Alex Ghenis, who lives with quadriplegia, is California-based journalist who writes on disability issues related to environmental justice, economic empowerment and employment. In this recent article for New Mobility Magazine, Ghenis shares how he’s dealt with spasms after spinal cord injury.
I often have to pause my life for a minute — whether that’s driving down the sidewalk, using my laptop, or eating a meal — until they go away. A dozen years ago, I chose a baclofen pump as my spasm solution and now I’m working to take it out. Here is my journey.
I broke my neck 13 years ago, in my teenage years, and back then my spasms were horrendous. My parents remember it better than me, telling stories of my legs bouncing all over the place, whether I was in my chair or my bed. We went to the doctor to figure out if there was a way to make the spasms stop and were given baclofen pills, the anti-spasm med that’s the go-to for most people with spinal cord injuries. Although the doses were high — fresh after a spinal cord injury, the spasms tend to be pretty bad — they kept things under control enough for me to stay in my chair and flat in my bed.
There was a side-effect, though: drowsiness. I was falling asleep in class and having trouble keeping up with school. I wasn’t energetic around my friends, despite my prior hyper-ridiculousness. My parents and I knew that things couldn’t go on this way forever, so we went back to my doctor.
Luckily, the doctor had one more recommendation. He told us about the baclofen pump — an implant about the size of an Altoid’s tin that pushes liquid baclofen through a tube and straight into the spinal canal. By hitting the nerves head-on, it calms spasms but keeps the drowsiness away. It also allows for a controlled infusion of medicine so that I would never have to worry about missing a dose or taking a bit too much. The baclofen pump sounded like a bizarre alternative (having medical equipment installed in flesh is always funky), but definitely an option considering my situation.
The question was: should I go for a medical implant at age 16 that would lock me into a reliance on the pump for years? The battery life lasts for over five years, so there would be regular surgeries into the future. I’d have to go into the doctor to refill the liquid medication once every month or two, and the cost of those refills would be tough if there was ever some insurance debacle.
After some conversation between me and my parents, we decided to go for it. The surgery was actually pretty simple, and I only had to be in the hospital for a few days. After that, we slowly went up on the medication. Within a few weeks, my muscles were mellow and I was wide awake. It was a life changer — and has been ever since.
From Baclofen Pump to Pills
Having a pump has been great for the past decade or so. It’s super-easy not having to deal with medication, and my muscle tone is great and under control. I can be wide-awake during the day while my muscles are mellow enough to let me easily sleep through the night. The refills are a bit funky and I do have to keep track of the doctors’ appointments, but it’s no worse than staying on top of prescriptions. I had one malfunction a few years ago that we took care of easily, and otherwise my other replacement was an outpatient surgery.
Recently, though, I’ve wanted to go off the pump and back onto oral meds. Why? Well, it’s a bit uncomfortable to have an implanted device — and I’m concerned about acquiring refills in the future, especially with my paranoia about stable medical care (damn you, Washington!). I made the decision about nine months ago to start weaning off the meds, talked to my doctor, and started the process.
Coming down off a baclofen pump is no easy deal. Just like any other depressant, you can’t just go cold-turkey without your body going wacky. I go in every couple of weeks for a small adjustment using a little remote pressed up against my belly that slows down the fluid rate in units measured in micrograms per day. Nine months later, I’m almost all the way off, with just another month to go. Once things move down to zero, it’ll be one more simple surgery to pull the pump out and I’ll be back on oral meds once more.
I can’t say it hasn’t been a bit tough. Near the end here, some of the adjustments have led to spastic withdrawals that are difficult to deal with, as the closer you get to zero, the nastier each withdrawal becomes. We recently hit a speed bump where the pump could only go so slow, so we had to go to a lower concentration of fluid for the last little bit. And I’ve started figuring out how to manage oral medication to keep things under control.
I’ve made the commitment to go off the pump — but I can’t help but ask, is it a good idea? I sure hope so, since once the thing gets taken out, that’s pretty much it. Like most of life’s choices, it’s a balance of positives and negatives. In the end, I feel comfortable that things will turn out for the better.
And if they don’t, well … I’ll be spastic enough to kick myself over making the wrong choice.