N.S. MS patient feels renewed after 'liberation'
Published Sunday, June 6, 2010 10:59AM EDT
Christopher Alkenbrack says he doesn't regret a thing. The Wolfville, N.S. teacher has undergone a controversial treatment for his multiple sclerosis at a clinic in Poland, despite concerns about the quality of treatment at foreign clinics. And he says he's never felt better.
When CTV News first talked to Alkenbrack in early March, he showed us how 18 years of MS has disabled him. The father of two walked with effort using two canes, suffered constant fatigue and bouts of vision loss.
"None of the medicines that I've used over the years, the injectable medicines have really worked to stop my MS. It's still progressed," he told us at the time.
After hearing about a new theory that MS might be linked to blocked veins in the neck and chest, he was captivated and found a doctor who would test him for the condition, called CCSVI, or chronic cerebro-spinal venous insufficiency.
Tests confirmed he had a blocked right jugular vein. He decided to get what's been dubbed the "liberation treatment" to open the blocked vein. While many MS experts say the treatment is questionable and needs careful study, Christopher decided he didn't have time for medical research to confirm the theory.
"I can't wait. I could have a major attack during those two years while I'm waiting for something to come to Canada," he told us.
So in a move some would call risky, even dangerous, Christopher travelled to Poland where doctors at a private clinic opened his jugular vein with balloon venoplasty.
The procedure and travel costs set him back $10,000 and came with no guarantee of success. In fact, one of the first published studies conducted by Dr. Paolo Zamboni in Italy found that there is a 47 per cent chance that opened veins will close back up again.
But Alkenbrack say he felt the effect of the 30-minute procedure immediately.
"Half an hour after the procedure I am wiggling the toes on my right foot as well as I did on my left foot and I was just amazed," he told CTV.
"I was no longer walking with two canes because of my balance. My balance had almost immediately improved as well. Once I got out of bed I shed a cane immediately. I was walking with one cane.
"The next morning I went to the lobby of my hotel, I actually walked across the hotel lobby with no canes. It is something I have not done in literally years," he said. "The reaction of the people in the hotel lobby -- there was about 30 or 40 people there -- and people started spontaneously crying or clapping."
"I was stunned. I walked to my wife. She was on the other side of the lobby. I just gave her a big hug and I know that Claire's reaction was 'Wow. I got part of my Christopher back'," he says.
Alkenbrack says he doesn't suffer anymore from the overwhelming fatigue he'd known for the last couple of years. His balance is "pretty good," and he can walk backwards, something he hadn't done in years. His vision improved almost instantly. The jerky eye movements that he would get over time are gone, and the brain fog is gone. He says he feels like he stepped back five years in time.
The question now is are these changes genuine and lasting? Many MS doctors say they'll remain skeptical until studies confirm stories like Alkenbrack's are not just "the placebo effect." Alkenbrack feels his improvements are real.
"Never in my life have I had a reaction like this," he says. "I could have experienced a placebo effect when I switched my MS meds and I never did."
"I did see my family doctor last week. She was floored. She was stunned by the improvements. I was in her office and I was standing up with no cane and even my posture had improved. She noticed I was standing up straight and I didn't have the dizziness that I used to have all the time.
"And I asked her, 'Do you think this is the placebo effect?' and she said, 'No, it is not the placebo effect, Christopher.'"
As a symbol of the optimism he's feeling, Alkenbrack says he's giving up his handicapped parking permit -- "I'm not going to use a spot I won't need" -- and his wish now is for others with MS to have a chance to see if they improve.
"I would love to see my friends with multiple sclerosis who suffer daily and struggle daily, I would love to see them have this procedure done in Canada," he says.
"It is a very simple procedure. I think it is very cost-effective. If a procedure that we know can be done in Canada for about $1,500 can improve someone's quality of life for years or set the MS clock back by a couple of years… they should have the right to have that done in Canada."
Alkenbrack says his journey and that of another patient was filmed for a documentary that will be posted on the Internet in the coming days, at operationespoir.com.
With a report from CTV medical specialist Avis Favaro and producer Elizabeth St. Philip