“Neglible” would not be one of the words Lorraine Cannistra uses to describe the effort and time she has put into her baclofen pump since getting it in April 2012. Cannistra, who has cerebral palsy, held off on the surgery for as long as she could. When the maximum oral dosage of baclofen and botox injections no longer made a difference, she finally decided to go ahead.
“The spasticity associated with my CP was really, really severe and it had gotten worse as I had gotten older,” she says. “It had started to interfere with my ability to function and my ability to transfer well.”
Things didn’t go well from the start.
“I woke up from surgery and couldn’t move well at all,” she recalls. “That lasted for several months. I was worse off after surgery than I was prior to having it. I think what happened is, when the pump was installed there was some damage to the nerves around my spinal cord. I went from being able to transfer independently with a lot of spasms to needing two caregivers to get me in and out of bed — I couldn’t hold my body weight for a while.”
Her three doctors provided little help, and it wasn’t until a physical therapist suggested she might be leaking spinal fluid that things began to improve. She spent six weeks on her back and started to feel better. “After that point [the pump] helped,” she says. “My spasticity was a lot better, but because of the damage to the nerves around my spinal cord I can’t move as well.”
With one problem mostly solved, Cannistra and her doctors focused on finding the right dosage that controlled her spasms while allowing her to benefit from them when possible. In the 14 months since she got the pump, her doctors have increased the amount of baclofen she receives nearly eight-fold. It still isn’t perfect according to Cannistra.
“It takes a whole lot of baclofen to get me at a functional level,” she says. “It’s been a frustrating process to find a balance between what is functional and what’s going to mess me up in terms of side effects.”
This story is an excerpt from “Baclofen Pumps”, an article published in the May-June 2013 edition of Life In Action.
Story from United Spinal Association