24 Jun

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.

03 Jun

No two spinal cord injuries are exactly alike. The amount of feeling and function a person retains after a spinal cord injury (SCI) depends on the nature and extent of the injury.

The spinal cord is a bundle of nerves extending from the brain down the backbone. Pairs of nerves branch off from the spinal cord at each vertebra. These nerves are the control and sensation pathways from the body to the brain.

The nerves correspond to areas of the body and, broadly, the higher pairs of nerves service the higher parts of the body, and the lower nerves lead to the lower parts.

The nerves accountable for sensation are quite complicated; different nerves are responsible for different types of physical sense. A person with an incomplete spinal cord injury may lose their ability to detect changes in temperature, but may retain the ability to feel pressure.

Being able to feel vibration is a specific sense that can be lost. People with certain spinal cord injuries may also experience ‘phantom’ pains or sensations, such as pins and needles even where no functional sensation pathway exists.

Another sense that can be impaired by an SCI is proprioception – the body’s innate sense of the position of every part of itself – the sense that means we know where each part of our body is in relation to the rest. If you close your eyes and extend your arm then try to touch the tip of your nose, you’re using proprioception.

Damage to the spinal cord affects the nerves from that point down, not just the nerves at the point of injury. It can affect sensation, coordination, movement and motor ability. Depending on its level and severity, spinal cord injury in most situations causes continence and sexual function issues.

Severe spinal cord injuries can make people more likely to be affected by other conditions. A person who cannot clear their own chest secretions by coughing is at risk of chest infections, and a person who has reduced sensation can be at risk of skin and tissue damage from pressure or moisture.

The term ‘spinal cord injury’ describes a spectrum of effects, but people with significant impairment from spinal cord injuries will need specialist support for many activities of daily living.

Complete Spinal Cord Injuries

A complete spinal cord injury means that the spinal cord is damaged at one or more points along its length, and the damage is severe enough that it doesn’t allow any nerve impulses at all to pass that point.

How ‘complete’ an injury is depends on the amount of function lost and doesn’t refer to the specific nature of the injury. In general, though, a complete spinal cord injury is one where the spinal cord is severed, compressed, or otherwise damaged enough to have total loss of function below that point.

Complete vs Incomplete spinal cord injuries

At the initial, acute stage of spinal injury it is not always clear how much function can be recovered, but a complete spinal cord injury means life-long and total loss of function below the level of injury.

Incomplete Spinal Cord Injuries

The effect of a spinal cord injury depends not just on the level of the injury, but on the amount of damage to the spinal cord at that point. The spinal cord is a bundle of nerves and the damage may only affect some of them. The area of damage, i.e. the front or rear, left or right sides of the spinal cord nerve bundle, determines the kind of function that is retained.

An incomplete spinal cord injury can have a huge variety of functional impacts, and so the phrase can be used to describe people who have the most minimum of symptoms – from the slightest changes in sensation – to very profound and debilitating injuries.

A person with an incomplete spinal cord injury may need assistance with every activity in their daily lives, or they may live completely independent and barely affected lives – or anything in between. Incomplete spinal cord injuries are a complex spectrum.

If we were to look at a cross section of the spinal cord, we could point out which area of the nerves relate to which function.

Spinal cord cross section illustration

This means that the type of incomplete spinal cord injury can give us a clue as to which functions and areas are likely to be affected; we describe categories of incomplete spinal cord injuries by the area of the cross section of spinal cord that is affected. People with incomplete spinal cord injury very often have good recovery of many of the functions lost to them in the acute stages of the injury.

Different Types of Incomplete Spinal Cord Injury

The type of function lost or preserved depends on the specific areas of nerves within the spinal cord bundle that are affected. The spinal cord is simply an extension of the central nervous system that starts at the brain, and like the brain the spinal cord has a left and right half, and different functions at the front (anterior) and rear (posterior) aspects. The nerves that make up the central cord also have their own distinct functions.  Types of incomplete SCI include:

  • Anterior Cord Syndrome: The anterior or front aspect of the spinal cord is damaged. Motor control can be seriously affected, even totally absent. There is likely to be a good level of sensation, possibly with some altered sensations like ‘phantom’ pins and needles.

