Learning to Live With Cauda Equina Syndrome

By Eddie Jones, partner and head of medical negligence, JMW Solicitors

Living with cauda equina syndrome (CES) can be challenging, but it is crucial to remember that you are never alone on this journey. In addition to the support your friends and family can provide, there is a wealth of information, support services and community resources available to you that can enhance your quality of life and help you to navigate the difficulties that come with this serious and life-changing condition.

In this guide, we will explore the various aspects of living with cauda equina syndrome, providing essential information and practical advice, and pointing you towards valuable support measures that can help you lead a fulfilling life despite the challenges that CES may bring.

CES: the basics

CES is a serious and life-changing condition that occurs when the bundle of nerves at the base of the spinal cord, known as the cauda equina, becomes compressed. These nerves control the function of the lower extremities, bowel and bladder, meaning that any damage to this part of the body can have serious consequences for a person’s life.

Symptoms of CES vary from person to person, but can include:

• Loss of bladder and bowel function, including not having an urge to go to the toilet, altered flow or sensation, or incontinence
• Pain radiating down both legs, often accompanied by numbness, tingling or weakness
• Numbness or tingling in the groin, buttocks or legs
• Weakness or difficulty moving the legs, making it difficult to perform daily activities, such as climbing stairs or standing from a seated position
• Sexual dysfunction, including erectile dysfunction in men and decreased sensation in women

Causes of CES can range from a herniated disc pressing against the spinal cord nerves, spinal stenosis, trauma to the spinal column, spinal infections, tumours, and mistakes made during spinal surgery that damage the nerves. If you start experiencing CES symptoms in such circumstances, seek medical attention straight away.

What are the long-term effects that CES can have on your life?

If left untreated, CES can lead to a range of long-term effects that can significantly affect your quality of life. These include:

• Nerve pain that interferes with daily activities
• Permanent damage to nerve roots, resulting in a loss of sensation or function in the lower limbs and pelvic organs
• Chronic bowel dysfunction and loss of bladder control, necessitating the use of incontinence products or catheters
• Permanent paralysis or weakness in the legs, which makes it difficult or impossible to walk or get around without the use of a wheelchair or crutches
• Sexual dysfunction or the loss of sexual sensation, which can strain relationships and affect self-esteem

What kind of treatments can help you manage CES?

Emergency surgery is the first and most important step for someone diagnosed with CES. The goal of the surgery is to relieve pressure on the nerves by removing or reducing the source of compression, and should ideally, but often isn’t, performed within 24 to 48 hours of the start of the red flags in order to avoid permanent damage.

If surgery is carried out before permanent damage is caused, then the patient can make a good recovery, with few, if any, residual symptoms. However, if surgery is delayed and the patient develops permanent cauda equina syndrome, then treatment will focus on therapies to reduce the impact of the long-term symptoms.

• Medication – pain management is a crucial aspect of treating the symptoms of CES.
• Physiotherapy – once the acute phase has passed, physiotherapy can play a vital role in managing CES. A physiotherapist can develop an individualised exercise programme designed to improve strength, flexibility and overall mobility. Such therapy can also help manage chronic pain, and address balance issues that are common with CES.
• Assistive services – depending on the extent of nerve damage, some individuals may require mobility aids such as wheelchairs, crutches, or walking frames. These devices can help improve mobility and independence. Orthotics may also be recommended to offer additional support and stability.
• Long-term care and rehabilitation – managing CES is not just about the immediate response, but also about adapting to the long-term consequences of the condition. This could involve a combination of therapies, medication management, regular medical check-ups, and possibly making modifications to the home or workplace.

It’s important to remember that each person’s response to CES is unique, and what works for one person may not work for another. Therefore, it is crucial to have open and regular discussions with your healthcare team to find the treatment plan that best suits your individual needs. The ultimate goal of any treatment plan should be to maximise your quality of life and ability to perform daily activities.

What lifestyle adjustments can make life easier for people with CES?

