Saturday December 16th 2017

MS treatment care guidelines questioned

Support at home for those who have had controversial treatment for multiple sclerosis abroad is necessary, although local patients are skeptical that a new initiative will do the trick.

A panel of doctors will develop guidelines for Ontario doctors to follow. It’s a first for Canada.

But there is some question about how this will roll out for patients.

“It’s the same group of people … who have no background in this and they’re going to decide on after-care?” said Patrick Farrell. “I look at it with the greatest amount of suspicion.”

Farrell’s wife, Barb, is bedbound. A year ago, she was in hospital, considering moving to a hospice. But some local benefactors flew her to the United States and paid for treatment not available in Canada.

The treatment is angioplasty on veins for a condition called CCSVI (chronic cerebro-spinal venous insufficiency). It’s considered unproven and is not available in Canada. But many Canadians are seeking the treatment abroad. And they require follow-up when they’re at home.

Barb reports some progress, but remains bedbound. Her husband said treatment for her has fallen between the cracks. She’s back at home and getting home care, but she has not received physiotherapy, or any rehabilitation treatment.

“She needs some sort of therapy,” he said.

Ontario’s health minister, Deb Matthews, expects a report from an expert panel to be completed prior to next fall’s election on how patients such as Barb should be followed up here at home. The idea is to put together a plan for the many Ontario residents who have had the treatment abroad.

MS has long been considered a neurological disease with no known cause or cure, although there is drug therapy available to help manage it.

Italian doctor, Dr. Paul Zamboni, announced nearly two years ago his hypothesis that many MS patients have blocked veins, a condition he called CCSVI, that, when unblocked, eases their symptoms.

The jury is still out — but, for the first time, it brought hope to MS patients, who went out in search of it — many reporting positive results.

Among them is Diana Gordon. The Barrie woman has seen many of her fine motor skills deteriorate over the years as a result of MS and was unable to work. After lobbying the Ontario government and being outspoken on behalf of MS patients, Gordon decided that, she, too, would seek the treatment. She received the treatment in the United States last spring.

Gordon has remained in the fore, continuing to lobby and maintaining an active online presence, networking with MS patients the world over. She has since started working part-time and is hoping to return to technical writing.

“How can they give us the proper follow-up care and treatment we need?” said Gordon, citing that panel members are largely neurologists who have not supported the treatment here.

The panel is made up of one vascular surgeon, four neurologists and two general internists.

She asks why vascular surgeons, such as Barrie’s Dr. Sandy McDonald, don’t appear on the panel.

McDonald has supported the treatment, having gone to Italy several times with staff to train under Zamboni. Six of his patients underwent the treatment at Barrie’s Royal Victoria Hospital early last year and all, he said, reported different levels of improvement.

He has been excluded from other expert panels in Canada but is sought after in other countries.

Gordon says McDonald’s support here in Barrie through his Barrie Vascular Imaging centre, as well as support from her physician, has provided her with the follow-up care while following a daily exercise regime to continue getting stronger.

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