 

  • Posterior Cord Syndrome: Where there is damage to the rear aspect of the spinal cord. This is rarely caused by a traumatic injury and more often caused by an internal process like a vascular event or local disease. Posterior cord syndrome doesn’t usually affect motor control but has specific effects on sensation, particular causing loss of vibration sensation and proprioception – the sense of awareness of our body’s position.

 

  • Central Cord Syndrome: This is usually characterised by weakness in the limbs and can range in severity from very slight to very debilitating. People with central cord syndrome can have good prospects for recovery. Younger people and those for whom the underlying cause can be identified and managed have a particularly good outlook.

 

  • Brown-Sequard Syndrome: This is where only one half of the spinal cord is damaged. The effects can be quite complex as the nerves on one side control movement and some aspects of sensation on that side of the body, but are associated with some pain and temperature sensation on the other side of the body. This means that someone with a complete lesion to the left side of the spinal cord, for example, will be paralysed and have some loss of sensation from that point down on the left side of their body, and will also have significantly impaired sensation on the right.

Grading Spinal Cord Injury

The American Spinal Injury Association (ASIA) developed a comprehensive physical and functional examination known as the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI) used to assess function across multiple key sites of the body and grade the severity of injury. The ASIA grades are known as ASIA Impairment Scale (AIS) grades A to E:

  • A – a complete spinal injury with no sensory or motor function below the point of injury.
  • B – A significant incomplete spinal cord injury where the person retains sensory function but no motor function.
  • C – an incomplete spinal cord injury where sensory function is retained, and more than half of the key muscles are significantly impaired.
  • D – an incomplete spinal cord injury where more than half of the key muscles have good function.
  • E – completely unimpaired – no spinal cord injury.

 

Incomplete SCI is more likely to respond to rehabilitation, and lots of function can be recovered by intense and tailored physiotherapy and management, including repetitive passive or active motion. The amount of improvement depends on many factors, including the level and extent of the injury, any other health conditions, and the amount and type of support the affected person is able to get in the early stages.

Rehabilitation programmes for people with SCI focus on practical functional skills; improving gait and balance is one of the most significant rehab goals in terms of subjective social and lifestyle improvement after SCI. People with complete SCI usually have a more predictable pattern of rehabilitation, as the ability to recover from a complete spinal cord injury after the acute phase is very limited.

People with an incomplete spinal cord injury do not always have a predictable pattern of recovery. The rehabilitation process can take weeks, months, even years, with improvements in functional ability continuing long into the recovery process.

Research into management of neurological injury is always ongoing and new techniques are being developed all the time. As a consequence, the outcomes for people with incomplete SCI are improving all the time.

Spinal shock

One of the reasons that it can be hard to predict how much of their ability someone will recover after a spinal cord injury is that they can suffer ‘spinal shock’ in the very first stages.

Spinal shock is the body’s response to an acute spinal cord injury; it occurs in the first few hours or days after the initial injury. The body’s natural response to any injury is to reduce blood supply and begin the clotting process, and areas of damage are prone to becoming swollen or inflamed.

These natural processes actually make a spinal cord injury worse, with inflammation causing pressure on already vulnerable parts of the spinal cord and a reduced blood supply meaning less oxygen supply to those parts of the body that are trying to heal.

Spinal shock can be recognised and managed in hospital and can have good outcomes. The condition can make it difficult, however, to predict how much functional improvement there will be after the acute phases of an SCI. When the inflammation settles down and blood supply improves, sensory and motor functions can improve as well, and good levels of rehabilitation may be possible.

Life After Spinal Cord Injury

The severity, level and area of an injury to the spinal cord can vary widely. Anybody with ongoing care or social support needs after an SCI should be assessed throughout a rehabilitation process. The purpose of rehabilitation is to get you as well and functional as possible, and then help you structure the best plan of care to meet your ongoing needs.

