Controversial treatment overseas costs thousands of dollars
Donna Romanuik’s multiple sclerosis is so bad she has to cling to walls and countertops to walk around her house. She’s afraid to think how much worse she’ll be in six to 10 years.
That’s roughly how long it will be before a so-called “liberation treatment” for MS could become available here, if further research confirms it works, and if it meets all of Health Canada’s stringent requirements.
But the unproven therapy, which dilates narrowed or blocked veins from the brain to the heart, in the way balloon angioplasty unblocks coronary and other arteries, is already available in Poland, Scotland, India and elsewhere, and patients are reporting remarkable results.
So why wait to get it? Hundreds of people with MS have decided they can’t just sit and watch their mobility and independence ebb away, so they’re trying to pull together thousands of dollars to travel out of country for the controversial surgery.
Romanuik, a married mother of three teens from Edmonton, is among them. So is Crystal Phillips, a 2014 Olympic speed skating hopeful from Calgary. Both are booked for the surgery at a hospital in New Delhi, India, later this month.
Michelle Smith, another Edmontonian, is waiting for an opening to have the procedure done in Scotland.
“I don’t have six years to wait for (Canada) to test and approve (the procedure),” says Romanuik, 47.
“Six years ago, I was fatigued, but I could go anywhere by myself; I could walk on my own. In another six years, I’ll be done,” she says, tearing up.
Chris Romanuik, who will accompany his wife to India, supports her decision to get the surgery.
“If we come back and we can go for a walk for three or four or five blocks, hand-in-hand, like we used to seven or eight years ago, it’ll be worth it,” he says.
Phillips, a 24-year-old natural nutritionist, says she’s hoping for a rollback in the symptoms that are affecting her life and holding back her skating.
“You just can’t compete against the best (speed skaters) in the world with a numb left leg and a blind eye, really.”
Smith says she’ll be “like a vegetable” if her condition continues to degenerate at the same rate it has for the past 10 years.
She hopes the procedure can slow or stop the neurological disease from progressing. She’s tired all the time, walks with a cane and can’t play softball like she did 10 years ago, but she’s learned to live with these symptoms. She just doesn’t want them to get any worse.
The three women have been excited about the treatment since November, when they first heard of Italian neurologist Dr. Paolo Zamboni and his theory that a narrowing or blockage of veins in the neck that drain blood from the brain — a medical condition known as chronic cerebrospinal venous insufficiency or CCSVI — may cause MS symptoms.
Between 55,000 and 75,000 Canadians have MS. The exact cause is unknown, but environmental and genetic factors have long been suspected for somehow turning the body’s immune system against itself, damaging the nerves of the brain and spinal cord. Resulting symptoms include problems with balance and dizziness, difficulty walking, fatigue, muscle spasms, tingling and numbing sensations in feet and hands, and incontinence.
Using ultrasound, Zamboni’s team found all MS patients tested had circulation blockages in their veins. Sixty-five of them, including Zamboni’s wife, then underwent a PTA (percutaneous transluminal angioplasty) to remove the blockages and reported impressive improvements in their symptoms.
Skeptics note Zamboni’s findings haven’t been confirmed by other research labs. They also suggest the benefits patients have experienced from PTA are probably a placebo effect — the power of belief in the treatment, rather than anything related to improved blood flow.
But the theory and the treatment make perfect sense to Romanuik, Smith and Phillips. It’s the most plausible of the dozens of “miracle cures” they’ve seen come and go over the years, including diets, vitamins and stem-cell transplants.
“Don’t even get me started about the ostrich oil that you rub topically on your body every night, and sleep covered in plastic,” says Romanuik, who has never tried it.
“I’ve been on chemo three times to kill my immune system and all it did was make me lose my hair. I’ve been on drugs specifically made for relapsing or remitting. I’ve done steroids, IV treatments — they’re all Band-Aids; they don’t work.”
“This is something so simple, non-invasive. It has to work,” adds her husband Chris.
“We have optimism and we have hope.”
What they don’t have is $30,000 to cover their travel costs to India and everything to do with the treatment.
Family and friends have set up a website, liberatedonna.com, sent out e-mails and organized fundraisers to help.
It’s the first time Romanuik is on the receiving end of fundraising. She and her team, the Munnky Krunchers — currently on hiatus — are usually raising funds for the MS Society of Canada. In 2005 and 2006, they had the largest team and/or raised the most money of any team in the country in the annual Super Cities Walk.
Ironically, Romanuik was diagnosed after struggling to complete her first MS walk, which she and some of her family and friends decided to join because it seemed like a good cause and it was an opportunity to get some outdoor exercise.
“I didn’t even know what MS was then,” she says.
Phillips, who has raised $250,000 to date for the MS Society through the MS Bike Tour, is also fundraising to pay for her treatment in India.
She raised $10,000 in two weeks selling colourful eye patches at crystalpatches.com after losing the vision in her left eye. She hopes to raise another $15,000.
Thirty-year-old Smith, who was diagnosed 11 years ago, also raises funds for the MS Society.
Her costs for the PTA treatment are being paid for by her grandfather; otherwise she couldn’t afford it, she says.
The women all believe they have CCSVI — especially Smith, who says some of her first MS symptoms affected her neck — but won’t know for sure until they are tested once they arrive at the clinics where they will undergo treatment. If they don’t have blockages, they can’t be treated.
Canadian doctors could easily do the testing, called venous imaging, and the treatment, venous angioplasty, but aren’t allowed to do them on MS patients until there is a proven link between CCSVI and MS, even though it’s obviously not healthy to have a venal blockage, Romanuik says.
Last month, she rallied outside the Alberta legislature with 50 others in support of MS patients being tested and treated for CCSVI in Canada.
She promises to further lobby the government when she returns from India and hopes testing will be offered in Canada within three years.
Romanuik’s 19-year-old son Trevon says he understands the “liberation treatment” is supposed to stop and maybe even reverse some of what MS has taken from his mom over the past 15 years.
“She’s telling everyone, ‘I’m going to come back and just run and jump in your arms,’ ” he says.
“I don’t want her to come back and be disappointed.”
Read more: http://www.montrealgazette.com/health/patients+eagerly+pursue+their+liberation/3124221/story.html#ixzz0qLE3zsIC