There are many manifestations of spinal cord injury (SCI), so many that seating and wheeled mobility professionals may focus on the most obvious ones: paralysis and loss of sensation.

But for so many wheelchair users, the impact of SCI doesn’t end there. Those “other” manifestations can have a profound impact on the success of a seating and mobility system, and the consumer’s resulting independence.

Secondary Complications of SCI

Curtis Merring, OTR/L, MOT, a clinical education manager for Permobil, has worked extensively with SCI clients.

“The most common secondary effects from SCI regarding seating and mobility are probably pressure ulcers, pain/comfort, and spasticity,” he said. “Most of the time I’m working with SCI clients with seating and mobility needs, we are working on those issues.”

Jennith Bernstein, PT, DPT, ATP, a clinical education manager for Permobil, worked with SCI clients at Shepherd Center in Atlanta for more than a decade.

“As a seating clinic therapist, you’re looking for a history of pressure injury,” she said. “The secondary effects of what a pressure injury does are causing someone to be out of their wheelchair and removed from participating in activities, and the complications of bedrest. And you have to think about what it’s doing to the skin integrity and the loading structure. So pressure injury is one of the biggest things that you start thinking about — and what equipment you want to use for that.”

She added, “Postural changes I definitely see as a complication of a spinal cord injury. You always are doing a thorough evaluation for that. You want to perpetually stay on top of any changes that you can observe, that you can objectively measure, or that you can subjectively get from the patient’s report. It’s a constant evaluation and re-evaluation. You’re always following up on all the body systems that could potentially have a complication after spinal cord injury: bowel, bladder, orthopaedic, neurologic.”

Complication #1: Pressure Injuries

Understandably, pressure injuries are a concern for clients who have difficulty repositioning themselves and/or cannot discern when their bodies need to be repositioned.

“Pressure ulcers are always in the forefront of everyone’s mind, both therapist and patient,” Merring said. “Our bodies were not meant to sit all day, so for those who are dependent upon a sitting position for mobility, it’s crucial to dial the seat in so that it provides the right kind of support as much as possible.”

A past pressure injury, even one that has healed, is important to consider, Bernstein said.

“It still influences the amount of healthy loading tissue that somebody has to redistribute the weight,” she explained. “A lot of people who had to have debridement or surgeries don’t even know what tissues have been removed. They don’t know if they’ve had osteotomies that have removed part of the bony pelvis. That is a huge influence to a seating clinic therapist: You’re looking at the sitting surface and maybe, for example, you’re using a pressure imaging system. You see there’s no pressure on one side or in one location. It could be that [the client] had bone removed from that area, so the overall pressure distribution is completely different than what you would see in an intact pelvis.”

“The literature definitely shows us that a person who’s broken down once is at an even higher risk to break down in the future,” Merring said, “whether it’s over a different area or the same one. Tissue that heals is [only] a certain percentage of full. Once you have a pressure injury, it never gets back to 100 percent.”

Therefore, a full understanding of the pressure injury is critical. “I want to know where it was,” Merring said, “I want to know if you haven’t had these issues in the last five years, what have you done to not have these issues? I’m going to probably replicate that as much as possible.”

Complication #2: Postural Changes

While SCI isn’t progressive, some complications can be. That includes postural changes.

“Postural changes can occur as a result of many different things,” Bernstein said. “It can be as a result of muscle spasticity, it could be a result of an incomplete spinal cord injury where you have one side of your body that’s stronger than the other, it could be due to surgical stabilization — that would be a non-flexible postural impairment. It could even be due to soft tissue damage. Or some people have heterotopic ossification, causing bone growth within the soft tissue that will push someone to one side or the other if it occurs in the hip joint.

“For people with SCI, [postural changes] definitely occur if someone has a muscular imbalance, where one side is stronger than the other, or more muscles are active on one side than the other. Weaker muscles lengthen and stronger muscles shorten. If you don’t have a balance around the joint, the stronger muscle is always going to win.”

Even supposed interventions can cause postural changes, Bernstein said: “I’ve seen postural changes from in-dwelling medical devices like diaphragm pacers or Baclofen pumps.”

