Total Community Care - Specialists in spinal & neurological care

Providing bespoke care nationwide for clients with spinal injuries and neurological conditions

24 Jun

Living with a Spinal Cord Injury: Common Questions

The effects of a spinal cord injury (SCI) can last a lifetime and vary hugely from one person to another and between injuries. The impact an SCI has on a person’s life and health depends on the extent of the damage and the area of the spine affected. An SCI can have a spectrum of effects ranging from very minimal altered sensation, or reduced function that does not require any significant changes to lifestyle, through to being paralysed and dependent on a ventilator.

The variation in SCIs means that it’s difficult to answer broad questions without assessing an individual’s situation, but there are some frequently asked questions about living with a spinal cord injury that can be addressed:

Why do spinal cord injuries cause paralysis?

The nerves that extend from your brain down the spinal cord and out to all parts of the body are what give your brain sensation feedback and control over movement. Some of the functions that this nerve-brain feedback loop are those that people can control themselves, like being able to move your fingers, and some of them are automatic, like breathing or controlling your temperature. If the spinal cord is damaged then the signals at that point are interrupted and the brain loses some or all control over control and sensation from that point down – broadly speaking, a back injury below the arms will affect the legs, bowel, bladder and sexual function; a neck injury will affect these plus the arms and possibly speech and breathing.

What is autonomic dysreflexia?

AUTONOMIC DYSREFLEXIA Cartoon style man in wheelchair holding head in pain cymbols clashing and heart pumping blood pressure upSome spinal cord injuries may make it difficult for someone to recognise early signs that something isn’t right with their body. Some of the most common problems people may experience without having any awareness of it include constipation, urinary retention, or anything that people without a spinal cord injury would experience as pain.

Without a pathway relaying information about problems in the body to the brain, these problems can become severe and may cause rising blood pressure and general feelings of illness. This is called autonomic dysreflexia (AD).

People with a SCI at T6 or above are most at risk of autonomic dysreflexia as they can experience significant problems with the bladder, bowels, and many other parts of the body without any sensation of them. The rise in blood pressure and other general effects on the body that this can have can cause serious problems and should be treated as a medical emergency and the cause of the AD found.

Can spinal cord injuries cause chronic pain?

The effects of an SCI can lead to long-term musculoskeletal or neuropathic pain, and some SCI can cause spasms or cramping muscles. It’s important to remember that pain is one of the symptoms that spinal cord injury specialists are very experienced in helping to control. It may be possible to identify and treat the underlying cause, and pain can usually be managed well with a combination of physiotherapy, massage, and medication, and other techniques that neurology teams and pain specialists can help with.

What bowel problems might I encounter after a spinal cord injury?

Continence problems and constipation are two of the most common complaints after an SCI, and they both require some management. Having an SCI can make a person unable to control their bowels and unable to sense the need for a bowel motion. An SCI can also affect the natural (unconscious) function of the bowel. The aim of good bowel management after SCI is to reduce the risk of incontinence or constipation. This can involve the use of laxatives, and suppositories or other bowel movement stimulants to encourage regular emptying of bowels at convenient, manageable times of the day.

What’s the best way to manage urinary incontinence after an SCI?

bowel management illustration with clock, window, wheelchair and recepticle - Christopher & Dana Reeve Foundation

There are a few different ways to manage this; each comes with pros and cons. Being too moist from not being cleaned up straight away when you pass water can lead to problems with skin condition and even wounds, and a catheter might be considered if protecting the skin becomes a serious issue.

Some people experience ‘urinary retention’ after a SCI, where the bladder does not empty – if there’s no urine being passed at all this is a medical emergency – or the bladder does not empty fully, which can lead to urinary tract infections. A long-term urinary catheter can be used where urine drains into a bag which can be emptied, or ‘intermittent self-catheterisation’ (ISC), where you or a carer can insert a catheter into the urethra at intervals to ensure that the bladder is completely empty.

The frequency of ISC depends on how well the bladder empties and how susceptible you are to UTIs. For longer-term, you can get a ‘suprapubic’ catheter (SPC). This is a tube inserted low down on the belly, just above the pubic bone, which is a permanent way of draining urine. Having a urethral catheter can increase the risk of urinary tract infections.

Do spinal cord injuries cause fatigue?

It is absolutely normal to feel fatigued after a spinal cord injury – beyond simply ‘tired’, fatigue can have a serious effect on a person’s quality of life. In the early stages after an SCI, the body and mind are adjusting to a lot of changes and possibly recovering from serious physical and emotional trauma. Fatigue can be a long-term symptom for people with an SCI – it may stem from disrupted sleep, depression, physical stresses or it may be a chronic symptom with no obvious cause.

Managing fatigue can depend on the underlying cause, and may require some lifestyle adjustments or extra help. Health and social care professionals should be able to offer advice and support.

Fatigue can indicate other problems too – if a person begins to experience fatigue that is abnormal for them and there’s no obvious cause, it could be due to some other illness or infection.

