Donna Romanuik stands up from her wheelchair and gives husband Chris a hug and kiss before he heads to the starting line alone for Sunday's annual Multiple Sclerosis Walk in Edmonton.

It wasn't supposed to be like this.

Romanuik was supposed to walk the 15 kilometres with him. In fact, that should have been nothing for the woman who a year ago vowed she would run a marathon this summer.

When she said it, Romanuik had just returned from India where she had undergone the controversial "liberation" treatment for her multiple sclerosis, and she was exhilarated by what it had done for her.

The fogginess in her head was gone, and so was the fatigue. Her balance was good. Her mobility, strength and endurance improved.

"She came back and she could walk holding her husband's hand instead of holding on to her husband," remembers longtime friend Pat Semrok, who stops by the tent where Romanuik is volunteering before the run. "She was able to do little things that everybody else takes for granted for being able to do. It was a miracle."

Liberation is an unproven therapy based on the theory of Italian neurologist Dr. Paolo Zamboni that stenosis, a narrowing or blockage of veins in the neck which drain blood from the brain, results in a medical condition known as CCSVI, or chronic cerebrospinal venus insufficiency, which may cause MS symptoms. CCSVI has also been recently linked to Parkinson's disease and ALS.

Removing the blockage - using a procedure similar to balloon angioplasty known as PTA or percutaneous transluminal angioplasty - was found to improve blood flow, which in turn improved balance and walking, while reducing dizziness, fatigue, muscle spasms and incontinence.

The exact cause of MS is unknown, but environmental and genetic factors are suspected. There is no cure, but symptoms can be managed.

PTA does not meet Health Canada's stringent requirements, so dozens of Canadians have spent thousands of dollars to travel to private clinics and hospitals in countries such as India, Poland and Costa Rica to have it done. North Americans can't even get the imaging test here that would tell them for certain if their jugular veins are blocked, because PTA is seen as an invasive procedure with no proven benefit.

In India, Romanuik learned her veins were more than 50-per-cent blocked, making her a candidate for PTA. For six weeks after the procedure, she felt liberated.

I can't explain the feeling of normalcy I had for those six weeks," she says. Then Romanuik's condition began a downward slide, a common experience for most people who have the treatment, judging by the blogs of some patients.

On a scale from zero to 10, if zero was where she was prior to the treatment and 10 is where she was right after it, Romanuik's MS symptoms are now at three, she says, down from a seven a month ago. She's certain the regression means her veins have become blocked again because there was no stent put in to hold them open.

A couple of people at the Multiple Sclerosis Walk who last saw Romanuik getting around with just a cane in the fall are surprised to see her sitting in a wheelchair.

"I expected her to still be walking around with a cane," says one woman before walking away. "It's very sad."

"Honestly, it's just because we took the (train) and I didn't want to walk all that way," the ever-upbeat Romanuik interjects. "I can walk" - though not without something or someone to hold onto.

This doesn't mean liberation is a failure, Romanuik says.

"The way that I felt after the procedure and the things I could do without any effort, without thinking, is undeniable. There's no way it was a placebo effect."

The improvements are captured on a video shot by her husband Chris in India right after the treatment. In the video, she easily hops up on a bed and swings her legs up off the floor. She used to have to think about these movements, and it brings her to tears that she's back to doing them the same way again.

"The truth is, until a proper jugular stent is developed, there's no sense in having your veins opened because they'll just close again," Romanuik says.

Some doctors who do the treatment use stents made for arteries to keep the veins from recollapsing, "but it's not the proper stent, and if it dislodges and goes to my heart, it will kill me," says Romanuik, a 46-year-old mother of three.

A funnel-shaped stent is currently under development, she notes. "If they can design something like that, that would lodge itself in the vein and keep it open, that's the cure, that's going to cure me.

"If my vein had stayed open, I'd be running a marathon right now, I would be walking with Chris in this walk today," she says.

?Many people in the MS community believe in liberation or CCSVI as the "miracle cure." An advocacy group calling itself CCSVI Alberta had a tent in the staging area of the MS run for the first time this year. Here, volunteers dispensed information and collected signatures for a petition asking to have CCSVI testing and treatment made available in Alberta and Canada.

Romanuik and her husband took part in a meeting last year with Alberta Health Minister Gene Zwozdesky, top neurologists and other medical specialists where the minister approved setting up a registry to statistically track Albertans with MS who have had liberation treatment.

Zwozdesky also approved a three-year observational study to monitor the CCSVI research being funded by the provinces of Saskatchewan, Newfoundland and Manitoba.

Romanuik doesn't need any of that to say she would have the treatment again.

"I'd have it done again in a heartbeat, but only if there was a proper stent. I would even be the guinea pig, the first in line." 
 

http://www.leaderpost.com/health/Alberta+woman+getting+worse+months+after+liberation+treatment/4789090/story.html