Section 1 – What is SCI?
1.1 – What is Spinal Cord Injury?
The spinal cord is a thick bundle of nerves that connects the brain to the rest of the body. It acts like an information highway, sending messages back and forth. The spinal cord allows us to move our muscles and feel sensations like touch and temperature that let us know what is happening in the world around us.
When the spinal cord is damaged, the flow of information between the brain and the body is disrupted or completely cut-off. This can lead to a loss of muscle movement, called paralysis, and a loss of sensation. It can also affect basic body functions like blood pressure and breathing.
In the short term, a spinal cord injury is a medical emergency and requires expert treatment at a trauma centre. The initial treatment may include surgery, and is aimed at limiting the damage to the spinal cord and enhancing the potential for recovery.
Once a person is medically stable, they can begin a program of rehabilitation, which is also called rehab. This may begin while they are still at an acute care hospital, but most people will get the best outcome if they complete a program in a specialized rehab centre.
The long-term outcome of a spinal cord injury can be very difficult to predict. The one rule is that every injury is unique. Recovery of movement or sensation may occur, especially during the weeks or months following an injury.
If you’ve experienced a spinal cord injury, what you need to know is that you will be able to live a full and healthy life, regardless of how much recovery you experience. To do that you’ll need proper rehabilitation and good medical care, as well as equipments and other supports and the right information. And you’ll need to pay special attention to your body and learn new ways of taking care of yourself.
1.2 – Types of SCI
The effect of a spinal cord injury depends on the level of the spinal cord that is damaged, as well as the degree of damage.
The injury can happen in your neck, back, or lower back. The higher the injury, the more parts of the body are likely to be affected.
If the injury is at the level of you back or lower back, the muscles in your legs and possibly your trunk may be affected. When you experience paralysis in your lower body, this is called paraplegia.
A higher injury, at the level of the neck, can affect the hands and arms in addition to the trunk and legs. This is called quadriplegia or tetraplegia.
Damage to the spinal cord interrupts the flow of messages between parts of the nervous system. This can affect the way your body works in three ways:
First, you may experience changes in your ability to control the movement of your muscles in some parts of your body. You may experience paralysis, which means losing the ability to move a muscle, or muscle spasms, which are involuntary muscle movements.
Second, you may experience changes in your sensation in some parts of your body. This can affect your senses of pressure, touch, temperature and pain;
Finally, you may experience changes in certain special functions of the nervous system, called AUTONOMIC, that control basic body functions like blood pressure, temperature control and sweating.
1.3 – Levels of Injury
There are 33 bones called vertebrae that protect the spinal cord. These bones are divided into 4 groups, going from top to bottom: C, T, L and S.
• C stands for cervical, or neck. There are 7 bones in the neck: C1 at the base of the skull through to C7 at the bottom of the neck.
• T stands for thoracic, or chest. There are the 12 bones in the back, located behind the rib cage: T1 at the top of the back through to T12 at the bottom.
• L stands for lumbar, located in the lower back. There are the 5 bones in this region.
• S stands for sacrum, which is the bone at the base of the spine. Technically this contains 5 vertebrae, but they are fused into a single bone.
• Finally, there are 4 more bones fused together to make the coccyx, or tailbone.
The nerves that connect the brain to the rest of the body travel down the spinal cord and exit between the vertebrae. Nerves that go to the upper body leave the upper portion of the spinal cord, the cervical and thoracic segments. Nerves that go to the lower body exit lower down.
When you experience a spinal cord injury, the nerves at the level of the injury and below may stop sending messages properly. The parts of your body controlled by those nerves may be affected by the injury.
An injury to the neck area, for example at the C-6 level, can result in impairment to the arms, hands, trunk and legs, and can affect a person’s breathing muscles.
A lower injury to the back, for example at the T10 level, can result in impairment mainly in the legs, with no impact on breathing.
1.4 – Complete & Incomplete
In some injuries, the flow of information through the spinal cord is completely stopped. This is known as a complete spinal cord injury. In other injuries, some information is still able to pass through the injured area; this is known as an incomplete spinal cord injury.
Changes to your body function depend on the level of the injury and whether it is complete or incomplete.
Each spinal cord injury is as unique as the person who experiences it. Your medical team will make the most accurate prediction possible for your potential recovery, based on the level and type of your injury. Some people may recover sensation and the ability to move their muscles, and others may not. For those who do experience recovery, it’s difficult to predict how much they will recover or how long it will take.
1.5 – Physical Effects
After a spinal cord injury, many people experience changes other than paralysis and loss of sensation.
For example, your bowel and bladder control may be altered. Your blood pressure and circulation can be affected, and in some cases your ability to control your body temperature or your breathing.
Anyone with an injury above the T6 level needs to be aware of a dangerous condition called autonomic dysreflexia. Autonomic dysreflexia is an increase in blood pressure and signs include: headaches, sweating and goose bumps. For information about autonomic dysreflexia, click on the tab marked “AD”.
