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Cauda Equina Syndrome: What is CES – the signs of the rare but serious condition and everything else you need to know

Cauda Equina Syndrome (CES) Awareness Day was established by the Cauda Equina Champions Charity and will be recognised this Saturday – 1 October.

CES is a serious but rare condition that occurs when the nerves at the bottom of the spinal cord are compressed. These nerves supply the muscles that control the bladder, bowel and legs and the skin from the groin and buttocks down to and including the feet.

CES can be caused by herniated discs in the spine (slipped or prolapsed disc), spinal stenosis, fractures to the spine, vascular problems and infections of the cauda equina, tumours and or cysts of the cauda equina.

Life-changing effects of cauda equina

The potential long-term effects of CES can be life-changing. These include paralysis, incontinence and sexual dysfunction, so doctors need to be able to recognise the warning signs associated with CES quickly.

The red flag symptoms

These symptoms sometimes called red flags include:

Severe back pain

weakness/numbness/pain down one or both legs

loss of feeling between the legs

numbness/tingling around the bottom and sexual organs

difficulty in urinating and difficulty with bowels movements

loss of sensation during intercourse

Inability to achieve an erection or ejaculate.

CES is a medical emergency

Where CES is suspected an emergency MRI should be performed to determine if there is a CES.  If a CES is diagnosed then treatment is usually spinal surgery to release the pressure on the nerves.

Patients have the best chance of a full recovery if diagnosed as an emergency and treated within 24 hours.

David’s story

Ignored or misdiagnosed, the neurological effects of CES can be considerable, and many people find their lives change forever. One of these people is our client David*, 33, who spoke to us about his experiences after he developed CES in 2018.

Q. What were your main challenges after being diagnosed with CES?

“Pain. Just doing simple daily tasks and moving around, my main challenge is how much pain I can be in. I’d also say it’s hard not really fitting into any group - I’m not fully able bodied, but at the same time not always recognised as disabled and this means there aren’t many places set up for sports or activities for people with CES”.

Q. What advice do you wish you had been given when you received your diagnosis?

“I wish someone had explained just how hard it could be on your body. I was just told it might get better, but no one explained how to deal with incontinence, erectile dysfunction or how incredibly painful it could be. There was just no information on how my life would be, which meant that I also didn’t know how to manage it”.

Q. What advice would you give to someone who had recently been diagnosed with CES?

“I’d say talk to everyone around you and just tell them how you’re feeling. Tell them about your pain levels, just so they can start to gauge how you’re going be on certain days. And don't be afraid to keep going back and ask for more help."

As medical negligence solicitors we understand the impact of CES on people like David and can help you make a claim if your life has been changed by the condition. We can put you in touch with charities and specialists to provide you with a proper care package to aid your recovery and improve your quality of life.

Find out more about how Irwin Mitchell supports people who have been diagnosed with cauda equina at our dedicated CES section.

*Real name changed to protect identity