Hidden impact of cauda equina

I live with cauda equina syndrome (CES) and in 2012 I founded the Cauda Equina Syndrome Association, a patient-led, non-profit community interest company.

I learned through my own experience, after an emergency operation for a herniated disc, that there is currently no care pathway for patients with CES. Once the more obvious injury has been treated, the operation is deemed successful. But the neurological damage that remains hidden rarely improves.

Signs and symptoms of CES include bladder and bowel dysfunction, neurological pain, mobility issues and often sexual dysfunction, all of which have a life-changing impact on patients.

Lack of support from healthcare services means many are isolated from family and friends who struggle to comprehend the complex and personal issues surrounding this invisible condition. As a support group we offer an emergency helpline number (03335 777 113) and our website includes advice about CES and managing the condition. We also advise on medical devices, intermittent self-catheterisation and pain management – among other topics. 

Our Facebook group allows members from around the world to share advice and we hold support group meetings throughout the UK.

We often hear stories from individuals who have lived with CES for several years but are unaware of simple things, such as new catheters or Peristeen bowel irrigation, that can improve quality of life massively.

Many people believe they suffer alone as they are told CES is such a rare condition. Our group endeavours to dispel this myth. Every year, more than 1,000 cases are recorded through spinal centres in the UK. However, many people never reach a spinal unit for treatment and are not recorded as having CES. 

We estimate that there are another three patients suffering for every one recorded – so it’s not that rare.

There are tens of thousands of people in the UK living with CES now and we are striving to reach them. We would appreciate any help you can offer as physiotherapists by passing our message of support on to your patients to help us make their lives happier and more positive.

• Claire Thornber is founder of the Cauda Equina Syndrome Association