Most people assume that being paralysed just means that you can’t walk or move certain parts of your body. There is so much more to paralysis than that and every Spinal Cord Injury can be different. When you or a loved one first get injured, you have people here, there and everywhere telling you different things and it can be a bit overwhelming to try and take everything in and understand what it all means. So we’ve created the guide we wish we had when Craig became paralyzed.
In this article, you’ll find everything you need to know about Spinal Cord Injuries and their side effects!
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What is a Spinal Cord Injury?
A spinal cord injury occurs as a result of damage to the nerves in the spinal cord.
The spinal cord is a long thin bundle of nerves, running from the brainstem to the base of your spine. It carries signals from your brain out to wherever they need to go in the rest of your body. This is how the brain interacts with the rest of your body to tell it to move or to carry sensations. Messages from the brain will travel through the spinal cord until they reach the nerves that will take them to the correct part of the body. So all messages from the brain will travel through at least part of the spinal cord before they arrive at their destination. You could say the spinal cord is the distribution centre for messages from the brain.
A spinal cord injury occurs when there is damage to some or all of these nerves. As a result signals will no longer pass through the damaged area and you lose the connection between your brain and other parts of the body below the damage. This means you may no longer be able to move or feel part or all of your body below the point of damage.
What Causes a Spinal Cord Injury?
Traumatic vs Non-Traumatic Spinal Cord Injuries
Spinal cord injuries can be traumatic or non-traumatic, depending on how they are caused.
Traumatic Spinal Cord Injuries
The difference between the two is that a traumatic injury is the result of a sudden impact to the spine which instantly damages the spinal cord. Craig’s spinal cord injury is an example of a traumatic injury. He had a cycling collision with a lorry where he went from having a perfectly working spinal cord to being paralysed in an instant upon impact with the lorry. Other common causes of traumatic spinal cord injuries include; diving into shallow water, motor vehicle accidents, violence, falls and sporting accidents.
Traumatic injuries are much more common in men, particularly young men, than in women as well as in over 65s. Generally speaking, young people tend to suffer more from crashes and sporting accidents whereas falls are more common causes for older people.
Non-Traumatic Spinal Cord Injuries
A non-traumatic spinal cord injury is the result of a disease or condition which damages the spinal cord. Non-traumatic injuries are not necessarily instantaneous (but could be) and you may notice you slowly lose sensation to your lower extremities or areas below the point of injury. Common causes of non-traumatic spinal cord injuries include tumours on the spine, spinal strokes, blood clots or as a result of diseases which attack the nervous system such as being bitten by a tick.
Types of Spinal Cord Injury
How somebody is affected by a spinal cord can vary dramatically based on the position (or level) of the damage on their spinal cord, and the severity of the damage (complete vs. incomplete).
Levels of Spinal Cord Injury
The level of a spinal cord injury will affect how much of your body is impacted. If the injury is in the neck (the cervical section) you are a quadriplegic/tetraplegic and if the injury is in the back, you are considered to be a paraplegic. The higher up the body that the injury occurs, the more of the body that will be affected.
Want to learn more about all the different levels of SCI and what they all mean?
You may have heard people refer to spinal cord injuries as a letter and a number. For example, Craig has a T4 spinal cord injury. This notation tells you the position of your injury and is referred to as your level of injury. The spinal cord is divided into 4 sections: Cervical (C), Thoracic (T), Lumber (L) and Sacral (S). This is where the letter comes from. The number will depend upon which pair of nerves in that section the injury occurs on.
The spine is made up of 33 vertebrae which surround and protect the spinal cord. Between each vertebra, nerves exit the spinal cord and branch out to the rest of the body. In general, nerves that control the lower parts of the body exit the spinal cord nearer to the base of the spine, and nerves controlling the upper parts of the body exit the spinal cord near the top of the spine. Therefore the higher up your spine damage to the spinal cord occurs, the more of your body that will be affected.
Complete vs Incomplete Spinal Cord Injury
The spinal cord is made up of a bundle of nerves. When a spinal cord is damaged, the damage may affect all of the nerves or just some of them. If all the nerves are affected, this is considered a complete injury and would result in no movement or sensation below the level of the injury. If only some of the nerves are affected then this is considered an incomplete injury. Incomplete injuries can vary dramatically from having no feeling and a small amount of sensation below the level of injury to having essentially full sensation and feeling below the level of injury.
Side Effects of Spinal Cord Injury
People often think of being paralysed as just not being able to walk or move certain parts of your body. While that is a huge part of it, the truth is, there is so much more to a spinal cord injury than not being able to move certain muscles! In fact, not being able to walk is just the tip of the iceberg and often the easiest thing to deal with. There are many side effects that can affect someone with a spinal cord injury.
