A Calgary woman’s death from neck vein surgery to treat multiple sclerosis hasn’t changed Reg Kreil’s opinion on the experimental procedure.
“It doesn’t make me worry,” said the Rimbey resident, who paid $17,500 to undergo two of the same surgeries in Mexico because the treatments are not yet approved in Canada.
Kreil insisted he would “go under the knife” a third time if the so-called “liberation” procedure, developed by Italian neurologist Paolo Zamboni, is ever approved in Canada.
“It might buy me some time so I don’t deteriorate so fast,” added Kreil, whose brother also has MS, and who has seen friends die from it or move into nursing homes.
While MS sufferers who have good mobility might hesitate about the surgery, others, like Kreil, who need help with dressing and rely on a wheelchair, feel they have more to gain from the experimental treatment.
“I’m not down and out yet, but I’m getting close — so why not take a gamble?” said Kreil.
He had just completed his second treatment in Mexico when he heard Maralyn Clarke suffered a fatal brain hemorrhage on April 13 after getting her neck veins widened with balloons in a California clinic.
The information was released last week.
Even though Mahir Mostic, of Ontario, also died after undergoing the same procedure in Costa Rica in 2010, Kreil considers these deaths an “accident.”
He believes tragic outcomes can happen to a very small number of people even after standard surgeries, such as appendix operations.
“I’m looking at this from the other side of the fence,” added Kreil, who doesn’t have any other drug or treatment options.
Although he’s experienced only modest gains from the two surgeries done a year apart — Kreil describes feeling more energetic, with better balance and strength to move himself without as much assistance — he’s still optimistic about the procedure’s future.
Kreil, who was diagnosed with progressive MS in 1981, said the treatment “hurt like crazy” because it’s done without general anesthetic, but has made an “astounding” improvement in many people’s lives.
Perhaps if it’s further refined in Canada in a few year’s time, he hopes it will make a greater difference to him.
Other Central Albertans aren’t as sure about the surgery, considering the two deaths.
Dean Minion of Leslieville, wonders whether it could improve his life, since no other treatments are available for his progressive MS. “But my feeling is that I should let them experiment with it a little more before I’m going to try it,” added Minion, who uses a wheelchair.
Although he understands why some people who feel they’re “at the end of their rope” are willing to try anything, he said “when the end result (could be) death, what are you going to do? Flip a coin?”
Minion prefers waiting for the results of an observational research study that’s now being done to see if the surgery is worthwhile.
Bre Fitzpatrick, of Red Deer, is also waiting for study results. Having only been diagnosed with MS a year ago, she said her mobility is still good so she doesn’t feel the same urgency to try an unproven procedure.
“I felt like, if something did go wrong, I would have a lot to lose,” said Fitzpatrick, who works for the local MS Society, but is speaking for herself.
Fitzpatrick believes the neck vein surgery “might potentially be the answer, but it needs to be researched.”
The federal government is also planning to conduct clinical trials of the procedure, although no time line has yet been set.