POWASSAN – Kimberly Cooper is one of many Canadians with multiple sclerosis to leave the country for a reprieve from debilitating
symptoms through a controversial treatment.

Chronic cerebro-spinal venous insufficiency (CCSVI) treatment is in its infancy. It is in the testing stages in Canada however, the
procedure is available in many other countries.

For Cooper her journey began on Oct. 9 when she and her husband Rob boarded a flight to Costa Rica and it was Thanksgiving Day, Oct.
11, that she had the procedure that would change her life.

Cooper, a mother of two, had what some are calling a controversial procedure to tackle the symptoms of multiple sclerosis.

“It was just angioplasty,” she said. “The only blockage that they found was in my right jugular.”

The surgery was a success.

“I had said all the right things before I left by managing my expectations. ‘I don’t expect a lot. If it works it works, if not, okay.’ So
I had said all the right things before I left, but I think in the back of my

mind I said, ‘I’m going to be the one,’” she said. “I’m going to be the one who

wakes up and everything is going to be perfect. Like it was before.”

She woke up after surgery and some of her expectations had been met, others, she woefully admits were not – at first.

Her feet were the first breakthrough after her surgery.

“I was just coming out of the anesthesia. I was up in my room and I was cold when I came back so the nurses were tucking the blankets in
and putting sheets under my feet,” she said. “I started moving my feet around…

I said, ‘I can feel my feet. My feet feel like normal.’”

However, progression slowed. There was nothing for two days.

“The first three days I kind of went into a funk. I knew things had changed. I could feel my feet, which I hadn’t felt in three years,”
she said. “They weren’t burning. They weren’t cold. But it wasn’t enough for

me.”

However, this was only the beginning.

On day three Cooper had a burst of energy – something that the MS had stolen from her.

“I jumped out of bed,” she said. “I couldn’t wait to go to physio. When I was done the hour I didn’t think they had worked me hard enough
… my energy level was just unbelievable.”

Cooper’s multiple sclerosis had her chained from travelling distances. She had lost bladder control and used a catheter.

“Until day four. We went to the rain forest and did the aerial tram over the trees and it was all wonderful and fantastic and it was beautiful,”
she said. “We were coming back and we got stuck in a traffic jam, and not an

Ontario traffic jam, but three-and-a-half hours on the side of a mountain. No

stores, no restaurants, nothing but mountaintop and bush.”

For three-and-a-half hours they sat bumper-to-bumper and it was then she realized that her bladder issues had stopped.

“It was just unbelievable. I wouldn’t have before been able to sit in the car stationary for 45 minutes and I would have been bouncing and
jumping around,” she said.

Before Cooper’s surgery her jugular vein was 80 per cent closed.

“They blew one balloon up in the vein and then they deflate the balloon and they see how much blood is flowing from there,” she said.

The doctor, Guillerma Guevara of the Hospital Clinica Biblica in San Jose, was not pleased by the amount of blood flowing so he went in with
a second balloon.

“He blew up the second balloon and everything started flowing,” said Cooper. “They just enlarge it and pull it back up.”

She was in the hospital for a little more than 24 hours but the procedure took about 45 minutes. She remained in Costa Rica for two weeks
where she endured poolside physiotherapy and took in the sights.

“I thought I was fine. I knew my endurance wasn’t good, I couldn’t do anything for very long and I couldn’t walk very far because my feet
would go to sleep and I would stumble and trip,” said Cooper. “That first

session was a huge eye-opener for me.”

Cooper has an elliptical trainer, exercise bike, steps and a pilates ball at home to help with her recovery.

She says there are no guarantees with the procedure. She is aware that the vein could collapse or, she could continue to get better and
live symptom free.

Cooper may have won this battle, only time will tell. However, there is another battle that she will continue to fight. She continues
to advocate for the procedure to happen on Canadian soil.

“Before I left I was mad and I was angry that we couldn’t get this here,” she said. “Then we got back home. It was a different kind of
frustration because now I know how easy it was and how quickly I recovered.”

She says this procedure could have been done in three hours in the hospital.

“Now I’m frustrated and angry because I’ve had it done and it’s so easy. I just don’t understand why (she had to leave the country and pay
out of pocket),” she said. “We invested right and we could afford it.”

The procedure, physiotherapy, hotel package and 24-hour hospital stay was $12,900.

The four doctors at the Hospital Clinica Biblica perform this procedure on 60 patients per month.

She says she welcomes emails from people seeking information.

“I’m not advocating that anyone go to this particular place or that they travel for any of it, but for the ones that want information I’m
passing it on,” she said. “Then I’m going to start my letter writing. I’ve

started putting something together and sending it out the all the people that I

sent it out to before I left saying, ‘Why can’t we do this?’”

Her appeal to date has included Nipissing MPP Monique Smith, Ontario Minister of Health Deb Matthews, Federal Health Minister Leona
Aglukkaq, Nipissing MP Anthony Rota,

“The only response I got was from Monique (Smith). She took my letter and forwarded it on to Deb Matthews,” said Cooper. “Then I got a
standard form letter from Deb Matthews.”

She is not hopeful that a letter writing campaign will be successful.

“They say the safety of it is not proven and there is no link proven but how can you argue with all these people coming back?” she said.
“Somebody’s got to listen and see that it’s not all placebo, which is what

they’re chalking it up to be.”

Her father, Powassan coun. Roger Glabb, has joined his daughter in advocating for the treatment to occur in Canada.

Glabb is prepared to use his position on council to appeal for the cause at the Good Road’s conference in Toronto in February.

“At that time I’m going to ask for a personal delegation with the Minister of Health to see if they can get me my 15 minutes so I can
talk to her face to face,” he said. “My approach is that I have a family member

that has gone through the procedure and they have come back happy …”

He says it may not be a cure but if they can stop the progression then that, in itself, is a win.

“It’s time that Canada steps up to the plate,” he said.

“There’s a lot of talk about clinical trials and the MS Society has contributed so many million dollars to testing but I don’t see a
treatment arm with it,” said Cooper.

She says the focus on testing is a good place to start but it’s not enough.

“Once you find the flow problem, the next step, to find out why, is the catheter with the balloon and while you’re in there you blow it up
and you’re done,” said Cooper.

“Somewhere along the line Canada has to become a little more progressive,” said Glabb. “Right now Canada is starting to appear like a third
world country when it comes to this type of procedure and here were are sending

people to third world countries to have them pay through the nose and for a lot

of these places the economic benefit is tremendous if you take 5,000 procedures

at $15,000 each it’s a multimillion dollar business.”