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In Your Own Words: Lee’s Story

Lee's Story

We begin our 2019 CES awareness campaign with Lee’s story.  Lee got in touch with us before Christmas, keen to share his experiences of Cauda Equina Syndrome with us.  He first became aware of Cauda Equina Syndrome through a friend, before he was struck down with it himself.  Below is Lee’s account of what happened to him.

Lee’s Story

“About 3 year ago I became really good friends with a guy through a local gym. As our friendship grew he introduced me to his son, who was 26 at the time. He walked with crutches and I was told he had suffered with Cauda Equina Syndrome.  He had been misdiagnosed 3 times, by our local A+E, as having sciatica – even though the pain was excruciating.  The outcome was that he had ended up losing all feeling in his saddle area. He felt nothing from the waist down, but somehow he could walk and drive.  I was baffled as to how this could be and, no matter how he explained I couldn’t understand that with no feeling he could still carry out these functions.

Fast forward to the beginning of the year and I hurt my back while exercising. I put up with the pain then one day, just like clicking your fingers, I couldn’t pass water, hold in my bowels and barely walk as my left leg was numb. I went to my local A+E with a letter from my GP and said I needed urgent imaging.  Possibly Cauda Equina Syndrome.  I was turned away as I’d had my symptoms for over 6 hours.  I went back the day after to be told I had sciatica.  Thankfully I had known my friend’s son, so I wouldn’t leave until I’d had an MRI.

Eventually it was found that I had a fully prolapsed disc at L4/L5 and it was Cauda Equina Syndrome. I was rushed to another hospital and underwent emergency surgery through the night. 3 month later it happened again and I had a prolapsed disc at L5/S1.  I have no feeling in the outside of my left lower leg into my left foot, bowel and bladder incontinence, I’ve developed a stutter, still have horrendous back and leg pain that I’m awaiting a spinal fusion for.  But I now know how my friend’s son can walk and drive, we have become CES buddies now!  We both suffer with depression, but it’s nice to have someone to talk to who understands.”

Contact us

If Lee’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!