MS patient advocates for better follow-up care

MS patient Michelle Walsh wants better follow-up care, in Saskatchewan, for a people trying a new therapy. (CBC)

Faced with the prospect of being bedridden or in a wheelchair, Michelle Walsh went abroad for a controversial treatment she hoped would alleviate her multiple sclerosis symptoms.

Walsh had the so-called liberation therapy. But when she returned home to Saskatchewan, she says she was "orphaned" in the medical system.

"Right now patients are either going to the States from Saskatchewan for proper follow-up care or Ontario — and this is ridiculous," Walsh said.

"That's why I finally said this is enough. If this is going to happen, then I'm going to make it happen, because I refuse to go abroad once again for a simple test that takes less than 20 minutes to make sure everything's still following smoothly."

'They need to be followed by a licensed practitioner.'—Dr. Ruben Rajakumar

Walsh was planning to attend an announcement Saturday by Dr. Ruben Rajakumar, a Saskatoon-based cardiologist and retired University of Saskatchewan professor, introducing a new clinic for screening and follow-up of patients with cerebrospinal venous insufficiency, or CCSVI.

CCSVI is a hypothesis put forward by Italian vascular surgeon Dr. Paolo Zamboni. His theory is that narrowed neck veins create a backup of blood that can lead to lesions in the brain and inflammation.

Liberation therapy, which involves opening up blocked neck veins, is not offered in Canada.

The idea that the condition might be linked to multiple sclerosis, a progressive neurological disease, has divided the medical community. Some patients have travelled around the world to seek out liberation treatment, even though it hasn't been proven to work.

Specialized training

Follow-up involves a special ultrasound, called a Doppler, which is needed to see the neck veins more clearly. Only one clinic in Canada currently offers CCSVI screening and follow-up for patients who have had liberation therapy.

"You need to be trained properly. It's a very specific technique," said Angela Legace, chief vascular stenographer at Barrie Vascular Imaging in Barrie, Ont. She trained in Italy with Zamboni and was invited back to help teach others.

Legace has probably scanned as many as 5,000 people before treatment and afterwards, people who have travelled from across Canada for diagnosis or follow-up care. They have all said they wished they could get care in their home provinces, she said.

Legace has been asked to teach staff at the Saskatoon clinic.

Rajakumar said the clinic in Saskatoon will offer a standardized ultrasound assessment based on Canadian Institutes of Health Research clinical trial protocols. He called it a major step for desperate patients.

"These patients take their own decision and get this procedure done even though it is not an approved procedure in North America. They get it done and then they get symptoms, and sometimes complications, and they need to be followed by a licensed practitioner," he said.

"Nobody's providing that follow-up. They go to their family doctors and family doctors are not equipped to assess this. You need somebody with vascular knowledge to assess them."

Walsh, 38, was diagnosed with MS when she was 18. Her condition had been going downhill and she'd been fitted for a wheelchair.

She underwent liberation therapy in Bulgaria in July 2010 and said she noticed immediate relief. A few months later, though, some symptoms returned so she went to California the following January for a second procedure.

Patients like Walsh will have to pay out of pocket if they want follow-up care in Saskatchewan or Ontario.

The procedure is not covered by the province, unless they are part of a trial group of patient that will be selected to go to New York for treatment.

U.S. trials

Saskatchewan announced last month that it will send multiple sclerosis patients to the U.S. to take part in a two-year, double-blind clinical trial of liberation therapy. To date, almost 600 people have submitted applications online or by phone.

Walsh doesn't qualify, because she's already had the treatment.

However, she was hoping follow-up care would extend to others like her. It doesn't.

"Those patients are the only ones that will get follow-up in this province and ... to me that's not enough," said Walsh.

"Those of us that have already gone abroad and already been tested and treated ... we should be allowed to have proper follow-up in this province and not just a select few, the 86 that will be going to Albany. That's not fair to me. That's not fair to the rest of us who've been the pioneers in bringing that to happen for these patients."

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MS patient advocates for better follow-up care