It's time to spread greater understanding and awareness of a condition that continues to have a devastating and often unexpected impact on people's lives.
We're proud to support the Cauda Equina Syndrome (CES) Association and with the first ever awareness day behind us, we want to help them spread the word far and wide. This article takes a look at CES, the crucial red flags, and features our client Mandy's story - whose experience should be a warning sign for us all.
What is CES?
Lower back pain affects millions of people every year, and severe back pain can be a symptom of a serious condition that often goes misdiagnosed.
CES is a condition that occurs when nerve roots in the lower back are compressed. This results in back pain, numbness and/or tingling in the buttocks and lower extremities (sciatica), weakness in the legs, and incontinence of the bladder and/or bowels.
We've created a short animation which explains this condition in 90 seconds:
Mandy lives in Chelmsford with her husband, Derek and their two dogs. Her life was turned upside down after suffering from CES, which due to a delay in vital treatment, means she’ll continue to suffer with health problems for the rest of her life.
In early 2016 Mandy was suffering back pain for a couple of months, but then one morning she went to run up the stairs in her home and as she stretched she felt something tear in her back. She then went on to suffer a terrible pain, which Mandy described as “the worst pain I’ve ever felt in my life”. Over the next few hours, she developed pins and needles in her saddle area and if she tried to move, she suffered from a shooting pain down her left leg.
After two attempted visits to her GP, Mandy visited an osteopath, who examined her and felt she was suffering from a condition that could be quite dangerous. He wrote a letter addressed to her GP, which recommend an emergency MRI scan and a visit to her doctors. Mandy was seen by the GP a few days later but was not referred for an urgent scan. Instead, Mandy was prescribed pain relieving medication and scheduled for an MRI scan six weeks later.
The following day Mandy’s condition worsened, so she decided to go straight to A&E. Within an hour of her arrival she underwent a series of scans and was diagnosed with CES, as the osteopath had suggested a number of days prior.
Mandy underwent decompression surgery, but sadly because of the delay in her treatment, she was left with life-changing disabilities, including back pain, numbness, pain in her left leg, and ongoing problems with her bladder and bowel.
Picking up the pieces
Post-surgery, Mandy sadly had to make the heart-breaking decision to take early retirement from her job as a head teacher. This was a really hard thing for Mandy to do, but she knew it was for the best so she could focus fully on her rehabilitation.
Mandy said: “Prior to the surgery, I was at a real high point in my career and it was absolutely devastating to have to give all that up, but there was no way I could continue to work with the problems I have with my bowels and bladder. Some days, I even struggle to leave the house.”
She also made the decision to instruct our specialist Medical Negligence team to investigate the care she received before her diagnosis and surgery. It was agreed that had Mandy undergone an emergency referral and earlier surgery, it’s likely she wouldn’t have been left with bladder and bowel dysfunction.
Mandy explains: “I’ve found it very difficult to come to terms with the fact I now have a disability, and I worry about what the future may bring for me. It’s also upsetting to hear that it’s likely my condition wouldn’t have been as bad if I had been referred for surgery earlier. But, while I can’t change what has happened to me, I am so grateful for the support I have had from my family – I wouldn’t have got through the past few years without them.”
We helped Mandy access the specialist support and rehabilitation she required, so she’s able to focus on brighter days ahead.
Over the past few years, because of her rehabilitation therapy, Mandy’s in a place where her pain is manageable and she’s been able to start enjoy her life again. She’s a proud grandmother to seven grandchildren, and so being able to spend more time with them has been a true joy for her. She’s also loved being able to get back to her gardening again, and keeping chickens, which was something she’d done before her injury.
Mandy also decided to get a therapy dog, Delilah, to help with her anxiety and stress. Mandy said: “She really helps me as she provides me with something to focus on other than myself.”
Richard Kayser, the Medical Negligence solicitor who represents Mandy explained: “It’s been more than four years since Mandy was diagnosed with CES and she still continues to suffer the devastating effects of the condition every day.
“Early diagnosis and treatment is key when it comes to CES, and while we can’t change what Mandy’s gone through, it’s important that lessons are learnt to improve patient care.
With this in mind, Mandy has teamed up with us to raise awareness of the condition, by telling her story to hopefully help others understand what CES is, what the symptoms are and what you should do if you think you have symptoms.
Mandy said: “My life has changed dramatically in the last four and a half years. I’d never heard of CES before my diagnosis, and it’s been incredibly difficult to come to terms with what I’ve been through. I hope that by sharing my story and raising awareness of this condition, I might be able to stop this from happening to anyone else.”
CES – the charity and symptoms
The Cauda Equina Syndrome Association charity was established to help bring CES to the forefront of people’s minds to help speed up diagnosis and to help those who’ve been affected by the syndrome live happier lives.
Their promises include making sure CES becomes a household name so that everyone, including healthcare professionals, are aware of the ‘red flag symptoms’; and being available to offer support to those affected by CES via dedicated support groups, partnerships like ours and dedicated professionals and volunteers.
As well as offering training and information to all healthcare professionals to ensure they recognise what CES is and how it must be treated, the charity also provides general advice and support to help people deal with all issues surrounding the condition.
To find out more about the condition, visit the
Cauda Equina Syndrome Association website.
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