Learning to Live With Cauda Equina Syndrome

Living with cauda equina syndrome (CES) can undoubtedly present significant challenges, but it is crucial to remember that you are not alone on this journey. With the right information, support services and community resources, you can enhance your quality of life and navigate the difficulties that come with this serious and life-changing condition.

In this guide, we will explore the various aspects of living with CES, providing advice on the impact of this condition and the methods that can help you lead a fulfilling life.

What is CES, and what are its symptoms?

CES is a serious and life-altering condition that occurs when the bundle of nerves at the base of the spinal cord, known as the cauda equina, becomes compressed. These nerves are responsible for controlling the function of the lower limbs, bowel, bladder and sexual function. Several factors can cause CES, including slipped/herniated discs, spinal stenosis, traumatic injuries to the spinal cord, spinal infections, tumours and errors during spinal surgery.

The symptoms of CES can vary between individuals, but there are several red flag symptoms that require immediate medical attention. These include:

● Sciatica, or pain radiating down one or both legs, often accompanied by numbness, tingling, or weakness in the legs

● Bladder and bowel symptoms, including: the absence of an urge to use the toilet despite a full bladder or bowel; altered flow or sensation; or incontinence

● Numbness or tingling in the groin, buttocks or legs, causing difficulty walking and maintaining balance

● Weakness or difficulty moving the legs, making it difficult to perform daily activities, such as climbing stairs or getting up from a seated position

● Sexual dysfunction, including erectile dysfunction in men and decreased sensation in women

If you have any of the above red flag symptoms, you should seek urgent medical attention and push for a referral to hospital for an MRI scan to ensure that the condition is diagnosed promptly.

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 impact your quality of life. These include:

● Chronic pain that is severe enough to interfere with daily activities

● Permanent damage to nerves, resulting in a loss of sensation or function in the affected areas, including the legs and pelvic organs

● Chronic bowel and bladder dysfunction, necessitating the use of incontinence products or catheters and bowel irrigation systems, which can significantly affect a person’s quality of life

● Permanent paralysis or weakness in the legs, which makes it difficult or impossible to walk or get around without the use of assistive devices, such as a wheelchair or crutches

● Sexual dysfunction or a loss of sexual sensation, which can strain relationships and affect self-esteem

What kind of treatments can help you manage CES?

Although the impact of CES can be severe, there are various treatment options available that can help to minimise the worst effects of the condition. The first priority should be to receive emergency decompression surgery or SI Fusion, which aims to remove the source of compression and relieve pressure on the nerves. This should be performed within 24-48 hours of diagnosis to give the patient the best possible chance of making a full recovery. 

There are also a number of longer-term therapeutic options that can help to relieve the symptoms of CES:

● Medication: Pain relief medication, such as non-steroidal anti-inflammatory drugs (NSAIDs) and opioids, can help manage pain. Corticosteroids may also be prescribed to reduce inflammation. In some cases, medications to improve nerve function or treat underlying infections may be necessary.

● Physiotherapy: A physiotherapist can help improve strength, flexibility and mobility through tailored exercises and stretching routines. Physical therapy can be particularly helpful in addressing muscle weakness, balance issues and pain management.

● Assistive devices: Depending on the extent of nerve damage, walking aids, orthotics or wheelchairs may be necessary for mobility.

Getting the right treatment can help people with CES to avoid permanent nerve damage and enjoy a better quality of life, which is why it is so important to have any telltale symptoms checked out as soon as possible to get an accurate diagnosis.

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

There are various lifestyle adjustments that can be made to help individuals with CES manage their condition more effectively. These include:

● Home modifications: Installing grab bars, ramps, raised toilet seats, shower chairs and stairlifts can make navigating your home easier. Widening doorways and removing loose rugs can also improve accessibility.

● Work accommodations: Discuss your needs with your employer to ensure a supportive work environment. This might include modifications to your workstation, adjustments in work hours, or the option to work from home.

● Mobility aids: Utilise walking aids, crutches or wheelchairs as needed to maintain independence. Working with an occupational therapist or physiotherapist is essential to make sure you get the most out of using these devices.

● Suitable transport: Those affected by cauda equina syndrome may need to arrange specialised transport to safely get around.

● Bowel and bladder management: Incontinence products, catheters, and a bowel routine can help manage problems with bladder and bowel function. Consulting a specialist in bowel and bladder care can also help you receive tailored guidance and support.

● Emotional support: Seek counselling or therapy to address the psychological impact of living with this lifelong condition. Connecting with support groups or others who have experienced similar challenges can also be instrumental in helping patients feel less alone and able to rely on the support of their peers.

Individuals with CES may also qualify for disability benefits, such as Personal Independence Payments (PIP) or Employment and Support Allowance (ESA), depending on the severity of your condition and its impact on your daily life.

You will need to provide detailed information about your symptoms and how they affect your daily activities when applying, using medical records, letters from healthcare providers, and any supporting documentation to support your application.

The rules around disability benefits are often evolving, so it is best to consult the current government guidance before making an application, or get in touch with Citizens Advice to help with your application.

What support is available for people with CES?

In addition to the services provided through the NHS, social care and government support systems, there are a number of 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

● The Brain Charity – an organisation supporting people with various neurological conditions, including CES

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

If you have CES and you feel your condition has worsened as a result of a mistake made by a medical professional, you may be able to claim compensation. For example, this may have occurred because your doctors failed to diagnose CES in a timely manner, or because of mistakes made during surgical treatment.

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 achieve the best quality of life possible.

By Eddie Jones, Partner and Head of Medical Negligence, JMW Solicitors