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Feb 26
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Quality of Life With SCI

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Author: Kelsey Zhao | Reviewer: Rachel Abel | Published: 26 February 2025 | Updated: ~

Key Points

  • A good quality of life (QoL) is not uncommon for people with SCI. There is no relationship between injury level or severity and QoL.
  • Involvement in the community through work, school, volunteer work, and social activities is associated with higher QoL.
  • Social support from family, friends, peers, and the community is associated with higher QoL.
  • The frequency of medical complications and how much they interfere with life reduces QoL.
  • QoL can be impacted by the accessibility of the community, work, and home environments.

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What is quality of life?

A woman on a wheelchair having a conversation with another woman sitting at the table

Quality of life (QoL) measures the different parts of an individual’s life to try and paint a picture of how well they are doing and how satisfied they are with their life. This might include things that an outsider could measure, like housing, income, employment, and health status. This can also include things that are based on an individual’s own values and aspirations, like whether they are satisfied with their current life and whether they feel their wants and needs are fulfilled.

QoL can be difficult to measure since individuals have different values and expectations for life. These values, expectations, and priorities can also change over an individual’s lifetime. Assessments used in research will not always accurately reflect how an individual weights different life components. QoL scores can also be influenced by regional differences in cultural values, access to care, and the accessibility of the surrounding environment.

Does spinal cord injury impact quality of life?

Contrary to popular belief, people with SCI generally have good QoL. On average, people with SCI score lower on QoL tests than the general population. However, a lower average does not mean that all people with SCI see their QoL as low, or that all people with SCI will have a lower score than people who do not have an SCI. In studies of people with cervical SCIs, the majority of participants felt that their QoL is average or better than average.

Most studies find little to no relationship between level of injury, injury severity, and QoL. Rather, higher QoL is limited by the physical and social barriers that prevent people from accessing community, activities, and employment.

What can increase quality of life for people with SCI?

Sam Sullivan speaking with Simon in libraryEmployment

Numerous studies show that work is strongly related to higher QoL for people with SCI. This is true whether the person is working full-time, part-time, or in an unpaid position.

In a study that looked at the QoL of people with SCI in six different countries, employment was one of the only factors found to be associated with higher QoL regardless of location. One large study also found that satisfaction with life increased over time for people who were employed or students.

Is it hard to find suitable work with SCI?

Differences in age, injury, work experience, and what is defined as work make it hard to pin down an exact number, but research estimates that about 35% of people with SCI are employed. The low rates of employment are likely due to a mix of personal and environmental factors.

Physical and health limitations

After an SCI, job opportunities can be limited by physical impairments and health. For example, someone might not be able to return to the work they did before their injury because it is too physically demanding. Health complications related to SCI like pain and fatigue, and managing care routines can also limit energy and time, making it more difficult to work.

Workplace environment

That said, people with SCI are often underemployed even when they want to and are able to work. Finding suitable work can be difficult because of issues like lack of transportation, inaccessible workplaces, fear of losing financial or health benefits, and employer discrimination towards people with disabilities. This is extremely concerning because of the connection between work and QoL. There is evidence that workplace support and accommodations increase employment for people with physical disabilities.

Local rehabilitation programs or SCI peer programs may have services to help people with SCI reach work and career goals.

Community involvement

One study found that people with SCI felt they had a greater sense of community than the general population. Community involvement can include recreational activities, hobbies, and positions in community organizations and can contribute to a higher QoL.

Social support

Social support refers to one’s relationships with other people, and the interactions, support, and care provided by this network of people, including family members, friends, and peer community. There is consistent evidence that more social support is linked to higher QoL in people with SCI.
Social interaction and participation in social activities are also linked to higher QoL. In some studies, it has the highest positive impact on life satisfaction of all factors. Marriage/having a partner is found to either improve or have no effect on QoL.

Independence

Independence in personal care and transportation is associated with higher QoL. One large study found that life satisfaction increased over the years for people with SCI who lived independently.

Psychological factors

Feeling like you have control over your life was related to higher QoL in several studies. Research has also shown strong associations between symptoms of depression and anxiety and lower quality of life. The connection between QoL and psychological factors highlight the importance of mental health support and treatment in SCI rehabilitation.

What can decrease quality of life for people with SCI?

Health complications

Having an SCI usually comes with additional health complications over one’s lifetime. These conditions can be directly or indirectly related to the SCI and could include:

Read our articles on the areas listed here and many other Topics!

The more health complications disrupt regular life, the greater the impact on QoL. For example, more frequent UTIs are associated with lower QoL as they limit daily activities and increase experiences of spasticity. How much pain interferes with life is also related to QoL. One study found that over a 2-year period, if pain interfered less with life over time, QoL increased, and vice versa. Pain also contributes to higher rates of mental health conditions for people with SCI, which are commonly associated with lower QoL.

Further, the more health conditions one experiences at once, the more QoL decreases. There is some evidence that when there are no health complications, the average QoL for people with SCI is similar to the average QoL of non-SCI populations.

Does accessibility impact quality of life?

Since community involvement and access to services is so important to QoL for people with SCI, access to the community environment can have a big effect on health and QoL. Many of the factors that hinder access can be improved by changing policies, practices, and the physical environment.

Community Access

Although accessibility features are required in many public places, what is accessible for one person may not be for another. The environment outside and inside can still be inaccessible to people with SCI for many reasons. Things like unmaintained sidewalks; physical barriers in parks, beaches, and swimming pools; a lack of adjustable equipment in a health care centre; and obstacles inside and outside of buildings, can prevent people with SCI from participating in the community and accessing health care. This lack of access to community spaces and resources can have a negative impact on QoL.

Housing Access

Not having suitable housing with adaptations for SCI can have a negative impact on QoL. Living in a home that hinders one’s ability to do daily activities or participate in activities can be very stressful. The inaccessible homes of family and friends can also affect QoL.

Read our article on Housing After SCI for more information!

Transportation Access

A lack of accessible transportation can lower QoL by blocking access to community resources, health care, and activities, especially for people in living in rural or remote areas. Owning a private adapted vehicle may be too expensive, not suited to one’s particular needs, or not available in the area. Public transportation like buses and trains are not always available or equipped to accommodate people with SCI.

Read our article on Adapted Driving for more information!

The bottom line

Regardless of injury level and severity, many people with SCI report that they have a good quality of life. QoL can be difficult to measure because everyone has their own priorities, values, and expectations for what they consider to be a good life.

Involvement in the community through work, school, volunteer work, and social activities are some of the factors that are most strongly related to higher QoL. Social support from family, friends, peers, and the community are also important for QoL.

The disruption caused by frequent and problematic medical complications can lower QoL. Seek medical care from a health professional if pain, fatigue, spasticity, bowel/bladder problems etc. are having a big negative impact on your daily life.

 

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Reference list

Parts of this page have been adapted from the SCIRE Professional “Work and Employment” Module:

Escorpizo R, Smith EM, Finger ME, Miller WC (2018). Work and Employment Following Spinal Cord Injury. In: Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, Sproule S, Querée M, Benton B editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0. p 1- 35.
Available from: scireproject.com/evidence/work-and-employment/

Evidence for “What is quality of life?” is based on:

Hammell, K. W. (2004). Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord, 42(9), 491–502. https://doi.org/10.1038/sj.sc.3101636

Sakakibara, B. M., Hitzig, S. L., Miller, W. C., & Eng, J. J. (2012). An evidence-based review on the influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord, 50(8), 570–578. https://doi.org/10.1038/sc.2012.19

Theofilou, P. (2013). Quality of Life: Definition and Measurement. Europe’s Journal of Psychology, 9(1), 150–162. https://doi.org/10.5964/ejop.v9i1.337

Tate, D., & Forchheimer, M. (2014). Review of Cross-Cultural Issues Related to Quality of Life After Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 20(3), 181–190. https://doi.org/10.1310/sci2003-181

Evidence for “Does spinal cord injury impact quality of life?” is based on:

Hill, M. R., Noonan, V. K., Sakakibara, B. M., & Miller, W. C. (2010). Quality of life instruments and definitions in individuals with spinal cord injury: a systematic review. Spinal Cord, 48(6), 438–450. https://doi.org/10.1038/sc.2009.164

Sakakibara, B. M., Hitzig, S. L., Miller, W. C., & Eng, J. J. (2012). An evidence-based review on the influence of aging with a spinal cord injury on subjective quality of life. Spinal Cord, 50(8), 570–578. https://doi.org/10.1038/sc.2012.19

Hammell, K. W. (2004). Exploring quality of life following high spinal cord injury: a review and critique. Spinal Cord, 42(9), 491–502. https://doi.org/10.1038/sj.sc.3101636

McColl, M. A., Arnold, R., Charlifue, S., Glass, C., Savic, G., & Frankel, H. (2003). Aging, spinal cord injury, and quality of life: structural relationships11No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit on the authors or on any organization with which the authors are associated. Archives of Physical Medicine and Rehabilitation, 84(8), 1137–1144. https://doi.org/10.1016/S0003-9993(03)00138-2

Olkin, R. (2022). Conceptualizing disability: Three models of disability. American Psychological Association. https://www.apa.org/ed/precollege/psychology-teacher-network/introductory-psychology/disability-models

Evidence for “What can increase quality of life for people with SCI?” is based on:

Lakhani, A., Parekh, S., Watling, D. P., Grimbeek, P., Duncan, R., Charlifue, S., & Kendall, E. (2022). Access and engagement with places in the community, and the quality of life among people with spinal cord damage. The Journal of Spinal Cord Medicine, 45(4), 522–530. https://doi.org/10.1080/10790268.2020.1860867

Geyh, S., Ballert, C., Sinnott, A., Charlifue, S., Catz, A., D’Andrea Greve, J. M., & Post, M. W. M. (2013). Quality of life after spinal cord injury: a comparison across six countries. Spinal Cord, 51(4), 322–326. https://doi.org/10.1038/sc.2012.128

Chen, Y., Anderson, C. J., Vogel, L. C., Chlan, K. M., Betz, R. R., & McDonald, C. M. (2008). Change in Life Satisfaction of Adults With Pediatric-Onset Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 89(12), 2285–2292. https://doi.org/10.1016/j.apmr.2008.06.008

Nevala, N., Pehkonen, I., Koskela, I., Ruusuvuori, J., & Anttila, H. (2015). Workplace Accommodation Among Persons with Disabilities: A Systematic Review of Its Effectiveness and Barriers or Facilitators. Journal of Occupational Rehabilitation, 25(2), 432–448. https://doi.org/10.1007/s10926-014-9548-z

Ottomanelli, L., & Lind, L. (2009). Review of Critical Factors Related to Employment After Spinal Cord Injury: Implications for Research and Vocational Services. The Journal of Spinal Cord Medicine, 32(5), 503–531. https://doi.org/10.1080/10790268.2009.11754553

Trenaman, L., Miller, W. C., Querée, M., & Escorpizo, R. (2015). Modifiable and non-modifiable factors associated with employment outcomes following spinal cord injury: A systematic review. The Journal of Spinal Cord Medicine, 38(4), 422–431. https://doi.org/10.1179/2045772315Y.0000000031

Migliorini, C. E., New, P. W., & Tonge, B. J. (2011). Quality of life in adults with spinal cord injury living in the community. Spinal Cord, 49(3), 365–370. https://doi.org/10.1038/sc.2010.102

Helgeson, V. S. (2003). Social support and quality of life. Quality of Life Research, 12(1suppl), 25–31. https://doi.org/10.1023/A:1023509117524

Kashif, M., Jones, S., Darain, H., Iram, H., Raqib, A., & Butt, A. A. (2019). Factors influencing the community integration of patients following traumatic spinal cord injury: a systematic review. JPMA. The Journal of the Pakistan Medical Association, 69(9), 1337–1343.

Müller, R., Peter, C., Cieza, A., & Geyh, S. (2012). The role of social support and social skills in people with spinal cord injury—a systematic review of the literature. Spinal Cord, 50(2), 94–106. https://doi.org/10.1038/sc.2011.116

Chang, F.-H., Wang, Y.-H., Jang, Y., & Wang, C.-W. (2012). Factors Associated With Quality of Life Among People With Spinal Cord Injury: Application of the International Classification of Functioning, Disability and Health Model. Archives of Physical Medicine and Rehabilitation, 93(12), 2264–2270. https://doi.org/10.1016/j.apmr.2012.06.008

Jörgensen, S., Iwarsson, S., & Lexell, J. (2017). Secondary Health Conditions, Activity Limitations, and Life Satisfaction in Older Adults With Long‐Term Spinal Cord Injury. PM&R, 9(4), 356–366. https://doi.org/10.1016/j.pmrj.2016.09.004

van Leeuwen, C. M. C., Kraaijeveld, S., Lindeman, E., & Post, M. W. M. (2012). Associations between psychological factors and quality of life ratings in persons with spinal cord injury: a systematic review. Spinal Cord, 50(3), 174–187. https://doi.org/10.1038/sc.2011.120

García-Rudolph, A., Cegarra, B., Opisso, E., Tormos, J. M., & Saurí, J. (2021). Relationships Between Functionality, Depression, and Anxiety With Community Integration and Quality of Life in Chronic Traumatic Spinal Cord Injury. American Journal of Physical Medicine & Rehabilitation, 100(9), 840–850. https://doi.org/10.1097/PHM.0000000000001773

Parker, M. A., Ichikawa, J. K., Bombardier, C. H., & Hammond, F. M. (2022). Association Between Anxiety Symptoms, Depression Symptoms, and Life Satisfaction Among Individuals 1 Year After Spinal Cord Injury: Findings From the SCIRehab Project. Archives of Rehabilitation Research and Clinical Translation, 4(3), 100211. https://doi.org/10.1016/j.arrct.2022.100211

Evidence for “What can decrease quality of life for people with SCI?” is based on:

Andresen, S. R., Biering-Sørensen, F., Hagen, E. M., Nielsen, J. F., Bach, F. W., & Finnerup, N. B. (2016). Pain, spasticity and quality of life in individuals with traumatic spinal cord injury in Denmark. Spinal Cord, 54(11), 973–979. https://doi.org/10.1038/sc.2016.46

Ataoğlu, E., Tiftik, T., Kara, M., Tunç, H., Ersöz, M., & Akkuş, S. (2013). Effects of chronic pain on quality of life and depression in patients with spinal cord injury. Spinal Cord, 51(1), 23–26. https://doi.org/10.1038/sc.2012.51

Kemp, B., Tsukerman, D., Kahan, J., & Adkins, R. (2014). Predicting Psychosocial Outcomes Using a Brief Measure of Quality of Life in a Sample of People with Spinal Cord Injury. Topics in Spinal Cord Injury Rehabilitation, 20(3), 191–196. https://doi.org/10.1310/sci2003-191

Putzke, J. D., Richards, S. J., Hicken, B. L., & DeVivo, M. J. (2002). Interference due to pain following spinal cord injury: important predictors and impact on quality of life. Pain, 100(3), 231–242. https://doi.org/10.1016/S0304-3959(02)00069-6

Vogel, L. C., Krajci, K. A., & Anderson, C. J. (2002). Adults With Pediatric-Onset Spinal Cord Injury: Part 2: Musculoskeletal And Neurological Complications. The Journal of Spinal Cord Medicine, 25(2), 117–123. https://doi.org/10.1080/10790268.2002.11753611

Theisen, K. M., Mann, R., Roth, J. D., Pariser, J. J., Stoffel, J. T., Lenherr, S. M., Myers, J. B., Welk, B., & Elliott, S. P. (2020). Frequency of patient-reported UTIs is associated with poor quality of life after spinal cord injury: a prospective observational study. Spinal Cord, 58(12), 1274–1281. https://doi.org/10.1038/s41393-020-0481-z

Piatt, J. A., Nagata, S., Zahl, M., Li, J., & Rosenbluth, J. P. (2016). Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life. The Journal of Spinal Cord Medicine, 39(6), 693–698. https://doi.org/10.1080/10790268.2015.1123845

Wijesuriya, N., Tran, Y., Middleton, J., & Craig, A. (2012). Impact of Fatigue on the Health-Related Quality of Life in Persons With Spinal Cord Injury. Archives of Physical Medicine and Rehabilitation, 93(2), 319–324. https://doi.org/10.1016/j.apmr.2011.09.008

Peterson, M. D., Meade, M. A., Lin, P., Kamdar, N., Rodriguez, G., Krause, J. S., & Mahmoudi, E. (2022). Psychological morbidity following spinal cord injury and among those without spinal cord injury: the impact of chronic centralized and neuropathic pain. Spinal Cord, 60(2), 163–169. https://doi.org/10.1038/s41393-021-00731-4

Wollaars, M. M., Post, M. W. M., van Asbeck, F. W. A., & Brand, N. (2007). Spinal Cord Injury Pain: The Influence of Psychologic Factors and Impact on Quality of Life. The Clinical Journal of Pain, 23(5), 383–391. https://doi.org/10.1097/AJP.0b013e31804463e5

Rivers, C. S., Fallah, N., Noonan, V. K., Whitehurst, D. G., Schwartz, C. E., Finkelstein, J. A., Craven, B. C., Ethans, K., O’Connell, C., Truchon, B. C., Ho, C., Linassi, A. G., Short, C., Tsai, E., Drew, B., Ahn, H., Dvorak, M. F., Paquet, J., Fehlings, M. G., & Noreau, L. (2018). Health Conditions: Effect on Function, Health-Related Quality of Life, and Life Satisfaction After Traumatic Spinal Cord Injury. A Prospective Observational Registry Cohort Study. Archives of Physical Medicine and Rehabilitation, 99(3), 443–451. https://doi.org/10.1016/j.apmr.2017.06.012

Burke, D., Lennon, O., & Fullen, B. M. (2018). Quality of life after spinal cord injury: The impact of pain. European Journal of Pain, 22(9), 1662–1672. https://doi.org/10.1002/ejp.1248

Evidence for “How does accessibility impact quality of life?” is based on:

Gurung, S., Jenkins, H.-T., Chaudhury, H., & Ben Mortenson, W. (2023). Modifiable Sociostructural and Environmental Factors That Impact the Health and Quality of Life of People With Spinal Cord Injury: A Scoping Review. Topics in Spinal Cord Injury Rehabilitation, 29(1), 42–53. https://doi.org/10.46292/sci21-00056

 

Image credits

  1. Two people sitting outside ©SCIRE, CC BY-NC 4.0
  2. Sam Sullivan https://samsullivan.ca/photo-gallery/
  3. Mother in wheelchair with child ©SCIRE, CC BY-NC 4.0
  4. Elderly man in wheelchair cityscape ©SCIRE, CC BY-NC 4.0

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.
Nov 27
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Thumbnail image. Text: SCIRE Community Stories, Sam Sullivan: A conversation about everything. Image: B&W portrait of Sam on black background.

Community Stories: Sam Sullivan

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Authors: Dominik Zbogar, Kelsey Zhao, Sarah Yada Seto | Published: 27 November 2024

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A Conversation About Everything

We spoke with Sam Sullivan, former mayor, city councillor, and MLA, non-profit creator, spinal cord injury survivor, salon host, proud Vancouverite, and possible advocate, about… everything.

INJURY

I was skiing when I broke my neck. I had just turned 19, living in Vancouver. I went on a run that was steep and ended up going quite fast and then crashing. Somewhere in the whole thing I felt my neck break. I experienced it as feeling my body was expanding, the size of the universe. I experienced it as a sound like multiple sirens going off, very loud noises going very broadly. Then, I experienced my body going into a fetal position but when I opened my eyes my arms were up here. I said to myself, “You broke your neck – don’t move.” Eventually, people went down and got a piece of plywood to carry me off the mountain. They took me down, sort of bouncing, which is probably where more damage came.

REHAB

Initially, I was quite strong in that I was interested in experiences. “Wow, I’ve never broken my neck before. This is interesting. I’m going to live this one and really, really embrace it, and see how it goes.” But then, over time, eventually you get worn down and you say, “Okay, I’ve had this experience, I think I’m ready for the next thing. Why don’t we just get over this one here and move on?” And that’s when it all sinks in. This is not a light thing.

