Monday March 19th 2018

Liberation procedure changes woman’s life

Whitney Murray beamed as she made her way along Borland Street toward Lawrence Avenue on Sunday morning.

Surrounded by supporters wearing matching t-shirts, the 22-year-old Orillia woman ¬– once housebound due to multiple sclerosis – was walking at a comfortable clip.

For that, Murray says she can thank a controversial medical procedure, performed at a clinic in Albany, New York in late January.

“I have more energy, I’m not as tired,” said Murray, who took part in the annual MS Walk last weekend. “(In the past) I would have found a way to participate, but I wouldn’t have been able to do the walk.”

The local woman was diagnosed with relapsing remitting MS in June of June 2010 after experiencing a flood of symptoms, including seizures, loss of balance and paralysis on her right side.

A Barrie-based specialist confirmed she had the blocked neck veins that some believe are linked to MS – a claim now being studied by the federal government.
The so-called ‘liberation’ procedure – in which narrowed veins are opened through angioplasty – remains unavailable in Canada.

As a result, Murray and others have paid thousands for the surgery out-of-pocket at clinics in the U.S. and elsewhere.

A pair of community-driven charity events “raised enough for the procedure,” Murray said of the roughly $7,000 cost.

Her family bore other expenses related to travel and accommodations, she added.

“I really appreciate that everybody helped me,” she said.

Federal Health Minister Leona Aglukkaq this month announced a team of researchers was selected to undertake a clinical trial for Chronic Cerebrospinal Venous Insufficiency (CCSVI) in individuals with MS.

The announcement follows a call for research applications by the Canadian Institutes of Health Research in November.

“Our government is committed to advancing research in MS with the goal of improving the health of those who live with this condition,” Aglukkaq said. “This clinical trial should provide more insight into the safety and effectiveness of the procedure proposed by (Italian physician) Dr. (Paolo) Zamboni.”

Co-funded by the MS Society of Canada, the clinical trial seeks to determine the safety of venous angioplasty and its impact on patients.
However, the government said the researchers must receive ethics approval from “relevant institutional research ethics board(s) before conducting the trial.

“The funds will be released and the study will begin if and when ethics approval is granted,” stated a government press release.

Murray hopes to see the procedure allowed in Canada.

Prior to the operation, “my fatigue was huge, my back pain was huge,” she said. “I couldn’t really walk because when I got tired my leg dragged.”

Her energy levels have improved, though the back pain that had initially subsided has returned.

“Some days the pain is not as intense as it was but it is still there,” she added. “My neck used to be really sore but it’s not sore now.”

A scientific expert working group of the Canadian Institutes of Health Research continues to review any new research evidence on CCSVI, said president Dr. Alain Beaudet.

Murray says a Barrie-based specialist will follow-up on her progress in May.

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