Has this technology for spasticity come of age?
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 been through the ringer. 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.
Anna Gilabert’s experience has been wholly positive. “I regained 100 percent of my independence.”
For Some, It is Life-Changing
If you were looking for one of the “miracle” stories Holicky alluded to, you’d be hard pressed to find a better example than Anna Gilabert. Gilabert, who lives in Barcelona, Spain, sustained a T5 injury in 1999. She was well on her way back to independence three months afterward when her spasticity took a dramatic turn for the worse.
“My spasticity started increasing a lot and it became really very, very difficult for me to do everything,” she says. ”I lost my independence.”
Gilabert struggled to drive her car, continually worried about falling and found her favorite pastimes impossible to enjoy.
“I was really scared. I wasn’t scared by my injury, I was scared by my spasticity,” she says. “It was the worst moment. With an injury, you know that if you work hard you can do things, with the spasticity you don’t know.”
Gilabert: back on the court.
After extensive consultation with her doctors and her own independent research, she decided to have the surgery. Doctors explained they would insert a hockey puck-like pump under her skin near her ribcage and connect it to her spinal fluid via a small catheter. The pump would then distribute a controlled dosage directly into her spinal fluid, hopefully controlling her spasms without many of the side effects of oral baclofen (drowsiness, dry mouth). They told her to expect a few months of rehab and fine-tuning of the dosage.
The surgery went well and the recovery went even better. “I didn’t need [two months of rehab] because everything came back so easily,” she says. “It was perfect. I recovered 100 percent of my independence and I felt comfortable. I could lead a normal life. I was happy because it was so difficult with the spasticity. Afterward, when the spasticity disappeared, my injury didn’t seem as difficult.”
Every seven years the pump must be replaced. Gilabert just had her pump replaced for the second time in a “very easy” two night hospital stay. She goes into the hospital for a refill every three months or so, but says the other maintenance has been negligible.
And Others, Not So Much
“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.”
Jenn Wolff, center, required additional surgeries because of the pump, but still chose to keep it.
Writing a graduate thesis is an exhausting process for anyone; doing so on high doses of baclofen and Zanaflex while combatting relentless spasms isn’t the textbook way to make it easier. That’s the situation Jenn Wolff found herself in 2005. Eight years later, she says she barely remembers the experience, thanks to the multiple side effects her oral anti-spasticity cocktail had.
Her doctors suggested a baclofen pump might solve her problems while reducing her side effects. After a successful trial via a spinal tap, Wolff, who was an incomplete paraplegic because of a spinal tumor, decided to go ahead with the pump.
After the mandatory overnight stay following the surgery, Wolff was quickly back in the swing of things. “I don’t even remember the recovery period afterwards because it was so inconsequential,” she says. “Initially [the pump] made a huge difference … Number one, I could concentrate and I wasn’t as sleepy, and it also relaxed my muscles enough that I could retrain them at that time.”
A recurrence of the spinal tumor in 2006 changed Wolff’s functional status from incomplete to complete. With the change, Wolff’s spasticity naturally declined and the pump no longer made as big a difference. Still, Wolff kept the pump (which can be removed). She went in for her seven-year replacement earlier this year. The doctor found that the catheter had broken off, requiring another surgery to insert a new one. While Wolff said the catheter replacement wasn’t too difficult, she got MRSA during the procedure, leading to yet another surgery to clean out the wound.
All of these Baclofen pump users agree that the therapy can have a great impact on even the worst of spasms. “For people who have a lot of spasticity, and it effects their daily life, [the pump] can really make a difference,” Wolff says.
She urges those considering the pump to talk with others who have (or had) one and to find a doctor and a hospital with extensive experience working with the pumps. Cannistra says the same.
“Make sure that you go somewhere where the people who are doing (the surgery) have done it a lot and talk to them about every conceivable problem that could happen — even the ones that are one in a million.”
Gilabert is more encouraging, likely due to her positive experience, but still says she would caution anyone who asks her whether they should get a pump. “I would tell them this is a reversible therapy. In the worst case, if it doesn’t work or if you have problems, you can take it out,” she says.
Richard Holicky has mixed feelings about the pump. When it worked, it was great; when it didn’t, it created new problems.
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.
The four users’ enthusiasm for the pump usually mirrored its effectiveness for each of them, ranging from Gilabert’s near-universal endorsement to Holicky’s mixture of frustration and appreciation.
Like many technological advances aimed at helping people with SCI/D, the baclofen pump has the potential to dramatically improve an individual’s life, but it comes with some risk. Whether it makes sense for you is something only you can decide.