UBC designing after care for MS patients treated abroad

Some people afraid to confess they've had controversial treatment

UBC photo courtesy of Wikimedia Commons

Researchers at the University of B.C.'s multiple sclerosis clinic are trying to establish standards of care for patients who travel abroad for a controversial, unproven treatment that widens narrowed neck veins -- and then come home needing followup care.

Victoria will give the clinic $700,000 for the next three years for a program that will include a voluntary registry of patients in B.C. who've undergone the procedure, and a system to allow health-care providers across B.C. 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 neck veins that carry blood to and from the brain, a condition called chronic cerebrospinal venous insufficiency, or CCSVI. 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 U.S. study released just last week cast doubt on the theory.

The procedure is currently unavailable in Canada, but some MS patients have travelled outside the country to receive the operation.

Because of that, Dr. Tony Traboulsee of the UBC MS clinic says health-care providers need to how to care for those patients once they're back in Canada.

"We can't just stick our head in the sand, because it is happening,'' said Traboulsee, the clinic's medical director and a professor at the university.

"Patients who go out of the country for care, even if we advise them not to, they can still expect to be cared for when they get back.''

Traboulsee said because there is little evidence on the procedure itself, there is also little known about how best to care for patients after they've had it. Without evidence, Traboulsee said the guidelines his team come up with will be based on "common sense'' and what they know about similar procedures.

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

Last year, media reports said that an Ontario man died in a Costa Rica clinic. He developed blood clots months after the initial procedure and had returned for follow-up care.

Traboulsee noted some patients have been reluctant to tell their Canadian doctors they've even had the procedure.

"There was a phase where, because the MS doctors have not been recommending this treatment, patients have felt uncomfortable disclosing that they've had this treatment done,'' he said.

"But we're encouraging patients to let us know they've had this done so that we can best monitor them. People make complex decisions, and we just want to help them through the care afterwards.''

The B.C. registry, similar to systems already in place in Alberta and Newfoundland, will collect voluntary information from patients across the province who've had their neck veins widened.

Earlier this year, Ontario announced an expert panel to develop guidelines for follow-up care

There are other research projects across the country are looking into the theory. Another ongoing study at UBC is testing MS patients, non-affected family members and others for signs of CCSVI.

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.

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