After years of living with nerve pain — an unbearable burning sensation running up and down her arms — Lilly Cadeau feels some relief.
The 24-year-old Washago woman suffers from primary-progressive multiple sclerosis and recently returned from Costa Rica where she received the controversial chronic cerebrospinal venous insufficiency treatment (CCSVI,) also known as the liberation therapy.
“I have really bad nerve pain in my arm and it has lessened. It’s not as bad. In time, that can even go away completely,” Cadeau said. “I’ve been able to get rid of my anti-fatigue pills completely. I have two different kinds, so that’s two less medications I’m taking.”
But the procedure isn’t everything she hoped it would be. After hearing stories of Canadians travelling to far-off countries for the surgery and coming back with immediate, life-changing results, Cadeau was hoping for the same.
“We only hear about the cases that work right away. Normally it takes people a couple months before they feel improvement and physio is supposed to be a big part of it,” she said. “I would say (I feel) the same. I expected more, but it doesn’t happen that way. I thought it was going to make me feel different, make it easier to walk or something. Now I know that it’s just the physio I need to keep doing.”
Cadeau had the balloon angioplasty procedure piloted by Italian doctor Paolo Zamboni, which opens up vein blockages in the body, on Aug. 4.
By Aug. 11, after undergoing numerous physiotherapy sessions in Costa Rica, she didn’t feel any change.
“By then, you’re supposed to feel improvements, whether it’s really, really small, but I didn’t really notice any improvements,” she said, adding that of the 10 other MS patients she met undergoing the procedure in Costa Rica, only three noticed immediate results.
Her doctor, Marcial Fallas, asked if Cadeau would stay longer and let him perform the procedure again and she agreed, even though it would mean an extra night at the hospital and a charge for delaying her flight on top of the original $20,000 expense for the trip and procedure. She returned to Washago on Aug. 17.
Cadeau has yet to feel drastic improvements aside from the subsiding nerve pain in her arms, but she is optimistic that with the help of physiotherapy, she will notice a change in the next few months.
“I feel like when they did the procedure, they reset everything so I have to strengthen my muscles over again. The physio is critical. That’s going to do a lot I think. It’s like they took away all your balance and all your strength and (you have to) start over,” she said.
Although the liberation therapy wasn’t an instant remedy, Cadeau said she would still recommend it to Canadians suffering with MS.
“Definitely, it could work a lot. It could make a dramatic difference…” she said. “If they have the money and they can’t decide on a place to go, I would say Costa Rica. It’s great. It’s probably the most beautiful place I have been.”
Praying for you Lilly to continue to heal! Thanks so much for posting your experience – we need to hear about all levels of improvement or lack there of. Dont give up, all us MSers are rooting for you!