It has been a year since Paolo Zamboni offered the hope of liberation to multiple sclerosis patients everywhere.
The Italian doctor suggested that some cases are vascular disorders caused by vein blockages that lead to a build-up of iron in the brain. The possible way to free up the compromised blood flow - called chronic cerebro-spinal venous insufficiency (CCSVI) - is angioplasty. The procedure uses tiny balloons to open constricted veins.
Since then, hundreds of Canadians have sought out the unproven treatment overseas, paying tens of thousands of dollars out of pocket to have their veins opened up with balloons and stents. One of them, an Ontario resident named Mahir Mostic, died last month from complications after undergoing the procedure at a Costa Rican clinic.
As Canadians look abroad for relief, Ottawa has advised that clinical trials be delayed until more evidence is gathered about the connection between blocked veins and MS. This week, as Newfoundland announced that it would observe a group of patients seeking treatment outside the country, Caroline Alphonso and Siri Agrell set out to do the same.
Steve Garvie, 53, Barrie, Ont.
Diagnosed in 2000 with secondary progressive MS.
Treated in January at the Royal Victoria Hospital in Barrie.
Results: One of just a handful of Canadians to be treated at home before the programs ended, Mr. Garvie received a balloon angioplasty in his left jugular. Unlike other patients, he said he experienced no pain during the procedure and claims to have felt better on the operating table.
"I said to the doctor, 'You've done something. My left hand works.' It was pretty cool," he said.
Before the procedure, Mr. Garvie used a wheelchair, had no control over his bladder and his left side was completely numb. But so few MS patients had received the treatment, he didn't know what would happen. "It was so early, I didn't know what to think. I hoped the progression would be stopped. I was just desperate to not die. I figured I'd die in about five years."
Seven months after the surgery, he stopped taking his bladder pills and the colour had returned to his left foot. He now walks with a cane, except when he's out with his golden retriever, when he takes his wheelchair.
"Running's no good for me yet," he said. "Yet."
Dion Oxford, 40, Toronto.
Diagnosed with MS in 1997. For the first 11 years, he had relapsing/remitting MS, and it moved to secondary progressive in 2008.
Went to Costa Rica for treatment in June, to the same clinic as Ontario resident Mahir Mostic, who died last month
Expectations: Doctors in Costa Rica performed balloon angioplasty on two veins in his neck. "I had high hopes. I did hope that I would get my legs back. I did hope that I would get the feeling back in my hands and my feet. And that my bladder issues would be resolved," he says.
Results: But after the procedure, Mr. Oxford says: "My initial reaction was one of disappointment, I have to admit, because my hands were still numb and I didn't notice anything. But the beauty was that I did have my wife with me, who said to me, 'Dion, you're not really paying enough attention to how truly better off you are.' It was 8 o'clock and we were having dinner at a restaurant and she said, 'By now, every day you're done. You've got no energy.'"
Mr. Dion used a cane to get through airport security on his way to Costa Rica. He didn't need one when he returned. Still, his walking is not as steady - especially for long stretches - and his hands and feet are still numb. But, he says, he's not as tired any more. He spent roughly $16,000 for the surgery, hotel and airfare for his wife, daughter and himself.
"I'm just trying to live my life. I'm married. I have a seven-year-old daughter, whom I'm going out with at night now. We actually go to movies," he says. "It's a new lease of life. A new hope. A new light at the end of the tunnel."
Francine Deshaies, 51, Saint Lambert, Que.
Diagnosed with secondary progressive MS in 1994.
Went to Katowice, Poland for treatment in May.
Before the procedure, Ms. Deshaies could barely move. She was plagued by headaches, bladder problems, spasms and migraines. She felt no pain during the hour-and-a-half procedure, which involved putting a stent in her left jugular vein.
Results: "After the procedure, my daughter was with me, and she touched my feet, and she said, 'Mom, your feet are warm.' They were always cold. And after 15 or 20 minutes, I felt I could bend my knees," she says.
Ms. Deshaies still can't walk without the use of a cane. But now, she can go for a walk without having someone by her side. "My autonomy is back," she says. She's had follow up care in Montreal, because two weeks after the procedure, there was a blood clot in the stent. It's no longer there, she says. She spent about $12,000 on her trip to Poland.
