Richard Holicky knew there were serious risks involved with having a baclofen pump surgically implanted, but he had also heard the “miracle” stories from recipients who said the pump had all but saved their lives by controlling their spasticity. He held out as long as he could, but as his spasms grew more and more physically and emotionally exhausting, he finally decided to have the surgery. That was November 2009.
In the three and a half years since then, Holicky, a walking quad, has had a difficult journey. The catheter through which the pump delivers the baclofen into his spinal fluid has failed twice, requiring two surgeries to fix it and an additional laminectomy to make more room around his spine. Then last August he developed a spinal fluid leak that required another surgery. On top of all that, he suffered a stroke.
Yet when asked if he would have had the pump implanted if he could do the whole thing over again, he hesitated. “Knowing what I know now, it’d be really hard [to make the same choice],” he says. “I must say, when it worked it was great. It really made life simpler again and easier and more inviting.”
Holicky’s hesitation and the risk-reward tradeoff he faced are perfect examples of the difficult decision facing people considering a baclofen pump. The 20-year-old technology is not a miracle, but it can have a huge impact on your life — the big question is whether it will be positive or negative.
So why hasn’t Holicky taken his pump out?
“I thought long and hard about it, but when it works, it really simplifies life,” he explains. “I’ve got fairly strong spasms that get in the way of function at times … I enjoyed the calming effect that the pump had when it worked because I was able to find something very close to a sweet spot where the spasms were under control but the medication wasn’t too great to take away some of the function I had.”
Yet nearly four years after receiving the pump, Holicky laments that “there is not much of a sweet spot anymore.” Now he faces more difficult decisions with bigger tradeoffs, like more trunk control or less spasms. What would he say to a prospective pump recipient?
“I’d tell them to think long and hard about it and to explore as many alternative options as possible,” he says.
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