I was diagnosed with Cauda Equina Syndrome in April 2019. At the time, I was working as a staff nurse in urology, but my main clinical experience lay in orthopaedics and spinal, in which I’d worked for around 16 years, so I was very aware of CES and the urgency it requires. It started with a sudden onset of excruciating pain and an area of numbness just above where the buttocks met and progressed through all the red flags over the next seven days. Unfortunately for me, I wasn’t diagnosed fast enough to salvage the damage the compression had caused – despite querying CES on my first of many attendances at A&E, I wasn’t scanned until 12 days later and my first of two surgeries took place over 36 hours after that. Five years later I continue to have significantly impaired bowel function, but with slightly better bladder control. I can walk unaided, albeit it at a much slower pace and more recently I am having to use a walking stick due to pain, which continues to be a problem despite two surgeries. I have nerve pain as well as mechanical pain in my lower back and legs, with the right leg worst affected. I have no peri-anal, vaginal or vulval sensation and am no longer able to be sexually active. I lost my career as a ward nurse due to my injuries and am now working from home, albeit having taken a side step into occupational health. Prior to CES, I swam, went walking, enjoyed more physically active holidays, worked 12 plus hour shifts as a staff nurse and generally had a busy full life as a wife, mother and grandmother. Five years later, I almost don’t recognise myself.
In the last five years I was diagnosed with breast cancer and thankfully remain clear, but just this year I was diagnosed with epilepsy and PTSD, the latter in the main attributable to the events of April and May 2019. Unfortunately I worked in the hospital where my diagnosis was made too late despite my repeated requests for an emergency MRI scan. Though it was the last step I wanted to take, I felt I had no choice but to pursue my former employer via the legal system, which is ongoing.
The Cauda Equina Champions Charity was founded by Claire Thornber in 2010 after she was diagnosed with CES and found there to be next to nothing by way of support for those who struggle with the life changing impact this condition has. I found the group not long after my own diagnosis in 2019 and it now has over five thousand members worldwide. Claire continues to work tirelessly for the Charity, to raise awareness of this condition at national level and the Charity contributed to the National Suspected Cauda Equina Syndrome Pathway, a interactive tool to help diagnose and treat suspected CES, launched in October 2023, as part of GIRFT (Getting It Right First Time) Its thanks to her I can share my story now and to be asked to be an Ambassador for the Charity is an enormously humbling privilege.
Together with the other Ambassadors, I hope my story gets out there, resonates with others who may sadly have experienced the same or similar and will contribute to the fight to raise awareness of this less well known but devastating spinal condition.