"I still have MS, I will always have MS. I'm not a miracle," she said. "But at least I have a quality of life, which I didn't have because I was always depressed and always tired."
Diane Martin, 55, Toronto, Ont.
Diagnosed in 2001 with primary progressive MS.
Treated twice in New Delhi in May and June.
After returning from her second treatment, Ms. Martin "laid low," afraid to tell people that despite two angioplasties and a stent, she has experienced no improvement.
"I felt guilty that I was coming home and was not going to be a poster girl for this," she said. "I felt like I let other people with MS down."
Results: Her first treatment, which cost $6,500, had resulted in three good days in a row, including an evening in which she was able to make dinner for her son, something she had not been able to do for years. "That was just great and I thought, 'Okay, I'm kind of sold on this.' But then it all just went away." A second procedure, which cost $6,000, has no impact andMs. Martin said she couldn't face the possibility of a third trip. "I am doing well, but I'm not liberated. It didn't work for me," she said.
She wishes that neurologists here were more open to talking with MS patients about the procedure. "I'm smart, I can read, I tried to get as much information about the anti side as I could, because you just don't know," she said. "But unfortunately the neurologists are all hysterical. You can't talk to them. I found it infuriating, actually, that I couldn't get both sides."
In contrast, Ms. Martin said the MS group with whom she regularly meets has accepted her experience without judgment or disappointment, she said. She suffered a relapse before her travels and has not quite recovered. Even though her condition is unchanged, she said the hope of a successful treatment was a "wonderful gift." "I'm in my 50s, I've had my children and seen them grow up, so I feel lucky in many ways," she said. "But I sure enjoyed that hope for a while and I still have it for other people."
Jan Wexler, 57, Saint-Lazare, Que.
Diagnosed in 1988 with benign MS and developed into secondary progressive MS.
Went to Sofia, Bulgaria for treatment in June and July. Sought treatment again in Albany, N.Y., in October, and is now waiting to hear from a doctor in California.
Expectations: Slumped in a wheelchair, unable to care for herself, Ms. Wexler felt she had no choice but to try the experimental procedure. She had a stent put in her left jugular vein and balloon angioplasty in the others.
Results: At first, the surgery in Bulgaria proved remarkable: She sat upright; she raised her arms above her shoulders; the swelling in her left foot disappeared; she spoke a mile a minute; and the "brain fog" vanished. "My sister was with me, and she said, 'I can't believe how fast you're talking.'"
But the recovery lasted 10 days before Ms. Wexler reverted back to her old self. A second trip to Bulgaria revealed that blood clots had developed in the stent, and her veins had once again narrowed. A follow-up treatment did not improve her condition. Three months later, a doctor in Albany, N.Y., did a venogram - an X-ray that takes pictures of blood flow through the veins - but he couldn't perform an angioplasty because the veins were too blocked. Having spent as much as $30,000 by cashing in some of her RRSPs and relying on the goodwill of family members, she waits to hear from a doctor in California if he will perform the procedure. "I'm very, very disabled. I'm worse off, actually. I'm much, much weaker," Ms. Wexler says.
So why keep trying? "Because I know it works," she responds. "If you lived in my body for one day, you would not have to ask that question."
Nadia Salhi, 39, Whitby, Ont
Diagnosed in 1995 with relapsing/remitting and secondary progressive in 2009.
Treated in Alexandria, Egypt in May.
Lying in the recovery room after an angioplasty of her left and right jugulars and azygous vein, Ms. Salhi remembers having the sensation that her hands were suddenly skinny.
"I guess they were numb before and I didn't realize they were until they weren't any more," she said. "I almost felt as though I could hear and feel the blood start to flow."
Before travelling to Egypt, her airfare and $6,000 procedure paid for by a sister who had just won an online contest, Ms. Salhi could barely walk. She was depressed and rarely left the house. Her vision was bad and after 15 years of coping, her condition had suddenly deteriorated. "I felt like it had beat me," she said.