Muscle spasms are a side effect that affects many people with spinal cord injuries. They are involuntary muscle movements or reflexes that typically occur below your point of injury. It is not uncommon to see the legs of someone who can not move them shaking. Early on in recovery after a spinal cord injury people might get excited that this is a sign of movement returning. Unfortunately, if you’re not controlling the movement then it’s likely just a muscle spasm. The intensity and frequency of muscle spasms can vary a lot from person to person. Some people don’t get them at all, some people have very minor spasms and some people get very strong and regular uncontrollable spasms that are very disruptive to their lives.
Muscle spasms do have some benefits, so if they’re not too disruptive, they’re generally harmless or even a good thing. If muscle spasms are very annoying and disruptive to your life, luckily there are ways that they can be managed and reduced!
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Autonomic Dysreflexia is a potentially life-threatening condition that affects people with a spinal cord injury, generally if the injury is at or above the T6 level. When signals can’t reach from below the point of injury can’t reach the brain, the body looks for other ways to relay that message. One of the ways your body does this is by increasing your blood pressure. With higher level SCIs, the body has no way of coping with this increased blood pressure, and it can keep escalating to fatal levels.
Autonomic Dysreflexia is extremely dangerous but it can be managed.
Another issue people with spinal cord injuries face is a much slower rate of healing below the point of injury. This is another side effect of your body not being able to communicate with your brain. In fact, healing isn’t the only thing that slows down. All of your bodies reflexes below the point of injury seem to function more slowly.
Circulation and Temperature Control
As someone who was always warm before his injury, it came as a big shock to Craig to suddenly be cold most of the time. This is another side effect of poor communication within your body, which makes temperature regulation difficult. Another reason for this is that your circulation is worse when you are paralysed. Using muscles helps with pumping blood around your body, particularly in your legs as they are far away from your heart.
People with reduced mobility are at an increased risk of getting pressure sores. Pressure sores are caused by constant pressure against the skin that limits blood flow to the area. These sores are particularly likely in wheelchair users due to a prolonged time spent sitting in one place. These sores most commonly occur on the bum and tailbone but can also occur in other areas. Able-bodied people tend not to get pressure sores because they get up and walk or change position when they feel their bum starting to get sore.
With a spinal cord injury not only are you spending prolonged time sitting down but also you can’t feel when your bum starts to get sore and your circulation tends to be worse. All these factors together can make you a very high risk for pressure sores. If a pressure sore gets bad enough it can put you out of action for weeks or even months, but with proper maintenance and care, they can be avoided.
Swollen Feet and Legs
The combination of gravity and not using muscles in your lower body leads to a build-up of blood and fluid in your legs and feet. For Craig, this was particularly obvious straight after his injury and slowly became less and time went on and he became more active. Having swollen feet and legs can be frustrating, and there are more consequences to think about, particularly when you can’t feel them.
Considerations for Swollen Feet/Legs
If your legs and feet are bigger than usual, you might not be able to wear normal shoes and socks on your feet without causing pressure over time. It is very common for people with these issues to wear shoes that are a size or two bigger than they normally would. Immediately after his injury, Craig had to wear loose-fitting shoes that were 2 sizes bigger than he used to wear. Now that the swelling isn’t quite as severe, he wears normal shoes that are just one size bigger than before his injury. Besides pressure, having swollen feet in shoes that are too small can also lead to other complications such as ingrown toenails and Autonomic Dysreflexia.
In terms of socks, we found that normal socks would give a red mark around the leg caused by pressure throughout the day. This is an easy fix as loose grip socks are commonly available.
How to Prevent Swollen Feet/Legs
The easiest way to manage swelling in your feet/legs is to elevate them regularly. Elevating your legs allows the blood to easily flow back to your heart. An easy opportunity to do this is during the night. Personally, Craig likes to elevate his legs on a couple of pillows most nights to help with swelling. One thing to consider if you have reduced sensation is when the swelling leaves your feet it has to go somewhere! Early on, we found that Craig would have a very full bladder in the morning and it could lead to “accidents”. Fortunately, as the swelling has reduced, this doesn’t seem to be such an issue anymore.
But what do you do if you don’t have time to elevate your legs throughout the day? The next step would be to look into getting some compression stockings. While there are some options for compression stockings available on Amazon, we would advise that you speak with your doctor for advice on what would work best for you.
A final solution for swelling, that we would consider only as a last resort, is medication. Diuretic medication can help the body shed excess fluid, but this comes at the expense of needing the use the toilet very often! Although these medications can help, long term use can have some unwanted side effects and we definitely recommend speaking to your doctor before taking something like this!