Illustration of spinal cord patient rehabilitationRehabilitation can be a lengthy process and doesn’t necessarily stop when someone is discharged from their rehab facility – having physiotherapists and occupational therapists as well as specialist carers and nurses as part of your home care team means attaining and maintaining the best possible functional ability and overall health after your injury.

Total Community Care work with the multidisciplinary teams involved in our clients’ rehab programmes and beyond. This means we can participate early in the process of planning for discharge home or can take over a care package with a thorough understanding of the needs of our clients.

Our clients are at the centre of everything we do. We believe that the best package of care starts with the client and is created in collaboration with the most important people in our clients’ lives. No two people are alike, and we help support the lives and lifestyles of people across the wide spectrum of extra care needs.

Our aim is to empower people to choose their own care team, plan their own package of care, and to prioritise the things in life that are most important – family, work, home life, leisure time and holidays away – we can provide tailored, specialised support throughout.

At Total Community Care we pride ourselves on providing the complete package to support our clients and their loved ones to continue the kind of lives they want to lead.

15 May

I was an extremely busy teacher for many years, and had an active social life, including going to the gym, dancing, seeing friends, and completely taking my life for granted. In the blink of an eye my life changed forever in March 2008!

My husband and I had been travelling back from Cornwall , after a family visit. We were only seven miles from home when we had the car crash from hell, whereby I sustained a SCI at C5, C6, C7, completely severing the spinal cord. We had rolled over three times and hit a tree, plus it took two hours to cut me out from the car.

All of the Emergency Services attended the scene and I was finally airlifted by the Dorset and Somerset Air Ambulance to Dorchester Hospital. I actually knew nothing about SCI and when a specialist told me that I would never walk again I said, “Don’t be so bl**dy stupid I’ve just bought a new pair of red high heels!”

I was in a critical situation because I was in Intensive Care for a week, then taken to Southampton Hospital to have my neck operation, followed by Poole Hospital and finally on to Salisbury Spinal Hospital for intensive rehab for a further nine months.

Eventually I understood that my life would never be the same again, as I was paralysed from the chest down, known as Tetraplegia or Quadriplegia. In addition to this I had scalped the top of my head, which required three further plastic surgery operations to redistribute my hair, so that all of the baldness was covered. I had to get to grips with this, especially being a female who has always liked all things girlie… hair, clothes, fashion and make up, etc.

The problem with SCI is that the general public know very little about it because we are a marginalised group in society, so less funding is available for Spinal Research. Another factor for me personally is that although more women are ending up with SCI today, the industry seems to still favour men when it comes to equipment, such as the style of wheelchairs. Also I’m short and probably classed as petite, so often I find that things are far too big for me. It is interesting to note that the specialist companies also charge costs that would make your eyes water!

Furthermore there are really hideous aspects that most of us with SCI have to overcome, such as problems with bladder, bowels and pain. Let’s just say that they are subjects no one likes to discuss! Many of us with higher spinal injuries suffer from ‘Autonomic Dysreflexia’ which needs very prompt medical attention, and at its worst could potentially lead to death.

Finally I would like to give my heartfelt thanks to all the Doctors, Nurses, Specialists, Surgeons and… last but not least… TOTAL COMMUNITY CARE, who have supported me over the last twelve years. I am able to interview my own Personal Assistants / Support Workers / Carers who enable me to live my life as independently as possible. ???

  • Peggy Sutton.
28 Feb

There is quite rightly a national and indeed global concern relating to the potential impact of Corona Virus.  The situation is fast changing but I thought it might be useful to make the governmental advice as of 27th February.

Inevitably there has been a great deal of misinformation. The most frequent question I have received has been around self-isolation and whether an individual should go to work.

The current advice is that self-isolation is recommended if an individual has recently visited specific areas or had direct contact with a confirmed person infected with the virus.  At this stage the advice is that contact with someone, who has been recommended to take the precautionary measure of self-isolation, does not necessitate any further changes to behaviour or work.

