Anyone who lives with spasticity can attest to how irritating and uncomfortable spasms can be. Spasms can cause pain, insomnia, and secondary injuries, and they have the ability to ruin any situation. At the same time, for many wheelchair users, maintaining a certain level of spasticity can help with functional abilities and blood pressure maintenance. Being able to cause a spasm at will can help with a complicated transfer or grasping a necessary object. The trick is to find a management routine that maintains the balance you need to live your life to the fullest.
Alex Ghenis knows how difficult it can be to find the right balance. The spasms immediately became a problem when Ghenis suffered an incomplete C5-6 spinal cord injury in 2004. He tried to control them with oral baclofen, the most commonly prescribed spasticity medication, but the dose he needed left him drowsy and unfocused.
After consulting with his doctor and family, Ghenis decided to implant a baclofen pump in 2005. The small rechargeable device infuses liquid baclofen directly into the spinal canal, hitting the nerves head-on. Compared to oral baclofen flowing through your bloodstream, the pump’s consistent, targeted infusions reduced drowsiness and were easier to manage.
The implant dramatically improved Ghenis’ quality of life. “It’s very easy not to have to deal with medications and my muscle tone is excellent and under control,” he wrote in a 2017 New Mobility article. “I can be wide awake during the day while my muscles are calm enough to allow me sleep easily through the night.”
But not everything was positive. His high dosage meant more refills, which led him to increase the size from a 20-milliliter pump to a 40-milliliter one when it came time to replace the pump in 2012. That extra volume proved uncomfortable.
Despite the benefits, after 12 years, Ghenis decided to retire the pump in 2017 rather than downsize and again deal with monthly refills. “Those appointments and hassles were too much,” he says. “So, we declined the infusion and increased my oral baclofen. “When I handled it well, we removed the bomb.”
For seven years he managed on oral medications. Then a pressure ulcer in early 2024 caused back spasms beyond what baclofen, dantrolene and Zanaflex could withstand. Ghenis often sat up at night to calm those rhythmic spasms, but that prevented the sore from healing and caused his sacrum to rupture as well. His physiatrist explained that strong spasms tore the wound tunnel from the inside and caused even more damage. “I told him that after a week I wanted another 20 milliliter pump and that I would take care of the replacements,” says Ghenis, “and he agreed with my choice.” He is currently waiting to receive a new pump.
“I’ve learned that having tone is fine,” Ghenis says, “but I need a way to virtually eliminate the spasms when they are most intense. The bomb has that special sauce. Medications don’t.
Member Tip:
“Receiving my baclofen pump changed my life. I was taking the maximum amount of oral baclofen and was still having severe spasms. Putting on or taking off a jacket was an ordeal. I was even afraid that a particularly loud sneeze would make me fall out of my chair. Also, as a high-level quadriplegic, I had to ask someone to help me take pills four times a day. The pump delivers the medication directly to my spinal cord, so I don’t have to worry about processing as much medication and is infinitely more effective.”
— Daniela Castagnino, Washington, D.C.
United Spinal Resource Center Frequently Asked Questions
I have had my C8 SCI for 10 years and my spasticity is rapidly worsening. I’ve controlled my spasms with a healthy stretching regimen up to this point, but I think I may need something more. What are my options and how should I proceed?
Spasticity is common after a spinal cord injury. However, a sudden increase or change in spasticity may be a sign of an underlying health problem and it is important to contact your healthcare provider immediately for a thorough evaluation to determine the cause. Spasticity is a movement disorder resulting from disruption of communication between the brain, spinal cord, and muscles due to spinal cord injury. Spasticity can be experienced as involuntary muscle movements, increased muscle tension, and overactive reflexes.
Triggers commonly associated with increased spasticity include urinary tract infection, pressure injuries, fractures, constipation and other intestinal complications, and many other irritating stimuli. Treating underlying problems can lead to improvements in spasticity. A sudden change in spasticity is also symptomatic of a syrinx, a fluid-filled cyst in the spinal cord. Although a syrinx after a spinal cord injury is relatively uncommon, it is important to be aware of its symptoms, as a syrinx can affect sensation, movement, bowel and bladder function, and autonomic functions such as blood flow control. blood pressure and sweating.
Spasticity treatment options include non-pharmacological treatments, medication management, and surgical procedures. Nonpharmacological approaches include stretching, weight bearing (e.g., supported standing and walking), properly fitted splints and braces, whole-body vibration, and cyclical activities with or without functional electrical stimulation, among others. If non-pharmacological methods are not effective, your doctor may consider medication management. Medications may include oral medications (such as baclofen) and/or injectables such as botulinum toxin (commonly known as Botox injections or Botox nerve blocks), which treat isolated spasticity of specific muscle groups. Surgical options may be considered if oral medications are ineffective or not tolerated. One example is a surgically implanted intrathecal baclofen pump that delivers spasticity medications directly to the spinal canal, which may help minimize some side effects associated with oral medications.
— Jane Wierbicky, Resource Center SCI Nurse Practitioner
Recommendations from the United Spinal Resource Center
Manage spasticity after spinal cord injury (SCI):
Published by the Model Systems Knowledge Translation Center, this fact sheet is an excellent introduction to spasticity after spinal cord injury, including symptoms, complications, and treatment options.
Finding the right doctor:
A physiatrist experienced in spinal cord injuries can help you manage spasticity. This video from MSKTC describes the role of a physiatrist in caring for a person with SCI:
The best new articles on mobility
Looking for solutions to spasticity:
An in-depth look at all the ways spasms affect the lives of people with a variety of disabilities, including the solutions and alternatives people have developed to help them live their lives.
Spasticity Relief:
Bob Vogel follows troubleshooting steps that can help you identify the cause of increased spasticity.
Say goodbye to the baclofen bomb:
Installing a baclofen pump changed Alex Ghenis’ life (see page 52), but in this blog he explains why he removed it.
Videos
Quadriplegic reality: pros, cons and treatment of spasms:
A personal look at the ins and outs of spasms and how one quad learned to handle his.
Life before and after a baclofen pump:
An interview with a T1 paraplegic about the impact of a baclofen pump.
I’m grateful that my spasticity is relatively mild, but if I’ve learned anything in the 22-plus years since my injury, it’s not to ignore it. If my legs jump, something is happening in or around my body. Do I need to urinate? Are my pants too tight? Have I been hurt in any way? I have a quick list that I go through, so I guess in a way I’m glad I have my spasticity warning system.
—Erin Gildner, Arkansas
Support new mobilityWait! Before exploring other parts of the Internet, consider supporting New Mobility. For more than three decades, New Mobility has published innovative content for active wheelchair users. We share practical advice from wheelchair users across the country, review life-changing technologies, and demand equity in healthcare, travel, and all facets of life. But none of this is cheap, easy or profitable. Your support helps us provide wheelchair users with the resources to build a fulfilling life. |