Living with cauda equina syndrome often requires significant adjustments to daily routines, activities and overall lifestyle. Here are some practical strategies for adapting to life with CES:

• Home modifications – modifying your home can drastically improve accessibility and make everyday tasks easier. This can involve installing ramps, grab bars, stair lifts and widening doorways. Adapting bathroom facilities with raised toilet seats or shower chairs can provide additional safety and comfort.
• Workplace accommodations – if you are able to work, consider having a discussion with your employer regarding possible workplace accommodations. These adjustments might include modifying your workstation, altering work hours, or exploring the possibility of working from home. The goal is to create a supportive work environment that takes into consideration your physical capabilities and needs.
• Mobility aids – depending on your level of mobility, you may benefit from aids such as crutches, walking frames or wheelchairs. Working with a physiotherapist or occupational therapist can ensure these aids are correctly adjusted and utilised, thus providing maximum benefit.
• Bowel and bladder management – CES can lead to changes in bowel and bladder function. Utilising incontinence products or catheters, as well as establishing a routine for bowel management, can help to maintain dignity and comfort. Specialist advice can provide tailored strategies and guidance in this area.
• Emotional support – living with a chronic condition like CES can have a significant affect on your emotional and mental health. Accessing psychological support through counselling or therapy can be invaluable. Connecting with support groups or others living with CES can provide a sense of community and shared understanding, which can be a tremendous source of comfort.

It is also well worth investigating whether you are eligible for disability benefits. Individuals with CES may qualify for Personal Independence Payments (PIP) or Employment and Support Allowance (ESA). Your eligibility will depend on the severity of your condition and how it impacts your daily life. When applying, providing detailed information about your symptoms and how they affect your daily activities will be necessary. This might include medical records, letters from healthcare providers, and any other supporting documentation.

It’s important to be aware that the regulations around disability benefits can often change, so always refer to the most recent government guidance. Organisations like Citizens Advice can provide further support and guidance with your application.

Making lifestyle adjustments and accessing appropriate benefits and support can help mitigate some of the challenges that come with living with CES, aiding in maintaining a sense of normalcy and improving your quality of life.

What support is available for people living with cauda equina syndrome

In addition to the services provided through the NHS, social care and government support systems, there are several organisations that you can get in touch with for advice and guidance on living with CES:

• Spinal Injuries Association (SIA) – the national charity dedicated to supporting the 50,000 people in the UK living with a spinal cord injury
• Cauda Equina Champions Charity – a patient-led organisation that aims to raise awareness of CES, and support those living with the condition with tailored services

What should I do if medical negligence contributed to my CES diagnosis?

In some circumstances, substandard medical treatment can be the cause of permanent cauda equina syndrome. For example, doctors may fail to diagnose CES in a timely manner, or mistakes made during surgical treatment can result in the condition becoming more severe.

If this happens to you, get in touch with a medical negligence solicitor who specialises in CES cases to find out if you have grounds to make a claim. They can guide you through the process and help you obtain compensation that will prove instrumental in paying for any care and support you require as a result of your diagnosis, meaning you can move forward and live the most independent life possible.

Staying positive and finding meaning with CES

Living with cauda equina syndrome undoubtedly presents numerous challenges that can affect your physical capabilities, independence and overall outlook on life. However, it is vital to remember that even amidst these challenges, you can still enjoy a good quality of life. Here are some strategies that may help:

• Seek professional help – don’t hesitate to contact mental health professionals if you’re struggling emotionally. Psychologists and counsellors can provide strategies to help manage anxiety or depression.
• Stay active – engage in regular physical activity, as advised by your healthcare provider or physiotherapist. Exercise can improve your mood, promote better sleep, and boost your wellbeing.
• Set realistic goals – despite physical limitations, you can still aim for and achieve realistic goals. They can be as simple as daily or weekly tasks, or larger aspirations like learning a new skill or hobby. Achieving these goals can provide a great sense of accomplishment and purpose.
• Connect with others – building strong relationships and connections with friends, family or others who share similar experiences can provide emotional support, reduce feelings of isolation, and offer new perspectives on living with CES.
• Practise mindfulness – mindfulness techniques such as meditation or deep-breathing exercises can help manage stress and foster a sense of tranquillity and acceptance. These methods can help you stay present, focus on the positive aspects of life, and better manage the pain and discomfort associated with CES.

Living with cauda equina syndrome can certainly present many obstacles, but with the right information, medical care and support, you can maintain a sense of purpose and meaning in life, and address the physical and emotional challenges that CES presents. It’s important to stay positive and seek out the resources and support you need to live a fulfilling life.