Despite Debate, MS Patients Find Surgical Liberation In Mexico
Jim Bailey, Trail Daily Times
TRAIL, B.C. — A pair of British Columbia brothers who travelled to Mexico for a controversial surgical procedure to avoid becoming wheelchair-bound say they're now recovering with a new sense of liberation. Matt Berukoff and his brother Dan, from Fruitvale, both suffer from multiple sclerosis. Matt's case, however, is much more serious and progressive. "I was toast. Basically it was my last resort — I was one step away from being in a wheelchair," he said.
When they left for Cabo San Lucas last month, they were filled with hope and anticipation; both brothers planned to undergo a procedure that would open up blockages in their veins. The day surgery is not available in Canada.
When they left, Dan had a significant limp and Matt had to be wheeled across the tarmac to the airplane. An MRI revealed an 80 percent blockage in Matt's jugular, while Dan had 70 percent blockage in his vein. In the last four years, Dan has lost feeling in his left side, causing his foot to drag, numbness and cramping.
The brothers had the surgery on Friday. The procedure took about two hours and the men said they felt an immediate change. "I noticed it right away," said Dan. "I felt like I had new legs under me. It was totally different. I use to cramp all the time at night when I was sleeping — not once have I had a cramp since then."
Since Dr. Paulo Zamboni's pioneering research developed the procedure a year ago, there has been a micrometer of movement on the MS front. Most recently, Canada's health ministers agreed to create a working group to speed up the study of the controversial treatment. The MS Society of Canada also set aside $1 million for a clinical trial of the liberation therapy if studies currently underway show promise.
But MS sufferers like Matt say they can't wait. "Clinical trials might take 10 years. I don't have 10 years. I want to have a life back," he said. While the medical community deliberates, MS patients who have had the surgery often can't receive follow-up treatment in Canada. Due to lack of direction, health authorities and practitioners remain tentative in treating MS patients who have undergone the procedure.
"CCSVI (vein constriction) diagnosis is still unproven and its treatment is still considered experimental. ... At this time we agree with the College of Physicians and Surgeons that there is not enough evidence to support this procedure," said spokesman Ryan Jabs in a release from the B.C. Ministry of Health.
Grand Forks resident Misha Zibin had the liberation treatment done in Albany, N.Y., last June. After venoplasties failed, he had three titanium stents inserted into his left jugular to maintain blood flow. The results have been nothing short of miraculous, he says. Still he needs medical check-ups every three months and 3-D Doppler ultrasounds to monitor the stents. His efforts to find treatment so far has been difficult.
"They have it in Canada, but basically they said they didn't know how to do it. I was originally denied just a simple ultrasound in Trail and I overheard him (a doctor) telling a tech in Grand Forks that he's got this directive from the B.C. government not to scan people with MS. I mean, that's totally discrimination against MS sufferers. They do it for dialysis patients and others so why not MS?" said Zibin.
Matt Berukoff feels a lot better since the procedure. His mobility has increased, he doesn't need the drugs or a wheelchair and his speech has improved significantly. He undergoes physiotherapy to stimulate the muscles in his legs that have atrophied after years of suffering from the disease. "From a rehab perspective, we kind of come after the fact," said Kirby Epp, physiotherapist for Valhalla Physiotherapy Clinic. "It's so new that we haven't had a chance to rehab people that have had this yet so we can't really say how much of an improvement we're going to see."
Epp has treated Matt for the past four years and, up until now, his treatment focused on trying to slow its worsening affects. Now he holds some optimism. "Before we were just trying to slow things down and maximize function, now there is a possibility of there being some recovery," he said.
The brothers will return to Mexico in February for a follow-up at the clinic. "I still don't know why Canada isn't doing this," said Dan. "I mean, you get a better quality of life, I feel better, Matt feels better, I can't understand why they are so against it." In the two weeks the Berukoffs were in Cabo, 30 other Canadians had the relatively simple procedure done at the same clinic at a cost of approximately $10,000 per patient.