Providing bespoke care nationwide for clients with spinal injuries and neurological conditions
The scope of impact a spinal cord injury (SCI) has on the body can be incredibly widespread and varied, affecting almost all of the functions and processes of the body below the level of the injury. The physical effects and the events leading to the SCI can also have a significant psychosocial impact on both the person affected and the people around them.
An SCI can have a huge impact on a person’s social role, and their position within a home, workplace, social group and society – but, with adjustment and support, people living with the effects of a spinal cord injury can live as valuable and valued a life as anyone can hope for.
The level of impact a spinal cord injury has on physical function depends on the position of the injury and how complete it is – i.e. whether it affects only part of the spinal cord or whether communication from the brain to the nerves beyond that point is totally or near-totally broken.
As sensation and movement are restricted below the level of SCI, the higher the injury, the more impact it has. The impact of a spinal cord injury is therefore on a spectrum; very high spinal cord injuries – C1 to C4 – mean a person has near-total paralysis below the neck and will have severe respiratory involvement, meaning that a person’s breathing becomes dependent on a mechanical ventilator and they lose control and sensation below that level.
The lowest levels of spinal cord injury might have some effect on continence, sexual function and lower limb sensation, but may be manageable without significant changes or support.
Becoming dependent on mobility aids can feel very restrictive at first, but there is a huge range of equipment and support to enable people to stay mobile and involved.
The reduction in sensation and mobility that can come with a SCI bring with them a risk of tissue damage – pressure sores (‘bed sores’) can develop without regular positional changes, and a lack of sensation in the areas at risk mean that significant damage can occur before anyone is aware of it.
Pressure-relieving equipment – airflow mattresses and cushions can help, and a care plan for regular positional changes, checks and skin care is essential. Problems with continence, personal care, and sweating can also lead to excoriated skin, moisture lesions, fungal infections, and complications of broken skin such as bacterial infections and difficult-to-heal wounds.
The common feeling of dizziness when you sit or stand up too fast is caused by dropping blood pressure, and is known as orthostatic hypotension (OH). It can be exacerbated in someone with an SCI – the body’s natural response to the drop in blood pressure when we stand up is to constrict blood vessels in the legs, encouraging venous return and reducing the space within the circulatory system.
In people with spinal cord injuries, this natural response is often impaired or sluggish, and so drops in blood pressure with positional changes can be problematic. Changing position slowly can help, as can staying hydrated. Some medications can also make OH worse so if it’s a problem, it’s important to see a doctor.
People with spinal cord injuries at T6 or above and their families and carers should be aware of the symptoms and risks of autonomic dysreflexia (AD). AD is characterised by a sudden, uncontrolled rise in blood pressure as a response to some stressor. A very slow – or sometimes very fast – heartbeat often accompanies this blood pressure change, and autonomic dysreflexia can make someone very unwell very quickly.
The cause is often as simple but potentially serious as constipation or urinary retention – someone with impaired sensation may be unable to recognise a problem until the autonomic nervous system creates an exaggerated systemic (whole body) response. This response, if untreated, can cause serious illness, seizures, and cardiac arrhythmias. Suspected AD is a medical emergency.
AD is not always predictable, but the most common triggers for AD can be prevented through good nursing care, close management of bowel and bladder dysfunction and prevention of wounds or tissue damage.
There are different types and locations of pain someone might experience after an SCI. Nerve pain, or neuropathic pain, can occur even when the spinal cord injury means that that area of the body doesn’t experience any other kind of pain or sensation. Neuropathic pain is often described as feeling sharp, hot, ‘electric’, or like being stuck with a needle.
Pain after an SCI can be complex, multifaceted and difficult to manage, and specialist pain team intervention can be helpful. Some people find medications beneficial; others try complementary therapies or a combination of both. There are lots of different ways to manage pain, and it’s important to seek help if pain is a problem.
Problems with sexual function are common after SCI at almost all levels, and it can affect anyone. A lack of sensation and control of movement can diminish anyone’s interest in sex, and people may also be struggling with all the other physical and emotional issues surrounding life with an SCI.
An SCI can change a person’s self-image and confidence in their body. Having reduced sexual desire after a spinal cord injury is very normal, and it may pass; there are lots of ways to enjoy sexual contact even after a profound injury. It may simply take time, care, and adjustment – and spinal care specialists can give good advice for these common problems.
Spinal cord injuries can also affect fertility, particularly for men – not only through impaired sexual function and desire, but through changes in sperm count and difficulty in getting or maintaining an erection and ejaculating. Spinal cord injuries in women can sometimes causes changes in their menstrual cycle, but unless there are other injuries affecting the reproductive system, it is usually possible to get pregnant, and carry a pregnancy to term and birth.
People with spinal cord injuries are likely to experience specific challenges in pregnancy and when giving birth, but with some extra input and adjustment, there’s no reason not to expect a happy, healthy pregnancy and baby.
