Anyone who lives with spasticity can testify to just how irritating and inconvenient spasms can be. Spasms can cause pain, insomnia and secondary injuries, and have a knack for ruining any situation. At the same time, for many wheelchair users, maintaining a certain level of spasticity can help with functional abilities and maintaining blood pressure. Being able to trigger a spasm at will can help with a tricky transfer or grabbing a needed item. The trick is finding a management routine that maintains the balance you need to live your life to the fullest.
Alex Ghenis knows how difficult finding the right balance can be. Spasms immediately became a problem when Ghenis sustained a C5-6 incomplete SCI in 2004. He tried managing them with oral baclofen — the most-prescribed spasticity drug — but the dosage he needed left him drowsy and unfocused.
After conferring with his doctor and family, Ghenis decided to have a baclofen pump implanted in 2005. The small, refillable device infuses liquid baclofen directly into the spinal canal, hitting nerves head-on. Compared to oral baclofen flowing through his bloodstream, the pump’s targeted, steady infusions reduced drowsiness and were easier to manage.
The implant dramatically improved Ghenis’ quality of life. “It’s super-easy not having to deal with medication, and my muscle tone is great and under control,” he wrote in a 2017 New Mobility article. “I can be wide awake during the day while my muscles are mellow enough to let me easily sleep through the night.”
But it wasn’t all positive. His high dosage meant more refills, leading him to upsize from a 20-milliliter to a 40-milliliter pump when the time came for a replacement pump in 2012. That extra bulk proved uncomfortable.
Despite the benefits, after 12 years, Ghenis decided to remove the pump in 2017 instead of downsizing and dealing with monthly refills again. “Those appointments and discomfort were just too much,” he says. “So, we turned down the infusion and increased my oral baclofen. When I handled it fine, we removed the pump.”
For seven years he managed with oral meds. Then a pressure sore in early 2024 triggered back-spasms beyond what baclofen, dantrolene and Zanaflex could handle. Ghenis often sat up at night to calm those rhythmic spasms, but that kept the sore from healing and made his sacrum break down too. His physiatrist explained that strong spasms tore at his wound tunnel from the inside, doing even more damage. “I told him, within a week I wanted another 20-milliliter pump and would deal with refills,” Ghenis says, “and he agreed with my choice.” He is currently waiting to get a new pump.
“I’ve learned that having tone is fine,” Ghenis says, “but I need a way to virtually eliminate spasms when they are fighting hardest. The pump has that special sauce. Meds don’t.”
Member Tip:
“Getting my baclofen pump was life-changing. I was on the maximum amount of oral baclofen and still had bad spasms. Putting on or taking off a jacket was an ordeal. I was even afraid that a particularly strong sneeze might knock me out of my chair. Plus, 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 into my spinal cord so I don’t have to be worried about processing so much medication, and it’s infinitely more effective.”
— Daniela Castagnino, Washington, D.C.
United Spinal Resource Center’s Most Frequently Asked Question
I’m 10 years into my C8 SCI and my spasticity is rapidly getting worse. I’ve managed my spasms with a healthy regimen of stretching to this point, but think I may need something more. What are my options and how should I proceed?
Spasticity is common after spinal cord injury. However, a sudden increase or change in spasticity can be a sign of an underlying health issue and it’s important to contact your health care provider right away for a thorough evaluation to determine the cause. Spasticity is a movement disorder resulting from disrupted communication between the brain, spinal cord, and muscles due to the injury of the spinal cord. Spasticity can be experienced as involuntary muscle movements, increased muscle tightness and overactive reflexes.
Triggers commonly associated with increased spasticity include urinary tract infection, pressure injuries, fractures, constipation and other bowel complications, and many other irritating stimuli. Management of underlying issues may lead to improvements in spasticity. A sudden change in spasticity is also symptomatic of a syrinx, a fluid-filled cyst in the spinal cord. Though a syrinx after SCI is relatively uncommon, it’s important to be aware of its symptoms since a syrinx can affect sensation, movement, bowel and bladder function, and autonomic functions such as blood pressure control and sweating. Spasticity treatment options include nonpharmacological treatments, medication management, and surgical procedures. Nonpharmacological approaches include stretching, weight bearing (such as through supported standing and walking), appropriately fitted splints and braces, whole body vibration, and cyclic activities with or without functional electrical stimulation, among others. If nonpharmacological 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 both treat spasticity isolated to 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 medication directly to the spinal canal, which may help minimize some side effects associated with oral medications.
— Jane Wierbicky, Resource Center SCI Nurse Specialist
United Spinal Resource Center Recommendations
Manage Spasticity After Spinal Cord Injury (SCI):Published by the Model Systems Knowledge Translation Center, this factsheet is a great primer on spasticity after SCI, including symptoms, complications and treatment options.
Finding the Right Doctor: A physiatrist with SCI experience can help you manage spasticity. This MSKTC video describes the role of a physiatrist in the care of someone with SCI:
Best New Mobility Articles
Searching for Solutions to Spasticity: An in-depth look at all the ways that spasms affect the lives of people with an array of disabilities, including the solutions and work-arounds people have developed to help them live their lives.
Spasticity Relief: Bob Vogel works through the problem-solving steps that can help you pinpoint the cause of an increase in spasticity.
Saying Goodbye to the Baclofen Pump: Getting a baclofen pump installed was a life-changer for Alex Ghenis (see page 52), but in this blog he explains why he had it removed.
Videos
Quadriplegic Reality: Pros, Cons and Treatment of Spasms: A personal look at the pros and cons of spasms, and how one quad learned to manage his.
Life Before and After a Baclofen Pump: An interview with a T1 paraplegic about the impact of a baclofen pump.
I feel grateful that my spasticity is relatively mild, but if I’ve learned anything in the 22-plus years since my injury, it’s to not ignore it. If my legs are jumping, there is something going on in or around my body. Do I need to pee? Are my pants too tight? Have I hurt myself in some way? I have a quick list I run through — so I guess in a way, I’m glad that I have my spasticity warning system.
— Erin Gildner, Arkansas
Comments