Thursday January 18th 2018

Cobourg native seeks liberation treatment for MS

A former Cobourg resident hopes a controversial surgery, known as the liberation treatment, will help keep her out of a wheelchair.

Born and raised in Cobourg, Rachel MacCulloch was diagnosed with relapsing/remitting Multiple Sclerosis (MS) in 1998 when she was 23 years old. Ms. MacCulloch now lives in Pontypool in Kawartha Lakes but occasionally works at Dairy Dream in Cobourg and has friends and family in the community.

Treatment for CCSVI (chronic cerebrospinal venous insufficiency) known as the liberation procedure, is a venous balloon angioplasty, similar to a procedure that opens clogged arteries and is used to treat coronary artery disease. The procedure as a treatment for MS is not covered under OHIP or available in Canada. The MS Society has said the surgery, while tolerated in arteries, needs to be proven safe and effective in veins.

Balloon venous angioplasty is used in some kidney dialysis patients where the benefit has been proven to outweigh the potential risk, according to the MS Society. The liberation treatment was discovered by Italian doctor Paolo Zamboni and was first reported in the Canadian media in November 2009. Dr. Zamboni’s research found more than 90 per cent of people he tested with MS had blocked veins. He found the procedure unclogs veins and gets blood flowing normally. After the procedure many found MS symptoms were relieved.

Ms. MacCulloch understands the treatment is not a cure for MS but hopes her symptoms will not worsen. She has some memory issues and recently noticed the fine motor skills in her hands have declined. She suffers from weakness on her left side and uses a walker.

“I don’t want to end up in a wheelchair,” she said, adding there nothing wrong with being in a wheelchair, but “if I can prevent it, why wouldn’t I try?”

Like many people with MS, Ms. MacCulloch is seeking out the liberation treatment before it is too late. Although research into the procedure is underway in Canada, Ms. MacCulloch said she cannot wait. This summer she had the Doppler test, which a type of ultrasound used to detect the narrowing of arteries in the neck. The test determined she is a candidate for the procedure.

She hopes to get the procedure at a clinic in Albany, New York by the end of this year or early next year, she said. It costs $10,000 for the procedure, not including travel costs, she said.

Fortunately friend Tracey Osborne has stepped in to help Ms. MacCulloch. Ms. Osborne said she has noticed her friend’s symptoms get progressively worse over the six years she has known her. As a relatively healthy person, Ms. Osborne wanted to find a way to help.

“I think it’s just the right thing to do,” she said.

She has planned a unique fundraiser this Saturday, Sept. 24 at her clinic Absolute Therapeutics. Ms. Osborne is a registered massage therapist and a craniosacral therapist. Four massage therapists including Ms. Osborne and one holistic practitioner are volunteering their time on Saturday to offer 30-minute massages, and 40-minute holistic therapy, Reki and reflexology sessions. The $40 charge for the treatments will go towards Ms. MacCulloch’s surgery. There will also be raffles with prizes donated from local businesses. There is also a jar to collect donations at the clinic.

“I hope to raise enough money to give her a start,” said Ms. Osborne.

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