MS liberation treatment trials given the 'OK'
One year after Diana Gordon had multiple sclerosis (MS) liberation therapy done in New York, Canada announced it will start performing trials on this side of the border.
"It's a year too late," Gordon said Thursday. "But, better sooner rather than later, I guess."
Gordon says the surgery changed her life remarkably for the better.
Last June, she travelled to Albany, NY, to have the liberation therapy performed by Dr. Gary Siskind.
When she arrived in New York, Gordon said she could no longer swallow properly, didn't have the strength to cough, suffered fatigue and what she calls 'brain-fog', or the inability to think clearly.
During the short afternoon surgery, Siskind widened both of Gordon's jugular veins and inserted a stint in the azygos vein.
Now, Gordon says she lives life to the fullest.
"My days are filled with what everybody else does now," she said. "There's no comparison to how I felt before, and how I feel now. I have a life again."
Gordon's success story is mirrored across the country and the Internet. For those who could afford to pay the upwards of $10,000, plus travel costs, to have the procedure done.
The liberation treatment was discovered by an Italian vascular surgeon, Dr. Paolo Zamboni, who says MS patients suffer from what's now being called chronic cerebro-spinal venous insufficiency (CCSVI).
It can be treated with angioplasty and inserting stents or small artificial tube wideners to allow increased blood flow through the veins.
This week, federal health minister Leona Aglukkaq announced there has now been significant headway made into Zamboni's findings to perform the trials in Canada.
Dr. Sandy MacDonald initially performed about six angioplasty procedures on MS patients at Barrie's Royal Victoria Hospital, but stopped just short of performing one on Barb Farrell last year.
Farrell travelled to the U.S. and paid out of pocket to have the treatment performed.
As her husband Patrick said, she perked up on the operating table, but has since declined due to the immune inhibitors she's taken for years.
"She was two weeks away from death when she had the surgery, the damage was already done," Farrell said. "But even she was able to turn her head and speak right after."
Farrell's frustration with the Canadian MS Society and the lack of initiative within the Canadian Institutes of Health Research (CIHR) for not beginning the trials last year is understandable.
He'd like to know what changed their minds and which protocols they'll be following during the trials, hoping a transparent clinical trial will offer better results in the long run.
Last September, John Farrell, their 10-year-old son, spoke in Parliament about how he believes every Canadian with MS should be allowed the treatment.
"This (trial) research has been patient driven, by the patients and their families," Farrell said. "It's been sick people trying to help other sick people."
Also pushing fervently for the trials was Barrie MP Patrick Brown.
"I'm ecstatic about this news," Brown said Thursday. "A few of us have strenuously advocated for this, including Dr. Sandy MacDonald who's performed this surgery in Barrie. And now some of the best medical minds in the country have agreed Canada should have a clinical trial on this."
Brown spoke in Parliament last June about his desire to have the government fund the venous stent surgery.
He uses cardiovascular surgeon MacDonald's analogy of having neurologists working with MS patients to "calling in an engineer to do a plumbing job - this is a plumbing problem."
Brown says he understands that long-time sufferers of MS may not see the same improvements that those with a more recent diagnosis may feel, but for those who have had the surgery and have seen the benefits, it's immeasurable.
"In terms of the scope (of the trial) and who and how many are going to be involved, we're working on that now," said Brown. "The CIHR knows it's a priority."