Cauda Equina Syndrome - After the diagnosis

Cauda Equina Syndrome - After the diagnosis

Every year more than 1,000 cases of cauda equina syndrome (CES) are recorded in spinal centres in the UK. Despite this, there is currently no standard NHS care pathway for people living with the effects of this life-changing condition.

What is Cauda Equina Syndrome (CES)?

Cauda equina syndrome is a condition which develops when the nerves at the bottom of the spinal column are compressed, sometimes by a disc herniation (slipped disc) or movement of the discs between the vertebra in the spine.

Cauda equina syndrome requires early recognition, and often emergency surgery is needed to release the pressure on the nerves. Whilst back pain is often one of the early signs of cauda equina syndrome, if left untreated, cauda equina syndrome can result in significant ongoing disability.

Symptoms will often include a degree of some, if not all, of the following:

  • impaired bowel function
  • bladder dysfunction and possibly incontinence
  • pain and numbness
  • neurological pain
  • mobility issues
  • sexual dysfunction
  • often resulting in significant psychological impact

What support is available?

The NHS can support a person suffering with the after-effects of cauda equina syndrome by addressing specific, individual symptoms or concerns. At the moment there is no clear standard pathway for addressing the condition as a whole, and to understand the combined effect of, and interaction between, each aspect of the condition.

As specialist cauda equina solicitors, we can’t change what has happened in the past, but we can often direct our clients to sources of help and ensure that the claim provides the necessary funding to meet their additional needs.

We often see clients who have bladder dysfunction, with problems such as urinary retention. Urological support can help a patient learn to self-catheterise, to ensure that the bladder is emptied regularly and fully, and thus avoid recurrent urinary tract infections.

Some clients experience bladder dysfunction with a degree of urgency. For these clients, bio-feedback (specialist physiotherapy) can sometimes be effective in re-training the muscles around the bladder to help relieve these symptoms.

Constipation is a common problem following cauda equina syndrome. Sometimes this is related to a problem with bowel function and slow transit, and sometimes this problem arises because a patient needs to take regular pain killing medication because of other CES symptoms.

Bowel specialists can help educate patients about diet and bowel management, and occasionally surgery may be recommended where it might be of help. We have had clients in the past who have undergone sacral nerve stimulation insertion, an electronic device which helps to manage bowel function.

Where a client suffers from neuropathic pain, they might benefit from help from a pain specialist.

Other areas in which we can help include specialist vehicles, wheelchairs and equipment to help with mobility, rehabilitation, adaptations to accommodation and vocational rehab to assist with getting back to work. 

How long can it take to get help?

It is quite common to be told that the symptoms that follow cauda equina compression can take a year to settle down or for any improvement to occur. However, for most people with late-treated CES, any recovery will be relatively small, leaving significant disability from the function that has been lost.

With the current NHS care pathway focussing on individual aspects of the injury, instead of treating the person as a whole and bringing the combined, multi-disciplinary treatment together, there will inevitably be long waiting times between appointments with different specialist consultants.

Is psychological support necessary?

Yes. There is no question that psychological support is needed after such devastating injury.

We have worked with a number of clients whose ongoing symptoms as a result of cauda equina syndrome have meant that they have been unable to return to work in the same capacity as they were working in prior to the diagnosis. Some struggle to return to work at all because of the impact and complexity of their symptoms.

Clients who experience cauda equina syndrome often continue to experience significant back pain despite surgery to remove the pressure on the nerves at the base of the spine. Neuropathic pain, foot drop, impaired mobility, bowel/bladder and sexual dysfunction all can have a psychological impact on an individual. The invisible nature of this condition can leave people isolated from friends and family. It can take time and help to adjust to the change in their lives.

Cauda Equina Syndrome Association

Having seen for ourselves the effects of cauda equina syndrome, Boyes Turner are pleased to support the Cauda Equina Syndrome Association (CESA) in their work to offer help and support for those affected by this life-changing condition.

CESA founder, Claire Thornber, is a long-term sufferer of cauda equina syndrome, and formed the support group to provide a forum for those in a similar situation to her own. The charity aims to help people adapt to their symptoms and achieve a happy and fulfilling life. 

Group meetings are held across the UK and provide a safe place for individuals to talk with professionals and peers, and to understand more about medical products, devices and innovations that might help them manage their symptoms.

The charity also runs a helpline for people living with cauda equina syndrome, whilst working alongside health care professionals to raise awareness of the symptoms of cauda equina, and the importance of prompt diagnosis.

If you or a member of your family have suffered disability from delayed diagnosis or treatment of cauda equina syndrome and would like to find out more about making a claim, contact us by email at mednegclaims@boyesturner.com.

The service was personal, professional and considered. I was treated so kindly and in the end I knew that not only had I found the right organisation but also the right person.

Boyes Turner client

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