Results: Now, she is one of the MS sufferers who claims instantaneous results from her angioplasty and has returned to Egypt every month with other Canadian patients she has introduced to the clinic there. "I've been telling anybody who will listen about my experience, even the lady next to me in the grocery store," she said. Her right leg is still heavy, but she can walk unassisted and drive for more than an hour without getting tired. "I was hoping I could jog and wear stilettos," she said. "I can't. But I don't care because everything else is better."
Paulette O'Leary, 41, Toronto
First experienced symptoms when she was in high school. Diagnosed in 1997 with relapsing/remitting MS.
Underwent two procedures in May and June in Albany, N.Y.
Lying on the operating table as a doctor inflated a balloon in her jugular, Ms. O'Leary felt her feet start to sweat for the first time in years. The medical researcher has had two angioplasties in the U.S. and said the impact has been profound. Returning to Toronto after the first procedure, she was able to walk without a cane for the first time in years. But three weeks later, on Father's Day, she started feeling ill and within two hours, a familiar numbness had spread from her feet to her waist.
"It's scary. I thought, 'Is this something I want to do again?' All these people were warning me, 'Be careful, be careful,'" she recalled. But to her, the thought of doing nothing was scarier. She had recently started collecting pamphlets for a motorized scooter, which she pictured riding down the aisle at her daughters' weddings. "All I wanted was to be able to fly a kite with my daughter," she said.
She decided to return to the U.S. for a second angioplasty, and says her condition has been much improved. "My dad is ill right now and there's no way I could keep up this pace if I hadn't had the procedure done," she said. "My life has changed: I stand taller, it's just amazing." She is still taking Tysabri, an MS drug thought to control relapses, and her doctor sends her for venous scans every six weeks to monitor her veins, on the basis that she has a family history of heart disease. She spent $18,000 (U.S) on her treatments and said she would go for the procedure every week if she had to. "If this is available, I don't really care what it costs," she said. "I would mortgage my house to have this done."
Duncan Thornton, 48, Winnipeg.
Diagnosed with relapsing/remitting MS in 2009.
Went to Katowice, Poland in March for treatment
His so-called liberation therapy lasted half an hour, and involved a stent being placed in his right vein and a balloon angioplasty in his left. Laying on the operating room table, as the balloon was being released, Mr. Thornton said he felt more awake than he had in years. While his symptoms were not as dire as others, Mr. Thornton suffered from such severe fatigue that he could barely function.
Results: After the procedure? "My brother and I walked around Katowice for hours. And the day after that, we were in Krakow and we walked around Krakow all day," he says. "I'm nearly normal."
He knows his symptoms of MS haven't disappeared. He still feels numbness. All told, he spent about $12,000.
"I went not expecting it was a cure for MS, but that it might stop the progression of the disease. That's all I was looking for," he says. "The quality of life benefits I've gotten have been astonishing. I've gotten hours of my life back every day. I can behave like a normal person. I can play with my kids. I don't have to measure my energy before I go for a walk and can even go shopping in a mall for more than 20 minutes."
Perry Goodyear, 37, Grand Bank, Nfld.
Diagnosed with primary progressive MS in 2003.
Went to Albany, N.Y., for treatment in October.
Expectations: "My biggest thing was being able to live longer. They never gave me much time ... I wouldn't have seen 40 years old," he says. "It was the last hope really, because all the medication and everything was only making me go down more and more."
Results: An hour and a half in surgery, three stents and three balloon angioplasties later, Mr. Goodyear describes his procedure this way: "I'm feeling on top of the world now. I'm feeling good, no sickness and stuff like that."
Prior to surgery, he was confined to a wheelchair, couldn't eat solid foods, felt fatigued and was prone to illness. He still remains in a wheelchair, but feels tingling in his feet, has goose bumps, which he hasn't felt in years, has strength in his left arm and he can move his fingers. He's hoping to walk again, and is scheduled for physiotherapy next month.
He was undeterred even though there were risks involved in the unproven procedure. "I never really had nothing to lose. I was coming downhill pretty fast," he says. "They [Canadian doctors and the government]are all against it. I don't know why. But for what I've felt since the 4th of October, it's well worth the $11,000."
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