Spinal cord injury can also cause pain, resulting from damage to the nerves that transmit pain signals to the brain. In people with spinal cord injuries, this is called “nerve pain” or “neuropathic pain.”
You may also experience something called spasms. This is where muscles move without your brain telling them to, like muscle twitches. Spasms can be sudden, violent jerky motions or a repetitive, rhythmic pattern. They happen because the spinal cord still has life below the injury, but isn’t properly connected with the brain.
Again, every injury is different. Not everyone may experience pain or spasms, and different people experience them in different ways. You’ll need to learn about your individual circumstances and how your spinal cord injury affects your body.
1.6 – Emotional Effects
A spinal cord injury introduces a major change in a person’s life and brings with it strong emotions. People can experience sadness, anger, and anxiety, mixed with hope, regret and disbelief.
One of the hardest things to deal with can be the uncertainty about the future, especially early on. It can be frustrating to face so many questions, and the answers may not be clear at first. There’s also lots of new information to absorb.
These strong emotions can sometimes be overwhelming, but they’re a natural part of dealing with a loss. There are no right or wrong reactions to life-changing events. Every person responds differently. With time, and the opportunity to learn more, your emotions will change and become easier to handle.
A life-changing event like a spinal cord injury doesn’t just happen to you—it also happens to those who are close to you, your family and friends. You will find it easier to get through this by sharing your feelings and concerns with each other. This can help you find the answers you need, and may lower your stress, so you feel more relaxed and able to handle the situation.
In a crisis, you may be filled with sadness and anxiety about the future. This is normal when dealing with major change and the unknown. However, if this emotional state persists and interferes with your ability to live your life and take care of yourself, it may be a condition like depression or clinical anxiety. There are treatment options, so it’s important to talk to your doctor about it.
Section 2 – Recovery & Adapting
2.1 – Tough Questions
A spinal cord injury affects many different areas of your life. The change is often very sudden – there can be lots of uncertainty and it’s natural to have questions about the future. Some of these questions can be upsetting or even frightening. Others might simply deal with finding practical solutions to the new challenges you face.
People often ask questions like:
• Will I recover?
• How long might this take?
• Why me?
• Will I walk?
• Will I have to depend on others?
• How will this affect my family life and relationships?
• What about sex?
• Will I be able to live in my home?
• What about my job and finances?
The answers are different for each person, and may only become clear with time. Your journey will involve discovering your own answers, and learning from others. Talking it over can help you find solutions. It also helps you realize that you’re not alone in dealing with this.
Allow yourself, when you’re ready, to ask these questions and then take up the journey toward discovery the answers. This can be a good way to deal with a major change in your life.
You’ll find it especially helpful to talk to people who have gone through what you’re experiencing. Their stories show that you can live a full and healthy life and participate fully in society, after experiencing a spinal cord injury.
2.2 – Starting Rehabilitation
Rehabilitation begins as early as possible, once you are medically stable. This often involves a stay in a specialized facility. In rehab, you will work with a team who provide medical treatment, personal care, physical and occupational therapy and emotional support.
Rehab can be a busy time, with lots to learn and do. You’ll have a chance:
• To learn about spinal cord injury and how it affects your body,
• To build new skills, and
• To experiment with the use of adaptive equipment.
You’ll also be able:
• To develop your ability to cope with stress,
• To practice communicating your needs and directing your care, and
• To plan for your future.
It’s important to take advantage of every step in your rehabilitation program to help you prepare for life in new circumstances.
Although you may experience new and strange sensations, over time they’ll become more familiar and easier to handle. Try to pay attention to what your body is telling you.
No matter what your physical condition, your rehabilitation will also depend on your values and goals in life. Deciding what’s most important for you and learning how to achieve it, is essential for your success.
Remember, you’re not alone. As you develop an understanding of your situation, you can learn more from health professionals and from your peers about how to deal with the challenges you face.
2.3 – Adapting
Adapting is another word you might hear a lot. Adapting means experimenting and learning new ways of doing things. It’s something we all do, but it can be hard when we face sudden, major change and stressful circumstances.
Remember that the process of adapting can take time. People take it at a pace that suits them and adaptation has different meanings for different people.
After spinal cord injury, adaptation starts with learning about your medical condition and treatment. You may then go on to making decisions about reorganizing some parts of your life, and discussing issues like finances, housing, equipment and personal care.
Dealing with these issues can involve difficult and stressful moments, but always remember you’re not alone. There are health care professionals and organizations that are there to help you. Communicating openly, staying open-minded and gathering as much information as possible will help you solve problems and build plans for the future.
It’s also important to examine and recognize your personal strengths, talents and interests. This will help you work on setting new goals as you find ways of living a full and satisfying life.
