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Many Canadians with multiple sclerosis have had their neck veins opened outside the country in an experimental procedure not approved in Canada.(CBC)

Researchers at the University of British Columbia's multiple sclerosis clinic are working to establish standards of care for patients who have travelled abroad to receive a controversial — and as-yet unproven — treatment that widens narrowed neck veins.

The provincial government is providing the clinic with $700,000 for the next three years for a program that will also include a voluntary registry of patients who've undergone the procedure and a system to allow health-care providers across the province to reach MS experts in Vancouver when dealing with such patients.

The treatment rests on the theory that MS is caused by a narrowing of veins in the neck that carry blood to and from the brain, a condition called chronic cerebrospinal venous insufficiency, or CCSVI. 

'Our goal is to establish provincewide standards of care and better understand the risks and benefits for MS patients.'—Dr. Tony Traboulsee of the UBC MS clinic

The procedure, dubbed "liberation therapy" by proponents, involves angioplasty or a stent to widen the veins.

Medical studies have been mixed about whether there is any link between narrowed veins and MS, and a study released just last week cast doubt on the theory.

The procedure hasn't been proven and is currently unavailable in Canada, but some MS patients have travelled outside the country to receive the operation before the research comes in.

Dr. Tony Traboulsee of the UBC MS clinic said some patients are undergoing the surgery and returning to Canada, and they need to be cared for.

Concern about stents

"We have increasing numbers of patients at UBC Hospital and other clinics across the province who have received interventional venous treatment," Traboulsee, the clinic's medical director and a professor at the university, said in a news release.

"Often they are uncertain as to whether to tell their neurologist they have had the procedure, and in turn neurologists are uncertain as to appropriate after care. Our goal is to establish provincewide standards of care and better understand the risks and benefits for MS patients."

A news release from Vancouver Coastal Health notes that, while the procedure has been marketed as being risk free, it sometimes involves the use of stents to keep the veins widened permanently, which can lead to complications if the stents dislodge or migrate to the heart.

They can also cause blockages and hemorrhaging and require blood-thinning medication.

Earlier this year, Ontario announced an expert panel to develop guidelines for follow-up care, and research projects elsewhere in the country are looking into the theory, some by tracking patients who've had the procedure.

In New Brunswick, the governing Conservatives campaigned last year on a pledge to fund the procedure. Last week, the province's health minister said the government still plans on following through on that promise, with details expected soon.

Saskatchewan and Manitoba are partnering to spent $10 million on clinical trials.

The CCSVI theory was first floated by Italian researcher Dr. Paolo Zamboni, who speculated that reduced blood flow leaves iron deposits in the brain, leading to the neural lesions typical of MS.