Complication #3: Pain & Discomfort

Postural changes can also be a reaction to pain. While it might seem obvious that pain would be a priority for any client suffering through it, Merring said that’s not always so.

“If the [wheelchair] is not working and pain is involved, you’re definitely going to know,” he said. “It’s going to be one of the first things that they’re going to tell you. But if a device improves a person’s mobility and [the client] has pain, it’s really important for clinicians and ATPs to know that a lot of times, clients will not report it. Or they won’t report the pain with the same severity. It’s like they’re thinking, ‘At least I have mobility, so I’m going to just deal with the pain.’ That has actually been supported with evidence and research, that they will choose mobility over pain and comfort.”

Adding to the puzzle are the different types of pain SCI clients can experience.

“People with spinal cord injury can have pain in different ways,” Bernstein said. “In an orthopaedic joint sense, where they have sensation. But also neuropathic pain, where they may not have full sensation or have absent sensation, but they still have pain. People will come in and say, ‘My butt hurts.’ You say, ‘Where does it hurt? How does it hurt? When does it hurt?’ And they say, ‘I don’t know, I don’t really have sensation on my butt, but it just hurts.’ Is it aching, is it stabbing? ‘I have no idea.’ They’re getting these sensations they can’t really describe.”

Complication #4: Spasticity

Spasticity can be another fluctuating SCI complication.

“Spasticity is a common complication,” Merring said. “My mentor and neuro professor in college always called it ‘reflexes gone wild.’

“You know when you go to the doctor and they hit your knee and it kicks forward? Those reflexes are modulated by the brain. When you have a spinal cord injury, you no longer have that modulation. You no longer have the ability to stop those reflexes from going wild. And [spasticity] just depends on where they’re injured and how severely they’re injured. Anybody with an upper motor neuron injury, T10 and above, I think the statistic is 60 to 80 percent of people will have some sort of spasticity that affects their ADLs [activities of daily living]. So it’s a high incidence.”

A number of circumstances can exacerbate spasticity.

“If you had a stressful day, if it is cold outside, if you missed your meds, if you didn’t eat right — spasticity is a physiological reaction and representation of what’s going on internally and your body wanting to express that,” Merring said. “Not only is that going to change throughout the hours of the day, but it’s also going to change whether a storm is coming, or it’s colder or hotter, or if you had a stressful day at work. All these things have an effect on spasticity.”

Addressing the Problems

The good news: There are many ways to address the many complications of SCI. But SCI complications are, well complicated. Where should clinicians and ATPs begin?

“When [clients] come in,” Merring said, “we’re having a nice long discussion. What I’m getting from them is their perspective and their idea of what’s working and what’s not working.”

As mentioned earlier, clients won’t always disclose their pain, so Merring said clinicians need to dig deeper.

“It’s not that they want to hide it from me,” Merring said. “It’s because it’s not a priority. It’s that idea of ‘Maybe it’s neuro pain. Maybe it’s part of my paralysis. Maybe it’s because I sit all day, and that’s just how it is.’ But we’re the ones with the tools to help figure out if it is those things. If we want to do our jobs thoroughly, we have to really drill down on those questions: ‘Are you sure there’s no pain? How are your shoulders, how is your back? After two hours, do you feel anything?’ Just ask a couple more questions, build a rapport.”

“Go through the body systems,” Bernstein advised, “and identify the limitations or impairments that someone has. Then decide what are your therapeutic goals to accommodate or correct or relieve those impairments? What are the patients’ goals in their equipment, and then what exact equipment do you need to achieve those goals?

“How am I going to address their skin impairment? How am I going to address their trunk control? I want to correct for this convexity but accommodate for this obliquity, and I’m going to do that through a cushion and a backrest and trunk supports and power positioning. You kind of have to break it down into the problem, the goal and the potential equipment solutions.”

Part of the intervention process, incidentally, is determining when to intervene and when not to.

