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A fight against MS and Canada’s medical establishment to try controversial treatment
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Daily Brew
Madeleine Mertl had just graduated from the University of Calgary in 1978 when she was diagnosed with multiple sclerosis. It began an odyssey more than three decades long fighting for every scrap of mobility as her body increasingly betrayed her. This is her own story of a decision to try a controversial treatment known as liberation therapy, still banned in Canada, which for many MS sufferers holds the hope of relief, if not a cure.
I've been fighting an up-and-down battle against MS for more than 30 years. As the disease attacked me periodically through the 1980s and '90s, canes gave way to walkers, then to wheelchairs and electric scooters. I quit working in 1989. Symptoms came and went but the disease progressed to the secondary progressive stage and now I spend most of my waking hours in a power wheelchair.
My husband, Steve, looks after me in our Vancouver home with a lot of assistance from visiting home-support workers. They help me with personal care, such as washing, changing my urinary catheter drainage bag and dressing, as well as range-of-motion exercises.
Four times a day, I take a handful of pills, muscle relaxants, antispasmodics, pain killers, anti-depressants and a daily injection of Copaxone, which inhibits MS exacerbations. A nurse monitors a chronic pressure sore on my heel caused by the spring tension in my spastic right leg. My hands are largely numb and my vision is deteriorating. I sleep in a hospital-type bed and much of my week is spent going to medical and therapy appointments. Ordinary things that take able-bodied people seconds to accomplish take me minutes. For the first time since my diagnosis I feel disabled.
So needless to say I was excited when I heard about the liberation treatment pioneered by Italian Dr. Paolo Zamboni.
Neurologists believe MS is an auto-immune disease but Zamboni theorizes MS may be connected to blockages in major veins circulating blood to the brain called chronic cerebrospinal venous insufficiency, creating a buildup of iron in the brain that produces free radicals, which he believes cause MS symptoms. The jury is still out and even Zamboni is pushing for more research. Meanwhile, clinics in many countries have begun offering venoplasty operations to open collapsed veins of MS patients. The procedure is similar to angioplasty, with a vascular surgeon threading a probe up from an incision in the groin to the blocked veins, then inflating a balloon to open it. Stents are sometimes used to keep the vein from re-collapsing but usually scar tissue is enough.
But not Canada. While governments and the MS Society of Canada have begun funding studies, the medical establishment has steadfastly resisted approving the treatment here. The factions are divided between those who want double-blind studies to prove the therapy's benefits and MS sufferers and their families - with growing support from some in the public - whose hopes have been raised by stories of those who've claimed improvements after the treatment.
Of course, my MS paid no attention to the debate. I continued to deteriorate. I could no longer lift my bum off my wheelchair by hauling myself up on a grab bar. The pain became excruciating but the opiate-based drug I was prescribed was changing my personality, making me fall into a sort of hallucinogenic half-sleep and fostering thoughts of suicide.
What got me out of this suicidal funk was sheer anger. I got off the opiates and made a decision: I was going to have this treatment before I was beyond help. Even if it meant leaving the country. Even if it meant going without travel insurance. At least I would have done everything I could to fight to take care of myself.
Many Canadians, including some friends, have gone to clinics in far-flung places like India and Poland for the treatment. Steve and I decided that if I was to do this, it would be in the United States.
My hopes rose when I heard it was being offered in Seattle. I even got on a waiting list. But they would only treat those whose neurologists agreed to submit information to the clinic. My neurologist saw liberation treatment as dubious, to put it kindly! Back to the drawing board.
Time and more research turned up the Vascular Access Center (VAC), also in Seattle, which would perform the surgery without paperwork from a neurologist. It also didn't require a pre-treatment ultrasound scan, which I would have had to pay for in Canada because the treatment is not recognized here. The clinic only used stents, a major concern for complications, in an emergency. And it charged a flat rate of $8,800. Yes!
My experience with the people at VAC, which operates in several U.S. cities, was stellar from the beginning. My initial query launched a well co-ordinated series of emails and telephone conversations in preparation for the surgery, including directions to the clinic in suburban Tukwila and nearby hotels where we could stay at a discounted rate. Although venoplasty is generally day surgery, we decided to stay overnight after the operation and return home the next day. I was given phone numbers for a care-giver service and medical equipment provider, which delivered a hospital-type bed to our hotel.
It was a three-hour drive from Vancouver to Tukwila on a rain-soaked spring day. The clinic itself is in a nondescript light industrial park. My late-afternoon appointment was pushed back because my surgeon, Dr. James McGuckin, had an emergency procedure. I joined several other Canadians in the waiting room and it would be evening before I was wheeled in for my venoplasty.
The operating and recovery rooms were spartan but equipped with the newest equipment U.S. private medicine could provide and staffed by a veteran team of surgical nurses.
Perhaps knowing how far some of us had come, Dr. McGuckin did not defer any of the scheduled appointments, nor did he rush us through, spending time with each patient prior to surgery to explain exactly what he would do and answer questions. I was worried the excess tone and spasticity in my legs would make working from the groin difficult but he put me at ease.
There was no general anesthetic. I was given a mild sedative and I felt no pain during the procedure. I was awake through the operation and could follow Dr. McGuckin's instructions, such as holding my breath while he threaded the probe through a heart valve. At one point he told an assistant to straighten my head. I'd been busted for trying to watch the operation on the scanner monitor he was using to guide the catheter traveling through my veins.
At one point I felt a sudden rush of blood through as he widened one of the constricted veins. The state-of-the-art scanner used during the operation revealed several stenoses (blockages); 70 per cent in the left jugular vein, 50 per cent in the right, and 50 per cent blockages in the azygous vein in the thorax and abdomen, and the left common iliac vein that drains blood from the pelvis and legs.
Steve joined me in the recovery room as we waited for the sedation to wear off and I could return to the hotel. We spent the time chatting with other patients and staff as we tried to keep tabs on a Stanley Cup playoff game between the Vancouver Canucks and San Jose Sharks. Vancouver won!
Dr. McGuckin reappeared to explain exactly what he had found in his trip through my circulatory system. The key to getting the benefit from the procedure would be post-operative therapy, he said. It would be 11 p.m. before we got back to our hotel.
And afterward? I knew, considering the level of my deterioration, that I shouldn't expect to jump off the gurney and book an audition with a ballet company. But from my reading and discussions with friends who'd undergone the procedure, I knew that having a post-op plan was crucial.
Many Canadian doctors wash their hands of returning liberation treatment patients. I was fortunate that a doctor at G.F. Strong rehabilitation centre in Vancouver, whom I'd worked with before, helped me with referrals. He also endorsed a prescription issued by Dr. McGuckin for three months of the blood-thinner Plavix, taken along with low-dose Aspirin, to minimize the chance of post-op blood clots. No drug store would honour the prescription without a Canadian doctor's signature. My GP and neurologist wanted nothing to do with it.
In the months since my operation, I've noticed some improvements. Nothing spectacular but at this point anything is welcome.
My feet are warm for the first time in years. My brain fog, a common aspect of MS, has lifted, making it easier to focus on tasks for longer. I can lift my behind off my wheelchair a little, which makes transferring easier. I'm no longer wiped out by heat and I have more energy, which helps with the intensive physiotherapy I'm doing now.
I feel I am, for the first time in years, a work in progress.
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