There are some panicky moments where you really need someone to be there, though sometimes you need to be able to reflect as well. I would say visitors should ask the person they’re visiting, “What can I do? What do you need from me? How can I help?” You should be saying to me, “We’re going to get through this one, we’re going to figure out how to get you better.” I think there is no real advantage in saying too early to someone who hasn’t accepted it, “Hey, you know, maybe you should just get used to this and whatever”. There are medical people and other people who should say those messages. That’s one of the takeaways from my experience.

METAMORPHOSIS

It was lucky that I was able to stay at GF Strong [Rehab Centre] for quite a while; I think it was over a year from injury to being discharged. It was only in those last couple of months that I actually learned how to get in and out of bed. It took quite a long time because of my injury. After leaving rehab I was with my parents in my family home, but realized I was going downward, becoming suicidal. I needed to get out of the house. Eventually, I went into the only place I could: a paraplegic lodge – a type of social housing. I had to keep my blinds closed because I couldn’t open them myself, and I couldn’t sleep with open blinds with so much light outside. That did not contribute to my emotional well-being to be in the dark room all the time. There I dealt with suicidal thoughts and contemplations.

Eventually I went through a very real scenario where I rehearsed a dry run in my mind.

“The key in what happened there – and only in retrospect can I understand it – I killed the old Sam.”

A gun blast, blood, brains, dripping down the wall, the smell of the gun. That was a very powerful moment. Then eventually, after a while I felt very calm, deep in thought. My thinking process went, “Okay, this is good, I think I can handle that. But it certainly would be great if I could somehow donate my body to someone who probably was in worse shape than me; who would it be?” Some people would be thrilled to get what I had. I dwelled on that for a while, then I thought, “What about me?” What if I was to take this mortal body on and see what I could do with it? Eventually, I thought yeah, that could be interesting.

The key in what happened there – and only in retrospect can I understand it – is I killed the old Sam. And I always refer to him in the third person. At that point, I killed the hopes, dreams, aspirations, and all the baggage of the previous me. Then I was able to say, “Okay, let’s start from scratch.”

REBUILDING

After this I was faced with the question, “What do I do with my life?” I ended up purchasing motivational literature, a book called How to Get Control of Your Time and Your Life and things like that. I’d go through all the exercises and try to figure things out and that was very helpful.

One day I did all my morning things, got up, and went down to the bank to cash my welfare check. I got there and the bank manager was just closing the door because this was in the days when banks closed at three o’clock in the afternoon. I realized, “Oh my god”, I only got out at the same time everybody else is going home. Now I have to go home and start getting undressed to get ready for bed.

So, I did things like to-do lists and time analysis. The very first thing I did was analyze getting up in the morning – I would lift up my leg, put it on, put my sock on the other leg, put my sock on, put it down, then the other leg again, and then put my shoe on. Well, what if I put my sock and my shoe on at the same time and I didn’t have my legs going up and down? Then I would celebrate how much time I’d just saved, you know, 4 minutes times 80 years. Wow, that means I’ve just now come up with 12 weeks!

It seems to me that I never had a point in my life where I was not solving a problem or looking at my next to-do list. I have a tendency towards depression but find if I’m constantly solving problems, it prevents the dark part from arising. In fact, I would use my disappointment at not ticking a box on my to-do list to cultivate anger or frustration or negative emotions and channel them to a desire for forward motion.

This all happened over a period of time I call the Seven Lean Years. And now I had my model: ticking boxes on to-do lists, time analysis, channeling emotions, moving ahead, kill the old Sam. Those are the fundamental pieces that had to be done and informed what happened in my life moving forward.

NONPROFIT

The key was figuring out what I want to do. “Okay, I really don’t know what I want to do with my life, what did I used to do when no one paid me and when no one forced me into doing something?” I was going skiing. I was playing in a band. I wanted to start a little business and these sorts of things. Once you have a good idea of the directions you want to go, then your mind will organize things as they come to you. And you will pick out and grab the right things that will help move you forward.

The most important thing was me discovering this model of setting up nonprofit societies. This was an accidental discovery; I volunteered and got involved in some fundraiser and I asked, “how do you get one of these funding systems going?” Well, you have to have a nonprofit society, and then you apply. That was quite a revelation. So, the Tetra Society was probably the most important innovation. The purpose of it was to recruit people like engineers to work with clients and build custom-made assistive devices to help them. I was the executive director, I had a board, it was a lot of administrative work, but I was able to raise money. We called ourselves “Tetra”, we all had “tetraplegia”, and there were actually four of us. Everybody was on welfare. We looked into an engineer’s hourly rate, it was around 400 bucks an hour, and all of us made 396 per month on welfare, I remember that. Whoa, that’s not a very sustainable model if for one hour of an engineer’s time, it cost us an entire month! So, I wrote a letter to an engineer’s magazine – maybe there was a retired person or company that is willing to help? A guy (Paul Cermak) answers that he just took early retirement, and says, “My wife wants me out of the house, can you give me something to do?” The very first thing he did was fix my fridge: My grandmother had given me a fridge, and the freezer was on the top, and I had to pull it down. When I tried to put something in, it would flop back up with the spring. I just couldn’t figure out a way getting my elbow on there to hold it down. So he came over, looked at me struggling with this, got a clothes hanger from the closet, bent it and hooked it around the drawer handle. Then I pulled it down and the hook came around a little tray. And it was open, just like that, within minutes he revolutionized my diet.

“What did I used to do when no one paid me and no one forced me into doing something?”

I wanted to go skiing again but because I was so uncomfortable when I get cold, I thought what else can I do? I heard a guy talking about ultralight airplane flying and I thought that’d give me the challenge I needed. I found a plane and the Disabled Ultra Lighters of Vancouver Society was born. We did that for a while and were successful; we got people flying. Then the company went bankrupt. There was a fundamental flaw in the whole program: you have to get people out to these remote places.

 

So then, we went into sailing through Rick Hansen; he had this sailboat gifted from Margaret Thatcher. We found the old sailboat in a farmer’s field somewhere. And Rick said, if you can use it, I need somebody to actually do something with it. So, we fixed it up. That became the Disabled Sailing Association of British Columbia.

But we still wanted to do hiking. So we had the BC Mobility Opportunity Society – BCMOS (I wasn’t very good at naming that one) to be more about getting out there. We originally used a big golf cart. I remember we were not welcomed by environmentalists when we would come crashing through the bush with this big vehicle-tank, so we came up with another solution with a one wheeled vehicle, which I had drawn out on a napkin. I gave the drawing to Paul Cermak (the first Tetra volunteer) and then he designed and put one together using an old lounge chair, a wheelbarrow wheel, you know, just stuff he found. And that enabled me to go out to the forest and people would be able to take me around. So that’s how those things, the societies happened.

You know, I wish everybody could have their own society so they would be able to then have control and agency. Because I was doing all the work, recruiting the engineers, fundraising and all, I had really great access to all this stuff. So even when I was on welfare, I was sailing, going hiking, doing all these things. I do regret that for most people I was never able to do with TETRA what I wanted to do, which was that everybody gets access, just like I had, right away. We always ended up with a long form filling process.

NO ADVOCATE?

I’ve never thought of myself as an advocate. What I wanted to do was fix my own life. I would say, “I want to go sailing, I want to go flying. How do I do that?” I realized I was good at fundraising. I’ve never thought of myself as such, but people would say, “Well, you sure know how to fundraise!” And so in a way, I guess I was raising money for other people too. I wasn’t saying, “Hey, I want to go sailing”, and I don’t say “Hey, I want to create a program where all sorts of people go sailing.” In fact, regarding sailing, the first thing I did is go to the Royal Vancouver Yacht Club, and I said, “You know, we have people from your club who have injured themselves or their son has injured themselves. We want you guys to be able to continue even if you have a bad accident. Look at it as we’re what you do for any of your members or their family who end up in a situation where they can’t go on the regular yachts. Look at it as an insurance payment because you might end up like this and you would like to have access to sailboats”. You have to be a bit clever with how you frame it.

So, about advocacy, that’s not where I was coming from. I was coming from a personal level. I always wanted to stay in a position where we’re doing this for ourselves; we had little boards, and all our boards were disabled people. All of them were on welfare. That was strategic in many ways. When we had able-bodied people with money on the board, they would get freaked out when you’re taking a quadriplegic on his own out in the ocean. “What? I’ve got assets, I have a home! I’m not going to get sued, we can’t be doing that, you need to get more processes, etc.” They’re really getting in the way of our fun or what we are trying to accomplish. And so we realized, okay, if all of our board members were quadriplegics on welfare, who’s going to sue us? Go ahead, they’re going to take my wheelchair?

Well, maybe I should say that I did advocacy because I was always pushing for wheelchairs in transit. I came in as mayor, as the city councillor, with a stick. I didn’t come with my hand out. I said, “I’ve worked myself into this position where you need my vote, and I am now with agency. I’m not asking for anything from you, I’m telling you that this is the way we need to go. We need 100% transit accessibility and we need more taxis.”

THE MAYOR

I’ve always had two areas that were really important for me. One is drug addiction and overdose. The other is housing. They are the two areas that I failed the most spectacularly at, as you can tell with where the city is today. In my own defense, I analyzed those to be the two problems that seemed like there was no way out of. I chose them, and I said, “These issues are the most important, and we need to start moving on them.” So at least I can say I was accurate in analyzing them as impossible to solve.

Regarding housing affordability, my experience of it was that everybody was anti-density. For disabled people, to have compact, vibrant, diverse neighborhoods – it’s much easier to make those accessible. People don’t have to drive everywhere, and transit is much more possible. Everybody who lived in their little single-family home hated density. All the people who were looking out for the future of the city loved density, but there were very few of them. I said, “Wow, this is so important, and it’s the right thing to do.” I’ve always been attracted to the right thing to do that everybody thinks is wrong.

“I came in as mayor, as the city councillor, with a stick. I didn’t come with my hand out."

My assumption was that all the bureaucracy comes from the top, risk-averse leadership that didn’t want to lose the election. I said, I’m going to be different, I’m going to say, “Go for it.” I would ask for forgiveness, not permission, in addressing the housing issue. But I found out when I came in and pushed for density, the city council said “Density is good! We want it”. I was stunned to discover on numerous occasions that the bureaucracy is internally generated. People given the option of getting right into the job or creating bureaucracy around the job will naturally default to bureaucracy. To see all the internal machinery, all the bureaucracy that ended up going around it, that tries to not do density, “Oh my God, this is gonna be a nightmare!” So that was a real shock for me. Because I thought all I had to do was say, “We are the political leader, we got elected. We want density, call it EcoDensity, eco for eco-logical and eco-nomic. We want to address house prices and environmental issues.” And yet that didn’t do it. That was a powerful lesson that I wish I knew before then.

Proudest Achievement

The most exhilarating thing for me was being able to get out of bed by myself at GF Strong. What a miracle to be able to do that. Those are the moments. I’m supposed to say flying the flag, or the Olympics. But while those are interesting, wonderful things, there wasn’t a sense that I did anything useful. I happened to be there when a flag needed to be flown. I tried not to fly the flag, I said, “Give it to Gordon Campbell, give it to the mayor of Whistler. I’m busy, I don’t want to go to the Olympics and twirl a flag.” It certainly was interesting and fun to do, but I wouldn’t call it an achievement.

Regarding the drug addiction issue, when I first got elected I used to go out with this group, ‘Shame the John’ in East Vancouver. I would go out with them and they’d walk around the street and try to shame the johns, which is shaming prostitutes in a way. I was totally new to this and didn’t really know anything about it. And I said, “Wow, these women are prostituting themselves, what’s going on? Well, they are forced to because they’re drug addicted. Why don’t they just not do drugs anymore?”

Taking a step back, I remember when I was in GF Strong, of this moral issue around disability. I see the history of disability where originally it was seen as a moral issue caused by your sins or the sins of your fathers or bad karma, and it was somehow your fault. Then we moved into the medical model, “you need to be fixed, we need a doctor to look after you. And you need to be on a ward in a hospital.” And then, one day somebody said, “Excuse me, I’m not sick, I’m disabled, it is a totally different thing, you know”. This is not a short-term problem you fix it’s a long-term problem you manage. And that insight moved us along to a community model of disability. Agency, you know, you just need to give people the support they need and get out of the way.

When I heard about the prostitutes, people said, “I guess they just didn’t want it enough [to get out].” Where have I heard this? I remember in GF Strong, somebody said, “Well, the guy in the next bed, he got better because he really wanted to get better.” And what about Sam? “Well, I guess he just didn’t want to, he didn’t have that same sort of willpower.” Oh, wow. So, this disability is still a moral issue. It’s about willpower and desire?

If we think of drug addiction like the disability problem, then we still have one foot in the moral model and another in the medical model. We need to move past that and see it as people who need the supports. Then they can get on with their lives. You know, in the 90s, Switzerland solved their overdose problem and their street disorder problem with their four pillars approach. And here, we are still today, stupidly doing stupid things, and not emulating other countries that have solved the problem.

THE PUBLIC SALON

When I retired from City Hall – or as my mother helpfully reminds me, was thrown out of City Hall – I found myself asking again, “What am I going to do with my life?” I went back to my standard question, “What is it that I do when no one pays me?” And so, I developed this thing called a Private Salon. We would put these little private dinners together, and invite a real scattering of different people that were very different from each other. We’d come together for dinner and just share; it was very interesting for me. I loved to do it and Lynn, my wife, loved doing it. We asked ourselves, “is there a way to turn this into a job somehow as I had done originally with my injury?” So we said, let’s have a Public Salon. It was hard when you scale up from a little dinner to a theater, but it was still fun.

We were able to put on the Public Salons for about four or five years, having received a million dollars from a foundation in California. We tried to raise additional money to bolster that, but eventually we ran out. We had to try to make it profitable on its own, but it wasn’t designed for fundraising, it was designed for giving me pleasure. Fundraising would be a real challenge. So, we had to totally revolutionize it a couple years ago. What I do now is bring in an international speaker, that’s the star, and then have local responders who give them questions, comments, critiques, etc. So that’s the new model and it seems to be working. I brought in a former chief planner of the World Bank, Alain Bertaud, and a recent Think-Tank Salon included experts on addiction and mental health. In a way, I’m still on those two issues of prices and addiction, now attacking them from outside, not from the inside as mayor.

MAKING A DIFFERENCE

Advice for those living with a disability

It’s hard to just say, “Set goals.” You also have to know why. You have to get to that point to where you find out why you want to do what you want to do. But I know for sure that setting goals was a revolutionary thing for me. Also, just recognizing that life is very precious. Recognize what a miracle it is and how we are the luckiest people ever in history, even myself as a quadriplegic. I would rather be me as a quadriplegic than someone living more than a few 100 years ago. People today don’t grasp how difficult life was then in every aspect. To have what we have today is just so miraculous, and so beautiful.

I can’t say it comes from any enlightenment really, that I decided I’m going to help the world and I want to solve everybody’s problems. But when it turned out that way, I certainly wasn’t disappointed about it. I was happy that I could make a difference for some people. I wouldn’t recommend to people that they should decide to save the world or whatever. I think you should put your own mask on first before you put it on others. Remember, all of that was me being self-absorbed. I wanted to go sailing. I would have rather just been given a whole bunch of money, and then I could buy a sailboat.

But, we had to do it the hard way because I was on welfare, and the genius of our civic society is you can’t do it unless you do it for others too, so I needed lots of involvement. Then I realized this is fantastic. At one point in the beginning, I was going sailing, buying sailboats, going in regattas, etc. And then at a later point, I was the only one not going sailing, I was filling out forms and fighting bureaucratic battles. I then recognized that it was so important. When people asked me, “Why are you doing this, all this bureaucratic work and lobbying? The only answer I can give is “I’m doing it for Sam. The 19 year old kid, suicidal and sitting in a dark room where the blinds don’t open.” I wanted to reach people who were like me.

Image Credits
  1. Mount Seymour | Mt. Seymour
  2. Rick Hansen’s Boat | Rick Hansen Foundation
  3. Trail rider | The Disability Foundation
  4. Sailing | Jean-Edouard de Marenches
  5. Mayor | Shaw Cablesystems
  6. Olympics Closing Ceremonies | The Canadian Press | Paul Chiasson
  7. Public Salon | Sarah Murray
Sep 17
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Non-traumatic Spinal Cord Injury

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Author: Dominik Zbogar, Kelsey Zhao | Reviewer: Peter New | Published: 17 September 2024 | Updated: ~

Key Points

  • NTSCI can be broken down into three major categories: congenital, genetic, and acquired which accounts for the large majority of cases.
  • Rates of NTSCI vary widely worldwide and much information is lacking. Developed countries tend to have a higher proportion of cases caused by degenerative conditions and tumours. Developing countries tend to have a higher proportion of NTSCI acquired from infection.
  • Those with NTSCI are more likely to be older, female, have paraplegia and have an incomplete injury when compared to those with traumatic SCI.
  • Much of NTSCI rehabilitation is similar to traumatic SCI rehabilitation, though the rehabilitation stay is shorter.

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What is non-traumatic SCI?

Spinal cord injuries (SCI) can have traumatic or non-traumatic causes. Traumatic SCIs are caused by external forces in events such as car accidents and falls. Non-traumatic spinal cord injuries (NTSCI) occur without an external physical force and are typically caused by an underlying health condition.

What causes non-traumatic SCI?

Causes of NTSCI can be divided into three major categories: congenital, genetic, and most commonly – acquired.

Congenital (present at birth)

Congenital NTSCIs are developmental defects, malformations, and abnormalities affecting the spinal cord which are present at birth. An infant can have one congenital condition, or multiple conditions at the same time. For example, Type 2 Chiari malformations almost always occurs in association with myelomeningocele, a severe form of spina bifida

Spinal dysraphism

Myelomeningocele is the most severe type of spina bifida as the spinal cord itself protrudes through the opening of the unfused portion of the spinal column.2

Spinal dysraphism is a defect in the development of the neural tube (an early form of the brain and spine) where the canal that houses the spinal cord does not completely close and causes damage to the spinal cord and nerves. A well know type of spinal dysraphism is spina bifida.

Chiari malformations

Chiari malformations are a condition where a part of the brain known as the cerebellum is pushed into the space where the brain connects to the spinal cord.

Skeletal malformations

Skeletal malformations include any deformities or abnormalities in the development of bones or ligaments that affects the spine. These malformations can put the person at higher risk of spine instability which can cause pressure on the spinal cord that can result in NTSCI.

Congenital syringomyelia

Congenital syringomyelia is the formation of a fluid-filled sac, known as a cyst or syrinx, in the spinal cord. This often occurs in association with spina bifida or Chiari malformations, but can also happen on its own, spontaneously.

Genetic

A genetic NTSCI comes from an abnormality in a person’s genes that affects the spinal cord. This abnormaility can be inherited from one’s parents or be a spontaneous mutation that occurred during development. The effects of this genetic abnormality can be present at birth or show up later in life. Most genetic NTSCIs lead to loss of movement and/or sensation from the degeneration of nerve cells.

Some examples of genetic NTSCI types include hereditary spastic paraplegia, spinocerebellar ataxias (e.g. Freidrich’s ataxia), adrenomyeloneuropathies, leukodystrophies, and spinal muscular atrophy.

Acquired

Acquired conditions include the most common causes of NTSCI, such as degenerative spinal cord conditions, tumours, and vascular problems. This is a diverse category and the conditions become more common in older age.

Degenerative

Degenerative NTSCIs include any condition that causes damage to the spinal cord through the degeneration of its bone or ligaments. For example, spondylosis is a condition where there is an abnormal and painful degeneration in the bones and cartilage of the neck that can lead to loss of control or sensation over parts of the body.

Metabolic

Metabolism is the processes in the body that turns food into energy and the components that make up and maintain the body. Nutrient deficiencies like vitamin B12 and folate deficiency, or diseases that affect the maintenance of bone like osteoporosis and Piaget’s disease, can cause degeneration or damage to the spinal cord.

Vascular

Vascular causes of NTSCI refer to spinal cord damage caused by problems with the vessels that carry blood through the body. For example, if a blood vessel bursts and bleeds, if there are issues with abnormal connections between vessels, or if the blood supply is blocked, the spinal cord could be damaged. These issues can happen anywhere in the body and can cause NTSCI when they happen in the spinal cord.