Bladder function is very commonly altered after an SCI and tends to follow one of two patterns of dysfunction – hyperreflexive or non-reflex bladder. People with injuries above T12 commonly have a hyperreflexive bladder condition; a bladder that is overactive, uncontrolled and unpredictable. Incontinence and moisture must be carefully managed to prevent excoriated skin and moisture lesions.
People with injuries at or below T12 may have a non-reflexive bladder – a bladder prone to urinary retention and flaccidity. People with urinary retention may have to have a long-term urinary catheter, or to intermittently catheterise. Good catheter care is important to prevent urinary tract infections (UTIs). Urinary retention can occur in people with spinal cord injuries at any level.
Bowel function is also affected by SCI. This is in part due to reduced gut motility after an injury, and changes in activity and diet. Bowel function is also affected by a loss of sensation, reduced awareness of a full bowel, and inability to empty the bowels through sphincter control and the ability to bear down. This can lead to constipation or impaction and needs to be very carefully managed.
Diet and the use of laxatives can help to regulate bowel movements. A flaccid bowel and lack of ability to empty the bowels can mean that a person with SCI needs help with manually removing stools. Conversely, some people with SCI experience overactive or uncontrollable bowel movements and require very careful continence care to prevent skin damage.
In people with injuries at T6 or higher, autonomic dysreflexia can be triggered by urinary retention, UTIs, moisture damage and skin breakdown, constipation and a distended rectum, bowel infections, haemorrhoids, and other conditions of the bowel or bladder. Incontinence can seriously affect self-esteem and self-image, and it’s a very sensitive subject to many people. Continence care is one of the most crucial roles of anyone caring for someone with SCI.
The level and completeness of a spinal cord injury determine the amount of physical impact it has. A high spinal cord injury – at levels C1 to C4 – can significantly affect the respiratory system: a person’s ability to breathe and speak independently. Someone with a complete high SCI may always be tracheostomy and ventilator-dependent.
Someone with a slightly lower injury may only need a ventilator some of the time or not at all. Even a C5 or C6 level injury, affecting all the nerves below that point, will have some impact on a person’s diaphragmatic control, so they may need a cough-assist device at times. People with extra respiratory needs after an SCI may become prone to chest infections, so careful management and monitoring of changes in their condition is essential.
The physical impact of a spinal cord injury means that some adjustments must be made. The position of the injury largely determines how much of their previous function a person retains, and the higher and more complete the injury, the more impact on their previous function – and the more impact on their lifestyle and, potentially, mental health.
The way in which the injury occurred may be traumatic in itself, and people who have had serious accidents often suffer from some degree of post-traumatic stress disorder. After a serious physically and mentally traumatic event resulting in an SCI, people also usually have to endure an extended hospital stay.
The effects of a stay in an intensive care setting are well-documented; ‘ICU psychosis’ or ‘ICU delirium’ is a common phenomenon, a form of delirium where a combination of a serious illness and the necessary intensive treatment in a highly medicalised and alien environment causes the patient to be confused, disorientated, and agitated. This is an acute condition, but the effects of an extended hospital stay can stay with a person for a long time.
In the longer-term, the physical changes and needs that come with a moderate to severe spinal cord injury mean that substantial lifestyle changes are almost always necessary. Significantly reduced independent mobility can limit much of the activity a person previously enjoyed, and severe injuries often make it impossible to continue to work, to look after family members in the same way, and to attend certain settings and activities.
Becoming dependent on others for physical needs such as washing and dressing, continence care, and possibly eating, drinking, even breathing, takes a period of emotional adjustment for most people. Reliance on mechanical ventilation can also be very restricting and can cause anxiety.
A spinal cord injury can also impact on personal relationships – and again, the higher the injury, the more physical effect it has, and the more impact on a person’s lifestyle. A high spinal injury may mean the loss of the relationships within a workplace. It may mean that a person becomes unable to care for children or other family members in the same way.
Spinal cord injuries can also change the balance within a partnership, with altered physical needs including sexual dysfunction, sensation and movement meaning that significant adjustments are needed to fulfil a couple’s romantic and sexual needs.
In short, any of the physical and social changes that come with a spinal cord injury of any degree can cause huge and restrictive changes to a person’s lifestyle. The psychological impact of this can be profound.
It is important to remember, however, that many people with even very profound high spinal cord injuries continue to lead full and happy lives, and there is no need to go through it alone. The world is becoming more inclusive and accessible all the time, and online and in-person (pandemic permitting) support groups are available.
At Total Community Care, our goal is to provide tailored care packages that enable people with extra care needs to continue their everyday lives. Some people need more support than others. Consequently, our care plans are individualised to ensure that support is designed to facilitate a person’s desired activities and lifestyle, with our minimum care requirements set around no less than 70 hours per week.
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