Loss of Bladder and Bowel Control
If you have ever spoken to people with spinal cord injuries, this often comes up as the thing people hate the most. Bladder and bowel function are controlled by the lowest (S) section of your spinal cord, and therefore nearly all people with spinal cord injuries suffer with this. If you can’t feel your bladder or bowels and don’t have the control to go on-demand, then you have to use other solutions to manage these basic bodily functions.
Bladder Control after a SCI
So how do you pee as a paraplegic? Well, there are many different ways to manage your bladder after a spinal cord injury. Depending on your injury you may need to use different medical devices to help you out. Check out this article on the different ways to control your bladder, and how to get hold of the medical devices you will need!
The number one way of going for a wee after a spinal cord injury is to use some sort of catheter. Catheters are a lubricated tube that you slide up your urethra and directly into your bladder. This allows the urine to empty through the tube and be disposed of. There are many different types of catheters depending on your situation. To find out more about bladder control and catheters including which catheters Craig uses and tips to avoid contracting a urinary tract infection (UTI) click here.
Bowel Control after a SCI
So how do you poop as a paraplegic? It’s not a pretty subject, but it is something that has to be done. There are lots of things to think about in terms of keeping your bowels functioning smoothly, and there are many different ways to empty them. Click here to read our article all about bowel care after a spinal cord injury!
Loss of Sexual Function
Like with bladder and bowel control, after an SCI you will likely have limited or no sexual function. While it is still possible for people with spinal cord injuries to have sex and children, things are a little bit more complicated and differ between men and women.
Sexual Function in Women
For women, the problems associated with lack of sexual function are a little simpler than for men. To start with, you will likely have little or no feeling in the genital area. This lack of feeling and communication with your brain makes it more difficult to become aroused and to orgasm. It is still possible for most women to orgasm after a spinal cord injury however, it may take longer than usual. In most cases, women can still get pregnant and have children with a spinal cord injury. For more information, check out this article.
Sexual Function in Men
For men, issues with sexual function are more complicated. Depending on your injury, you may have some or no sensation. This can cause difficulties in getting and maintaining an erection as well as the ability to orgasm and ejaculate. Fortunately, there are many products and medication available to help with these issues. Check out this article for more information.
Just because you have a spinal cord injury, does not mean that you cannot enjoy a full and active sex life. You just need to be a little more patient and experimental to find out what you enjoy.
Muscle Atrophy is when your muscles waste away, usually as a result of physical inactivity. When you have a spinal cord injury, it can be very difficult to stop muscle atrophy setting in as you often can’t voluntarily move all of your muscles.
Consequences of Muscle Atrophy
But why should you care about muscle atrophy? You may think that it doesn’t matter if your muscle’s atrophy when you can’t use them. While this is mostly true, you may wish to consider other effects of muscle atrophy.
Despite the obvious effect of those muscles becoming smaller, losing muscle mass can have other negative effects on your body. Having a reduced level of muscle mass has been associated with weakened immune systems, higher risk of infection and slower healing. Muscles also act as protection for your bones, so reduced muscle mass combined with reduced bone density from not weight-bearing as much on your lower limbs can lead to an increase in broken bones.
For the optimists amongst you, if the day ever comes where a cure for spinal cord injuries are available, having atrophied muscles could severely limit your ability to recover and walk again!
How do you Prevent Muscle Atrophy?
So all of these things are starting to sound a bit worrying, so what can you do to prevent it? Well, the number one way of preventing muscle atrophy is physical movement of the muscles. But how do you move your lower body muscles when you’re paralysed?
The most effective way of using your muscles when paralysed is using functional electrical stimulation (FES). FES involves applying low current electrical pulses in order to to make a muscle contract. The electrical output of the FES device activates the nerve cells which in turn tell the muscle to contract. Alot of companies make effective but very expensive FES based machines such as leg bikes which can be great for building muscle mass. Unfortunately, these machines are way out of budget for most people, however it doesn’t have to be too expensive to get started with FES. Lots of paralysed people have had great success using Transcutaneous Electrical Nerve Stimulation (TENS) machines. With these handheld devices and some electrical pads, you can easily activate your muscles at home and prevent atrophy!
While physical movement of the muscles is the best way of preventing Muscle Atrophy and building muscle, here are a few other things you can do to help:
Diet: Eating a balanced diet with a healthy amount of protein can delay the effects of Muscle Atrophy and help regain Muscle Mass in conjunction with physical movement.
Medication: There is some evidence that certain medications such as steroids can help with Muscle Atrophy. However this should only be considered with advice from your doctor.
Spinal Cord Injury Treatment and Recovery
While there currently is no cure for a spinal cord injury, there are some treatments which can improve the quality of life for people with a spinal cord injury, particularly for tetraplegics or quadriplegics.