Inflammatory or auto-immune

Inflammatory and auto-immune conditions involve immune system activity that damages the spinal cord through swelling (inflammation) or direct attack on healthy cells (auto-immune). The immune system is normally responsible for protecting us from viruses, bacteria, and other orgamisms but different conditions can cause overactive or innapropriate immune reactions. Examples include transverse myelitis and multiple sclerosis.

Spinal tumors may be (left to right) intramedullary, intradural-extramedullary, or extradural.5

Tumors and masses

Benign or malignant tumours can cause a NTSCI if the growth of the mass puts pressure on the spinal cord or interferes with the blood supply.

Infection

The spinal cord can be infected by bacteria, viruses or other organisms. Infections can put pressure on the spinal cord due to an abcess (pocket of infection) or interfere with the blood supply.

Other

Other uncommon causes of NTSCI include damage to the spinal cord due to radiation exposure and exposure to toxic substances. Amyotrophic lateral sclerosis and primary lateral sclerosis are both rare degenerative diseases that affect the motor neurons which are the nerve cells involved in the control and coordination of movement.

Are Multiple Sclerosis and ALS types of NTSCI?

Multiple sclerosis (MS) is an auto-immune disease where the immune system attacks the protective covering (myelin) of nerve fibers in the central nervous system, which is made up of the brain and spinal cord. Amyotrophic lateral sclerosis (ALS) is a progressive nervous system disease that affects nerve cells in the brain and spinal cord. Because lesions can occur not only in the spinal cord but in the brain too, categorizing them is a challenge. Some studies include MS and ALS with their SCI sample while others choose to exclude these conditions.

Who gets non-traumatic SCI?

TSCI = traumatic spinal cord injury; NTSCI = non-traumatic spinal cord injury

Although NTSCI still affects males more overall, the proportion of females with NTSCI is higher relative to traumatic SCI. NTSCI is also more likely to affect older people.

The numbers by cause

The incidence of NTSCIs varies depending on the cause and the health services in the country where you live. Although there are many gaps in the research data, existing studies provide an idea how different NTSCI causes are distributed.

Congenital & Genetic

  • In the few studies that recorded cases of congenital causes of NTSCI, spina bifida and other congenital conditions cause between 1 to 6% of cases. Overall, congenital and genetic NTSCI make up a very small proportion of NTSCI.

Acquired

  • Malignant and benign tumours are common causes of NTSCI globally. Studies from all over the world since 1975 report that tumours are the cause of 14-44% of NTSCI cases
  • Degenerative conditions of the spine are a very common cause of NTSCI in high-income developed countries. The percentage of NTSCI cases caused by degenerative conditions ranges from 13 to 62%. Many of these conditions become more prevalent with age.
  • In the regions of Sub-Saharan Africa and South Asia, tuberculosis has been reported to cause 15 to 30 % of NTSCI cases. Tuberculosis is an infectious disease caused by bacteria that typically attacks the lungs but can also damage other parts of the body like the spine and brain.
  • Other causes of NTSCI commonly reported in research include inflammatory/auto-immune conditions, vascular conditions, and infections.

Pediatric SCI

Traumatic injury is the most common cause of SCI in adults, while non-traumatic causes are more common in children. The most common non-traumatic causes of pediatric SCI include congenital anomalies, spinal cord tumors, infections, and vascular malformations. Common traumatic causes of pediatric SCIs include motor vehicle accidents, falls, sports-related injuries and iatrogenic harm.

Visit SCIRE Professional for more information on Pediatric SCI.

Where in the World?

An estimated 20.6 million individuals live with SCI globally. It appears that the incidence of NTSCI is increasing due to the ageing population in many countries. Indeed, in some countries the incidence of NTSCI is now higher than that of traumatic SCI.

There is a general lack of information about incidence and types of NTSCI worldwide. That said, developed countries tend to have a higher proportion of cases caused by degenerative conditions (32%) and from tumours (25%) in Western Europe. Developing countries, in comparison, tend to have a higher proportion of NTSCI acquired from infection, particularly tuberculosis and HIV, though tumours are also reported as a major cause. There are many gaps in tracking the global rates of NTSCI.

How does non-traumatic SCI present?

The onset of NTSCI may be slow and gradual and be related to a progressive condition or a complication from another medical event. Onset can range from minutes to months depending on the cause of injury.

Compared to traumatic SCI, those with NTSCI:

TSCI = traumatic spinal cord injury; NTSCI = non-traumatic spinal cord injury

  • are more likely to have paraplegia
  • are more likely to have an incomplete injury
  • spend less time in rehabilitation and have reduced hospital charges
  • have similar discharge destinations.

“Invisible” disability

Compared to people with traumatic SCI, people with NTSCI are more likely to have regained some walking ability when they are discharged from rehabilitation. People with SCI who can walk may face unique physical and psychosocial challenges. The use of mobility devices for walking likes canes and walkers might cause more fatigue and/or pain then a wheelchair. The absence of a wheelchair as a clear indicator of disability can result in misunderstanding and judgement from others due to lack of awareness about people with SCI who can walk. Some feel that they exist in a “grey zone” where they are neither fully abled nor disabled and experience “invisible” challenges.

Some examples of challenges include:

  • Misunderstanding from others about the severity of their injury and the impairments they live with.
  • Feeling out of place in SCI programs or in the SCI community, especially when the program or space is not built with people who can walk in mind (e.g., no places to sit).
  • Unwanted attention and scrutiny when in public or in social situations due to an abnormal gait or assistive devices.
  • Lack of empathy from others when they pass as not disabled (e.g., “Can you hurry up? Why are you so slow?”).

There is a need for more programs and services that are welcoming to and consider the needs of people with SCI who can walk. If you or someone you know is struggling with finding community and services as a person with SCI who can walk, it can be helpful to talk to health professionals or peers with similar injuries and experiences. Peer support has been proven to improve adjustment to life after injury and general wellbeing through social/emotional support and sharing knowledge. If pain or fatigue with walking are a problem, it may also be beneficial to consider the intermittent use of wheeled mobility devices.

Read our article on SCI Basics for more information about types of SCI!

How is non-traumatic SCI treated?

Rehabilitation common to all types of SCI

Most of the rehabilitation process will be similar between traumatic and NTSCI while treatment of the underlying conditions that cause NTSCI will vary. Rehabilitation common to both traumatic SCI and NTSCI includes:

  • Education about the SCI and the related medical problems that need to be managed.
  • Complication management and prevention: In people with all types of SCI, complications like urinary tract infection, pneumonia, pressure ulcers, spasticity and neuropathic pain are common and managed in rehabilitation. Prevention and education are essential to minimize complications.
  • Physical and occupational therapy: Physical therapists work with patients to regain mobility, strength, and coordination. Occupational therapists focus on helping patients adapt to their new circumstances, relearn daily living skills, and regain independence. Both are critical essential to rehabilitation after SCI.
  • Assistive devices: Mobility aids, adaptive equipment, assistive technologies, and other supports like cushions and mattresses can significantly improve the quality of life for people with SCIs. These devices help with mobility, communication, daily tasks, and prevent complications like pressure ulcers.
  • Pain management: Chronic pain is a common issue in that can be managed with medications, nerve blocks, or other interventions to alleviate discomfort.
  • Bladder and bowel training: Medical treatments can be used to treat bladder and bowel problems. Training also includes learning how to manage your bladder and bowel care after rehabilitation.
  • Psychological support: Psychological support and counseling can help individuals and their families navigate the challenging emotional aspects of coping with SCI.
  • Community reintegration: In preparation for leaving rehabilitation, the health team should provide support in finding local resources and services, managing finances, returning to regular life activities, and adapting the home for SCI.

Read our article on Understanding Rehabilitation for more information!

Read our articles on the areas listed here and many other Topics!

Rehabilitation unique to non-traumatic SCI

Predicting recovery

NTSCI presents unique rehabilitation challenges. Given that those with NTSCI tend to be older, there is an increased likelihood of chronic conditions such as arthritis, diabetes, cardiovascular disease, obesity, and other conditions. These comorbidities can negatively impact rehabilitation and recovery.

Predicting rehabilitation outcomes after injury is particularly difficult in those with a progressive NTSCI, where the condition underlying the SCI leads to a deterioration over time compared to those with a non-progressive cause of NTSCI. The cause of NTSCI is an important predictor of outcomes, length of stay, and survival.

Considering the older age of many people with NTSCI, the various possible chronic health conditions that they may have, and that many NTSCI are incomplete, it can be very hard to predict the recovery from NTSCI. Making comparisons with traumatic SCI is also very hard for the same reasons.

Access to rehabilitation services

People with NTSCI have improved recovery outcomes when they are treated in a spinal-specific rehabilitation unit rather than in general rehabilitation. Clinicians agree that that a spinal rehabilitation unit that specializes in NTSCI is the ideal setting for treatment. However, there is a tendency for spinal rehabilitation units to give preference to traumatic SCI when admitting clients as NTSCI is considered less urgent and they may exclude older patients or those with metastatic cancer presumably referring them to gerontology and oncology units, respectively.

Concurrent treatment

Depending on the cause of the NTSCI, some people will undergo treatments for the underlying condition at the same time as rehabilitation. This could include surgeries, radiation therapy and chemotherapy for tumours, immunosuppressant medications for auto-immune conditions, antibiotics for bacterial infections, etc. The rehabilitation unit needs to be aware of these treatments for safety and to optimally plan treatments and rehabilitation therapy. Some treatments for underlying conditions can be draining and negatively impact rehabilitation if therapy is scheduled soon after.

Diagnosis of underlying cause

There is also a possibility for people with NTSCI to be admitted to rehabilitation without a diagnosis or with an incorrect diagnosis of the underlying condition. In these situations, rehabilitation clinicians and therapists may end up being involved in determining the correct diagnosis.

The bottom line

The many different types of NTSCI can be grouped into three categories: congenital, genetic, and acquired. Each will have their unique presentation and treatment needs. That said, the large majority of NTSCIs result from acquired conditions. In developed countries, most acquired NTSCIs are degenerative conditions and tumors, while developing countries tend to have a higher proportion from infection.

Those with NTSCI are more likely to be older, female, have paraplegia and have an incomplete injury when compared to those with traumatic SCI.

Much of NTSCI rehabilitation is similar to traumatic SCI rehabilitation, though the rehabilitation stay is shorter and less costly.

 

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Reference list

Parts of this page have been adapted from the SCIRE Professional “Rehabilitation Practices” Module available from: scireproject.com/evidence/rehabilitation-practices/factors-affecting-rehabilitation-outcomes/traumatic-vs-non-traumatic-sci/

Evidence for “What causes non-traumatic SCI?” is based on:

Molinares DM, Gater DR, Daniel S, Pontee NL. Nontraumatic Spinal Cord Injury: Epidemiology, Etiology and Management. J Pers Med. 2022 Nov 8;12(11):1872.

New PW, Reeves RK, Smith É, Eriks-Hoogland I, Gupta A, Scivoletto G, et al. International retrospective comparison of inpatient rehabilitation for patients with spinal cord dysfunction: Differences according to etiology presented in part to the international spinal cord society, September 2-5, 2012, London, United Kingdom. Arch Phys Med Rehabil. 2016 Mar 1;97(3):380–5.

New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord. 2014 Feb 8;52(2):123–32.

Klimo P, Rao G, Brockmeyer D. Congenital Anomalies of the Cervical Spine. Neurosurg Clin N Am. 2007 Jul;18(3):463–78.

Hart DJ. Syringomyelia. Encyclopedia of the Neurological Sciences. 2014 Jan 1;378–81.

Kuo DT, Tadi P. Cervical Spondylosis. In: StatPearls. StatPearls Publishing; 2023.

Evidence for “Who gets non-traumatic SCI?” is based on:

Cosar SNS, Yemisci OU, Oztop P, Cetin N, Sarifakioglu B, Yalbuzdag SA, et al. Demographic characteristics after traumatic and non-traumatic spinal cord injury: a retrospective comparison study. Spinal Cord 2010 48:12. 2010 May 4;48(12):862–6.

McCaughey EJ, Purcell M, McLean AN, Fraser MH, Bewick A, Borotkanics RJ, et al. Changing demographics of spinal cord injury over a 20-year period: a longitudinal population-based study in Scotland. Spinal Cord. 2016 Apr 13;54(4):270–6.

New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord 2013 52:2. 2013 Jan 15;52(2):97–109.

Niemi-Nikkola V, Koskinen E, Väärälä E, Kauppila AM, Kallinen M, Vainionpää A. Incidence of Acquired Nontraumatic Spinal Cord Injury in Finland: A 4-Year Prospective Multicenter Study. Arch Phys Med Rehabil. 2021 Jan;102(1):44–9.

Smith É, Fitzpatrick P, Lyons F, Morris S, Synnott K. Epidemiology of non-traumatic spinal cord injury in Ireland – a prospective population-based study. J Spinal Cord Med. 2022;45(1):76–81.

Choi Y, Leigh JH, Jeon J, Lee GJ, Shin HI, Bang MS. Trends in the Incidence and Etiology of Non-Traumatic Spinal Cord Injury in Korea: A Nationwide Population-Based Study From 2007 to 2020. J Korean Med Sci. 2023 May 5;38(18).

Cunha NSC, Malvea A, Sadat S, Ibrahim GM, Fehlings MG. Pediatric Spinal Cord Injury: A Review. Children. 2023 Sep 1;10(9).

Jain NB, Ayers GD, Peterson EN, Harris MB, Morse L, O’Connor KC, et al. Traumatic Spinal Cord Injury in the United States, 1993–2012. JAMA. 2015 Jun 6;313(22):2236

DeVivo MJ, Vogel LC. Epidemiology of spinal cord injury in children and adolescents. J Spinal Cord Med. 2004;27 Suppl 1.

Safdarian M, Trinka E, Rahimi-Movaghar V, Thomschewski A, Aali A, Abady GG, et al. Global, regional, and national burden of spinal cord injury, 1990–2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet Neurol. 2023 Nov 1;22(11):1026–47.

New PW, Epi MC, Biering-Sørensen F. Review of the History of Non-traumatic Spinal Cord Dysfunction. Top Spinal Cord Inj Rehabil. 2017 Sep 1;23(4):285.

Kennedy P, Hasson L. An audit of demographics and rehabilitation outcomes in non-traumatic spinal cord injury. Spinal Cord 2016 54:11. 2016 Mar 22;54(11):1020–4.

Evidence for “How does non-traumatic SCI present?” is based on:

New PW, Marshall R. International Spinal Cord Injury Data Sets for non-traumatic spinal cord injury. Spinal Cord. 2014 Feb 8;52(2):123–32.

New PW, Cripps RA, Bonne Lee B. Global maps of non-traumatic spinal cord injury epidemiology: towards a living data repository. Spinal Cord 2013 52:2. 2013 Jan 15;52(2):97–109.

McKinley WO, Seel RT, Gadi RK, Tewksbury MA. Nontraumatic vs. traumatic spinal cord injury : A rehabilitation outcome comparison. Am J Phys Med Rehabil. 2001;80(9):693–9.

Citterio A, Franceschini M, Spizzichino L, Reggio A, Rossi B, Stampacchia G. Nontraumatic spinal cord injury: An Italian survey. Arch Phys Med Rehabil. 2004 Sep 1;85(9):1483–7.

Dionne A, Richard-Denis A, Lim • Victor, Mac-Thiong JM. Factors associated with discharge destination following inpatient functional rehabilitation in patients with traumatic spinal cord injury. Spinal Cord. 2021;59:642–8.

Franceschini M, Bonavita J, Cecconi L, Ferro S, Pagliacci MC, Ferro S, et al. Traumatic spinal cord injury in Italy 20 years later: current epidemiological trend and early predictors of rehabilitation outcome. Spinal Cord 2020 58:7. 2020 Jan 29;58(7):768–77.

Halvorsen A, Pettersen AL, Nilsen SM, Halle KK, Schaanning EE, Rekand T. Non-traumatic spinal cord injury in Norway 2012–2016: analysis from a national registry and comparison with traumatic spinal cord injury. Spinal Cord. 2019 Apr 14;57(4):324–30.

McKinley WO, Conti-Wyneken AR, Vokac CW, Cifu DX. Rehabilitative functional outcome of patients with neoplastic spinal cord compression. Arch Phys Med Rehabil [Internet]. 1996 Sep 1;77(9):892–5.

Jeawon M, Hase B, Miller S, Eng J, Bundon A, Chaudhury H, et al. Exploring the Quality of Life of People with Incomplete Spinal Cord Injury Who Can Ambulate. Disabilities. 2023 Oct 6;3(4):455–76.

Jeawon M, Hase B, Miller S, Eng JJ, Bundon A, Chaudhury H, et al. Understanding the experiences, needs, and strengths of people with incomplete spinal cord injury who can ambulate. Disabil Rehabil. 2024 Jan 30;46(3):546–55.

Evidence for “How is non-traumatic SCI treated?” is based on:

New PW. Non-traumatic spinal cord injury: what is the ideal setting for rehabilitation? Australian Health Review. 2006;30(3):353.

New PW, Eriks-Hoogland I, Scivoletto G, Reeves RK, Townson A, Marshall R, et al. Important Clinical Rehabilitation Principles Unique to People with Non-traumatic Spinal Cord Dysfunction. Top Spinal Cord Inj Rehabil. 2017 Oct;23(4):299–312.

Image credits

  1. Baby by Nick Abrams
  2. Different types of spina bifida by Centers for Disease Control and Prevention, Public Domain
  3. DNA by Adrien Coquet
  4. old man by Gan Khoon Lay
  5. Spinal Tumors Illustration by Thom Graves, CMI; used with permission of Weill Cornell Medicine Neurological Surgery.
  6. The Blue Marble (remastered) NASA/Apollo 17 Crew, Public Domain
  7. TSCI/NTSCI 1 ©SCIRE
  8. TSCI/NTSCI 2 ©SCIRE

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.
May 14
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thumbnail with text: SCIRE Community Stories | Ainsley, Dan & Caleb on Nerve Transfer Surgery

Community Stories: Experiences of Nerve Transfer Surgery

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Authors: Kelsey Zhao, Dominik Zbogar | Published: 14 May 2024

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Nerve transfer surgery can restore movement to the paralyzed arm or hand of someone with a high-level spinal cord injury (SCI), by connecting a healthy nerve to the nerve of the paralyzed muscle.

There is much about nerve transfers that we don’t know but we can construct a nuanced view from the diverse experiences of people who have done the procedure. Ainsley, Dan, and Caleb graciously recount their experiences with nerve transfer surgeries, the obstacles they encountered, and the insights they have gleaned, for our readers.

Refer to our article on Nerve Transfer Surgery for more information!

Introducing…

Ainsley is 17 and plans on doing a Bachelor of Arts at the University of British Columbia after graduating high school this year!

SCI level: C5-C6 complete

Dan is 37 and a full-time student at Douglas College in Recreation Therapy! He enjoys cooking and has a dog.

SCI level: C5-C6 complete

Caleb is 35 and likes to spend his time outdoors and doing sports like scuba diving, whitewater kayaking and sitskiing!

SCI level: C5 complete

Nerve transfer options

Choosing to have surgery can be a tough decision. There are pros and cons to every procedure and a million factors to consider. 

Ainsley opted to have three nerve transfers on each arm: supinator nerve to posterior interosseous nerve (PIN) for hand opening, brachialis nerve to anterior interosseous nerve (AIN)/flexor digitorum superficialis (FDS) for hand closing, and teres minor nerve (with some deltoid) to triceps for elbow extension. Ainsley’s surgical team was able to do her surgeries 6 months after her SCI, during a holiday break from school. Keeping in mind that nerve transfers are not always successful, the nerves were carefully selected to make sure tendon transfers could be done as backups. This precaution paid off when the right-side hand closing nerve transfer didn’t work out.

