When I was on the hospital ward after having my spinal surgery, I was told that other patients on the ward had had similar surgery to me with cauda equina syndrome (CES) symptoms. The staff actually named it the ‘cauda equina ward’.

I spoke with other patients who came and went over a few weeks. Some had much milder symptoms to me and were only in for assessment, whilst others had had the surgery to relieve the symptoms of the condition.

One patient I spoke with was of a similar age to myself (mid-30s) and also had a manual job. He’d had the surgery six months before and, due to being self-employed, he had to go back to work as soon as he could.

Unfortunately, he hadn’t taken the doctor’s advice and given himself a full six weeks rest - he had started driving after a month and was back working shortly afterwards. This had aggravated his injury and he was experiencing severe pain in his lower back.

While he was there, he was referred to the pain management team who after assessing him, advised a strong pain relief medication. He wasn’t happy about this as it affected his day-to-day life and his ability to work certain jobs.

He had asked for further surgery but was told it wouldn’t be possible. He was discharged the day after.

I had learnt that the surgery was always a last resort and had certain risks - it wasn’t something to be taken lightly and it included the recovery afterwards.

Due to the severity of my CES symptoms and resulting damage, I was having to learn to walk again after the surgery and had been left with permanent nerve damage to my backside area and bladder.

Something that may not have been so severe if I’d been aware of the symptoms early on after my injury.

The ‘red flag signs and symptoms cards’ are essential to prevent further damage and also provide a time scale in recovery if surgery is needed. They act as quick-reference diagnostic cards that help identify ‘red flags’ in a patient’s history, alerting clinicians and patients to the possibility of more serious health issues in people with back pain.

After I had been discharged and started my recovery, I was passed around to different hospital departments to look for help with the problems caused by CES.

I spent a long time at bladder and bowel clinics, both hospitals and local health centres, hoping to get help with my incontinence.

I was using catheters for my urine as I needed to make sure my bladder was fully emptied and try to stop infections. I would do this several times a day as I didn’t have any feeling of needing to wee. This could result in leaking, so I also wore incontinence pads.

My bowels also needed help to empty as a result of the nerve damage caused by the CES.

I would have days where I had no control over this and would self-defecate. Other times, I required laxatives and even enemas for blockages. I found this very demoralising at the age of 36.

During a visit to the hospital clinic, I was invited to speak to Dr Sue Greenhalgh who was a senior physiotherapist working on research studies for the early intervention of symptoms resulting from CES.

I met with Sue and agreed to help her to collect information and record interviews about my experiences.

Since then, I have helped with further research and information to help produce the ‘red flag card’ to warn patients about the early symptoms and dangers involved with CES.

I feel that my experiences, both good and bad, should be shared to help with further understanding of the condition.