Sitting paddling in her kayak, Mandy Smith grimaced as she felt another agonising twinge of back pain.
She was also alarmed by new shooting pains now running down the front of both her legs.
‘When I got out of the kayak, I couldn’t stand up straight – I was doubled over with the pain, which quite literally took my breath away,’ recalls Mandy, now 51.
Mandy had been back and forth to her GP three times in late 2021 and early 2022, and went to two physiotherapy sessions. They didn’t really help, as her symptoms seemed to come and go, punctuated by painful flare-ups.
But this time her pain was off the scale.
‘The new pains in my legs particularly scared me – I’d reached the point where I knew I couldn’t go on like this any longer,’ recalls Mandy, an NHS administrator who lives in Liverpool with husband Terry, 51, who works in education, and their three sons.
By now she was unable to dress herself or drive, she recalls, and painkillers ‘didn’t touch’ her excruciating pain.
She was also at a loss to explain the cause. ‘I thought it might be the menopause or just a muscle sprain,’ she says.
Mandy Smith had an MRI scan which showed that a disc in her lower spine had slipped out of place and was compressing the cauda equina nerves
Desperate for help, she called a nurse friend who also suffered from back pain. She mentioned a rare but emergency condition, cauda equina syndrome (CES), where the nerve roots at the base of the spine (called the cauda equina) are compressed.
Mandy had never heard of it but realised she had a lot of the symptoms, which included leg pain and urinary urgency.
Mandy’s friend convinced her to go to A&E immediately, where an MRI scan showed that a disc in her lower spine had slipped out of place and was compressing the cauda equina nerves.
The surgeon warned Mandy that she could end up paralysed and incontinent unless they operated immediately.
‘I was horrified when I saw Terry was crying, and then I broke down too,’ she says.
Yet Mandy was relatively lucky that she was diagnosed quite quickly.
Amateur world champion powerlifter Martin Brown, 44, waited four days for his diagnosis seven years ago and, as a result, has been left with permanent life-changing damage to his bladder, bowel and legs.
His problems started when he collapsed in the gym while performing a 260kg dead lift.
Although he’d lifted similar weights many times before, on this occasion he was halfway through the lift when suddenly he couldn’t feel his legs.
Martin, who lives with his partner Zoe, 48, a health club manager in Bolton, Lancashire, says: ‘At first I thought I must have torn a muscle, but then I felt pins and needle sensations in both legs and couldn’t get up off the floor without help. The pain was really excruciating in the front of both my legs.’
Amateur world champion powerlifter Martin Brown needed emergency surgery to remove bits of a disc from his spine which were compressing nerves in his spinal canal
Later, once he was back at home, Martin called 111 as the pain hadn’t abated, and by then he had tingling and numbness in his groin area.
When an ambulance failed to arrive after two hours, Zoe drove Martin to hospital.
The A&E doctor who examined him eventually said Martin needed an MRI, but that he’d need to take painkillers at home while he waited for a referral.
When Martin said he had private medical insurance the doctor wrote him a referral letter for an MRI scan, but it was December 23 so the insurer was shut for Christmas.
After a few days of agony, Zoe drove Martin to A&E again on Boxing Day morning,
‘This time I got a totally different response,’ he recalls. ‘The doctor was immediately concerned about my symptoms and arranged a transfer to Salford Royal Hospital in Greater Manchester ten miles away, so I could get an MRI.’
But a six-hour delay in finding an ambulance meant he didn’t get his MRI until the middle of the night.
‘The next morning, they woke me to tell me I had a huge disc prolapse in my lower back – material from one disc was wedged in the spinal canal and this was why I’d lost sensation in my groin and legs.’
Martin needed emergency surgery to removed bits of the disc from his spine which were compressing nerves in his spinal canal – but he was warned the nerves might already have been permanently damaged.
‘My mum was sat beside me in tears, but I was in so much pain by that stage I just wanted it relieved by surgery,’ says Martin.
‘When I came out of surgery, I could barely walk a step,’ he says.
In fact, it took several years before he could walk properly again, and he relied on a wheelchair to travel any distance outside or to go on holiday.
‘I also had impaired bladder and bowel sensation, having to rely on enemas to empty my bowel. That feeling has never come back,’ he says.