“As the clinician, your job is not to correct everything,” Bernstein said. “But if you see something that could potentially lead to a problem, then it’s your job to offer a potential intervention. If you’re going to correct someone’s posture, you’re going to limit their function most of the time. So it’s always trying to find that balance between what can you correct, what do you need to accommodate and how is that going to impact function?”

Strategy #1: Gather All the Info You Can

As the saying goes, forewarned is forearmed. Gathering facts and histories from SCI clients at the very beginning of the assessment process is critical to an informed outcome.

“Always look through their medical history as well as the report to find any secondary complications,” Bernstein said. “You want to know anything they’ve been to the doctor for, anything they’ve had to have nursing care for, because it can really all be influential.”

Bernstein cited a colleague who “has a wonderful setup. The first day that they do their eval, all they’re talking about is their medical history and complications and goals. Then they come back and talk about the equipment. So she’s able to process and evaluate and determine over time what’s going to be the best given all those complications, or lack of complications. Not everyone is going to have these complications.”

Strategy #2: Try Positioning Options

Altered positioning can potentially affect a range of complications, from pain to spasticity to, of course, pressure issues.

“Pain can be orthopaedic — my shoulder is hurting from pushing this wheelchair,” Bernstein said. “Or it can be neuropathic, which is this ominous burning, tingling, numbness, achy pain. It’s hard to put your finger on the cause of the pain. We rely not only on our cushions and backrests, but if you’re talking about power chairs, then we’re relying on repositioning and changing positions using power seat functions if someone can’t change their own position. Even providing relief by providing a standing wheelchair. That can really help reduce some of the neuropathic pain that someone experiences.”

Strategy #3: Is Standing an Option?

Merring recently fit a client with a C3-4 SCI and a ventilator for a standing wheelchair.

“She wants to stand, she has really bad increased tone throughout the day, but it takes three hours and three people in order to get her into a stander for one hour,” Merring explained. “There’s something about the proprioceptive input from the joints compressing onto each other [when we stand]. When we walk, not only do we move forward, but each one of our bones goes into each other, and then pulls away. There’s a feedback loop mechanism in there that helps to inhibit some tone for people with paralysis.

“When someone comes into my clinic with SCI, I’m asking them: Can you stand, and if not, why not? Let’s get you onto a standing program. We have standing frames here, maybe we can get you a standing frame at home.”

Strategy #4 Keep Looking

Beyond seating and mobility are other options that can also help to relieve SCI complications.

Merring has seen some clients improve by using FES bikes. “That repetitive circular motion, and the electrical stimulation, has been proven to decrease spasticity and tone when it’s unwanted. Also, it helps with pain,” he said. “If I can put you on an FES bike and you can tolerate it for 45 minutes, we’ll see decreased tone just based off of fatigue immediately after the exercise.

“I also want to ask if there’s a stretching program that they and their caregivers can do. It’s not the end-all be-all, because shortened soft tissue is a lot different than spasticity. But spasticity causes shortened soft tissue, shortened soft tissue can then increase spasticity, then spasticity causes shortened soft tissue. So it’s a big negative cycle that needs to be managed and broken up.”

The bottom line is for clinicians and clients to keep looking for interventions — not just for the immediate relief they can offer, but also because SCI complications can be progressive if not addressed.

“The last thing is making sure they’re seeing their doctor, because there are medicines like Botox and Baclofen and Tizanidine that people can try,” Merring said. “That’s between them and their doctor, and sometimes I can help with that discussion.

“Most times without an intervention, you’re going to get worse. We weren’t meant to sit all day. We were meant to do varied amounts of sitting, laying and standing. There is a chance that even if I do put an intervention into place, [the complication] may get worse still, but at a much slower rate than if I didn’t address it. Then there’s a percentage of times where you do actually stabilize the problem.”

“There’s potential to manage pain through repositioning, through nerve blocks, through different pain management interventions, medications, pain pumps,” Bernstein said. “Same with spasticity: You can manage that with medication, range of motion, weight bearing, standing, Baclofen pumps. People’s bodies do change. Some people will have severe spasticity initially, and then it will kind of dissipate. Some people will develop spasticity afterward.

“When it’s not managed, it will continue to get worse.”