WATERLOO REGION — The local MS Society chapter is pleased the province is forming an expert panel to provide advice on followup care for patients who travel out of the country for an experimental treatment.

“That’s fabulous news,” said Susan St. John, executive director of the Waterloo District Chapter of the MS Society of Canada.

“I’m so delighted that they’ve set up the advisory group.”

The Ontario government announced on Tuesday it is establishing an expert advisory group to develop guidelines and provide recommendations on followup care and treatment for multiple sclerosis patients who return to Ontario after having experimental chronic cerebrospinal venous insufficiency (CCSVI) procedure outside of Canada.

Members of the physician panel include directors from hospitals across Ontario specializing in MS, neurology and cardiology, and health research centres.

A new theory proposes that narrowed or blocked veins cause MS symptoms and a surgical procedure to open those veins will relieve the debilitating symptoms.

Many Canadians have travelled to other countries for the procedure, which involves inserting a long plastic tube with an inflatable balloon to open affected veins. Stents may also be used to support the newly opened vein.

Seven studies are underway in Canada funded by the MS Society and the United States to examine the possible link between MS and venous blockages. The procedure is not covered in Canada because there’s not sufficient evidence it’s safe and effective.

St. John said the MS Society has been lobbying the province to create guidelines for followup care knowing there is the perception patients returning home are not getting the care needed.

“Our work has paid off. I’m so excited,” St. John said.

“It’s been perceived within the Canadian medical community that aftercare was a problem.”

And that’s not just following the MS treatment, she said, but any other medical procedure done out-of-country.

However, the perception is different from the reality.

“That actually hasn’t been the case,” St. John said. “We’re not sure where the notion came from that people were being turned away.”

She has heard stories of people who feel they didn’t get adequate care when returning home, although not from anyone local who had the procedure. People have died after having venous angioplasty, also prompting concerns about aftercare.

“People are in a state of confusion and misunderstanding in an arena that is very critical and important,” St. John said.

She hopes the new advisory group will clear up misunderstandings about care being provided in the province to patients who travel to other countries for the procedure, as well as clarify what treatment should follow.

“I’m sure that’s what they’re aiming to do,” St. John said.

The province will also support the federal government if it moves to create a national registry for patients with MS.

http://www.therecord.com/news/local/article/494947--province-to-examine-aftercare-for-experimental-ms-treatment