Tim Donovan has a new lease on life these days, thanks to a contentious treatment sought by many Multiple Sclerosis sufferers. Tim, 60 (a councillor in Fredericton Junction, New Brunswick), was diagnosed with MS 25 years ago. Last summer, he had the liberation procedure performed at a clinic in Albany, New York (both of the jugular veins in his neck were 50 per cent closed).
Developed by Italian vascular surgeon Dr. Paolo Zamboni in 2008, the procedure uses angioplasty (ballooning) to widen the veins in the neck to help relieve MS symptoms. It's based on the theory that MS may be caused by iron buildup in the brain due to abnormalities in the veins that drain blood from the brain and spinal cord (which Zamboni coined chronic cerebrospinal venous insufficiency, or CCSVI). Currently, the liberation procedure is not available in Canada. (Though in June, the federal government announced its decision to begin clinical trials for the controversial Zamboni procedure, also known as the "liberation therapy.")
"Half of the year I was tied totally to a wheelchair, the other half of the year I could walk by holding onto the furniture," Tim says of his life before the procedure. He says the liberation procedure helped restore his balance and energy, took him out of his wheelchair and brought the colour back to his face. He can even jump up and down with two feet now, which he says is "something that is huge to anybody who has MS." While he thought the placebo effect might have played a part at first, this wasn't the case.
"I walked down the hall and the doctor said, 'Look at him go,'" he remembers.
He so strongly believes in the procedure and how it's helped turn his life around that he and John McLaughlin (a former provincial fire marshal in Fredericton who also underwent the procedure) are spending the summer driving across the country, spreading hope. On May 9, they touched down at the Sheraton Hotel in St. John's during a stop on their New Hope for Multiple Sclerosis 2011 Canada Tour.
"I'm not saying that MS is more important than any other disease, but the human life is important to me. The purpose of this tour is this: to get CCSVI treatment available in Canada now."
If you or someone you know has MS and is considering going abroad for the liberation procedure, like Tim did, Dena Simon, president of the MS Society of Canada, Atlantic Division, has some advice:
1) "The key thing is that this is an experimental treatment and it's certainly the recommendation of the MS Society that if you're going to engage in experimental treatment, you should be doing it inside the confines of a clinical trial because there are safety measures in place and there's very close scrutiny of everything that's going on and people are protected."
2) "I think what they need to do is visit with their doctors prior to going for this treatment and getting a clear idea from their home physician what kinds of information he or she is going to need in order to do effective follow up after the procedure. Some people are going to places where English is not the first language, so it's going to be really important that they get good documentation on what has been done and what kind of follow up is necessary. So I would think keeping those doors open between the patient and the doctor and the healthcare team that takes care of that patient is going to be very, very important."
3) If you're looking for more information on chronic cerebrospinal venous insufficiency (CCSVI) and MS, visit ccsvi.ca, an excellent website maintained by the MS Society of Canada. "It carries all information. It's not edited, so anything that has come in that's published, anywhere in the world, is going to be on that site," Simon says. "So if people are looking for unbiased information that gives the full story, that's the place to go and I would encourage them to clearly understand all the implications of any choice that they make."
To follow Tim and John's journey, visit www.newhopeforms.ca. To find out what Newfoundland and Labrador is doing to dig deeper into this contentious treatment, see the July 2011 issue of Downhome.