Holding on to hope
Barb Farrell is lying on a hospital bed at Royal Victoria Hospital in Barrie, clinging to hope. And her husband, Patrick, says he'll do everything he can to get the help that has, so far, eluded her.
The 46-year-old mother of a 10-year-old boy has multiple sclerosis. A test at Barrie Vascular Imaging earlier this year determined she had a blockage in her jugular vein, a condition recently coined as chronic cerebro-spinal venous insufficiency (CCSVI).
Barrie vascular surgeon Dr. Sandy McDonald had six other MS patients identified with the same problem undergo vascular angioplasty conducted by a radiologist. It's a common treatment used on heart patients and not considered intrusive.
The procedure opens the vein, allowing the blood to flow from the brain normally. McDonald said he saw improvement in all six patients, four of them dramatic.
Ten days ago he testified at a parliamentary subcommittee with two of his Barrie patients, in an attempt to have the procedure made readily available to people with CCSVI on compassionate grounds.
He has the support of Barrie MP Patrick Brown and Barrie MPP Aileen Carroll, but none of the provinces have permitted the procedure for MS patients.
MS historically has been identified as a neurological disorder that progressively takes its toll on the body, slowly rendering its parts unusable.
Eventually, the limbs go and the systems shut down.
Farrell was to undergo the procedure April 22 in hopes that her symptoms would be held at bay. But just two days before it was to happen, it was cancelled.
McDonald was no longer permitted to treat patients with MS. Although his imaging clinic has identified the condition in close to 300 MS patients, none beyond the first six, have been allowed to undergo angioplasty at home.
"I was told I wasn't going to do anymore," he said. "They're just saying you can't do them."
The procedure isn't available to MS patients anywhere in the country, it is considered novel and not proven for MS patients identified with CCSVI.
Although it continues to be readily available to heart patients.
The angioplasty didn't happen and her condition quickly became worse. Instead, she underwent another procedure. A feeding tube was inserted because she has trouble swallowing.
Already in a wheelchair, Farrell lost just about all of her ability to move and she developed a severe bed sore.
She gets morphine hourly for the pain.
"Her ability to speak is almost nullified," says her husband, Patrick.
"And my breathing...," she says in a barely audible whisper.
"Her condition has gotten that much worse, and that's my problem," says her concerned husband.
Just maybe, he says, if he pushes hard enough, Barb will be the one to have the procedure done legitimately for compassionate reasons.
But she can't wait.
It's unclear what kind of an impact angioplasty would have. It doesn't reverse the condition, it just stops it from getting worse. But those who have undergone the procedure, both here at home in Barrie, and at test facilities in the United States, said they did see improvements.
As she patiently waits, the wheels are in motion.
Dr. McDonald spent the past week in Italy working with Dr. Paolo Zamboni. It was Zamboni who told the world last September about his discovery of the blockage in the jugular vein of patients diagnosed with MS, including his wife.
This is McDonald's second trip to Italy to work with Zamboni, ensuring those working with CCSVI patients are using a universal protocol.
Three of his staff members were with him. Two Barrie technicians were undergoing training to conduct the diagnostic testing. A third, who had made the training trip to Italy earlier, was summoned to join them to assist with the training. They're all coming home this weekend.
McDonald was to continue onto Bulgaria. He says, in the absence of having the procedure done at home, patients with CCSVI are travelling abroad to access it. Bulgaria is one of those places.
McDonald said if people from Canada have to go elsewhere, he wants to see what it is that they're getting.
But, having been in hospital for a month now, Barb Farrell isn't able to travel.
She has just one hope: that McDonald is given the go-ahead to treat her.
Her husband vows he won't give up.
"He's good with a fight," she says.