Dan had two nerve transfers on each arm for finger extension and finger flexion. Unlike Caleb and Ainsley who had nerve transfers done only a few months after injury, Dan had been living with SCI for 5 years when he did the surgeries. Nerve transfer is not always possible for a chronic injury because the muscle might be too deteriorated to recover. However, it can still be an option if electrodiagnostic tests show that there is still activity in the muscle and nerve. Dan said, “they did a test to see whether my nerves were still viable, and they were.”

Caleb had three nerve transfers on both arms 5 months after his cervical SCI: supinator nerve to PIN for finger extension, brachialis nerve to AIN for finger flexion, and deltoid to triceps for elbow extension. In the first few months after his SCI, but before the nerve transfer surgeries, he had recovered good wrist function, but his fingers and triceps were not improving. At that point, he was told what the probability of getting hand function back was and decided that doing the nerve transfers was the best option. Caleb said, “Even if it works out slightly, it will still be better than not doing it”.

Recovery: the good and the bad

Although the evidence so far shows that nerve transfer surgery rarely causes any lasting harms, the general risks that accompany any surgical procedure do exist, and the recovery period can be challenging. Negative experiences do exist alongside the overall success of the procedure.

Ainsley had her nerve transfer surgeries while recovering from SCI at a rehabilitation centre. She stayed at the centre for a few days after the surgery but went home for the holiday season, then returned to continue rehabilitation. After the surgery, there was no cast, splint, or movement restrictions, but the incisions were quite large and painful for the first few days. Over time, the pain became more manageable with pain medication and the stitches dissolved, but it took two or three months before the incision scars stopped bothering her completely. For the first couple of weeks, Ainsley needed a lot of assistance with everyday tasks and had to be careful with big movements like getting dressed.

Because Ainsley used a power wheelchair, she was able to move around after the surgery like before, but she imagines it would be challenging for someone in a manual chair. Pain and loss of strength after surgery could make pushing a manual wheelchair difficult.

This was very true for Dan. After his nerve transfer surgery, he lost some muscle strength in his left hand and arm. He was still strong enough to push his chair but not to stop. As a result, he went from strictly using a manual chair to using a power wheelchair for about 10 months. The rest of Dan’s recovery did not go so smoothly either. He explains, “in my left arm, when I moved my arm in a certain way, I would get a twang. It felt like I hit my funny bone but times 100. It was really bad and that lasted about two weeks. I also had some numbness in my left thumb all the way down to my palm. I still have numbness but it’s mostly the tip of my thumb so it’s better.” On top of everything, Dan was living at home and not at a rehabilitation centre when he had his surgeries. He came to realize post-surgery that he did not have all the necessary supports in place to accommodate the temporary losses in function. Reflecting on these struggles, he suspects that since people with chronic SCI don’t get nerve transfers often, there is less awareness of how much the surgery can affect their functional abilities.

Like Ainsley, Caleb was living and recovering at a rehabilitation facility up until when his nerve transfer surgeries were done, and was able to extend his stay a bit to include the first few days of his surgical recovery. He had pain for one day after the nerve transfers were done, followed by the normal aches of surgery. Caleb was still pretty weak from his SCI accident, but he did not feel any difference in strength from before to after the surgery. All in all, nothing unexpected.

What stuck out the most to Caleb about recovery was the amount of time he spent imagining movements (visualization exercises) while no movement was actually happening! Coming from a big sports background, he understood what it meant to visualize actions and the benefits of the exercise. Even so, before the first signs of movement showed up, Caleb had moments where he thought, “Oh man, this is just not doing anything. Will it ever happen?”.

Good to have a back up plan

Around a year and a half after Ainsley’s nerve transfer surgeries, her hand closing was improved and strong in the left, but her right hand produced only a flicker of movement. With her surgeons, it was determined that her right hand was not improving further so Ainsley went ahead with Plan B – a tendon transfer for the thumb to index finger pinch grip. Ainsley describes the tendon transfer recovery as “hard” compared to nerve transfer because “I was in a cast and not allowed to move for 6 weeks”. In contrast, she was able to move around immediately after nerve transfer surgery with pain medications. That said, the tendon transfer was a success!

Where they are at today

Ainsley is now 2 years after the nerve transfers and has gained the ability to fully open both hands. On the left, her restored hand closing from nerve transfer is very strong and she can pick things up. The right-hand pinch gained from the tendon transfer is functional and continues to build strength. All these improvements in her fingers and hands mean that Ainsley can use her cell phone with finger gestures, scratch an itch, adjust her hair, and hold and use things like cutlery, a toothbrush, makeup, and bank cards. The triceps nerve transfer has recovered to the point where she can now extend both arms against gravity. These days, Ainsley is getting ready to hit the road in a custom hand control vehicle, something that would not have been possible if not for the triceps surgeries that improved her strength enough to turn a steering wheel. Hopeful for the future, Ainsley says that she is “still improving everyday”.

Dan is coming up on 3 years after the nerve transfers. Although his grip is not strong, it is strong enough that he can use and squeeze the brakes on the new e-bike attachment for his wheelchair, which he would not have been able to do without the nerve transfer. Being able to extend his fingers has made it much easier to open his hand to grasp things and move them around. He has more function in his hands then before, but he still has not recovered some of the strength he lost after the surgeries. Dan described how “Before the surgery I could lift a full backpack of groceries off of the back of my chair now I have difficulty if there’s any weight in my bag.” That said, he is still waiting to see how much he improves, explaining, “…it’s coming, it’s just not there yet. I think they say the plateau is four years for this surgery…”, referencing experts who say that improvements for nerve transfers typically reach their peak at around 4 years.

Even though Caleb is only 1 year and 3 months after the nerve transfer and still has a long way to go, he is already happy with the improvements. “Going from zero movement in my fingers to now, it’s kind of huge”. The first big impact the nerve transfers had in Caleb’s day-to-day life was probably around four months in, when he was able to open his hand to grab his toothbrush without any kind of assistance. He can now grab a toothbrush or pop can and hold on to it without a problem. His triceps progress has been harder to pin down. There is some movement in his left arm and a small amount in his right arm but he wonders if that would have come back naturally after SCI regardless of the nerve transfers. Whether or not the improvements came from the nerve transfers or from natural recovery, it has been a big help for Caleb’s mobility and being able to shift and transfer.

It is clear that the functions gained and the rate of recovery for nerve transfer surgeries can vary widely. However, what determines the success and speed of recovery after surgery is still an area of active research.

Advice and recommendations

There is a sense of excitement about nerve transfer surgeries and their potential for helping patients with SCI. The procedure has had many successes but so much research remains to be done to improve outcomes. Reflecting on their own journeys, Ainsley, Dan, and Caleb offered some words of advice on nerve transfers for both the clinicians who make them happen and the people who will need them in the future.

Ainsley encourages others to advocate for their treatment options. She and her family found a specific nerve transfer that they believed would be a good option for her, and worked closely with the surgical team. The results were good and Ainsley tells us that since then, that surgical team has had many successes with that same procedure on other people. Overall Ainsley believes that the surgery was “very much worth it. The benefits outweigh the cons, and I was very lucky that I had great surgeons”. Ainsley and her dad also strongly recommend considering tendon transfers as a backup for nerve transfers.

Dan offered some words of caution as a nerve transfer recipient with chronic SCI. He felt like he went into the surgery with rose-coloured glasses on, only to discover that the recovery was not seamless and there were many unforeseen obstacles. Having lived with an SCI for many years, Dan says, “…there were so many things that I had learned how to do in those five years that all of a sudden, I wasn’t able to do.” and he thinks the doctors did not realize these adaptations would be impacted by the surgery. He had the impression that he would “be able to do everything you could do before”, but in reality, he lost some abilities for a while, including being able to transfer and use a manual wheelchair.

Considering his rehabilitation, Dan wonders if more could be done at home. For example, he heard of other people who did a lot of functional electrical stimulation (FES) for their nerve transfer rehabilitation and proposed, “You can set up somebody to do FES by themselves on their arms, right?… The client can be shown how to do it… and do it at home.” On the other hand, Ainsley had the chance to try FES but found that even when working with an occupational therapist, it was too difficult to correctly place the electrodes. That said, rehabilitation is specific to the individual and what doesn’t work for one person might work for another!

Dan also suggested that rehabilitation after surgery could be more structured, “like a program that you do after the surgery, then for the next three months after”.

Having spoken with Dan about this before, Caleb agrees that following a program would be useful. He thinks his occupational and physical therapy team did a great job but a clear step-by-step handbook or video outlining the exercises and the braces used would be nice. While Caleb did exercises in rehabilitation, some videos of him were recorded for him to refer back to but he thinks it would also be beneficial to see someone demonstrate the exercises, like a guide.

When asked what he would say to someone considering nerve transfer, Caleb admits, “Because mine went so well, when I talk to people, I’m like yeah it went really good. It’s gonna be all benefit…”. Still, he recognizes that it does not go that well for everyone, adding that “it would be awesome to have this larger compilation of all the things that went well and didn’t go well (for different people), so that way, people could really see the options…”

All in all, we can see that every experience with nerve transfer surgery will be different; every person will encounter unique obstacles, surprises, and benefits. Even with all the research papers and educational resources, nothing can portray an experience in full colour quite like a conversation with a person who has been through it.

 

Videos of Ainsley, Dan, and Caleb demonstrating some of the movements and functions they have gained in rehabilitation after nerve transfer surgery.

Ainsley demonstrating functional recovery of hand opening and closing by using a fork to eat.
Ainsley demonstrating functional recovery of triceps shoulder extensions by reaching up to adjust a wall thermostat.
Dan demonstrating functional recovery of hand opening and closing by driving and squeezing the brakes on an e-bike wheelchair attachment.
Dan demonstrating functional recovery of hand opening and closing by opening and closing the lid on a jar.
Caleb demonstrating an elbow extension exercise for triceps nerve transfer rehabiliation.
Caleb demonstrating a hand opening exercise for supinator to PIN nerve transfer rehabilitation.

Jan 23
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Abstract schematic of Nerve Transfer Surgery

Nerve Transfer Surgery

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Author: Kelsey Zhao | Reviewer: Michael Berger, Christopher Doherty | Published: 23 January 2024 | Updated: ~

Key Points

  • Nerve transfer surgeries in SCI aim to restore some movement to the arm or hand by connecting a healthy nerve to the nerve of a paralyzed muscle.
  • This surgery is most commonly used to improve finger and thumb movement for people with cervical SCIs.
  • Depending on the type of injury, some nerve transfers are time-sensitive and must be done within 6 months, while others can be done years after the injury.
  • Experts recommend at least two years of physical and occupational therapy after a nerve transfer to rehabilitate the muscles.
  • Although the current evidence is limited, nerve transfers are a promising treatment for improving an individual’s independence and quality of life.

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What is nerve transfer surgery?

Spinal cord injury (SCI) disrupts the nerve pathways that send signals between the brain and muscles. This disruption can lead to loss of muscle strength and movement.

Nerve transfer surgery aims to restore some movement to a paralyzed muscle by connecting a nearby functional nerve from above the SCI to the non-functional nerve of the paralyzed muscle. The paralyzed muscle and its non-functional nerve are called the recipient. The functional nerve transferred to the recipient is called the donor. The donor nerve used is expendable (i.e. removing the nerve does not cause any significant loss of movement) or taken from an area where there is more than one muscle that performs the same movement. Over time and with rehabilitation, the healthy cells of the functional nerve will use the non-functional nerve as a scaffold to grow towards the paralyzed muscle. This creates a new pathway for signals to travel between the brain and the muscle.

simple diagram showing how the donor nerve is attached to the recipient nerve to re-innervate a paralyzed muscle in nerve transfer surgery

Nerve transfers involve the transfer of a functional donor nerve to a non-functional recipient nerve to create a new signal pathway to a paralyzed muscle.1

Why are nerve transfers done?

Since the success of nerve transfer techniques were demonstrated in other nerve injuries, like brachial plexus injury, they are now being applied to SCI. Nerve transfers are usually done after a cervical SCI to regain movement in the upper limbs. Some functions commonly targeted in nerve transfers include elbow extension, wrist extension, finger extension, finger flexion, and finger extension.

Table 1: Common nerve transfer surgeries and the donor/recipient nerves that can be used to restore each muscle function.2-5

Function
Donor
Recipient
 

Teres minor nerveTriceps nerve
Teres minor and motor portion of posterior division of axillary nerveTriceps nerve
Motor portion of posterior division of axillary nerveTriceps nerve
Fascicle of anterior division of axillary nerveTriceps nerve
 

Supinator nerveECRB (Extensor carpi radialis brevis) nerve
 

Supinator nervePIN (Posterior interosseous nerve)
 

Brachialis nerveAIN (Anterior interosseous nerve)
ECRB nerveAIN
Supinator nerveAIN
Fascicle to pronator teres nerveFDS (Flexor digitorum superficialis) nerve

Although wrist extension (bend wrist up) and wrist flexion (bend wrist down) can be targeted with nerve transfer, wrist movement is often reconstructed with tendon transfers instead. Learn more about tendon transfers in the How do nerve transfers compare to tendon transfers? section below.

Improved movement in the arms and hands can increase an individual’s independence and confidence in many areas of life, including daily activities, mobility, and socializing.

This YouTube video explains the basics of nerve transfer and tendon transfer surgeries, and the differences between the two. This video was created by Neramy Ganesan, a graduate of the University of Toronto MSc Biomedical Communications Program, with the help of content expert Dr. Jana Dengler at Sunnybrook Health Sciences Centre. Please see the end credits in the video for more details.6

Who is suitable for a nerve transfer?

Level of injury

Silhouette of a human bust overlayed with the spine and brachial plexus nerves. Spinal levels C2-C7 are labelled to show which spinal cord injury levels are potentially eligible for nerve transfer surgery.

Nerve transfers are usually done on cervical spinal cord injuries levels C5-C7.7

Nerve transfers are typically used to improve arm and hand function for people with higher level spinal cord injuries between C5 and C7. Keep in mind that since nerve transfers are a surgical treatment targeting movement, suitability is based on the level of muscle function. For example, someone with an incomplete SCI whose overall level of injury is C3, but C5 for muscle function, is more likely to be eligible for nerve transfer than someone whose level of injury is C3 for both sensory and muscle function.

Recent studies have shown some success with nerve transfers in injury levels up to C2, but more recovery of movement is associated with lower levels of cervical injury. Consideration for nerve transfer surgery in levels above C5 is made on a case-by-case basis, depending on what donor nerves are available.

Refer to our articles on Spinal Cord Anatomy and Spinal Cord Injury Basics for more information!

Nerve function and time since injury

Two types of neurons make up the nerve pathways that send movement signals to and from the brain and the muscles.

The ideal timing for how long after SCI a nerve transfer can be performed depends on whether the upper or the lower motor neurons in the nerve pathway of the paralyzed muscle are damaged. Which motor neurons are damaged is different for nerve pathways that exit the spinal cord (out to the muscle) at the level of injury and nerve pathways that exit below the level of injury.

Motor neurons at the level of injury

Often, both lower and upper motor neurons are damaged at and around the level of injury. The loss of a functional nerve in the muscle causes it to degenerate and atrophy (waste away). The muscle atrophy becomes irreversible 12-18 months after the injury, at which point a nerve transfer would be unable to restore any movement to the muscle. In this case, a nerve transfer should be done around 6 months after SCI, so that the donor nerve cells can reach the paralyzed muscle before the degeneration becomes irreversible.

Motor neurons below the level of injury

Below the SCI, often the upper motor neuron is damaged but the lower motor neuron that connects the muscle to the spinal cord is still intact. The nerve in the muscle is still functional, but you cannot control it because the connection to the brain is disrupted. The muscle is maintained by the activity of the functional nerve’s connection to the spinal cord so degeneration occurs more slowly. In this case, a nerve transfer may be possible for years after the injury, but patient selection is more specific and surgery outcomes are less predictable.

Diagram showing how a nerve transfer surgery can be time sensitive or not depending on whether there is an upper motor neuron injury or lower motor neuron injury.

The timing of nerve transfer after spinal cord injury depends on whether the nerve that connects to the muscle is damaged. If it is, the muscle will degenerate more quickly, and nerve transfer should be considered earlier.8

Other considerations

Some other factors to consider when deciding whether to do a nerve transfer surgery include:

  • Caregiver availability for the period after surgery when you will need extra support with daily activities.
  • Emotional/psychological supports.
  • Personal goals for function or recovery. Speak to your health care provider to determine whether a nerve transfer is suitable for your goals.
  • Transportation to the clinic or hospital for diagnostic testing, the surgery, and rehabilitation.
  • Other injuries in the arms, hands, or wrists or other neurological conditions that could increase the risk of complications in surgery and/or rehabilitation.
  • General considerations for surgery (e.g., open wounds, infection, high blood pressure, diabetes, heart and lung problems, extreme obesity, mental health).
  • SCI considerations for surgery (e.g., pressure sores, joint stiffness, spasticity, autonomic dysreflexia).

What is the process for a nerve transfer?

Illustration of the timeline for a time-sensitive nerve transfer after cervical spinal cord injury.

A timeline of the process for time-sensitive nerve transfer for a cervical spinal cord injury where the lower motor neuron of the recipient muscle is injured.9

Before surgery

The irreversible degeneration of muscle needs to be balanced with giving the nerves time to heal from the SCI. However, after 6 months, the probability of nerves recovering on their own becomes much less likely. The timing and type of nerve transfer ultimately depend on the nature of the SCI and what nerves are affected by the injury.

Suitability for nerve transfer is determined through physical examinations of muscle function and electrodiagnostic testing. Physical examination looks at the stability, strength and range of motion (how far you can move a limb in different directions) of the muscles and joints.

Electrodiagnostic tests may include the following:

Electromyography (EMG)

Electromyography measures the activity of nerves in a muscle by inserting a small needle electrode (similar to acupuncture) into the muscle tissue.

Nerve Conduction Studies

Nerve conduction studies measure the strength and speed of the signals travelling through a nerve by sending electrical pulses from a device and measuring with electrodes.

The combination of results from electrodiagnostic tests and physical exams is used to identify nerves and muscles that are functional /non-functional and figure out which muscles and nerves should be used in the nerve transfer. The tests could also determine if there is a possibility that the muscles will recover on their own and not require surgery. The results can also help to estimate what your timeline for surgery might look like.

During surgery

General anesthesia is given before the surgery. Electrical stimulation can be used to make sure the right nerves are being cut. Once the identities of the nerves are confirmed, the healthy nerve is cut and stitched to the cut end of the damaged nerve.

After surgery

In the 1-2 weeks following surgery, activity will be restricted to allow your skin and nerves to heal. After the period of rest, you can return to regular activity and begin intensive physical/occupational therapy. Even though the nerve transfer reconnects the pathway from the paralyzed muscle to the brain/spinal cord, it is not like plugging two extension cords together and having the current run through instantly. Attaching the two nerves allows the recipient nerve to act as a scaffold for the cells of the donor nerve to grow through, towards the muscle. This process can take months or years depending on the distance to the muscle because nerve cells grow at approximately 1mm per day.

Rehabilitation

After healing, you undergo intense physical therapy and occupational therapy to recover and maintain the muscle’s range of motion and strength, and to relearn how to move the muscle with the new nerve pathway. This rehabilitation process will teach you how to use the muscle properly and strengthen the muscles with a variety of exercises. Experts recommend that consistent therapy be continued for a minimum of 2 years.

Research on nerve transfers has found that people can continue to experience improvements in function as far as 4 years after the surgery with physical and occupational therapy.

Some activities to rehabilitate muscle function after nerve transfers include:

Early stage (no movement in the muscle yet)
    • Education: Understanding which muscles and nerves are involved in the nerve transfer and how the surgery has changed the way they work.
    • Range of motion: Exercises to maintain how far the muscle can move in different directions. Splints may be used to manage range of motion and spasticity.
    • Donor activation: Physically moving the donor muscle to activate the donor nerve.
    • Visualization: Moving the donor muscle and visualizing moving the recipient muscle. This is an important exercise in early rehabilitation.
    • Donor co-contraction: Moving the donor muscle and having someone else move the recipient muscle at the same time to strengthen the connection between the nerve and the new movement.
After first sign of muscle movement
    • Donor co-contraction: Moving the donor muscle and recipient muscle at the same time to strengthen the nerve connection.
    • Moving only the recipient muscle.
    • Exercises based on real life activities.
    • Doing exercises in water or with assistive devices like slings and prostheses can make movements easier by reducing the effect of gravity.
    • Biofeedback or neuromuscular electrical stimulation (NMES) may be used to promote movement.
Strength and endurance
    • Gradually increased resistance of exercises (adding weights).
    • Gradually increased repetitions of exercises.
    • Incorporating function of muscle into everyday life.