CES is a medical emergency – the cauda equina, the ‘horse’s tail’ of nerve roots that spread out from the lower spine, controls bladder, bowel and sexual function.
Symptoms of CES include sciatica (pain in the buttock radiating down one or both legs) and/or lower back pain, plus any of the following as new symptoms: difficulty starting to pee, or impaired sensation of urine flow; lack of sensation in the genitals or around the anus; weakness in both legs; loss of sensation of rectal fullness (not sensing when you need to pass a stool); and sexual dysfunction (affecting the ability to achieve an erection).
Although some of these symptoms are common, what is significant is if any are ‘new and have started within the last 14 days’, stresses Mike Hutton, a consultant spinal surgeon at Exeter Medical and clinical lead for spinal surgery for the NHS England Getting It Right First Time programme (a national initiative to improve patient care).
Patients who suddenly find it difficult to open their bladder or bowel or start feeling numb around the ‘saddle’ area (between the anus and the genitals) should ‘definitely seek emergency medical help’, says Irfan Malik, a spinal neurosurgeon at King’s College Hospital NHS Foundation Trust and HCA’s Harley Street Clinic, both in London.
‘If the nerves are compressed, they can be deprived of a blood supply and this can cause permanent damage. We need to operate immediately – within hours, ideally – to relieve the pressure on the nerves,’ he explains.
‘Altered sensation around the genitals and anus may just affect a small area, or as large an area as a horse’s saddle.’
There are three questions GPs should ask their patients to distinguish whether back pain and/or sciatica is actually CES, Mr Hutton says. These are: ‘Do you “know” when you need to pee, can you feel yourself peeing, and when you touch or wipe your genitals do they feel normal?’
The main cause of CES is a slipped disc. ‘This can be caused by degeneration or trauma,’ says Mr Mailk, who adds that while slipped discs are extremely common, only a tiny minority will cause CES.
Why some slipped discs cause cauda equina and others don’t isn’t clear, but possible reasons include inflammation levels, the size of the patient’s spinal canal and whether the blood supply to the nerves is interrupted, says Mr Hutton. CES is also more common in women.
Other causes include spinal stenosis (narrowing of the spinal canal due to ageing), tumours in the lower spine, and infections which can cause inflammation and pressure on nerves.
CES can also be triggered by major trauma from car crashes and slipped discs during sports injuries, which physically crush the nerves.
The diagnosis is confirmed by an MRI scan. Unfortunately, the condition can be missed: 23 per cent of the legal claims against the NHS in England for spinal problems relate to CES.
An analysis of data by the NHS Cauda Equina Syndrome pathway team in February 2023 found that legal costs (including settlements) for spinal services in England came to more than £100 million a year – around £25 million of this was for CES cases.
Key factors in these claims included delays in diagnosis, recognising red flag symptoms and MRI scanning.
A national shortage of radiographers means some hospitals don’t have emergency MRI services, which can delay diagnosis, says Mr Hutton.
He adds that the publication in 2023 of a national pathway with clearer diagnostic guidelines to help in diagnosing CES cases is already leading to a drop in litigation cases.
It’s come too late for Martin, however.
‘I grieved the loss of my old life – all my hobbies and holidays revolved around my powerlifting, and I couldn’t do it ever again,’ says Martin, who was awarded an out-of-court settlement by the NHS in July 2023 for the delay in diagnosing and treating him. He now works part-time in his old job as a regional health club manager.
‘If I hadn’t experienced that four-day delay in getting an MRI and treatment, maybe these disabilities I’ve been left with could have been avoided.’
Mandy also needed emergency surgery to remove a prolapsed disc from her lower spine, and still feels the effects today. ‘I have to self-catheterise to empty my bladder, which makes me prone to frequent urinary tract infections,’ she says.
She needs bladder Botox treatment (available on the NHS) to help with urge incontinence and takes gabapentin painkillers for long-term nerve pain in her back, which make her feel very tired.
Keen to raise awareness of CES, she distributes leaflets at GP surgeries and hospitals.
She says: ‘If I hadn’t gone to A&E that night and asked about CES, I might have ended up in a wheelchair – you can’t ignore back pain if it’s accompanied by bladder symptoms and loss of sensation.’
For further information on cauda equina syndrome, go to: championscharity.org.uk
