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Wednesday, May 18, 2011 7:19 PM | Ken Torbert Volg link

The fight to get patients with multiple sclerosis access to a controversial procedure not available in Canada rages on.


Steve Garvie was one of six patients to undergo the experimental procedure in Barrie before it was shut down and has spent much of the past year telling people how much it has changed his life. He has served as a poster boy of sorts for CCSVI (chronic cerebro-spinal venous insufficiency).


The concept is that many with MS have collapsed veins, mostly in their neck that, when opened alleviates some of the symptoms attached to MS. MS is considered a neurological disease with no known cause or cure.


Garvie has since launched the CCSVI Foundation in hopes of accessing the treatment for Canadian patients abroad, where it is available.


"The goal is to send people to have the procedure done," he said, adding that getting the information out is integral to the task.


The group is presenting information sessions in Barrie and Aurora during the next month to explain their dilemma. And the key speaker is Dr. Sandy McDonald, a Barrie vascular surgeon who is at the forefront of the debate in Canada.


The first event is May 26 at Bear Creek High School from 7 p.m. to 9:30 p.m. The second will be held at the Aurora branch of the Royal Canadian Legion June 2 from 7 p.m. to 9:30 p.m.


While McDonald has a presentation, much of the evening will be dedicated to people's questions.


Garvie's organization is helping to send three people to Providence, Rhode Island to have the treatment done June 15 – a set of twins from Parry Sound – one of whom requires an ambulance transfer - and a Barrie man.


CCSVI Foundation has been raising money to help people make the trip. Its Stroll and Roll, held at the same time as the annual MS Foundation walk, raised $4,000.


"People need to know what this is," said Garvie, pointing to the diagnosis of CCSVI for MS patients.


Prior to his treatment by McDonald last year, Garvie was living in assisted housing, receiving home care and receiving $40,000 in drugs – largely from the taxpayers' purse.


Now he has regained many of the functions he was losing, uses a cane to get around, lives in his own place and gave up on the drugs.


"I'm walking proof that it does work," he said. "I use my wheelchair to walk my dog... that was paid for by the taxpayers."


http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=3124930