Visualization for muscle rehabilitation

Visualization (also known as mental practice, mental imagery, and motor imagery) is a technique where you consciously and repeatedly imagine performing a movement without actually moving your body. One theory for why this technique works is that visualizing a movement activates areas of the brain that overlap significantly with the areas that activate when physically doing the movement.

Studies of people without SCI and athletes who use visualization when learning new skills have shown that physical movement performance improves. In rehabilitation for neurological disorders, including SCI, evidence from high-quality studies has shown that visualization used in combination with physical therapy has positive effects on muscle movement.

How do nerve transfers compare to tendon transfers?

Tendons are rope-like bands that connect your muscles to your bones. In a tendon transfer, the tendon of a healthy muscle with functional nerves is cut and attached to the tendon of a paralyzed muscle. This transfer allows the working muscle to take over the movement of the paralyzed muscle. This is another way that movement can be restored in the arm or hand for someone with tetraplegia.

simple diagram of tendon transfer surgery

Tendon transfers involve using a working muscle to power a paralyzed muscle movement by transferring the tendon of the working muscle to the paralyzed muscle.10

Nerve transfers and tendon transfers can also be used in combination to restore movement. Patients in one study who underwent both nerve transfer and tendon transfer reported no preference because each was beneficial in a different way. Hands with nerve transfers resulted in more natural and dexterous movement, and hands with tendon transfers felt stronger. Each has characteristics that make the procedure more or less suitable for an individual depending on their injury, timing, and recovery goals.

Table 2: Comparison of nerve transfers and tendon transfers

Nerve Transfer
Tendon Transfer
What kind of movement is improved?
More precise, controlled movements that do not require as much strength.Stronger movements that do not require as much precise coordination.
What kind of activities could this surgery help with?
• Using devices like a phone, keyboard, mouse, or touchscreen.
• Social interactions like a handshake or hug
• Eating and drinking independently
• Holding light objects
• Pressure relief movements
• Some self-catheterization steps		• Lifting and holding heavy objects
• Wheelchair pushing and maneuvering
• Eating and drinking independently
• Dressing
• Improved transfers
• Personal hygiene
• Writing
When can I get this surgery?
Depending on your injury, this surgery is usually done around 6 months after SCI, or could be done years later in some cases.Any time after SCI.
How long does healing take?
You can do light activities immediately after surgery while your skin heals.
You can return to normal activities after 2-4 weeks.
Avoid weight-bearing, repetitive, or straining activities for 1 month.		A splint and cast will be used to immobilize your arm for 1-2 months while the tendon heals.
Avoid weight-bearing activities and sports for 2-3 months.
Some centres may start physical/occupational therapy exercises days after surgery, during the immobilization period.
How long will rehabilitation take?
Daily exercises at home and physical/occupational therapy at least once per month for 2 years.Approximately 3 months
Physical/occupational therapy helps you to learn the new movement and makes sure the tendons heal properly.
How long will it take to see movement?
First improvements in movement usually happen between 3 to 12 months, depending on the type of nerve transfer. There are accounts of initial movement recovery as late as 2.5 years after surgery.
Research shows that movement may continue to improve for years after surgery.		Improvements in movement usually occur between 1-3 months after surgery.
Research shows that movement may continue to improve for up to 12 months after surgery.

What are the risks of nerve transfers?

Like with any other surgery, there is a risk of bleeding, infection, and other complications in the healing process. Some people who get a nerve transfer experience temporary weakness in the wrist after surgery that usually returns to normal strength during recovery. Similarly, there may be areas of numbness that develop that often go away over time. So far, the evidence shows that nerve transfer surgeries are safe, and people rarely experience permanent losses in movement or sensation because of the surgery.

Having to rely on others to carry out normal daily activities for a period after surgery can be challenging. A strong social support system and mental health supports can be helpful for recovery.

What are the limitations of nerve transfers?

Some people feel disappointment and frustration with the slow pace at which improvements are made after a nerve transfer. It is important to set realistic expectations going into a nerve transfer. That said, even small improvements in function can have significant impacts on independence and confidence.

As with any surgery, there is a possibility that the nerve transfer surgery does not work. If a nerve transfer fails to restore any function to a paralyzed muscle after physical and occupational therapy, it may be possible to do a tendon transfer to try and regain that movement.

The reasons why a nerve transfer succeeds or fails are still an ongoing area of research. Expert opinion suggests that timing (i.e. when in the recovery process the surgery takes place), and the frequency and intensity of physical and occupational therapy influence how successful a nerve transfer is.

Future research directions for nerve transfer surgery

Although nerve transfers are available to people with SCI as a treatment option, it is still a relatively new area of ongoing research.

Some of the research underway in the realm of nerve transfer surgery include:

  • Exploring the possible application of nerve transfer techniques on diaphragm paralysis to reduce ventilator dependence.
  • The use of electrical stimulation in combination with nerve transfer to strengthen the nerve connections.
  • Research to better understand what factors may influence the success of a nerve transfer.
  • A multi-centre Canadian study is currently looking at the effect of nerve transfers on functional results like the ability to pick up an object, eat independently, self-catheterize etc.

Are nerve transfers effective?

There is some evidence that a successful nerve transfer surgery in combination with consistent physical/occupational therapy can lead to increases in the movement, control, and strength of a paralyzed muscle. In recent studies, the nerve transfer surgeries performed were 87.5 – 92% successful at recovering some strength. Better outcomes were seen in people with lower levels of cervical SCI, a greater range of motion and strength in the donor muscle, and more activity in the recipient muscle. More research evidence is needed, but experts are hopeful that nerve transfers can improve the ability to do daily activities such as inserting catheters, relieving pressure, holding and releasing items, and eating. That said, there is some limited evidence that reports people who undergo nerve transfers can experience increases in overall independence and quality of life. It is possible to see improvements for many years after the surgery with continued physical/occupational therapy.

Lived experiences of nerve transfer

Read Caleb, Ainsley, and Dan’s full interviews in the full article: Community Stories – Experiences of Nerve Transfer Surgery.

Caleb: Nerve Transfer Trifecta

Age: 35
Level of Injury: C5 ASIA A
Fun fact: Caleb enjoys scuba diving, whitewater kayaking and sitskiing!

Caleb had three nerve transfers on each arm for finger extension, finger flexion, and elbow extension 5 months after SCI. It has been 1 year and 3 months since his surgery.

Three months after the surgery, Caleb started to see flickers of movement. There was some loss in strength after the surgery, but at the time he was still weak from the accident that caused his SCI. Caleb can now grip a 5lb kettle bell, while his triceps is still at a flicker but continues to recover. Caleb plans to continue building his finger extension and grip strength to improve his chair skills and everyday living activities. He is hoping that with time, his triceps will have the strength to help with transfers. Overall, Caleb says, “I am very impressed with the whole team and happy with the results!”.

Ainsley: Nerve and Tendon Transfers

Age: 17
Level Of Injury: C5-C6 complete
Fun fact: Ainsley plans on doing a Bachelor of Arts at the University of British Columbia after graduating high school this year!

Ainsley had three nerve transfers on each arm for hand opening, hand closing, and elbow extension 6 months after SCI. She is now at 2 years post nerve transfer. Ainsley has also had a tendon transfer on the right side.

After the surgery, Ainsley could move around right away but had to be careful and was on strong pain medications because of the many incisions. Scar management was important to heal the incisions with minimal scarring and avoid complications. After 2-3 months of visualization exercises, Ainsley noticed the first flickers of movement. By 5-6 months she was using her left hand for tasks. Unfortunately, her right hand didn’t progress beyond a flicker, so Ainsley and her team decided to do a tendon transfer for that side. Ainsley found that the recovery for tendon transfer was more difficult because she was in a cast for 1.5 months and not allowed to move. Today, Ainsley can open both hands, pick things up with her left hand, and extend both arms against gravity. She continues to improve every day but recalls that even before the surgery, “I definitely knew that I had to put in the work to make it stronger.”

Dan: Nerve Transfer with a Chronic Injury

Age: 37
Level of Injury: C5-C6 ASIA B
Fun fact: Dan is a full-time student at Douglas College in Recreation Therapy! He enjoys cooking and has a dog.

Dan had nerve transfers on both arms for finger flexion and extension 5 years after his SCI. He’s coming up on 3 years post nerve transfer.

Recalling some of the effects right after the surgery, Dan described numbness, loss of strength, and two weeks of pain when raising his arm that “felt like I hit my funny bone but times 100”. Dan’s recovery from nerve transfer was tough and didn’t line up with the picture the surgeons and doctors painted. Because nerve transfers are done more on acute SCIs than chronic SCIs, he suspects the doctors were not aware of how much the surgery could affect the independence of someone living in the community without the supports that exist in in-patient rehabilitation. There needed to be more preparation to accommodate the losses in function he experienced. Considering his rehabilitation, he says, “…you’re on your own so I think it would be better if there was something more – like a program that you do for three months after the surgery”.

Three years after the surgery, the numbness and pain from right after surgery have improved, but the losses in strength have persisted. Dan says, “I still have difficulty doing some things that I used to do before the surgery, but not too much.” That said, he has gained the ability to open and extend his fingers and has enough grip to squeeze the hand brakes of the electric bike attachment on his wheelchair.

The bottom line

Overall, the research on nerve transfer surgeries suggests that it can improve arm/hand muscle function and independence for people with cervical SCI, and that the procedure is safe. However, this is an invasive procedure, so the evidence is limited because it is usually not possible to have randomization or a control group to experimentally demonstrate the benefits.

Extensive assessments are required to determine whether a nerve transfer could work for you. It is important to keep in mind that it may take years of physical/occupational therapy to see the full results of the treatment. There are also external factors to consider, including if you can take time off work/school for recovery, if you have adequate care and support, if you are mentally well enough to have surgery, and what your personal goals are for function. If you are interested in nerve transfer, speak to your health care provider to determine if it’s the right fit for your goals and your injury.

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Related resources

Nerve and Tendon Transfers to Improve Upper Limb Function in Cervical Spinal Cord Injury (video)

SCIRE Professional “Upper Limb” Module

Reference list

Evidence for “What is nerve transfer surgery?” is based on:

Ahuja, C. S., Wilson, J. R., Nori, S., Kotter, M. R. N., Druschel, C., Curt, A., & Fehlings, M. G. (2017). Traumatic spinal cord injury. Nature Reviews Disease Primers, 3(1), 17018. https://doi.org/10.1038/nrdp.2017.18

Hill, E. J. R., & Fox, I. K. (2019). Current Best Peripheral Nerve Transfers for Spinal Cord Injury. Plastic & Reconstructive Surgery, 143(1), 184e–198e. https://doi.org/10.1097/PRS.0000000000005173

Evidence for “What can nerve transfers help with?” is based on:

Mahar, M., & Cavalli, V. (2018). Intrinsic mechanisms of neuronal axon regeneration. Nature Reviews Neuroscience, 19(6), 323–337. https://doi.org/10.1038/s41583-018-0001-8

Bazarek, S., & Brown, J. M. (2020). The evolution of nerve transfers for spinal cord injury. Experimental Neurology, 333, 113426. https://doi.org/10.1016/j.expneurol.2020.113426

Bunketorp-Käll, L., Reinholdt, C., Fridén, J., & Wangdell, J. (2017). Essential gains and health after upper-limb tetraplegia surgery identified by the International classification of functioning, disability and health (ICF). Spinal Cord, 55(9), 857–863. https://doi.org/10.1038/sc.2017.36

Evidence for Table 1 is based on:

Bazarek, S., & Brown, J. M. (2020). The evolution of nerve transfers for spinal cord injury. Experimental Neurology, 333, 113426. https://doi.org/10.1016/j.expneurol.2020.113426

Galea, M., Messina, A., Hill, B., Cooper, C., Hahn, J., & van Zyl, N. (2020). Reanimating hand function after spinal cord injury using nerve transfer surgery. Advances in Clinical Neuroscience & Rehabilitation, 20(2), 17–19. https://doi.org/10.47795/CQZF2655

Evidence for “Who is suitable for a nerve transfer?” is based on:

Khalifeh, J. M., Dibble, C. F., Van Voorhis, A., Doering, M., Boyer, M. I., Mahan, M. A., Wilson, T. J., Midha, R., Yang, L. J. S., & Ray, W. Z. (2019a). Nerve transfers in the upper extremity following cervical spinal cord injury. Part 1: Systematic review of the literature. Journal of Neurosurgery: Spine, 31(5), 629–640. https://doi.org/10.3171/2019.4.SPINE19173

Dengler, J., Mehra, M., Steeves, J. D., Fox, I. K., Curt, A., Maier, D., Abel, R., Weidner, N., Rupp, R., Vidal, J., Benito, J., Kalke, Y.-B., Curtin, C., Kennedy, C., Miller, A., Novak, C., Ota, D., & Stenson, K. C. (2021). Evaluation of Functional Independence in Cervical Spinal Cord Injury: Implications for Surgery to Restore Upper Limb Function. The Journal of Hand Surgery, 46(7), 621.e1-621.e17. https://doi.org/10.1016/j.jhsa.2020.10.036

Kirshblum, S. C., Burns, S. P., Biering-Sorensen, F., Donovan, W., Graves, D. E., Jha, A., Johansen, M., Jones, L., Krassioukov, A., Mulcahey, M. J., Schmidt-Read, M., & Waring, W. (2011). International standards for neurological classification of spinal cord injury (Revised 2011). The Journal of Spinal Cord Medicine, 34(6), 535–546. https://doi.org/10.1179/204577211X13207446293695

Javeed, S., Dibble, C. F., Greenberg, J. K., Zhang, J. K., Khalifeh, J. M., Park, Y., Wilson, T. J., Zager, E. L., Faraji, A. H., Mahan, M. A., Yang, L. J., Midha, R., Juknis, N., & Ray, W. Z. (2022). Upper Limb Nerve Transfer Surgery in Patients With Tetraplegia. JAMA Netw Open, 5(11), e2243890-. https://doi.org/10.1001/jamanetworkopen.2022.43890

Khalifeh, J. M., Dibble, C. F., Van Voorhis, A., Doering, M., Boyer, M. I., Mahan, M. A., Wilson, T. J., Midha, R., Yang, L. J. S., & Ray, W. Z. (2019b). Nerve transfers in the upper extremity following cervical spinal cord injury. Part 2: Preliminary results of a prospective clinical trial. Journal of Neurosurgery: Spine, 31(5). https://doi.org/10.3171/2019.4.SPINE19399

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Stanley, E. A., Hill, B., McKenzie, D. P., Chapuis, P., Galea, M. P., & N, van Z. (2022). Predicting strength outcomes for upper limb nerve transfer surgery in tetraplegia. J Hand Surg Eur Vol, 47(11), 1114–1120. https://doi.org/10.1177/17531934221113739

Berger, M. J., Dengler, J., Westman, A., Curt, A., Schubert, M., Abel, R., Weidner, N., Röhrich, F., & Fox, I. K. (2023). Nerve transfer after cervical spinal cord injury: Who has a “time sensitive” injury based on electrodiagnostic findings? Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2023.11.003

Bryden, A. M., Hoyen, H. A., Keith, M. W., Mejia, M., Kilgore, K. L., & Nemunaitis, G. A. (2016). Upper Extremity Assessment in Tetraplegia: The Importance of Differentiating Between Upper and Lower Motor Neuron Paralysis. Archives of Physical Medicine and Rehabilitation, 97(6), S97–S104. https://doi.org/10.1016/j.apmr.2015.11.021

Castanov, V., Berger, M., Ritsma, B., Trier, J., & Hendry, J. M. (2021). Optimizing the Timing of Peripheral Nerve Transfers for Functional Re-Animation in Cervical Spinal Cord Injury: A Conceptual Framework. Journal of Neurotrauma, 38(24), 3365–3375. https://doi.org/10.1089/neu.2021.0247

Hill, E. J. R., & Fox, I. K. (2019). Current Best Peripheral Nerve Transfers for Spinal Cord Injury. Plastic & Reconstructive Surgery, 143(1), 184e–198e. https://doi.org/10.1097/PRS.0000000000005173

Jain, N. S., Hill, E. J. R., Zaidman, C. M., Novak, C. B., Hunter, D. A., Juknis, N., Ruvinskaya, R., Kennedy, C. R., Vetter, J., Mackinnon, S. E., & Fox, I. K. (2020). Evaluation for Late Nerve Transfer Surgery in Spinal Cord Injury: Predicting the Degree of Lower Motor Neuron Injury. J Hand Surg Am, 45(2), 95–103. https://doi.org/10.1016/j.jhsa.2019.11.003

Fox, I. K., Novak, C. B., Krauss, E. M., Hoben, G. M., Zaidman, C. M., Ruvinskaya, R., Juknis, N., Winter, A. C., & Mackinnon, S. E. (2018). The Use of Nerve Transfers to Restore Upper Extremity Function in Cervical Spinal Cord Injury. PM&R, 10(11), 1173. https://doi.org/10.1016/j.pmrj.2018.03.013

Evidence for “What is the process for a nerve transfer?” is based on:

Dengler, J., Steeves, J. D., Curt, A., Mehra, M., Novak, C. B., & Fox, I. K. (2022). Spontaneous Motor Recovery after Cervical Spinal Cord Injury: Issues for Nerve Transfer Surgery Decision Making. Spinal Cord, 60(10), 922–927. https://doi.org/10.1038/s41393-022-00834-6

Hill, E. J. R., & Fox, I. K. (2019). Current Best Peripheral Nerve Transfers for Spinal Cord Injury. Plastic & Reconstructive Surgery, 143(1), 184e–198e. https://doi.org/10.1097/PRS.0000000000005173

Kane, N. M., & Oware, A. (2012). Nerve conduction and electromyography studies. Journal of Neurology, 259(7), 1502–1508. https://doi.org/10.1007/s00415-012-6497-3

Berger, M. J., Dengler, J., Westman, A., Curt, A., Schubert, M., Abel, R., Weidner, N., Röhrich, F., & Fox, I. K. (2023). Nerve transfer after cervical spinal cord injury: Who has a “time sensitive” injury based on electrodiagnostic findings? Archives of Physical Medicine and Rehabilitation. https://doi.org/10.1016/j.apmr.2023.11.003

Bersch, I., & Fridén, J. (2020). Upper and lower motor neuron lesions in tetraplegia: implications for surgical nerve transfer to restore hand function. J Appl Physiol (1985), 129(5), 1214–1219. https://doi.org/10.1152/japplphysiol.00529.2020

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Fox, I. K., Miller, A. K., & Curtin, C. M. (2018). Nerve and Tendon Transfer Surgery in Cervical Spinal Cord Injury: Individualized Choices to Optimize Function. Topics in Spinal Cord Injury Rehabilitation, 24(3), 275–287. https://doi.org/10.1310/sci2403-275

Kahn, L. C., Evans, A. G., Hill, E. J. R., & Fox, I. K. (2022). Donor activation focused rehabilitation approach to hand closing nerve transfer surgery in individuals with cervical level spinal cord injury. Spinal Cord Ser Cases, 8(1), 47. https://doi.org/10.1038/s41394-022-00512-y

Aguirre-Güemez, A. V, Mendoza-Muñoz, M., Jiménez-Coello, G., Rhoades-Torres, G. M., Pérez-Zavala, R., Barrera-Ortíz, A., & Quinzaños-Fresnedo, J. (2021). Nerve transfer rehabilitation in tetraplegia: Comprehensive assessment and treatment program to improve upper extremity function before and after nerve transfer surgery, a case report. J Spinal Cord Med, 44(4), 621–626. https://doi.org/10.1080/10790268.2019.1660841

