Five years of living with an incurable disease like multiple sclerosis has taught self-described extreme-sports addict Joseph Hall to keep things moving on an even keel.
So when the 25-year-old heavy-equipment operator read media reports of a revolutionary treatment and possible cure pioneered in Italy in which some MS patients are professing a near-complete recovery, Hall said he decided to keep a lid on his emotions.
"To be hoping and wishing and have all this excitement over something that is not 100 per cent sure yet, I'm not 100 per cent stoked on it," said Hall. "I don't let that kind of stuff get me away from my way of looking at my MS."
The new treatment for MS patients, which is nicknamed "Liberation Procedure," was pioneered by Italian vascular surgeon Dr. Paolo Zamboni. Under the treatment, malformed veins that drain blood from the brain are opened with angioplasty, a procedure in which a balloon is inflated inside each vessel to clear blockages.
Zamboni believes a buildup of iron in the brain leads to the neurological symptoms of MS. In a group of 65 patients who received the procedure, 73 per cent had no symptoms after nearly two years.
The news flies in the face of standard medical thinking that MS is an auto-immune disorder, triggered by a virus or exposure to something in the environment.
It's widely believed that in MS, the body's immune system is triggered to attack the fatty substance known as myelin that insulates the nerves. Once the myelin sheaths have been eaten away, the nerves are no longer effective carriers of electrical impulses to and from the brain. The patient can experience numbness, tremors, spasms or complete, locked-in-position paralysis.
With the stakes so high, Canadian and U.S. researchers are anxious to test Zamboni's research.
But in the meantime, Dr. Wayne Shtybel, head of neuroscience for the Vancouver Island Health Authority, said he hopes MS patients and their supporters limit expectations raised by Zamboni.
For a start, Zamboni's procedure has proven effective only with patients who have the relapsing/
remitting subtype of the disease. These are the patients whose disease comes in waves of varying severity and then goes into remission.
Zamboni's methods have not been shown to be effective on the most severe form of MS, primary progressive, which afflicts 10 per cent of MS patients, who suffer an attack and then steadily decline.
Also, all of Zamboni's patients remained on standard drug therapies, which aim to prevent a relapse, which might suggest the vein angioplasties act in concert with the drugs.
In addition, the ultrasound and CT scan techniques and technologies used by Zamboni are not readily available in North America, Shtybel said.
Moreover, the angioplasty work performed by Zamboni has not been tested over a long period. What happens if those veins close up tight again?
"It's very interesting and it sounds quite simple: 'Just get an ultrasound and we are going to fix you.' But there are quite a few unanswered questions," said Shtybel.
Currently, the nearest place Shtybel has heard of that offers the technique is in California -- for a price of $80,000. B.C. Health Care won't pay for an unrecognized therapy.
He said Zamboni's work shows promise and researchers will try to replicate it. If the results are promising, medical science will do its best to fast-track the procedure. But at best, even that will take several years.
The Multiple Sclerosis Society of Canada has issued an invitation to qualified researchers who want to investigate Zamboni's techniques.
But the society counsels caution by the estimated 55,000 to 75,000 Canadians with the disease. An estimated 1,500 people on southern Vancouver Island have MS.
Zamboni's conclusions are "far from being accepted by most researchers in the field," wrote Yves Savoie, president and CEO of the Ontario division of the MS Society of Canada in a letter.
In the meantime, Hall said he is going to continue working with his MS, and try hard to work, get enough sleep and eat well. He has plans to work on a ski movie with a pal this winter, do some climbing -- and in the near future, there's snowmobiling.
What began five years ago with an attack of double vision has now gone into remission. But he has suffered relapses about five times now, most recently last summer, of varying degrees of severity. He has numbness in his legs but he manages.
"I am able to climb, I'm able to ski. I ski about 100 days of winter," he said.
"My attitude is [that] everything is dealing with MS."
rwatts@tc.canwest.com