second phase of the study will include another 500 patients and will "pose new and provocative questions about the CCSVI theory."
Scientist welcomes scepticism
Zamboni told CTV's Canada AM Monday that he welcomes skepticism about his findings.
"This is normal when there is a new finding in science," Zamboni said. "I think that this is positive because it stimulates debate."
Zamboni was in Hamilton, Ont., Sunday for a scientific workshop looking into the relationship between MS and CCSVI. Scientists from the United States, Europe and the Middle East reported that they had found CCSVI in more than 95 per cent of MS patients.
"The meeting yesterday was quite successful because we met a lot of colleagues from all over the world that are actually working on our theory," said Zamboni, who is a professor of medicine at the University of Ferrara in Italy.
According to Zamboni, a surgical procedure to restore proper blood flow, which he dubbed the "Liberation treatment," can reduce MS symptoms.
In a study of 65 patients who underwent the procedure, released in the Journal of Vascular Surgery, Zamboni says that 50 per cent of patients with the most common form of MS were relapse-free for at least 18 months. In a control group of MS patients who did not undergo the procedure, only 27 per cent went 18 months without an MS attack. Additionally, only 12 per cent of patients in the surgery group had brain lesions -- a sign of active disease -- compared to 50 per cent in the control group.
Research will take time
Dr. Mark Haacke, director of the imaging division in the school of biomedical engineering at McMaster University, organized the weekend conference and said "no one is claiming it's a cure."
"It's a cardiovascular problem first, it may be related to MS, it may cause MS -- but we don't know all those answers yet," he told CTV.ca. "That's going to take time to do very careful research to evaluate those MS patients that do get the operation.
"Do they get better? Do they stay the same? Do their lesions go away? Or do they at least not get worse. (It) may take years and years to really determine the effectiveness of this surgery."
MS societies around the world have responded with funding for research into CCSVI. The Italian Multiple Sclerosis Foundation has allocated up to $4.5 million for research and the MS Society of Canada has called for applications for grants for those studying Zamboni's findings.
Charity Intelligence Canada, a group that provides donors with research and information, called for additional research and funding into Zamboni's findings on Monday. The group said Canadians donated $62 million to MS-related charities in 2009, and said "supporting CCSVI research presents an opportunity for donors to have high impact in their giving."
"Donors wanting to support CCSVI research in Canada should donate directly to St. Joseph's Healthcare and McMaster University in Hamilton, Ontario and University of British Columbia, designating their donations to CCSVI research," the group said in a statement.
However, experts have warned that the findings are far from being validated and those with MS should continue with their current treatment.
"Although the early data are of great interest, it is important to acknowledge that the concept of CCSVI as a cause of MS and the use of stents or balloons to widen veins as treatments, are ideas that are far from being accepted by most researchers in the field," the MS Society of Canada says on its website.
Experts have expressed concern that the initial excitement over the new procedure was leading some to drop their current treatment.
"To people with MS we say: don't abandon the course of treatment that you have started," Yves Savoie, the president and CEO of the MS Society of Canada told CTV News in November.
"Those treatments have been proven in large trials to be effective in reducing the burden of disability that comes with MS."
Haacke says that since most MS patients have MR scans performed, clinicians should consider performing additional scans for CCSVI.
"It's important for clinicians to begin to realize that they should be taking some time clinically – not on the research side – to scan their patients and find out if this is a problem," he said.
Canada has one of the highest rates of MS in the world, affecting between 44,000 to 78,000 in the country.