Javeed, S., Dibble, C. F., Greenberg, J. K., Zhang, J. K., Khalifeh, J. M., Park, Y., Wilson, T. J., Zager, E. L., Faraji, A. H., Mahan, M. A., Yang, L. J., Midha, R., Juknis, N., & Ray, W. Z. (2022). Upper Limb Nerve Transfer Surgery in Patients With Tetraplegia. JAMA Netw Open, 5(11), e2243890-. https://doi.org/10.1001/jamanetworkopen.2022.43890

Larocerie-Salgado, J., Chinchalkar, S., Ross, D. C., Gillis, J., Doherty, C. D., & Miller, T. A. (2022). Rehabilitation Following Nerve Transfer Surgery. Techniques in Hand & Upper Extremity Surgery, 26(2), 71–77. https://doi.org/10.1097/BTH.0000000000000359

Opsommer, E., Chevalley, O., & Korogod, N. (2020). Motor imagery for pain and motor function after spinal cord injury: a systematic review. Spinal Cord, 58(3), 262–274. https://doi.org/10.1038/s41393-019-0390-1

Evidence for “How do nerve transfers compare to tendon transfers?” is based on:

Bazarek, S., & Brown, J. M. (2020). The evolution of nerve transfers for spinal cord injury. Experimental Neurology, 333, 113426. https://doi.org/10.1016/j.expneurol.2020.113426

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Evidence for Table 2 is based on:

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Aguirre-Güemez, A. V, Mendoza-Muñoz, M., Jiménez-Coello, G., Rhoades-Torres, G. M., Pérez-Zavala, R., Barrera-Ortíz, A., & Quinzaños-Fresnedo, J. (2021). Nerve transfer rehabilitation in tetraplegia: Comprehensive assessment and treatment program to improve upper extremity function before and after nerve transfer surgery, a case report. J Spinal Cord Med, 44(4), 621–626. https://doi.org/10.1080/10790268.2019.1660841

Kahn, L. C., Evans, A. G., Hill, E. J. R., & Fox, I. K. (2022). Donor activation focused rehabilitation approach to hand closing nerve transfer surgery in individuals with cervical level spinal cord injury. Spinal Cord Ser Cases, 8(1), 47. https://doi.org/10.1038/s41394-022-00512-y

Bunketorp-Käll, L., Reinholdt, C., Fridén, J., & Wangdell, J. (2017). Essential gains and health after upper-limb tetraplegia surgery identified by the International classification of functioning, disability and health (ICF). Spinal Cord, 55(9), 857–863. https://doi.org/10.1038/sc.2017.36

Fox, I. K., Miller, A. K., & Curtin, C. M. (2018). Nerve and Tendon Transfer Surgery in Cervical Spinal Cord Injury: Individualized Choices to Optimize Function. Topics in Spinal Cord Injury Rehabilitation, 24(3), 275–287. https://doi.org/10.1310/sci2403-275

Dunn, J. A., Sinnott, K. A., Rothwell, A. G., Mohammed, K. D., & Simcock, J. W. (2016). Tendon Transfer Surgery for People With Tetraplegia: An Overview. Archives of Physical Medicine and Rehabilitation, 97(6), S75–S80. https://doi.org/10.1016/j.apmr.2016.01.034

Javeed, S., Dibble, C. F., Greenberg, J. K., Zhang, J. K., Khalifeh, J. M., Park, Y., Wilson, T. J., Zager, E. L., Faraji, A. H., Mahan, M. A., Yang, L. J., Midha, R., Juknis, N., & Ray, W. Z. (2022). Upper Limb Nerve Transfer Surgery in Patients With Tetraplegia. JAMA Netw Open, 5(11), e2243890-. https://doi.org/10.1001/jamanetworkopen.2022.43890

Evidence for “What are the risks of nerve transfers?” is based on:

Francoisse, C. A., Russo, S. A., Skladman, R., Kahn, L. C., Kennedy, C., Stenson, K. C., Novak, C. B., & Fox, I. K. (2022). Quantifying Donor Deficits Following Nerve Transfer Surgery in Tetraplegia. J Hand Surg Am, 47(12), 1157–1165. https://doi.org/10.1016/j.jhsa.2022.08.014

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Bertelli, J. A., & Ghizoni, M. F. (2017). Nerve transfers for restoration of finger flexion in patients with tetraplegia. Journal of Neurosurgery: Spine, 26(1), 55–61. https://doi.org/10.3171/2016.5.SPINE151544

Wilson, T. J. (2019). Novel Uses of Nerve Transfers. Neurotherapeutics, 16(1), 26–35. https://doi.org/10.1007/s13311-018-0664-x Khalifeh, J. M., Dibble, C. F., Van Voorhis, A., Doering, M., Boyer, M. I., Mahan, M. A., Wilson, T. J., Midha, R., Yang, L. J. S., & Ray, W. Z. (2019a). Nerve transfers in the upper extremity following cervical spinal cord injury. Part 1: Systematic review of the literature. Journal of Neurosurgery: Spine, 31(5), 629–640. https://doi.org/10.3171/2019.4.SPINE19173

Mooney, A., Hewitt, A. E., & Hahn, J. (2021). Nothing to lose: a phenomenological study of upper limb nerve transfer surgery for individuals with tetraplegia. Disabil Rehabil, 43(26), 3748–3756. https://doi.org/10.1080/09638288.2020.1750716

Hill, E. J. R., & Fox, I. K. (2019). Current Best Peripheral Nerve Transfers for Spinal Cord Injury. Plastic & Reconstructive Surgery, 143(1), 184e–198e. https://doi.org/10.1097/PRS.0000000000005173

Evidence for “What are the limitations of nerve transfers?” is based on:

Mooney, A., Hewitt, A. E., & Hahn, J. (2021). Nothing to lose: a phenomenological study of upper limb nerve transfer surgery for individuals with tetraplegia. Disabil Rehabil, 43(26), 3748–3756. https://doi.org/10.1080/09638288.2020.1750716

Hill, E. J. R., & Fox, I. K. (2019). Current Best Peripheral Nerve Transfers for Spinal Cord Injury. Plastic & Reconstructive Surgery, 143(1), 184e–198e. https://doi.org/10.1097/PRS.0000000000005173

Heredia Gutiérrez, A., Cachón Cámara, G. E., González Carranza, V., Torres García, S., & Chico Ponce de León, F. (2020). Phrenic nerve neurotization utilizing half of the spinal accessory nerve to the functional restoration of the paralyzed diaphragm in high spinal cord injury secondary to brain tumor resection. Child’s Nervous System, 36(6), 1307–1310. https://doi.org/10.1007/s00381-019-04490-9

Bazarek, S., & Brown, J. M. (2020). The evolution of nerve transfers for spinal cord injury. Experimental Neurology, 333, 113426. https://doi.org/10.1016/j.expneurol.2020.113426

Evidence for “Are nerve transfers effective?” is based on:

Javeed, S., Dibble, C. F., Greenberg, J. K., Zhang, J. K., Khalifeh, J. M., Park, Y., Wilson, T. J., Zager, E. L., Faraji, A. H., Mahan, M. A., Yang, L. J., Midha, R., Juknis, N., & Ray, W. Z. (2022). Upper Limb Nerve Transfer Surgery in Patients With Tetraplegia. JAMA Netw Open, 5(11), e2243890-. https://doi.org/10.1001/jamanetworkopen.2022.43890

Khalifeh, J. M., Dibble, C. F., Van Voorhis, A., Doering, M., Boyer, M. I., Mahan, M. A., Wilson, T. J., Midha, R., Yang, L. J. S., & Ray, W. Z. (2019b). Nerve transfers in the upper extremity following cervical spinal cord injury. Part 2: Preliminary results of a prospective clinical trial. Journal of Neurosurgery: Spine, 31(5). https://doi.org/10.3171/2019.4.SPINE19399

Stanley, E. A., Hill, B., McKenzie, D. P., Chapuis, P., Galea, M. P., & N, van Z. (2022). Predicting strength outcomes for upper limb nerve transfer surgery in tetraplegia. J Hand Surg Eur Vol, 47(11), 1114–1120. https://doi.org/10.1177/17531934221113739

van Zyl, N., Hill, B., Cooper, C., Hahn, J., & Galea, M. P. (2019). Expanding traditional tendon-based techniques with nerve transfers for the restoration of upper limb function in tetraplegia: a prospective case series. Lancet, 394(10198), 565–575. https://doi.org/10.1016/S0140-6736(19)31143-2

Image credits

  1. Nerve Transfer by SCIRE
  2. Elbow Extension by SCIRE
  3. Wrist Extension by SCIRE
  4. Finger Extension by SCIRE
  5. Finger Flexion and Pinch by SCIRE
  6. Nerve and Tendon Transfers to Improve Upper Limb Function in Cervical Spinal Cord Injury (video)
  7. Nerve Transfer Level of Injury by SCIRE
  8. Time Sensitive Nerve Transfers by SCIRE
  9. Nerve Transfer Timeline by SCIRE
  10. Tendon Transfer by SCIRE
  11. Photo provided by participant (Caleb)
  12. Photo provided by participant (Ainsley)
  13. Photo provided by participant (Dan)

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.

Oct 18
0

Adapted Sports and Equipment

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Author: Sharon Jang | Reviewer: Courtney Pollock | Published: 18 October 2023 | Updated: ~

Key Points

  • Staying active after SCI has many benefits, but structured workouts may not be for everyone. Sports may be a good alternative to stay physically active.
  • Adapted sports (sometimes called “adaptive sports”) are sports that use modified equipment to allow individuals of all abilities to participate.
  • Participating in adapted sports is a great way to build social connections with others and to become a part of a community.
  • There are a variety of sports that can be played including cycling, court sports, winter sports, and water sports. This article introduces various adapted sports and the required equipment to partake in them.

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Why be physically active after SCI?

Staying physically active after SCI is important for your health. There is moderate to strong evidence that physical activity has many benefits after SCI including:

  • Allowing you to perform everyday activities (e.g., shopping, cooking, transferring) with more ease,
  • Improving depression and quality of life,
  • Increasing muscle strength and endurance,
  • Management of blood sugar levels,
  • Helping you to breathe with more ease,
  • Reducing pain and spasticity.

Although going to a gym is one common way to get moving, there are a variety of adapted sports that can also be played. While this article discusses a selection of adapted sports (including handcycling, court sports, winter sports, and water sports), it should be noted that almost any sport can be adapted for participation after SCI.

Refer to our article on Physical Activity for more information!

What are adapted sports?

Adapted sports are sports that can be played with equipment and approaches that are adapted to a person’s physical abilities. Many adapted sports have been altered in one of many ways to promote accessibility. Some of these adaptations include changes to the rules of a game, modifications in the equipment, or specialized equipment to allow you to partake in a sport.

Athlete Classification

There are different levels of adapted sports, ranging from recreational (or just for fun and fitness) to competition. Should you want to become competitive, classifications are used to ensure that competition is equal and fair. Classifications are used to determine which athletes should be grouped together. In adapted sports, classification is based on function (e.g., strength, how many limbs are affected by injury, range of movement, tone/spasticity). This is similar to categorizing by age, gender, or weight in able-bodied sports.

Precautions when trying new sports

While trying out new sports can be fun and exciting, skin health is an important consideration. Trialing new sports is often associated with trying new equipment. When trying new equipment, it is important to check for red marks or pressure spots on your skin including your seat and any area of the body positioned against equipment (e.g., footrest or frame). People will commonly use the cushion from their everyday chair in their sport chair when they first try a sport. However, it is important to remember that although it is the same cushion, you may be sitting in a different position (e.g., seat angle) which will change pressure and potential forces from rubbing. The best approach is like that of trialing a new wheelchair or cushion: frequently check your skin in the early days of your new sport. This means that it is best to start with shorter sessions and work your way up in time once you know that your skin can tolerate the new equipment and positions. In water sports such as kayaking, or in rainy conditions for outdoor sports, make sure to check your skin when you are done since being wet can make the skin more prone to injury.

Additionally, you may want to consider the influence of temperature (extreme hot or cold weather), as temperature regulation may be impaired with an SCI.

Refer to our article on Pressure Injuries for more information!

What types of cycling and pushing sports are there?

Handcycles are a type of bicycle that is propelled by the arms instead of the legs. There are different types of handcycles available for all levels of ability. In general, most arm-cycles have alternative handle options for those with limited hand function.

Types of arm cycles

Recumbent cycles

Recumbent arm-cycles are three wheeled bikes that are controlled with the arms while seated in a reclined position. This type of bicycle has support straps to rest the feet in while cycling.

Upright cycles

Upright cycles are similar to recumbent bikes in that the feet are on either side of the front wheel. However, the user is seated in a more upright position when using this bike.

Tandem bikes

A variety of tandem arm bikes are available. Bike models are available to allow riders to either ride beside each other, or one in front of the other. Power-assist versions are also available for those who may have some function in their legs.

Arm cycle add-ons

Instead of buying a separate wheelchair, arm-cycle add-ons are available for manual wheelchair users. These add-ons connect to the front of a manual wheelchair, lifting up the casters. This then allows an individual to propel their wheelchair via an arm cycle. Additionally, power-assist versions are available for those with less upper body strength.

Off-road wheelchairs

If you are looking to go on some trails, an off-road wheelchair may appeal to you. These wheelchairs are used for recreational riding, such as going for a hike, or going fishing. Off-road wheelchairs often have larger, knobbier tires that are meant to withstand the trail, roots, and rocks. Like the arm-cycles, off-road wheelchairs come in a variety of set ups. Some setups may look like a typical manual wheelchair, but with larger wheels. There are also ones that are controlled with push-levers (such as the mountain trike), and powered wheelchairs with more power, suspension, and agility (such as the x5 frontier, and the x8-extreme all-terrain wheelchair).

Wheelchair racing

For those who are interested in competition, wheelchair racing may be an option. Wheelchair race events range from the 100m, 200m, 400m, 800m, 1500m, and 5k distance races in track and field, to marathons. Racing wheelchairs differ from the wheelchairs and cycles listed above in that they typically have two wheels with a third one extended out in front. Ideally, race chairs should be light-weight to enhance performance. When seated, the wheelchair should fit “like a glove”, and there should be little movement in the seat. Unlike arm-cycles, the feet are bent down and kept closer to the body. In addition, specialized rubber gloves are worn to push the rims during races.

Refer to our article on Wheelchair Propulsion Assist Devices for more information!

What adapted court sports are available?

Tennis

Wheelchair tennis is played on the same court as able-bodied tennis, and with similar rules. One rule difference is that in wheelchair tennis, players are allowed two bounces instead of one, and the second bounce can be anywhere – even out of bounds. Although one can play wheelchair tennis in their day chair, tennis wheelchairs are often preferred during play. These wheelchairs are faster, lighter, more agile, and more stable. The wheels on the wheelchair are also angled (i.e., there is more camber ) to allow for more swift turning. For those with limited hand function, taping the racquet to your hand is common practice, though it can take some time to find the optimal tension for you. Therefore, people with all levels of ability can play wheelchair tennis.

Basketball

Wheelchair basketball is played on a standard basketball court. The wheelchair used for basketball is one with wheels angled to 15-20 degrees and a single rollerblade used for a caster at the back. In addition, there are many strapping options to promote stability and safety, or to hold the body in a certain position. Commonly strapped body parts include the hips, knees, feet and/or ankles. It is common for wheelchair basketball leagues to include able bodied participants at the local level of competition. This allows for more players and teams for great league play.

Rugby

Wheelchair rugby was developed specifically for people with tetraplegia and has grown to include people without SCI but with similar functional abilities (e.g., some impaired arm and hand function in addition to impaired leg function). Wheelchair rugby is played with a volleyball. The goal of the game is to carry the ball over the other team’s goal line. Unlike able-bodied rugby, wheelchair rugby is played indoors on a court. Specialized wheelchairs are used to play wheelchair rugby and can be separated into chairs for offensive players and chairs for defensive players. Offensive wheelchairs are set up for speed and mobility and are distinguished with a front bumper to prevent other chairs from hooking them. Often, offensive chairs are used by players with more function. On the other hand, defensive wheelchairs are set up with a bumper to hook and hold onto other players. Defensive chairs are often used by players with less function. Additional equipment used in rugby include straps and gloves. Straps are used on the waist (to compensate for a lack of core muscles), the thighs (to prevent them from falling to the side or from shifting side to side), and the feet (for comfort). Meanwhile, gloves work to protect the skin, add extra grip when pushing the chair, and to making throwing and catching the ball easier.

Community Voices: Byron

Byron has been playing wheelchair rugby for 17 years. He describes it as “a fast-paced sport. You get to hit things with your wheelchair, and at the same time there is a lot of strategy going on.” He enjoys the sport as he explains, “the physical benefits are a big part of why I enjoy playing wheelchair rugby. The community is amazing – it’s great because every practice is an opportunity to see a bunch of my friends.”

What adapted winter sports are available?

Alpine Skiing

Alpine skiing, also known as downhill skiing, is a sport that individuals with tetraplegia and paraplegia can partake in with the use of sit-skis. In general, sit skis have a bucket-type of seat with an adjustable seat and footrest. To create a smoother ride, sit-skis have additional features such as suspensions and a shock compression system under the seat. The seat and suspension/shock systems are all connected to either a single ski (mono-ski) or a pair of skis (bi-skis). In general, mono-skis require the user to have good upper body strength, and the ability to ski independently. Bi-skis are often used by individuals who may require some assistance. Often, bi-skis are used with an able-bodied individual who skis behind them. Skiers who use a sit-ski can use the typical chairlifts at the mountains and with experience, can access all terrains of ski areas.

Cross Country Skiing

Cross country skiing (which is a type of Nordic skiing) allows individuals with paraplegia and tetraplegia to explore snowy trails. Like the alpine skis, cross country skis consist of a bucket seat that connects to a metal frame, which clips into the skis. Cross country skiers also often use poles while skiing to propel themselves along flatter terrain. If assistance is required, an able-bodied person can help push the ski forward with their ski-pole using an adaptive add-on.

Sledge (Ice) Hockey

Sledge hockey, or para ice hockey is identical to ice hockey but is played while sitting in sledges as opposed to standing on skates.

A sledge consists of a plastic bucket-shaped seat that is connected to a metal frame. This frame is set on two adjustable skate blades, with the blades aligned on the bottom of the seat. The skate blades may be adjusted so that they are further apart for stability (good for new players) or can be moved closer together to allow for more maneuverability and speed. Straps are available to help keep the feet, knees, and hips in place. Players propel themselves in the sledge using two sticks. These sticks are dual ended: one end has a blade for handling the puck, while the other end has a metal pick in it to help players propel themselves across the ice. Typical hockey pads are used for safety during play.

What water sports are available?

Sailing

Adapted sailing is a sport that people of all abilities can participate in. Common features of adapted sailboats include handguards along the side of the boats, greater deck space due to removed masts, and customized molded seats with back support and belts that pivot. For individuals with reduced function, other available adaptations include electronic controls (such as the use of a joystick), and sip ‘n’ puff technology to steer the boat with breath. Many sailing clubs have power/mechanical lifts dockside to assist with transfers into boats.

Community Voices: Terry

Terry has been involved in adapted sailing since 1994. Terry sails a Matin 16 using sip ‘n puff technology. Sailing is special to Terry as he says he can “finally get out of my chair and be as free as the wind!” As he is unable to play court sports, sailing has provided Terry a competitive outlet.

Kayaking

Kayaks are available for people with all levels of SCI. While individuals with a lower level of injury may use non-adapted kayaks, adaptations are available for comfort and to accommodate those with limited function. Some kayaks may have custom seating with side and abdominal support. These supports are cushioned to protect the skin while kayaking. Stabilizing outriggers are available to increase stability of the boat and to reduce the chances of tipping. For those with limited arm/hand function, there are various adaptations for the paddle including:

  • A back of the hand grip, which places more paddling pressure on the arms instead of the hands.
  • Wrist cuff adaptation, which allows individuals to connect the paddle to their wrists via a cuff.

