Barb's 'last hope'
J.T. Mcveigh The Barrie ExaminerMS patient Barb Farrell, whose fight for the liberation treatment has been profiled in the Examiner, is back at home in Barrie with her husband, Patrick, and 10-year-old son John.
Two fingers in the middle of the night. That's what Barb Farrell is hanging onto.
"It was July 4th at one in the morning," she says in tone just above a whisper. "I woke up and I could move two of my fingers and my hand.
"I thought, at last it's starting."
Her husband, Patrick, with personal support worker, Paulette Munroe, has moved Barb from her wheelchair into an armchair in her living room after wheeling her into the house. She's just returned from the hospital to stay and her 10-year-old son, John, greets her with a big hug and the teddy bear she's had since she was an infant.
She hasn't been home since she was whisked off to hospital May 11.
She hasn't yet seen the chandelier her mother surprised her with and that her husband had hung for her in the dinning room.
She hasn't yet seen how Paulette has prepared the house for her return.
But she has a story and she wants to tell it.
"This was my last hope," explains Barb. "Everyone else came out of the procedure room with something changed for the better immediately after.
"I thought: 'My God, I'm the one person it won't work on.'"
The procedure is angioplasty on veins in the neck. It appears that a good portion of patients with multiple sclerosis have blocked veins, preventing regular blood flow from the brain. By using angioplasty, a procedure more commonly used on heart patients, doctors are able to restore regular blood flow.
But the diagnosis and the treatment approach has been relegated to the realm of experimental in Canada.
There are indications that angioplasty, which doctors say is relatively simple and of low risk, eases some of the symptoms of MS. Until Italian doctor, Paolo Zamboni, dubbed this condition CCSVI (chronic cerebrospinal venous insufficiency) and presented the angioplasty procedure to correct it, people with MS were left helpless to deteriorate, some symptoms somewhat controlled by medication, but no absolute cause and no absolute cure in sight.
"So is it real or is it placebo" Dr. Sandy McDonald asks, recalling a recent conversation he had with an MS patient. "She said: 'Well if it's placebo, I want it.'
"I absolutely think we need to do a randomized controlled trial with a treatment arm."
McDonald stands alone in the limelight as the Canadian vascular surgeon who has performed six procedures in Barrie and is willing to talk about it. He's met with Zamboni, studied his testing regime with staff members and he has followed Zamboni's procedure.
He's conducted hundreds of tests at his Barrie facility on patients from all over. He's also tested about 100 "normal" people with no relation to MS to see if normal really is normal. He's not discussing his findings just yet. Although he is expecting some results to show up in a medical journal relatively soon.
McDonald has become an outspoken advocate. He wants to see clinical trials testing the procedure and he's certainly seen his share of patients who so want to have access to the procedure as part of a study.
"We need to validate the science. We need an evidentiary database. We need to develop professional protocols," he said. Trials are the means to that end, he adds.
He points to Scotland and the United States, as areas that have embraced the science. And he rattles off a list of U.S cities and cities around the world where MS patients can access the procedure. None are in Canada, which reports among the highest incidence of MS.
At the very least, he suggests that those who want to undergo the procedure be allowed to access it under compassionate grounds.
McDonald tested the veins of MS patients at his Barrie Vascular Imaging. Intrigued, he had six patients undergo the procedure at Barrie's Royal Victoria Hospital earlier this year before he was stopped. Most have reported improvements in their condition and some have been lobbying to have the procedure accessible to MS patients in Ontario. Barb was to be the seventh patient. Two days before the scheduled treatment date, the Farrells were told it wouldn't happen. There was no explanation, no meetings.
Barb got worse and ended up in hospital. Her husband followed the debate with frustration. Barb's condition further declined. She was bed-bound, unable to move much more than her eyes. The Farrells began planning to move her into hospice where she would spend her remaining days. But she wasn't ready to give in, despite her diminishing functions.
Private donors, intrigued by the stories of recovery MS patients reported after undergoing the procedure, came forward with money and a plan. Barb was flown in an air ambulance to a U.S. facility to undergo the procedure.
"When I had the procedure done I was still paralyzed," said Barb, who now is able to move her head freely.
Her laboured breathing is gone, but that could be partly thanks to the morphine, which she no longer takes, says Patrick.
There was some movement in her hand after the procedure and Patrick was encouraged. But Barb wasn't. And she went into a severe depression.
It took two weeks, but finally on that July morning, Barb noticed she was able to finally move two fingers.
"I'm in a lot of pain," she says, finally home after a six-month absence. "I'm just hoping that's going to change.
"I think my left hand will move. It did once."
Barb, now 47, experienced problems in her early 20s, explains her mother Valerie Lawrence. It began with small complaints that family members dismissed. One day, she felt like her mid-section was wrapped in cotton batting and her extremities were numb. A diagnosis of multiple sclerosis soon followed.
Her condition kept deteriorating and, one day, she woke up and couldn't walk. That was more than a decade ago.
"When people say: 'Oh, is she walking?' They don't realize how bad she was. This treatment has made a difference, it's improved her symptoms," says her mom.
"It's been great to see, she's getting some improvement. Her face was like a mask... she wasn't with it at all."
Canada's medical, scientific and political communities are divided over this approach to MS that patients are embracing.
The Canadian Institutes of Health Research reported that there isn't enough evidence to support Zamboni's approach and suggested it was premature to adopt it. The conclusion was based on information gathered by an expert panel. But McDonald was not on the panel.
McDonald said he's been on expert panels on the issue in the U.S. and, recently in Scotland, but not in his own country.
At that time, the CIHR also had a proposal for randomized, controlled, double-blind study before it, presented by McDonald as part of a medical group "to see if patients with MS have CCSVI."
They've not received a reply on their application.
Health Minister Leona Aglukkaq accepted the recommendation made by the CIHR. It was premature to move on the issue she decided.
In Barrie, Liberal MPP Aileen Carroll has also been lobbying to have the treatment accepted in Ontario and she's circulated a petition. But her government's health minister won't bite.
"It is not a disease that we've had much good news about, historically.... We owe it to people with MS to get them answers as quickly as possible," Ontario Health Minister Deb Matthews said about MS while visiting Barrie last week.
She cited some of the studies currently underway in Ontario. But none involve hands-on clinical studies allowing MS patients to undergo the procedure. The science, said Matthews, just doesn't support it.
"We have a responsibility to ensure the dollars we spend on health care is going to help people," she said. "We do not yet have that evidence."
Back at home, the Farrells are fighting what they see as lack of movement, on the issue.
Steve Garvie and Diana Gordon were on hand for Barb's homecoming. Garvie was treated by McDonald in Barrie and has been preaching the praises of the procedure since. Gordon went to the U.S. to have it done. Together, they have joined forces with Patrick Farrell, to form the CCSVI Foundation to access immediate patient care and serve as a resource.
"Just being at home is great for her," said Patrick, "she's enjoying food for the first time in months."
She is no longer relying entirely on a feeding tube and she's drinking water as well.
"We've been through 10 to 15 years of a downward spiral," said Barb. "I'm hoping."
WHAT IS MULTIIPLE SCLEROSIS?
MS is a chronic neurological disease. It is marked by lesions on the brain, optic nerves and the spinal cord, resulting in the loss of the insulation, or myelin coating, of nerve fibres.
There are two types, relapsing-remitting (FFMS) for which there is disease modifying therapies that slow down the condition and primary progressive (PPMS).
- MS is more common in areas further away from the Equator.
In Canada 55,000 to 75,000 people are believed affected.
ABOUT 132.5 Canadians for every 100,000 have MS.
- Women are two to three times more likely than men to have MS.