A Mother's Love (Forward - Spring 2025)

After her cauda equina syndrome (CES) diagnosis, Amy Moss, 37, from Bristol, had to adapt her role as a mum. This Mother’s Day, Amy shares how she coped with this change while celebrating her own mum and the role her wider family continues to play in her rehabilitation.

Amy’s surgery took place just 36 hours after the onset of her symptoms in March 2020. She believes that having knowledge of the condition’s ‘red flags’ combined with the expertise of emergency care staff made all the difference.

Tell us about your cauda equina syndrome (CES) diagnosis?

I’d played hockey that morning but had to come off as my back was really hurting. This wasn’t unusual – I’d suffered with a bad back on and off for years. Once home, all I could do was lie on the floor. I couldn’t move and had sciatic pain down my legs. My partner Stu came home later with our little girl Dotty who was 16 months old at the time.

How was this different from other back pain you’d experienced?

I had the sensation to go to the toilet but couldn’t pass any urine. I then lost sensation completely in my left leg and couldn’t move my feet. I’ve a physiotherapist friend who’d mentioned CES red flags in the past. We decided I should go to hospital, but I was in too much pain to get in the car. We rang 999 and I was taken to A&E.

What happened next?

After tests and an MRI, CES was diagnosed. I had emergency surgery a few hours later – within 36 hours from the onset. Waking up from surgery, I couldn’t move my foot – I didn’t have any function in my toes or feeling in my left leg. I needed help with my bladder and bowels. I thought the surgery would’ve sorted everything but soon realised that wasn’t the case. I wasn’t sure if I’d ever walk again. I stayed in hospital for over two weeks before heading home for a few days, then going down to Salisbury spinal unit for an inpatient stay.

Returning home can be daunting. How was it for you?

It was terrifying. I wanted to be back with Stu and Dotty but also didn’t want to go home. The care down in Salisbury had been brilliant; I was taught how to self-catheterise and manage my bowels but still found adapting to being at home difficult. Stu was brilliant throughout. We moved out of our family home and into an annex at my parents’ – their help was invaluable. Dotty was 18 months old by then and I physically couldn’t pick her up. Adjusting to that change in being a mum and a partner and being unable to do things by myself was hard. I wouldn’t see people for a long time. I didn’t want to be seen using a Zimmer frame or on crutches. It felt lonely. I’m quite an independent person but losing things like my driving licence and being unable to do things for myself was tough. I needed to rely on others. Not having my independence was one of the hardest things.

What kept you motivated during your rehabilitation?

Dotty was my biggest focus. I couldn’t put her to bed because I couldn’t bend over the cot. For months, I couldn’t pick her up in the middle of the night if she wanted milk or comfort her if she was crying. If she fell and hurt herself, I couldn’t go and help her which was soul-destroying. She developed such a strong relationship with Stu and my mum that she’d cry for them if she got hurt. I so wanted to get back to some normality with her. During times when I felt defeated, I’d remember I had this little girl – there was no greater motivation.

When did you start to feel improvements?

My brother Tom researched and gained a great understanding of CES and developed a rehabilitation programme for me which I did alongside physiotherapy and  hydrotherapy provided by the NHS. I began taking my first steps unaided around June 2020. As the summer went on, I was able to get on the floor with Dotty. I remember our first trip out together as a family. We went to the Cotswolds Water Park, and I was able to hold her in the water. It was a big moment!

You sustained a second disc herniation that year. You also became a mum for a second time, a year later. How did you manage pregnancy alongside rehabilitating?

I really wanted another baby, and my consultant assured me that I could go on to have children. We’d just need to manage things very carefully. After falling pregnant, I needed quite a bit of additional care throughout the pregnancy. I was supported to have a natural birth and Nola was born in June 2021. I still continue to do a lot of core rehabilitation to stabilise the area around my spine since she was born.

It’s Mother’s Day in March. Your own mum, Jane, has been an amazing support for you. What has this meant to you?

My mum means everything to me, as does my dad, Geoff. Mum was with me when I was wheeled in for surgery. She helped with Dots when Stu had to go to work, and I was in hospital. She ferried me everywhere and would bring Dots to see me when I was in hospital.

What does being a mum mean to you?

It’s life changing. There’s not another love like it. They just bring so much joy. They’ve given me the determination to get back on my feet and be where I am today.

You took on the Welsh Three Peaks Challenge to raise awareness of CES and funds for SIA and others. What do you want the wider public to learn?

Looking at me now, you might think I’m okay but there are a lot of hidden issues. For me, the worst aspects are bladder and bowel issues which I’ve found hard talking about. It’s such an intimate thing. Being completely incontinent was awful and having Stu and my family see me like that was hard. My children understand now. Dotty will see my catheter and say: “That’s the thing that helps you go to the toilet.” If I can help one person through sharing my story, I’ll be happy. I can’t fault the care I received and how those caring for me in those crucial early stages knew the CES red flags. I was in surgery quickly. Without that intervention, I wouldn’t be as I am today.

Looking back, what would have helped in those weeks after diagnosis? What could help now, four years on?

I was well looked after. I just don’t think psychologically I was prepared for such a life change. I have had counselling organised through the NHS which really helped. You do feel a burden on your family – I didn’t want to download my emotional state on them so put a front on. Counselling allowed me to talk honestly and to get upset. What’s difficult now is that CES spans so many different specialist areas. I must see a urologist, gynaecologist etc., but provision of services isn’t very joined up, meaning there’s a lot to juggle with managing all the different appointments.

This article was featured in the Spring 2025 issue of FORWARD magazine

---

More information

AMY’S THREE PEAKS CHALLENGE STORY