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In Your Own Words: Emily’s Story


Next in this series of CES awareness campaign articles is Emily’s story.  Emily contacted us over Christmas, eager to share her experience after reading all the stories we published last year.  She suffered from a bad back since having her first child in 2012 and after this slowly worsened over a few years, red flag symptoms started to present.  Below is Emily’s account of what happened to her.

I’d suffered from a bad back since the birth of my youngest. Every year it got worse. In June 2015 (she was 3) it stepped up a whole new level. Months of going back and forth to the docs for new meds. Never once was I told to look for red flag symptoms. Fast forward to the weekend of 20th November 2015. I’d been to the doctors a few days before for a new script, with worsening symptoms. It started with saddle anaesthesia. I put it down to the fact I was sat at the laptop on end lesson planning, prepping for an observation.

On the Saturday it got worse and I couldn’t feel myself wipe. Still I left it. I was far to busy to get worse, being a single parent to two beautiful girls, teaching and post grad studies. By Sunday I couldn’t feel myself wee, total numbness. My legs already had loss of sensation from the chronic sciatica I had been diagnosed with. Monday I went in for my teaching observations, barely able to walk and got sent home afterwards. I rang 111 who put me in contact with my GP to get an appointment that evening. My GP (who I hadn’t seen before) packed me off for an emergency MRI, explaining it could be CES after examining me.

At hospital they were very dubious it was CES and I didn’t get my MRI until Tuesday afternoon. By this point I’d lost the function of my bladder and was becoming constipated as well as having no sensation in my legs and saddle anaesthesia. On Wednesday morning I finally got my results. My consultant said it was one of the biggest herniations on L5-S1 he’d ever seen (he’s past retirement age), definitely CES and I was in surgery that afternoon. He also said he had no idea how I was still moving. It shouldn’t be possible.

I had my surgery on the Wednesday afternoon and thus started the road to recovery.

It’s been a long old road. Several weeks in hospital, over a year of physio and hydrotherapy then the exercise referral scheme! I went back teaching and post grad studies at 10 months post op, although I’m having a year out right about now. As for my problems go, I’m still in lots of pain and taking various meds. I have to intermittently self catheterize. I use crutches all the time, a scooter on long days out because my left leg has very limited sensation, flops at the ankle and yes, sexual sensation is reduced compared to before CES but I still feel blessed.

I’ve found new love. I’ve gone to rock concerts. I still adore walking up mountains I’ve just got to adapt and take my time. CES does not define me. Sure I have low moments but CES does not define me. It’s all about adapting.

My advice to anyone is learn the red flag symptoms, especially if you have a bad back. Saddle numbness, changes to your bladder and bowel and possibly an increase in pain (although for me that wasn’t a symptom).

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If Emily’s story has inspired you to share your own experiences with Cauda Equina Syndrome then please contact us, we’d love to hear from you!