What is priapism, and what can I do about it?

Priapism – an involuntary, long-lasting and sometimes painful erection which is unrelated to physical stimulation can occasionally occur in some people with SCI, particularly C4 to C7 injuries. It’s not a very common long-term symptom but it can be distressing and embarrassing, and priapism in SCI can usually be well managed with medications.

Priapism can be an indicator of acute spinal cord injury, often pelvic trauma. Any new symptoms in people with normally stable long-term SCI should be assessed by a healthcare professional.

Why do people sometimes experience tingling sensations after SCI?

Even when nerves are seriously damaged there may be some sensation – it may be that some signals are still getting through but not in a way that your brain can process and translate into useful sensation – people often describe feeling prickling, tingling, or feeling like they’re in water.

Even people with complete SCI – such as a completely severed spinal cord where the brain receives no signals at all from below that point – sometimes experience ‘phantom’ sensations or discomfort.

Is dizziness common after a SCI?

Dizziness is quite a common symptom after an SCI, and can have a few different causes. One of the most common causes of dizziness in anyone is orthostatic hypotension (OH) – sometimes called postural hypotension. This is the feeling of dizziness when going from lying or sitting to standing, caused by a drop in blood pressure. In people without SCI, their body responds to this by contracting the blood vessels in the legs to help their blood return and reduce their overall circulatory volume, increasing the blood pressure to a healthy level. People with spinal cord injury may not have this reflex, and so are more likely to feel dizzy on standing, and may even fall or faint. Some medications also contribute to OH.

OH can sometimes be managed by going very slowly from sitting to standing position and by using a standing frame or other support. Sometimes it’s necessary just to sit or lie back down for a little while.

Can people still have sex after an SCI?

Absolutely yes! The mind is the most important sexual organ; sex and intimate relationships can be as important to someone with an SCI as to anyone else. Depending on the type and extent of the SCI, people may have to rethink the way they have sex; changes to sensation, movement, breathing and touch can restrict some activities, so creativity is important.

Can people still get pregnant after an SCI?

Pregnant Mom in wheelchair shopping for new baby

An SCI will not normally affect fertility, and many people go through absolutely textbook-normal pregnancy and birth even with profound SCI. There are certainly some extra challenges to pregnancy with an SCI – for example, altered weight and balance make people more susceptible to pressure damage, urinary tract infections may be more common in pregnancy, and higher injuries may make it harder to recognise onset of labour.

With a little extra care, an obstetric team who understand the specific needs of the individual’s spinal cord injury, and good, early planning, a healthy pregnancy and healthy baby are a realistic expectation after an SCI.

On the flip side, anyone who could get pregnant but doesn’t want to should take normal precautions.

Can an SCI cause breathing problems?

The higher the injury, the more of the body is affected. The highest spinal cord injuries in the neck – those at C3 or above – usually mean that the person has no control of the diaphragm or associated muscles and processes of breathing, and so is likely to be reliant on a ventilator. At C4 and C5, they may have some diaphragm control but need assistance with coughing or fully clearing the throat, and may need a ventilator part of the time, such as during sleep.

People with thoracic spinal injuries may still have some affected breathing as the diaphragm is spared by the abdominal muscles are affected – mechanical cough assist devices might be needed some of the time.

Spinal injuries below the thoracic level shouldn’t have any effect on breathing.

Do spinal cord injuries cause nausea?

Nausea is experienced by around one in five people with SCI – it can sometimes be managed with simple changes to daily routine, or may require anti-sickness medications. It is often a secondary symptom of conditions common in people with SCI, and the underlying cause should be considered. For example, some people with SCI may experience constipation, and constipation can cause nausea and vomiting. Some medications can also cause nausea. Any new or unusual symptoms in people with SCI could indicate an underlying condition and should be assessed by a healthcare professional.

Is there a cure for a spinal cord injury?

The amount of recovery that someone with a spinal cord injury can expect depends on how complete the injury is. There is no ‘cure’ for a severed spinal cord, but people can certainly make remarkable progress following rehabilitation with physiotherapy and special aids. Some people may be able to live independently and some will need help with most or all of their activities.

Spinal cord injury is an area of ongoing research and management of both the acute and chronic stages of SCI is improving all the time. The amount of recovery and progress in the earliest stages after the injury is a good indicator of how much someone will recover in the long term.

The symptoms, both acute and chronic, that a person experiences after a spinal cord injury depend largely on the nature, region, and extent of the injury. The potential for recovery is also very variable from one injury to another and the best advice and support is based on individualised expert assessment.

For people whose injuries mean that they need support, having a dedicated team of home carers with specialist training can give them the best quality of life. In addition, the correct support allows people with a SCI to maximise their independence as well as the ability to continue with the things that are most important to them. Total Community Care differs from most care providers as we provide a dedicated team that you choose yourself – we believe that each person should have control over who they allow into their homes and the most important parts of their lives.


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