In addition, specific queries can be dealt with by ringing 111.

Giving the highest priority to standards involving hygiene and infection control can only assist in attempting to reduce the spread of this virus.

– Reg

https://www.gov.uk/government/publications/guidance-for-social-or-community-care-and-residential-settings-on-covid-19/guidance-for-social-or-community-care-and-residential-settings-on-covid-19

02 Jan

Happy New Year everybody! So I am getting married this May (sounds scary saying that)! So I thought I would write a bit about my experience with relationships and how I felt about relationships, being paralysed since I was 18 months old, my struggles, and how I feel now.

Growing up paralysed from the neck down around kids the same age as me I feel was beneficial because, like me, they didn’t know any different; I was never seen as being different to them. I had my first boyfriend when I was 9 years old and we were together for 4 years. Then I started getting thoughts of “why does he want to be with me? I can’t even cope with this every day so how can I expect somebody else to?” So all through my teens/early 20s I wasn’t interested at all. I used to wear pads for bladder function etc. I was ok but I’d get low moods quite a lot. Sometimes I’d go on chat rooms online just for the chat and company, but I still thought I can’t do that to someone (because I always put others before myself). I then had an operation on my bladder called a Mitrofanoff which meant I wouldn’t need to wear pads anymore.  When I had the operation it resulted in quite serious complications, which meant I spent the majority of 2 years off and on in my (then) spinal unit, and at one point my family were told to prepare for the worst.

I had a lot of time to think in there and I’d hear patients who were newly injured saying things like “what if I get stared at?” and it inspired me to want to do more. After being in hospital that long, when I finally went home with mum and dad it was so strange. I felt like it wasn’t home anymore which really upset me, and I thought “what am I supposed to do now?” So I started studying a BSc Honours in Health and social care. I then decided that I wanted to move to Independent living because, although my family are amazing, they’d get stressed about if the supplies weren’t delivered, and because of the complications with my Mitrofanoff surgery I would bypass a lot and they’d get frustrated because of that. So I moved to Independent living in 2010.

I was with my first care company, and everything was fine until I moved into my own bungalow which was when the cracks started to show. I didn’t feel encouraged to live my life the way I wanted, which dragged me down and sent me into depression because it felt like nobody cared. I definitely thought at that point I’d never want somebody else to have to put up with all I do. I stopped my degree, I just wasn’t interested in anything. In the end I refused to go to any meetings and eventually I changed care companies. The second care company was better, but they still weren’t great though.  The fact that I knew how my care should be handled meant that I can tell people what to do, and the company would allow carers that hadn’t shadowed to come here, and I had to basically train them. But I finished my degree and was working for the National Autistic Society at the time. I was still depressed and so I booked myself a doctors appointment after work and sat and cried in front of the doctor.

Then in 2016 I found my now fiancé, Rich, on Plenty of Fish. I was about to come off it but saw him and thought “well he’s either going to be like all the rest or he’s not”. He actually said he’d seen me downtown a few years before. At first I did freak out thinking “why would he like me?” and we decided to meet but I kept thinking I might back out; until he said he’d wait for me. So then I thought “I better go now else he’ll be sitting there all day!” We’ve been together ever since, been through some tough times but I now don’t worry like I used to.

I’ve also found a care company which is in MY opinion (because I like people to make up their own minds) person centred, they try their best, understanding, they do listen, and in the previous care companies I’ve never had the Director come to visit when I’ve had an issue, and I personally think the involvement of everyone at TCC is what makes me say it’s the best care company I’ve been with.

So my advice to anyone who thought like I did: you shouldn’t care what people think, it’s your life and you are what matters. Stand by what you want and in terms of relationships, the right one will find you. I always say things happen for a reason and everything has a knock-on effect, so if I hadn’t had that operation (even though it does play up) all the rest wouldn’t of happened, and now I’m happier than I’ve ever been.

Thank you for reading!

Sarah x

Sarah Yeo with her fiancé