It’s nearly five pm Saturday, September 18, relatives and friends have arrived at the Jaffray Seniors’ hall. You can feel the nervous excitement of anticipation as everyone waits for Maryanne Lynch Ratz, Darren Robillard and Louanne Lightburn Henry. Mary Lynch checks a text message and says “they’re by MacDonald’s farm”. Another half hour’s waiting that adds to the electricity in the air.
Maureen Aquila, Darren’s sister says, “They were so excited that they could go somewhere to get treatment, it’s a tragedy that they have to travel so far to get this help but the government gives them no choice. Why not collaborate with doctors in these countries? They’ve received an unbelievable level of care”.
His mom Darlene interjects, “They have been treated like gold, they did the procedure while they were awake, Darren was naseaus for a day but he noticed immediate improvement, the pain was gone his vision improved, he said that everything was “so brilliant”, he finally could sleep through a night without pain, his hands don’t tingle any more”. Maureen adds, “it’s another tragedy that many don’t have the means to do this’. I move to where Louanne’s younger sister Christine Lightburn is reclined in a wheelchair. “I’ve had MS since I was 18 and I‘m now 42” she says quietly. Christine is in rough physical shape. She’s happy that her sister has been able to go for this treatment but for her it’s highly unlikely that she could make the long arduous trip to such a far away land. This makes it all the more poignent that this treatment isn’t available in Canada.
TV cameras are ready as a vehicle draws closer and stops to let Maryanne, Darren and Louanne out. Having just completed a thirty hour trip that began in India with stops in Newark, New Jersey, Kalispel Montana and now Jaffray, the trio should be worn out but surprisingly they come in looking rested and refreshed. There is a radiance to their faces that is inextinguishable. This is shocking because when they left at the beginning of September to receive experimental treatment for multiple sclerosis they weren’t well. Darren says they actually had to assist him into the hospital he was in such bad shape after the journey to India, one of several countries offering a new procedure that won’t even be entertained to happen here in Canada anytime soon leaving individuals suffering with MS no choice but to search for treatment where it’s available.
According to the National MS Society website, “Recent preliminary studies have suggested that a phenomenon called Cerebrospinal Venous Insufficiency (CCSVI), a reported abnormality in blood drainage from the brain and spinal cord, may contribute to nervous system damage in MS. This hypothesis has been put forth by Dr. Paolo Zamboni from the University of Ferrara in Italy. Based on his initial preliminary findings published in June 2009 from a study of approximately 65 patients, Dr. Zamboni and colleagues who have begun investigating CCSVI state that this pilot study warrants a subsequent larger and better controlled study to definitively evaluate the possible impact of CCSVI on the disease process in MS. Dr. Zamboni notes that people with MS should remain on their immunomodulatory therapies as has his wife after her endovascular surgical procedure.” Darren, Maryanne and Louanne are all aware of the controversy but chose to go regardless. As the three get embraced by those present tears are visibly flowing. The air is so emotionally charged that I find tears clouding my own vision.
Rick Lightburn, Louanne’s dad guides them to a table set up and invites Jaquie Boreen to join them. Jaquie travelled to Mexico in August to receive the same treatment. He introduces the four who didnt know each other well previously but now have bonded strongly “making them family”. Rick jokes that Darren’s wife Sheila and Maryanne’s husband Ron accompanied them on the trip “to act as referees” and then adds “after this we’re going home to a big curried chicken dinner”. This gets an immediate response from the three that they would prefer not to have curried anything for a while and no more warm goats milk on cereal in the morning either. Christine, her face a study of emotions looks on from her wheelchair and calls out “we missed you, we’re glad you’re back.” Rick adds we were worried sick with you all being so far from home. The three say, “We were met at the airport by people in suits, they took us to the hospital and got us accomodated, they are the most polite people in the world, they have someone to do every little thing, there were so many of them that we almost got no rest, the door was swinging all day long, many tests were done before the procedure was done. We brought information to share here in Canada. There has been a benefit for each one of us, an overall increase in energy”. Darren adds, “I had a blockage in my chest, I wasn’t sedated, I could feel everything we were well looked after.
He says that every test was done before the treatment, thirty six thousand dollars spent annually and all it did was make him sick. Maryanne says she had, “A bit of a bump, they found two blockages and my jugular vein was twisted like a ribbon, there was no blood flow there, but when they got through it was like a light bulb went bright. It was like opening a pipe, of twenty-six problems I suffered with all but two has been reversed”. Maryanne says her doctor gave her his cell number so she could contact him in case she needed anything before she returned home, “he wanted to make sure I was okay to get home”.
Jaquie, Darren, Luanne and Maryanne are pioneers for this procedure Dave Boreen said to a thunderous clap of hands. Others ask questions regarding the hospital that they say was brand new and modern with very professional staff, “We were patient number 68,69, and 70” getting this treatment, Doctors from the UK were there looking into this”. Luanne says she felt immediate results right on the operating table; her doctor wants to see her and still do followup with her. Rick responds, “Some doctors want to be able to do it here but it’s the system that’s stopping them”.
Doctors are being cautious in Canada because there are many questions unanswered. For instance is there abnormal venous obstruction in all people with MS? How can it be decided who is a candidate for this surgery? And are the benefits long lasting or are they temporary? These four people who have received the treatment say they don’t care, they know they still have MS, this procedure isnt a cure, but regardless of how long it lasts for as long as it does they have gotten a respite from the suffering and pain and most of all they have gotten hope. Hope that perhaps their lives have finally taken a turn for the better after decades of suffering. That lives can be led normally, doing the regular things that most of us take for granted, like walking or feeling our hands and feet, being able to feel the touch of loved ones or hold grandchildren. Being able to see our “brilliant” surroundings, as Darren said so eloquently. Darren says, “They want proof but we’re suffering, time is against us, give people suffering a chance.” It’s not right that MS sufferers have to pay thousands of dollars and travel so many kilometers to gain access to treatment because it’s not available at home.
As a September 16 article from the Globe and Mail reads, “Many Canadian researchers and doctors who treat MS patients are skeptical that the treatment works and that the science behind it is sound. The therapy challenges the conventional wisdom that MS is an auto-immune disorder and proposes that it is instead caused by a blockage in the flow of blood from the brain.
The MS society and the government have taken heat from patients who are angry that they must pay thousands of dollars to obtain the treatment overseas because it’s currently not permitted in Canada.”