The room is packed.

Nurses, home care workers, politicians, media and people suffering from Multiple Sclerosis (MS) — some in wheelchairs — have shown up to hear about chronic cerebro-spinal venous insufficiency (CCSVI) treatment, currently banned in Canada.

Among the crowd is Cochrane’s Lesley Hegland, a member of CCSVI Calgary who received the treatment after travelling to Poland.

“The room was full of energy,” said Hegland about the July 28 meeting.

She said many people in the MS community want to see CCSVI treatment available now even though two Canadian deaths have been connected to the procedure — including one Calgarian woman who died July in California.

“People don’t know where to turn,” Hegland said about the debilitating disease. “Their own neurologists won’t help them.”

According to Multiple Sclerosis Society of Canada, MS is a complex disease most often diagnosed in young adults, aged 15 to 40, and that it is unpredictable — affecting vision, hearing, memory, balance and mobility.

There is no cure.

It has been said to be an auto-immune disease, but Hegland said new information is pointing to issues caused by narrowing veins that reduce blood flow to the brain — which the CCSVI treatment is meant to treat by unblocking the veins.

“That’s why the brain gets foggy,” said Hegland. “And it’s horrible. You just can’t remember, and you can’t feel your feet.”

While she is sure MS has affected her for much longer, Hegland was diagnosed with the disease from scans dating back to 1992.

Like many before her, there were not many options for treatment.

The Cochrane community banded together last October to help raise some money for her treatment and travelling costs.

Overall, Hegland said it cost her more than $12,000 to travel to Poland for CCSVI treatment but it was worth it.

“It was like a fog being lifted,” she said.

Hegland is skeptical recent announcements by the Alberta and Canadian governments for observation trials on patients who received the CCSVI treatment and clinical trials will actually bring about regulation changes and it could take years.

“We want this done,” said Hegland. “It’s discrimination.”

Tim Donovan agrees.

Also inflicted with MS, Donovan was bed-ridden for seven years. Now he can stand and walk after receiving the CCSVI treatment.

“They can’t tell me this doesn’t work,” he told the crowd July 28.

The Fredericton Junction, N.B., man has been touring Canada spreading the word under the banner New Hope for Multiple Sclerosis, and he was well received in Calgary.

He took a poll of the room on how many have improved health — out of 16 people with MS, nine saw remarkable change, four saw positive change and three had no change.

Donovan said even though some people do not receive any benefits, and others can’t have the operation completed, the argument that the surgery is unsafe is confusing.

Donovan asked how many people knew someone or had a coronary bypass themselves — and many hands in the audience went up.

He pointed out while many people have survived because of this surgery, his father passed away from complications after his bypass.

Donovan said deaths happen with many surgeries and are tragic, but the procedure has improved the lives of many.

“And how many people have survived?” he asked.

One of those survivors is Dr. Bill Code, who was diagnosed with MS along with his sister.

Instead of giving up, Code wanted to look into the disease and is now the director of medical research for the National CCSVI Society.

He has had the CCSVI treatment — formally known as the “Liberation treatment,” a term that he said has scared the medical community. The process is essentially an angioplasty, or the technique of mechanically widening a narrowed or obstructed blood vessel, for the veins. Code said doctors are doing angioplasties every day.

It’s something the CCSVI movement is trying to bring to the forefront. Hegland hopes to attend another rally in Edmonton Aug. 20 that will host the Calgary, Grande Prairie and Edmonton chapters.

For details, check out ccsvicalgary.org.

http://www.cochraneeagle.com/2011/08/multiple-sclerosis-patients-look-for-support/