Living with cauda equina syndrome (CES) can pose many challenges, but it is important to recognise that you are not alone. There is a wealth of information, support services and community resources that can help you to have the best possible quality of life. 

Cauda equina syndrome is undoubtedly a serious and life-changing disorder, affecting the nerve roots of the spinal cord and impairing a person's mobility and physical capabilities. If you are diagnosed with cauda equina, there is no doubt that your life will change - but it is by no means over.

In this guide, we will provide a comprehensive guide to what it's like to live with cauda equina syndrome, with insights from some of the cauda equina patients that JMW Solicitors has helped. We will also point you in the direction of support measures that can help you.

What is cauda equina syndrome, and what causes it?

Cauda equina syndrome 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. There are a number of potential causes of cauda equina syndrome, including:

• A herniated or slipped disc pressing against the nerves in the spinal cord 
• Spinal stenosis - a narrowing of the spinal canal can compress the cauda equina nerves, which can occur due to bone spurs, thickened ligaments or other degenerative changes in the spine
• Trauma to the spinal column, such as fractures or dislocations, resulting from a fall or other injury 
• Spinal infections, leading to inflammation or abscesses in the spine that result in nerve compression. These infections can occur as a result of surgery, injury or other sources, such as blood infections
• Tumours - both benign and malignant growths in the area around the spinal cord can compress the nerves
• Mistakes made by doctors during spinal surgery may inadvertently damage or compress nerves

Cauda equina syndrome 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. There are a number of potential causes of cauda equina syndrome, including:

• A herniated or slipped disc pressing against the nerves in the spinal cord 
• Spinal stenosis - a narrowing of the spinal canal can compress the cauda equina nerves, which can occur due to bone spurs, thickened ligaments or other degenerative changes in the spine
• Trauma to the spinal column, such as fractures or dislocations, resulting from a fall or other injury 
• Spinal infections, leading to inflammation or abscesses in the spine that result in nerve compression. These infections can occur as a result of surgery, injury or other sources, such as blood infections
• Tumours - both benign and malignant growths in the area around the spinal cord can compress the nerves
• Mistakes made by doctors during spinal surgery may inadvertently damage or compress nerves

What are the symptoms and long-term effects of cauda equina syndrome?

There are a number of red flag symptoms of cauda equina syndrome. Although symptoms vary from person to person, you should seek medical attention if you are experiencing any of the following:

• Sciatica, or pain radiating down one or both legs, often accompanied by numbness, tingling or weakness in the legs
• 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. 
• Loss of bladder and bowel function - cauda equina syndrome can lead to various problems with bladder and bowel control, including not having an urge to go to the toilet despite the bladder / bowel needing to empty, altered flow or sensation or , incontinence

If you have any of the above red flags symptoms, you should seek urgent medical attention and push for a referral to hospital for an MRI scan. When cauda equina syndrome is diagnosed, it should be considered a medical emergency, because if left untreated, the long-term effects of cauda equina syndrome can include:

• Chronic pain that is severe enough to interfere with daily activities
• Permanent damage to nerve roots, resulting in a loss of sensation or function in the affected areas, including the lower limbs and pelvic organs
• Chronic bowel dysfunction and loss of bladder control, necessitating the use of incontinence products or catheters, 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 treatments are available for cauda equina?

• Emergency surgery - in the first instance, it is vital that surgery to decompress the cauda equina nerves is carried out within 24-48 hours to give the patient the best possible chance of making a full recovery. Surgical treatment of cauda equina syndrome is highly time-sensitive, and the sooner surgery is performed, the better the chances of preventing permanent damage. The most common and effective treatment is decompression surgery, which aims to remove the source of compression and relieve pressure on the nerves. This can be done through a laminectomy, discectomy or other surgical procedures, depending on the cause of compression.
• 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, braces or wheelchairs may be necessary for mobility.

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

What kind of lifestyle adjustments might be needed for cauda equina syndrome?

There are various adjustments that people with cauda equina syndrome can make to their living arrangements in order to help them to cope with their health issues and manage their symptoms more effectively. These include:

• Home modifications - installing grab bars, ramps, raised toilet seats, shower chairs and stairlifts can make navigating your home easier, as can widening doorways and removing loose rugs to improve accessibility.
• Work accommodations - if you are able to return to work, 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.
• 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 to 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 to feel less alone, and able to rely on the support of their peers.

“My main challenge and biggest was mental. It is accepting the massive changes to your life and staying positive when faced with pain and other CES challenges."

Read Peter's first-hand account of living with cauda equina syndrome

Does cauda equina syndrome qualify for disability benefits?

Individuals with cauda equina syndrome may qualify for disability benefits, such as Personal Independence Payments (PIP) or Employment and Support Allowance (ESA). Your eligibility will depend on the severity of your condition and its impact on your daily life, and you will need to provide detailed information about your symptoms and how they affect your daily activities when applying. Gathering medical records, letters from healthcare providers, and any supporting documentation can improve the likelihood of a successful application.

The rules around disability benefits are often evolving, so it is best to consult the current government guidance before making an application. Getting in touch with Citizens Advice can also be helpful for getting support with your application.

What support is available for people with cauda equina syndrome?

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 to provide you with valuable advice and guidance on the various aspects of living with cauda equina syndrome.

• 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 - the UK national charity for cauda equina syndrome. Champions charity is patient led, dedicated to the CES community and in supporting those living with the condition with tailored services.
• The Brain Charity - an organisation supporting people with various neurological conditions, including cauda equina syndrome

If you have developed cauda equina syndrome as a result of a mistake made by a medical professional, you may be able to claim compensation. This can help you to pay for the care and support you will require throughout your life.

To learn more about making a cauda equina compensation claim, get in touch with the medical negligence team at JMW Solicitors today.

Jean was left severely debilitated after appalling errors were made in the treatment of cauda equina syndrome by both a GP and a hospital. After contacting the specialist solicitors at JMW for advice, Jean’s case was taken on by Melissa Gardner, who secured £2.75 million in compensation to enable her to cope with her disabilities.

Read the full case study here.