What it’s like to live with cauda equina syndrome, from a CESA Peer Support Champion
I have always lived an active busy life, working as a nurse, being a wife and mother to two daughters. But in May 2019 my life changed when I developed Cauda Equina Syndrome (CES).
Like many I had never heard of this condition until I was affected by it, and after surgery I felt like my life was over. I didn’t know if or when things would improve; overnight I became dependent on others for everything.
I didn’t know where to turn for support but I knew I had two choices: I could give up, or pick up the pieces and try to move forward. I chose the latter.
Finding the right support to start again
Although I felt like the only person this had ever happened to, after some research I came across the Cauda Equina Syndrome Association (CESA) and no longer felt alone. Quite the opposite, in fact.
I have embraced the opportunity to become involved with CESA and now run the support group in Wales so I can share the knowledge I have gained with people who are just starting their journey.
Obviously returning to work was something that at one time I was unable to see as a possibility. I worked too hard to achieve the career that I wanted though so with support, encouragement, and adaptations I have been able to return to work. Although thankfully I did not work in a physically demanding role.
Help with everyday issues – pain, bladder and bowel problems
Every day is still a struggle, I need help with basic everyday tasks and suffer from fatigue, which often leads to evening and weekends in bed.
Every day I suffer with pain which can, at times, be overwhelming. And that’s despite the wide variety of medication available to me. Although medication may sometimes help, it has become a case of trial and error as there are so many different options for pain relief. I found being open with my GP and telling them when things just weren’t working or if the side effects were too severe was the best way to go.
Managing my bowel and bladder problems is also often a challenge. As a young woman I found the loss of bladder and bowel control highly distressing but through self-catheterisation I feel like I am more in control, although incontinence does still happen from time to time. Fortunately, through discussion with a bladder and bowel nurse specialist I have even found some catheters that are extremely discreet and easy to carry around.
Having limited mobility is also often a barrier. Although I was initially very reluctant to have any mobility aids or adaptations I would definitely recommend that anyone living with cauda equina contacts their local Occupational Therapists, as they have provided me with a wheelchair, handrails and a bath lift.
Living with the impact of cauda equina
Some days are dark, and I grieve for my old life. I grieve for the childhoods that have been taken from my children and experiences we will no longer share. I have, however, through grit and determination, started to get out and about more, using my wheelchair or mobility scooter.
As a family we have recently visited a theme park and a zoo and although I could not play the full part as I would have previously seeing the smiles on my children’s faces made it worthwhile.
Working with CESA
Being the Peer Support Champion for Wales is something I am passionate about and I am honoured to be a part of the Cauda Equina Champions Charity, even becoming a trustee for the organisation.
Through regular face to face and online support groups along with our social media platforms, I look forward to meeting others with CES and their families so that we can share our experiences and provide help, support and advice to each other.
If you’d like to talk to someone, you can visit and join the CESA support group on Facebook here >>
Bringing a claim
As I learnt more about CES, I realised that there had been delays in my care and many missed opportunities.
Making the decision to contact a medical negligence solicitor was daunting at first but I realised that the only way to change practice, and improve outcomes for others, is to highlight where it seems to have gone wrong.
After contacting Simon at Royds Withy King I found the whole process to be far simpler than I had initially feared. He explained everything to me and took control of the whole process whilst updating me at every stage on any progress that had been made.
Whilst cauda equina syndrome may be a daunting, and devastating, condition to be diagnosed with, it does not mean your life is over. Many, including celebrities like Duncan James, have experienced cauda equina syndrome and there are people out there who can support you to live your life as you want following your injury.
It may be a challenge, but the people I have met along the way – through CESA and elsewhere – have been a real source of support. Hopefully this guide has helped you, or someone close to you, start their journey to finding the right support.
Victoria Main is a Trustee and Peer Support Champion for the Cauda Equina Syndrome Association (CESA), and is sponsored by Royds Withy King