The bottom line

There are many benefits to staying physically active after SCI and there is a large variety of sports to participate in. Whether you prefer staying on land, floating on water, or being in the snow, most sports have been adapted in some way or another so that all who want to can participate! Prior to trying a sport, talk with your health providers to ensure that you are in a condition to play.

Reference list

Evidence for “Why be physically active after SCI” is based on:

Martin KA, Latimer AE, Francoeur C, Hanley H. Sustaining exercise motivation and participation among people with spinal cord injuries – Lessons learned from a 9 month intervention. Palaestra 2002;18(1):38-51.

Hicks AL, Martin KA, Ditor DS, Latimer AE, Craven C, Bugaresti J et al. Long-term exercise training in persons with spinal cord injury: effects on strength, arm ergometry performance and psychological well-being. Spinal Cord 2003;41(1):34-43.

Latimer AE, Ginis KA, Hicks AL, McCartney N. An examination of the mechanisms of exercise- induced change in psychological well-being among people with spinal cord injury. J Rehabil Res Dev 2004;41(5):643-652.

Martin Ginis KA, Latimer AE, McKechnie K, Ditor DS, Hicks AL, Bugaresti J. Using exercise to enhance subjective well-being among people with spinal cord injury: The mediating influences of stress and pain. REHABIL PSYCHOL 2003;48(3):157-164.

Latimer AE, Martin Ginis KA, Hicks AL. Buffering the effects of stress on well-being among individuals with spinal cord injury: A potential role for exercise. Therapeutic Recreation Journal 2005;39(2):131-138.

Mulroy, S. J., Thompson, L., Kemp, B., Hatchett, P. P., Newsam, C. J., Lupold, D. G., et al. (2011). Strengthening and Optimal Movements for Painful Shoulders (STOMPS) in chronic spinal cord injury: a randomized controlled trial. Physical Therapy, 91, 305—324.

Jacobs, P. L. (2009). Effects of resistance and endurance training in persons with paraplegia. Medicine & Science in Sports & Exercise, 41, 992-997.

De Groot PC, Hjeltnes N, Heijboer AC, Stal W, Birkeland K. Effect of training intensity on physical capacity, lipid profile and insulin sensitivity in early rehabilitation of spinal cord injured individuals. Spinal Cord 2003;41(12):673-679.

de Carvalho DC, Martins CL, Cardoso SD, Cliquet A. Improvement of metabolic and cardiorespiratory responses through treadmill gait training with neuromuscular electrical stimulation in quadriplegic subjects. Artif Organs 2006;30(1):56-63.

Information for “What are adapted sports” is based on:

World Para Athletes. (n.d.). What is classification? https://www.paralympic.org/athletics/classification

Information for “What types of cycling and pushing sports are there?” is based on:

World Para Athletes. (n.d.). Para-athletics explained: Wheelchair racing. https://www.paralympic.org/news/para-athletics-explained-wheelchair-racing

Chair Institute. (2019). Best off road all terrain wheelchairs for outdoors review 2020. https://chairinstitute.com/best-wheelchairs-for-outdoors/

Information for “What adapted court sports are available?” is based on:

BC Wheelchair Sports. (n.d.). Wheelchair Tennis.https://www.bcwheelchairsports.com/sites/default/files/images/BCWSA%20Wheelchair%20Tennis%20First%20Introduction%20Manual%20-%20PRINT%20%281%29.pdf

Wheelchair Basketball Canada. (2021). About the sport. https://www.wheelchairbasketball.ca/the-sport/about-the-sport/

Wheelchair Basketball Canada. (2021). Equipment. https://www.wheelchairbasketball.ca/the-sport/equipment/

Wheelchair Rugby Canada. (2018). Rules and equipment. https://wheelchairrugby.ca/rules-equipment/

Information for “What adapted winter sports are available?” is based on:

Canadian Ski Council. (2018). Skiing is for everyone! https://www.skicanada.org/ready/accessible-skiing-information/

XCSkiResorts. (2016). Nordic adaptive sit-skis bring freedom to mobility impaired persons. https://www.xcskiresorts.com/resort-features/2016/9/12/nordic-adaptive-sit-skis-bring-freedom-to-mobility-impaired-persons

BC Hockey – Saanichton, BC. (2016). Para Hockey Brochure Guide.https://www.bchockey.net/Files/Sledge%20Hockey%20Brochure.pdf

Information for “What water sports are available?” is based on:

Disabled Sailing Association of British Columbia. (2021). Sip ‘n’ Puff Technology. https://asabc.org/sip-n-puff/

Creating Ability. (2021). Seating systems. https://www.creatingability.com/seating-systems/

Creating Ability. (2021). Paddle adaptations. https://www.creatingability.com/paddle-adaptations/

Image credits

  1. Man on Arm Erg by SCIRE Community
  2. BC Wheelchair Rugby Day 1 293©Melissa Nemeth, CC BY-SA 2.0
  3. Noun Project
  4. Noun Project
  5. Noun Project
  6. Shark ©Sunrise Medical 2021
  7. Replacement parts for Invacare Top End Handcycles ©RehabMart.com, LLC 1998-2021
  8. Van Ram Fun2Go Tandem ©Bike-On.com 2020
  9. Batec Hybrid ©Batec Mobility
  10. Invacare top end crossfire all terrain wheelchair ©Invacare Corporation 2021
  11. Top end preliminator youth racing wheelchair – custom version. ©How I Roll Sports, LLC 2018
  12. Harness Glove ©Harness Designs Wheelchair Gloves
  13. Wheelchair Tennis ©BC Wheelchair Sports
  14. Wigan Warthogs Wheelchair Basketball-2 ©Andrew Spillane, CC BY-ND 2.0
  15. Equipment ©International Wheelchair Rugby Federation 2013-2021
  16. London 2012 Paralympics Wheelchair Rugby (Murderball) ©Sum_of_Marc, CC BY-NC-ND 2.0
  17. Monique-1 Mono Ski ©Enabling Technologies 2021
  18. Dynamique Bi Ski ©Enabling Technologies 2021
  19. Woman using sit ski – photo by northeast passage ©U.S. Forest Service – Pacific Northwest Region, Public Domain Mark 1.0
  20. Sledge Hockey: Italy/Sweden ©Mariska Richters, CC BY-NC-SA 2.0
  21. Terry in Matin 16
  22. Outfitted Kayak ©Creating Ability 2021
  23. Stabilizing Outriggers ©Creating Ability 2021

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.
Sep 11
0

Pregnancy After Spinal Cord Injury

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Author: Hannah Goodings | Reviewer: Frédérique Courtois | Published: 11 September 2023 | Updated: ~

Key Points

  • Women with spinal cord injuries (SCI) can have successful, safe, pregnancies.
  • Along with the many changes that able-bodied pregnant women experience, there are unique risks for women with SCI during pregnancy, delivery and postpartum periods.
  • Having regular communications with a team of medical professionals before, during and after pregnancy can help ensure a safe pregnancy for the mother and the child.

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Can I get pregnant after SCI?

Yes. Female fertility is often unaffected after SCI meaning that women with SCI are able to have successful pregnancies. During the initial phase of recovery, the majority of women experience a menstruation pause lasting 5-12 months. Once menstruation resumes, the women’s ability to undergo pregnancy returns to normal.

Refer to SCIRE Professional’s module on Sexual and Reproductive Health for more information!

What should I know before pregnancy?

It is recommended that women with SCI attend a consultation prior to pregnancy to discuss the unique risks involved when pregnant with SCI. This conversation and continued appointments with health care professionals during pregnancy can help ensure a safe pregnancy, delivery and postpartum period. Common preconception medical team members may include:

Obstetrician

A skilled medical professional who specializes in pregnancy and births. Finding an obstetrician with SCI expertise can be greatly beneficial as they may have adapted medical equipment and experience detecting specific SCI pregnancy risks and warning signs.

Midwife

A health professional who often works with women pre-conception, during pregnancy, during delivery and after birth, often in collaboration with other hospital medical staff. It should be noted that the role of midwives varies around the globe.

Obstetric anesthesiologist

A trained anesthesiologist who specializes in epidurals during delivery. An epidural is frequently used for pain reduction but in SCI populations can also reduce the risk of autonomic dysreflexia occurring during birth. For this reason, an obstetric anesthesiologist with SCI expertise is beneficial.

Spinal nurse

A nurse that specializes in SCI care, both acutely and long-term.

Physical/Occupational Therapist

Therapists who create mobility programs and adjusted techniques of completing activities of daily living and exercises in a safe manner.

Meeting with multiple practitioners can be time consuming. Finding a team with strong communication between health care providers can ease some of this.

What are the potential risks during pregnancy?

Women with SCI are able to have healthy pregnancies and births. However, these pregnancies are often considered high risk due to the added SCI related risks during pregnancy. These include:

Bladder and Bowel

Urinary Tract Infections (UTI)

UTIs are a common issue after SCI and may require antibiotic treatment. Pregnancy can reduce your mobility and put more pressure on your bladder, increasing the risk of incontinence and put you at higher risk of developing a UTI. Some women may choose to use an for all or the later portion of pregnancy to help with incontinence issues. Catheters can be useful for greater bladder control, but they also pose a risk for infection. Proper catheter hygiene and monitoring of symptoms is important to catch UTIs early.

Kidney Stones

Individuals with SCI are at higher risk of developing kidney stones due to incomplete bladder emptying, use of catheters, or neurogenic bladder conditions. During pregnancy, this risk increases due to decreased mobility and the potential for increased incontinence. If you experience fever, frequent UTI symptoms, or pain (though not all individuals with SCI will experience pain) consult your health care provider to determine the best course of action.

Autonomic Dysreflexia

Autonomic dysreflexia (AD) can be triggered by a full bladder or constipation. During pregnancy, the risk for bladder incontinence and constipation increases. This risk can be reduced with a schedule and tracking system for urinary and bowel movements. Speaking to a registered dietitian to adjust fiber intake or begin laxatives may also be helpful to decrease constipation risk.

Refer to our articles on Bladder Changes, UTIs, and Autonomic Dysreflexia for more information!

Spasticity

For some individuals, spasticity worsens during pregnancy. Medication use during pregnancy, particularly spasticity-reducing medication, should be discussed with a physician to keep both the mother and child safe.

Some common medications, taken by individuals with SCI (for pain, spasticity etc.) may negatively affect the baby if taken during pregnancy. Consulting your family doctor to discuss medication options is crucial.

 

Pressure Injuries

Reduced mobility and increased weight gain during pregnancy both play a role in the increased likelihood of pressure injuries developing. Regular pressure adjustments, skin assessments and chair fittings, completed by a seating specialist, should be done to avoid pressure injury complications during the pregnancy.

Refer to our articles on Spasticity and Pressure Sores for more information!

Mobility and Fatigue

Weight gain, increased abdominal pressure and increased spasticity during pregnancy can lead to decreased mobility and fatigue. Sleep quality is also commonly impacted by pregnancy and can worsen existing fatigue. This may result in needing help completing tasks that you have been independent in before pregnancy. It is important to pay attention to tasks you may need help with during pregnancy to ensure you have the correct supports in place.

Breathing

In women with higher SCIs, breathing issues may be present or worsen during pregnancy. Raising the upper body on pillows when lying down can help with breathing but regular checks should be done to prevent pressure sores or skin shearing in this position. Those with tetraplegia may be at increased risk of pneumonia. For those with a weak cough, there is an increased risk of aspiration if experiencing vomiting from morning sickness that may be reduced by side lying. Speaking to a physiotherapist about breathing exercises or modifications to assisted coughing may also be helpful to improve breathing.

Fetus Position

Fetal malpresentation, a condition where the fetus is not properly positioned, is more common in women with SCI due to decreased muscle tone within the abdominal wall. Routine ultrasounds should be conducted during pregnancy to check the fetus’ positioning to create a safe birth plan.

Pregnancy alters and stresses many systems in the body for both able-bodied women and women with SCI. Women with SCI have higher risks with the complications listed above and may need additional support to ensure healthy pregnancies. However, with the proper medical support, a successful and safe pregnancy can be achieved.

What should I expect during childbirth?

Having regular appointments and good communication within your medical team are both key to developing a safe and successful birth plan. During delivery, some SCI specific complications to be aware of include:

Being unaware that labour has begun

Depending on the level of injury, contractions or fetal movements may not be felt by the mother. This has the potential to lead to an unexpected birth, which can be dangerous to both the newborn and the mother. To avoid this, regular cervical dilation checks should be completed from week 28 onward. For women with injury levels above T10, early hospitalization after week 36 may be recommended.

Autonomic dysreflexia

Autonomic dysreflexia (AD) is a risk throughout all the stages of pregnancy, but the risk is even more elevated during the time of labour and delivery. Some stimuli that may lead to AD include contractions and manipulation of the uterus, bladder or vagina, all involved in childbirth. AD leads to a sharp rise in blood pressure with symptoms such as a throbbing headache, red skin, nausea, and can be life threatening. The treatment for AD occurring during birth is to stop all manipulation and position the mother in an upright position. If AD cannot be controlled during birth, a caesarean section may be required to safely deliver the baby.

Should I get an epidural?

An epidural can reduce pain during delivery for some and it is also a valuable tool used to decrease the risk of AD. Because of its utility in decreasing the risk of AD, epidural injection may be recommended regardless of the mother’s ability to feel birthing pains. In particular, it is recommended that women with SCI above T6 should have an epidural catheter placed at T10. In some cases, an epidural may be difficult if the mother has had lumbar or thoracic spinal surgery in the past. If an epidural cannot be completed, a local anesthetic may be used before any birthing surgeries such as an episiotomy.

Do I have to give birth at a large hospital?

With every pregnancy being unique, the decision of where to give birth requires a discussion with your medical team. If the mother’s injury level is below T6, safe delivery at a local hospital rather than traveling to a large centre may be possible if all those involved are properly trained on the specific risks associated with SCI during childbirth. This decision should be made with the medical team and mother to ensure a safe delivery.

Do I need a caesarean section?

In the past, women with SCI have often been advised that a caesarean section (C-section) is the safest option for childbirth. In some cases, where fetal positioning is incorrect or due to other complications, a C-section may be needed. However, in other cases, vaginal births can be safely completed in women with SCI. The discussion of vaginal or caesarean birth should be a conversation involving the mother and her medical team in order to best achieve a safe and successful birth.

What should I expect after my pregnancy?

After giving birth, most women with SCI have longer stays in hospitals compared to able-bodied women. This allows for continued care of bladder emptying, birthing wounds and monitoring. After discharge from the hospital, some complications that you may face as a mother with SCI include:

Wound Healing

Due to decreased or complete lack of sensation, birthing wounds for SCI patients must be carefully inspected often to ensure they are healing properly. Women may stay in the hospital to get the care needed or they may head home if wound care can be safely continued there. Daily wound cleaning should be completed until healing is complete. If possible, visits from a midwife or nurse may be beneficial during this time.

Breastfeeding

Watch SCIRE’s video explaining ways you can breastfeed with assistive aids.

Mothers with SCI often have the ability to breastfeed normally.

However, you may face some complications depending on your level of injury. Women with:

  • injuries above T6 tend to have reduced milk production,
  • injuries above T4 can experience trouble releasing milk due to reduced sensation of the baby latching onto the breast,
  • any level of injury may have trouble positioning the baby or holding the baby for the entirety of feeding times. In these cases, breastfeeding pillows or laying down while feeding may be a good option.

If it is determined that the baby is not getting enough to eat through breastfeeding alone, supplemental formula may be advised.

Refer to our article on Breastfeeding for more information!

Mental Health

Following delivery, many women, both able-bodied and disabled, deal with mental health changes and some develop postpartum depression or anxiety. Individuals living with SCIs are at a higher risk of depression, leading to a higher rate of postpartum depression and anxiety.

Postpartum Depression

Postpartum depression can be described by a major episode of depression occurring within 12 months of giving birth. Following delivery, many women experience postpartum blues, associated with mood swings during the first 4-10 days. An important difference is that postpartum depression greatly affects activities of daily living and postpartum blues does not.

Postpartum Anxiety

Postpartum anxiety is a major episode of anxiety during the months following giving birth and is also thought to be a more common risk in SCI populations.

Both postpartum depression and postpartum anxiety can have negative effects on the mother, child and supporting family if not treated. If you know someone suffering from either of these conditions, encouraging them to seek help from a medical professional as soon as possible is crucial.

Refer to our article on Depression for more information!

The bottom line

There are increased or unique pregnancy-related considerations for women with SCI such as pressure sores, mobility and fatigue issues, autonomic dysreflexia during childbirth, and issues around wound healing. However, women with SCI can have healthy pregnancies, deliveries and motherhoods, helped along with their medical team.

For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Related resources

SCIRE Community. Sexual Health After SCI. Available from: community.scireproject.com/topic/sexual-health/

SCIRE Community. Urinary Tract Infections. Available from: community.scireproject.com/topic/urinary-tract-infections/

SCIRE Community. Breastfeeding. Available from: community.scireproject.com/videos/breastfeeding/

SCIRE Professional. Sexual Reproductive Health: scireproject.com/evidence/sexual-and-reproductive-health/introduction/

SCIRE Community. Autonomic Dysreflexia. Available from: community.scireproject.com/topic/autonomic-dysreflexia/

SCI BC. Breastfeeding After SCI. Available from: https://sci-bc.ca/breastfeeding-after-sci/

SCI BC. Female Fertility and Pregnancy. Available from: https://scisexualhealth.ca/female-fertility-and-pregnancy/

Reference list

References presented in order they appear in text.

Robertson, K., & Ashworth, F. (2022). Spinal cord injury and pregnancy. In Obstetric Medicine (Vol. 15, Issue 2, pp. 99–103). SAGE Publications Inc. https://doi.org/10.1177/1753495X211011918

Welk, B., Fuller, A., Razvi, H., & Denstedt, J. (2012). Renal stone disease in spinal-cord–injured patients. Journal of endourology, 26(8), 954-959. https://doi.org/10.1089/end.2012.0063

Wendel, M., Whittington, J., Pagan, M., Whitcombe, D., Pates., McCarthy, R., Magann, E. (2021). Preconception, Antepartum, and Peripartum Care for the Woman with a Spinal Cord Injury: A Review of the Literature. Obstertrical and Gynecological Survery. https://pubmed.ncbi.nlm.nih.gov/33783544/

Bertschy, S., Schmidt, M., Fiebag, K., Lange, U., Kues, S., & Kurze, I. (2020). Guideline for the management of pre-, intra-, and postpartum care of women with a spinal cord injury. Spinal Cord, 58(4), 449–458. https://doi.org/10.1038/s41393-019-0389-7

Stoffel, J. T., van der Aa, F., Wittmann, D., Yande, S., & Elliott, S. (2018). Fertility and sexuality in the spinal cord injury patient. World Journal of Urology, 36(10), 1577–1585. https://doi.org/10.1007/s00345-018-2347-y

Spinal Outreach Team (2017). The impact of a spinal cord injury on pregnancy, labour and delivery: What you need to know, Brisbane, Queensland: Queensland Health. https://www.health.qld.gov.au/__data/assets/pdf_file/0027/425772/pregnancy-sci.pdf

Robertson, K., Dawood, R., & Ashworth, F. (2020). Vaginal delivery is safely achieved in pregnancies complicated by spinal cord injury: A retrospective 25-year observational study of pregnancy outcomes in a national spinal injuries centre. BMC Pregnancy and Childbirth, 20(1). https://doi.org/10.1186/s12884-020-2752-2

Crane, D. A., Doody, D. R., Schiff, M. A., & Mueller, B. A. (2019). Pregnancy Outcomes in Women with Spinal Cord Injuries: A Population-Based Study. PM and R, 11(8), 795–806. https://doi.org/10.1002/pmrj.12122

Bertschy, S., Bostan, C., Meyer, T., & Pannek, J. (2016). Medical complications during pregnancy and childbirth in women with SCI in Switzerland. Spinal Cord, 54(3), 183–187. https://doi.org/10.1038/sc.2015.205

Lee, A. H. X., Wen, B., Walter, M., Hocaloski, S., Hodge, K., Sandholdt, N., Hultling, C., Elliott, S., & Krassioukov, A. v. (2021). Prevalence of postpartum depression and anxiety among women with spinal cord injury. Journal of Spinal Cord Medicine, 44(2), 247–252. https://doi.org/10.1080/10790268.2019.1666239

Kroska, E. B., & Stowe, Z. N. (2020). Postpartum Depression: Identification and Treatment in the Clinic Setting. In Obstetrics and Gynecology Clinics of North America (Vol. 47, Issue 3, pp. 409–419). W.B. Saunders. https://doi.org/10.1016/j.ogc.2020.05.001

Image credits

  1. Medical team Cromaconceptovisual CC0
  2. Excretory system ©Olena Panasovska, CC BY 3.0 US
  3. Digestive System ©Design Science, CC0 1.0
  4. Medication CC BY 3.0 US
  5. Pressure Injuries CC BY 3.0 US
  6. Help CC BY 3.0 US
  7. Breathing CC BY 3.0 US
  8. Fetus position CC BY 3.0 US
  9. Pregnant ©Luis Prado CC BY 3.0 US
  10. Voltage ©Clker-Free-Vector-Images, CC0 1.0
  11. Hospital Public Domain © Public Domain Certification
  12. Breastfeeding © SCIRE Community Team
  13. Mental Health ©Loritas Medina CC BY 3.0 US

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.
Jun 07
0

Shoulder Injury and Pain After SCI

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Authors: Jaashing He, Hannah Goodings | Reviewer: Darryl Caves | Published: 7 June 2023 | Updated: ~

Key Points

  • Shoulder injuries and pain are a common experience for many, with individuals with SCI having a slightly higher rate of occurrence.
  • Many factors contribute to the risk of shoulder injury or shoulder pain such as age and female sex. Some factors such as strength can be improved.
  • The best way to prevent shoulder injuries is to actively work to avoid them in the first place. Preventative strength training, practicing good ergonomics and improving your wheelchair handling skills can all help reduce your risk.