2.4 – Stress
Disrupting and difficult events like injury or illness can bring a high level of stress. When we talk about “stress”, we usually mean the discomfort or emotional suffering caused by these events.
In situations of extreme difficulty, our bodies produce stress hormones, which affect many organs and body systems. Typical stress responses include:
• feeling tense,
• sweating, or
• a racing heart or stomachache.
These responses can show that our body is burdened by stress. If we experience a high level of stress over time, this could lead to:
• difficulties with sleep,
• increased blood pressure, and
• stomach problems, as well as
• depression, or
In illness or after an accident, some people also experience intense stress from a combination of physical suffering and emotional distress. In these circumstances, there are strategies that allow us to protect ourselves from severe stress.
Click on the tab above marked “Managing Stress” for some practical tips.
2.5 – Communication and Relationships
When someone experiences a spinal cord injury, there are some challenging and important subjects that need to be honestly discussed. For example:
• new roles and responsibilities in the family, circle of friends or work place;
• arrangements for personal care; and
• maintaining your independence and sense of control.
It’s extremely important to talk openly with family, friends, health professionals and service providers about these issues. By asking questions, listening to explanations and actively seeking information, you can build your knowledge and increase your confidence and ability to face challenges. Open communication also helps build the strong relationships you’ll need to support you.
Injury and illness also affect the lives of family, friends and even coworkers. They can experience shock and strong emotions, and may need to take up new roles and responsibilities. Try to discuss your feelings and worries, especially with people you’re comfortable with, and ask them to share their thoughts as well. This way you can comfort each other, lower your stress and you may find solutions faster.
Social dynamics can also change when you have a spinal cord injury. For someone with a disability, interacting with people in public settings, asking for assistance and getting around in environments that may not be wheelchair accessible can be very challenging. You may need some time and preparation to make the adjustment. As you interact with others, don’t worry if people sometimes seem uneasy—respond in a way that feels right to you, and over time you’ll grow into a greater sense of comfort and confidence in public situations.
Section 3 – Rehab & Beyond
3.1 – Navigating Your Journey
Recovery from a spinal cord injury is a lot like a journey. It can take you through different twists and turns, with challenges and adventures along the way. Some days can be really difficult, and others can be fun, with a bit of everything in between.
For most people, the journey begins in hospital and takes them back to life in the community. This can mean returning to your home, maybe with some renovations. It can also mean adapting to living in a new setting. Either way, the transition from living in hospital to living in the community is important, and it requires careful planning and preparation.
While you work on your physical recovery in rehabilitation, you will also make practical arrangements for your return to the community, including things like housing, equipment, finances and personal care.
There are people and services around you who can help you navigate your rehab journey. Your rehab team will help you prepare for your transition to the community. You may be able to work with a professional who can help you access the services you need, someone like a social worker, a case coordinator or rehab consultant. You can also reach out to an organization, like the Canadian Paraplegic Association, which serves the needs of people with spinal cord injury and helps them connect with their community.
3.2 – The Rehab Team
Rehab is all about helping you return to health and giving you the tools you need to lead an active, independent life. It starts with your time in hospital, and continues after you return to the community, with outpatient and home-based services.
Your rehab team is a group of health professionals like nurses, doctors, and therapists, and it includes you and your family. The head of the team is you! The team members help you learn how to care for yourself and make the most of your abilities. To do this, they will help you set your rehabilitation goals, and work with you to achieve them. The rehab team shares a commitment to your well-being and each member brings a different set of skills.
3.3 – Getting the Most out of Rehab
Your time in rehab is precious. There are lots of resources at your fingertips, and they’re often harder to access after you’re discharged, so it’s a good idea to take advantage of the team members and the knowledge they have to offer.
Here are some tips on how to get the most out of your rehabilitation:
• Take an active role: ask questions and speak up for yourself;
• Learn as much as you can; be willing to try different ways of approaching new situations; and
• Make connections with others who are going through the same thing.
• Remember that rehab is life-long, and that you can refresh and perfect your skills over time—you don’t need to accomplish everything in one day.
• Celebrate your accomplishments, and keep in mind that everything gets better with practice;
• Have fun, get out and explore, and try to enjoy the simple things.
3.4 – Taking Charge
You are your own best advocate. As you take responsibility for your health and well-being, you need to know how to speak up for yourself and assert your needs.
Here are some ideas that can help:
• First and foremost, get to know your body very well, and pay attention to what it’s telling you–if something doesn’t feel right, look into it & find out what the matter is;
• Next, educate yourself: learn to seek out and find the information you need;
• Finally, talk to other people who have had similar experiences; sharing knowledge and support can be incredibly powerful.
Your family members and friends can help you take responsibility by giving you space and freedom to exercise your independence.
3.5 – Success Stories
Everybody’s experience of living with a spinal cord injury is unique. But you’ll hear some common themes when people tell their stories. Check out some of these stories on this page.