Rehabilitation is the most common and intensive method of regaining your quality of life after a spinal cord injury. Nearly everyone who is unlucky enough to suffer a spinal cord injury has the opportunity to attend a spinal rehab centre. This may be funded by the government (e.g. in the UK), by an insurance provider, or self-funded. It is here where you learn to function in your new body, how to look after yourself and build up your strength.
After his spinal cord injury, Craig spent time at a few different hospitals before moving the Nation Spinal Injuries Centre (NSIC) at Stoke Mandeville in the UK. He spent around 3 months here doing intensive physiotherapy (physical therapy), occupational therapy, and mastering self-care. Want to find out more about rehabilitation after a spinal cord injury? Watch this video:
The most severe spinal cord injuries occur in the neck (C) section of the spine and result in quadriplegia or tetraplegia. These injuries affect all 4 limbs and can leave people with limited arm and hand function. Being able to restore some arm or hand function is a huge deal and would drastically improve a quadriplegic or tetraplegics quality of life. With extra function, it would allow people to grip objects, aid with transfers and significantly increase independence by allowing people to perform their own self-catheterisation and self-care.
Tendons are the tissue that connects muscle to bone and allows movement. In your arms, most people have duplicate muscles that perform the same function. After a spinal cord injury, some muscle groups may have multiple working muscles and are able to cope with less (donors) and some may not work at all. By surgically transferring the tendon from one of these working muscles to one that doesn’t work, it may be possible to restore some arm or hand function.
This provides an exciting opportunity for quadriplegics or tetraplegics to regain some much-needed function. Before you look into this option there are some things to consider. A tendon transfer is a surgical process and has a significant recovery time. After a tendon transfer, you may have to keep your arm immobilized in a cast for weeks, before having months of further therapy to increase strength. Despite the long and difficult recovery, this is an attractive proposition to regain some function. However, as with any medical decision, please discuss this first with your doctor.
A nerve transfer is another way of restoring function. In most cases, this is targetted at restoring arm or hand function for tetraplegics and quadriplegics. The process involves taking a nerve from above the point of injury and “plugging it in” to a nerve below the point of injury, restoring the function of that nerve. Using this technique, doctors can take nerves that perform redundant or less important functions and use these to restore significant movement in the arms or hands.
A slightly odd consequence of this surgery is that you may, at first, have to think about moving a different part of your body in order to activate the desired muscle. Over time your brain learns the distinguish signals so that you can move the muscle just by thinking about it.
Nerve transfers are a relatively new procedure to treat spinal cord injuries but have proven to be effective. The wound recovery time for is typically less than for a tendon transfer, however as nerves grow slowly, it may take longer to regain movement. After the surgery, it is likely that you will require months of rehabilitation. This procedure offers an attractive proposition to regain some function. However, as with any medical decision, please discuss this first with your doctor.
Treatments in the Pipeline
It is a common belief amongst scientists that there will be a cure for spinal cord injury within the lifetimes of young people. Currently, there are many promising medical trials ongoing that have the potential to restore significant function to paralysed individuals. In reality, if a cure ever does present itself, it is likely to be a combination of the techniques mentioned below. In this section, we will briefly discuss some of the more promising areas of research. If you want to find out more information about these treatments check out EndParalysis
Perhaps the biggest reason we can’t currently cure spinal cord injuries is the fact that within the human body, nerves do not heal particularly well. This is where stem cells could come in. Stem cells are special because they have the ability to transform into any other type of cell in the body. Most of the research in this area focuses on transplanting stem cells directly into the point of injury on the spinal cord. These cells are then treated with specific growth mediums to encourage them to turn into nerve cells. It is hoped that this supply of potential new nerve cells can help heal the damaged area of the spinal cord.
Nerve Scarring and Growth Inhibitors
One of the biggest challenges for nerves to heal at the point of injury in your spinal cord is the fact that nerve scarring occurs relatively quickly after injury, preventing new nerves from forming. Using clever biotechnology and enzymes, scientists are making progress towards slowing the formation of these scars and reducing them altogether. The human body also produces nerve growth-inhibitors which limit the ability of nerves to heal. Finding a way to suppress these inhibitors will also give the best chance for the nerves in your spinal cord to heal.
Electrical / Magnetic Stimulation
This technique isn’t so much a cure, but it can restore function below the injury level. It involves stimulating the nerves below the point of injury so that certain movements can be performed. Sometimes this procedure involves surgery to implant the device directly on the spinal cord, but in some cases, the implant can be outside of the body. Early trials of this have shown success in (temporarily) restoring some function to people with spinal cord injuries. What is interesting is that in some cases this function has remained after the stimulation had been turned off (for up to a few weeks).