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Is shoulder pain common?

Shoulder pain and injury is something that many people experience, SCI or not. In the general population, 26% of people live with shoulder pain compared to 36% for SCI populations. Interestingly, when looking at the wide variation within SCI populations, there is a similar incidence of shoulder pain whether you use a powerchair, manual chair, gait-aid or no gait-aid. It is helpful to have a good understanding of what is involved in shoulder movement to understand what makes the shoulder vulnerable to injury and how best to prepare and maintain your shoulder to avoid injury.

Shoulder anatomy

Posterior view of man's torso with arm raised. Muscles of the rotator cuff (supraspinatus, subscapularis, teres minor, and infraspinatus) are superimposed and labeled.The shoulder is designed for movement and a large range of motion. Bone shape, muscle coordination and connective tissue all work together to form our most flexible joint. With this large range of movement, we sacrifice some stability. Unlike the hip joint with its “ball in cup” design giving great bony stability, the shoulder has a “ball on small plate” design. The surrounding muscles and connective tissue help keep the upper arm bone (the “ball”) in place on the shoulder blade (the “dish”). There are four muscles responsible for keeping the ball in place during movement. This group of muscles is referred to as the rotator cuff muscle group and includes the supraspinatus (above the spine of the scapula), subscapularis (on the front of the scapula), and infraspinatus (below the spine of the scapula) and teres minor (on the back of the scapula). These four small muscles are responsible for “balancing the ball” but they are not the only muscles found in the shoulder. There are larger muscles that surround the joint that are used to perform movements that involve strength such as lifting, pushing or carrying.

Cartoon of front shoulder skeleton with joints (sternoclavicular, acromioclavicular, glenohumeral, scapulothoracic) labeled.

Though we often think of the shoulder as a singular joint, there are actually four joints and articulations within the shoulder system.

The joints/articulations are:

  • Sternoclavicular joint (sternum and collar bone)
  • Acromioclavicular (shoulder blade and collar bone)
  • Glenohumeral joint (shoulder blade and upper arm)
  • Scapulothoracic (ribcage and shoulder blade)

Shoulders do not work in isolation. The bones, muscles and connective tissue all interact with surrounding regions of the body resulting in the potential for disruptions in movement patterns in the shoulder. For example, the shape of the ribcage can also impact shoulder movement. It is what the shoulder blade slides on to allow for movement of the arm above shoulder height. If the shoulder blade cannot move smoothly over the ribs, reaching above shoulder height may become difficult and painful.

What are the different classifications of pain?

Shoulder pain can be grouped into two categories: neuropathic (nerve) pain and mechanical (muscle, joint and bone) pain and their treatments are different.

Neuropathic pain results from disease or damage to the nervous system (brain, spinal cord and/or nerves). This pain is often described as pins and needles, shooting electrical sensations, stabbing, coldness, burning and increased sensitivity.

Coronal section of the shoulder with bone, joint, and muscle tissue displayed.

Mechanical pain is related to pain from damaged joints (blue), bones (grey) or muscles (pink).4

Mechanical pain is pain that occurs when tissues (bone, joint, ligament, tendon, muscle) are pushed beyond the load they can handle, also known as exceeding their tissue capacity. This can be from a sudden event or misuse (overuse, repetitive) of the shoulder and can lead to damage of these tissues resulting in pain or injury. Tissue capacities can become more resilient with increased strength and movement training. They can also become less resilient with disuse, aging, or metabolic conditions such as poorly managed diabetes. A large decrease in activity for the shoulder can lead to decreased tissue capacity and can result in a higher likelihood for injuries and pain.

Mechanical pain can help guide us to understand when a tissue may be near its capacity and our activities should be adjusted to allow for rest and recovery. Sometimes pain will continue despite rest and become an unhelpful signal.

Refer to our article on Pain for more information!

What is involved in a shoulder assessment?

Identifying the type (neuropathic vs. mechanical) and cause of shoulder pain can be complicated. As shoulders can be affected and affect many regions of the body, a thorough examination of the medical history and a physical examination, conducted by a health professional, is needed to best uncover the cause of pain. This thorough examination may involve:

A detailed history, including:

  • Diagnosis (if this pain is a result of an injury or previous diagnosis)
  • Pain history
  • Occupation
  • Recreational activities
  • Equipment history and usage

A physical examination of the:

  • Neck
  • Spine
  • Ribcage
  • Shoulder joints
  • Arm
  • Posture
  • Position of the shoulder blade on the ribcage
  • Range of movement and strength

What are the risk factors for developing shoulder pain?

There are certain risk factors that increase your likelihood of developing shoulder injury or pain. Many of these risk factors also exist for the general population but there are some risk factors specific to the SCI population. Some of these factors can be changed and some cannot.

Non-modifiable risk factors for all populations

Non-modifiable factors are things that can increase risk of shoulder injuries but cannot inherently be changed. These include:

  • Higher age
  • Being female
  • Prior shoulder injury
  • Metabolic diseases leading to poor connective tissue capacity (e.g. diabetes, vascular diseases)

Non-modifiable risk factors specific to SCI

  • Higher level and complete injury
  • Longer duration of injury
  • Muscle imbalances due to paralysis of specific muscles
  • Reduced functional strength around the joint due to SCI-related muscle weakness/paralysis
  • Relying heavily on upper body movement for everyday life tasks
  • Postural issues due to SCI-related muscle weakness/paralysis

Risk Factors: Tetraplegia vs Paraplegia

While shoulder pain is more common in persons with tetraplegia and in those with complete injuries (Dyson-Hudson 2004), the cause of that shoulder pain can differ:

  • In paraplegia, overuse-related shoulder pain is more common and is seen in later years after injury (Mulroy et al., 2020), a result of using the shoulders for mobility over a long period.
  • In someone with tetraplegia where shoulder muscles are affected by paralysis, an imbalance in the shoulder muscles can result and there may be spasticity that pulls the shoulder capsule. Then, just moving the shoulder can result in pain due to subluxation and impingement.

Modifiable risk factors for all populations

Modifiable factors are things that may be able to be changed with lifestyle adjustment. The risk for shoulder injury can be reduced by:

  • Improving shoulder flexibility or range of movement deficit.
  • Increasing shoulder muscle strength and/or balance.
  • Improving posture, especially of shoulders hunched forward which can increase impingement.
  • Reducing occupational exposure: percentage of time spent working at or above shoulder height, high loads or force demands, repetitive tasks, exposure to vibration, sustained or awkward postures.

Modifiable risk factors specific to SCI

  • Reduce spasticity
  • Reduce body weight if obese
  • Improve balance or stability of the body for upper extremity tasks
  • Improve home or workplace set-up to reduce shoulder height movements and weight transfers without equipment support

It is important to note that some of the factors within the modifiable lists may actually be non-modifiable for some individuals.

Refer to our article on Spasticity for more information!

How can shoulder injuries be prevented and treated?

Having had a shoulder injury is one of the main predictors of shoulder pain or subsequent shoulder injury. With this in mind, preventing an initial shoulder injury should be a priority.

If a shoulder injury does occur, the treatment should focus on decreasing pain and beginning initial rehabilitation followed by continued rehabilitation and prevention of future shoulder injuries.

Rehabilitation from an incident of shoulder pain or shoulder injury can seem to follow the same pathway as when one initially undergoes rehabilitation for an SCI. This is because of the need to restore and maintain mobility and strength to enable tissue capacity for function, to do the things you want and need to do. At the same time, we need to continually evaluate and re-evaluate our lifestyle, environment, and equipment choices as we age and change to ensure that these variables remain optimized and if not to change them. The following represent the key variables that need to be addressed in all situations:

Manual wheelchair with a propulsion assist device attached.

Using a propulsion assist device can eliminate the use of the arms for propulsion on a manual wheelchair.6

Managing pain

Rest and Activity Modification

Following a shoulder injury or the onset of pain, rest is often recommended as the first step in recovery. However, it can be difficult for manual wheelchair users or mobility aid users to fully rest their shoulders. In this case, you may be advised to pick and choose when to use your arms and when to use assistive technology. For example, for a manual wheelchair user, the use of a power-assisted add-on or adding a powered front-mounted system may reduce the use of the shoulders significantly.

Refer to our article on Propulsion Assist Devices for more information!

Rehabilitation techniques

Physical and occupational therapists can be great resources for injury assessments as well as pain reduction treatments and therapies. The focus of shoulder recovery should revolve around building tissue capacity through strength and flexibility training and increasing variability in movements.

Pharmacological

Medications can be used to relieve pain and allow for more movement. These pharmacological interventions include nonsteroidal anti-inflammatory drugs (NSAIDs), acetaminophen, muscle relaxants, local anesthetic and corticosteroid injections.

Prevention and Rehabilitation

To best prevent subsequent shoulder injuries and to reduce shoulder pain, continued rehabilitation as well as strategies to reduce shoulder strain should be used.

Exercise and Stretching

Exercise programs and stretches, prescribed by a medical professional, to strengthen the shoulders, neck, chest and back muscles are helpful in preventing shoulder injuries.

The following exercises are recommended for shoulder pain after SCI, beginning with shoulder stretches and rotator cuff muscle strengthening and then other shoulder stabilizers as the pain decreases:

  1. Stretching exercises for the front of the shoulder are recommended to counter tightness associated with shoulder pain in SCI.
Man supine in bilateral stretch of anterior shoulder structures with “open book” stretch.

Bilateral stretch of anterior shoulder structures with “open book” stretch.7

Man seated in wheelchair stretching front of one shoulder using a doorway.

Seated stretch of anterior shoulder using a doorway.8

  1. Shoulder strengthening exercises are effective in reducing pain in most overuse-related shoulder pain. Start with exercises for the rotator cuff muscles.
Man using resistive band to externally rotate the shoulder with elbow tucked against body.

External rotators can be strengthened using resistive bands with the elbow pressed against the body.9

Man seated in wheelchair lifting a dumbbell to shoulder height in the scapular plane with thumb up.

The safest and most effective exercise to strengthen the supraspinatus muscle involves lifting the hand to shoulder height (90 degrees) diagonally (between directly in front and to the side- the scapular plane) with the thumb up (glenohumeral external rotation).10

  1. Exercises for scapular retractors (rhomboids/middle trapezius), scapular protractors (serratus anterior), and thoracohumeral depressors (pectoralis major/latissimus) can be added as pain decreases.
Man in wheelchair performing a one-arm row using a resistive band.

Scapular retractors strengthening using a rowing exercise with the elbow down.11

Man in wheelchair using resistive band to execute a pushing movement.

Strengthening of the scapular protractors with the opposite motion, pushing forward.12

Man in wheelchair performing resisted adduction exercise (pull-down and across the body with the elbow starting no higher than the shoulder).

Thoracohumeral depressors strengthening with resisted adduction exercises (pull-down with the elbow no higher than the shoulder).13

Ergonomically Sound Environments

Wheelchair users and mobility-aid users are exposed frequently to environments with above-shoulder-height movements because typical environments are not adapted for their mobility needs. This is a common and often distressing issue that many people living with SCI experience. An important component of a preventative injury strategy is to arrange your work, home, and other frequented spaces in an ergonomically sound set-up style to suit your needs. A physical therapist, occupational therapist or care team can evaluate your environment to create a space that reduces effort and pain for you. Modifications may include lowering shelves to avoid raising arms above the head or arranging the storage of items so that the most frequently used objects are easier to access. Having an ergonomically sound set-up that allows you to move and function efficiently and safely is a valuable tool in preventing shoulder pain.

Refer to our article on Housing for more information!

Posture and wheelchair setup

Posture has a major impact on how the body moves and should be considered when addressing a shoulder injury or the onset of shoulder pain.

Sitting

When sitting upright, your head and back should be aligned. Hunched shoulders with a forward head can increase impingement of shoulder structures. Be aware of your sitting posture in your wheelchair by regularly looking at your posture with a camera or in the mirror. People with SCI are at risk for postural issues especially if they have some paralysis of trunk and/or upper limb muscles. This shift in posture can cause issues with the shoulder blade sliding as the arm is raised above shoulder height. If posture problems develop, request a seating review from health professionals.

Sleeping

When sleeping, ensure your shoulders are well supported. If you sleep on your side, do not lay directly on the shoulder. Pull it forward and lie on the shoulder blade. If a comfortable position cannot be found, consult your OT or PT to find an alternate technique.

Wheelchair setup

Two images of a man in a wheelchair with differing axle position. One with the wheels forward and the other with wheels rearward.Changes can be made to your wheelchair to help improve shoulder pain. It is important to make sure your wheelchair is set up in the most efficient way for your propulsion. Adjustment of your position in the chair as well as how the wheel is positioned will alter how you are pushing the chair, and how much energy is required to propel. Some possible adjustments include moving the rear wheel forward to reduce the reaching distance to the wheel, adjusting the wheel axle height to optimize your elbow angle (between 100-120 degrees), and general wheelchair maintenance (e.g, tire pressure, caster functions) to ensure your wheelchair remains easy to propel.

Refer to our articles on Wheelchair Seating and Manual Wheelchairs for more information!

Wheelchair Skills

Increasing wheelchair skills by learning correct propelling and maneuvering techniques will aid in protecting against shoulder injuries. This includes skills such as wheelies, propulsion techniques such as using long, smooth strokes and recognizing signs that your wheelchair may need maintenance.

Refer to our article on Wheelchair Provision for more information!

The bottom line

Shoulder injuries are a common experience for many people. Prevention is the best approach and there are many factors that can be modified to reduce your risk of shoulder pain. These include stretching and strengthening your shoulder muscles, ensuring good posture, ergonomic assessments and bettering your wheelchair handling skills.

If you are experiencing shoulder pain or have injured your shoulder, please seek advice from your health care team. It is best to discuss all treatment options with your health providers to find out which treatments are suitable for you. For a review of how we assess evidence at SCIRE Community and advice on making decisions, please see SCIRE Community Evidence.

Reference list

Parts of this page have been adapted from the SCIRE Professional “Pain Management”, “Upper Limb”, and “Wheeled Mobility and Seating Equipment” Modules:

Mehta S, Teasell RW, Loh E, Short C, Wolfe DL, Hsieh JTC (2014). Pain Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 5.0: p 1-79.
Available from: scireproject.com/evidence/pain-management/

Harnett A, Rice D, McIntyre A, Mehta S, Iruthayarajah I, Benton B, Teasell RW, Loh E. (2019). Upper Limb Rehabilitation Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Noonan VK, Loh E, Sproule S, McIntyre A, Querée M, editors. Spinal Cord Injury Rehabilitation Evidence. Version 7.0: p 1-137.
Available from: scireproject.com/evidence/upper-limb/

Titus L, Moir S, Casalino A, McIntyre A, Connolly S, Mortenson B, Guilbalt L, Miles S, Trenholm K, Benton B, Regan M. (2016). Wheeled Mobility and Seating Equipment Following Spinal Cord Injury. In Eng JJ, Teasell RW, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, Connolly SJ, Loh E, McIntyre A, editors. Spinal Cord Injury Rehabilitation Evidence. Version 6.0: p 1-178.
Available from: scireproject.com/evidence/wheeled-mobility-and-seating-equipment/

References

Bossuyt, F. M., Arnet, U., Brinkhof, M. W. G., Eriks-Hoogland, I., Lay, V., Müller, R., Sunnåker, M., & Hinrichs, T. (2018). Shoulder pain in the Swiss spinal cord injury community: prevalence and associated factors. Disability and Rehabilitation, 40(7), 798–805. https://doi.org/10.1080/09638288.2016.1276974

Hodgetts, C. J., Leboeuf-Yde, C., Beynon, A., & Walker, B. F. (2021). Shoulder pain prevalence by age and within occupational groups: a systematic review. In Archives of Physiotherapy (Vol. 11, Issue 1). BioMed Central Ltd. https://doi.org/10.1186/s40945-021-00119-w

Jain, N. B., Higgins, L. D., Katz, J. N., & Garshick, E. (2010). Association of shoulder pain with the use of mobility devices in persons with chronic spinal cord injury. PM and R, 2(10), 896–900. https://doi.org/10.1016/j.pmrj.2010.05.004

Dyson-Hudson, T. A., & Kirshblum, S. C. (2016). Shoulder Pain In Chronic Spinal Cord Injury, Part 1: Epidemiology, Etiology, And Pathomechanics. Http://Dx.Doi.Org/10.1080/10790268.2004.11753724, 27(1), 4–17. https://doi.org/10.1080/10790268.2004.11753724

Pannek, J., Pannek-Rademacher, S., & Wöllner, J. (2015). Use of complementary and alternative medicine in persons with spinal cord injury in Switzerland: a survey study. Spinal Cord 2015 53:7, 53(7), 569–572. https://doi.org/10.1038/sc.2015.21

Kim, E., & Kim, K. (2015). Effect of purposeful action observation on upper extremity function in stroke patients. Journal of Physical Therapy Science, 27(9), 2867–2869. https://doi.org/10.1589/JPTS.27.2867

Carlson, M. J., & Krahn, G. (2009). Use of complementary and alternative medicine practitioners by people with physical disabilities: Estimates from a National US Survey. Https://Doi.Org/10.1080/09638280500212062, 28(8), 505–513. https://doi.org/10.1080/09638280500212062

Image credits

  1. Sore shoulder ©Gan Khoon Lay, CC BY 3.0
  2. Modified from: Man view from back. Blades, shoulder and trapezoid illustration. Shutterstock
  3. Humerus Fracture ©Servier Medical Art, CC BY 3.0
  4. Coronal section of the shoulder joint ©Database center for life science, CC BY 4.0
  5. Pulley Row by SCIRE Community
  6.  Firefly Electric Attachable Handcycle for Wheelchair © Rio Mobility 2020
  7. – 13. Reprinted with permission from Topics in Spinal Cord Injury Rehabilitation, American Spinal Injury Association. Sara J. Mulroy et al. (2020). A Primary Care Provider’s Guide to Shoulder Pain After Spinal Cord Injury. 26(3): 186–196.
  1. Wheelchair disability injured disabled handicapped ©stevepb, Pixabay License
  2. Axle Position by SCIRE Community

 

Disclaimer: This document does not provide medical advice. This information is provided for educational purposes only. Consult a qualified health professional for further information or specific medical advice. The SCIRE Project, its partners and collaborators disclaim any liability to any party for any loss or damage by errors or omissions in this publication.