A mum-of-two struggling with an undiagnosed spinal condition claims she was told by her doctor: “I don’t know what you want me to do, you’ve been given extra painkillers”.
Toni-Claire Miller, from Sittingbourne, eventually discovered she had a rare medical emergency, known as Cauda Equina Syndrome (CES), which is the compression of the spinal nerves, in 2018.
Delays in her treatment have left her with a life-changing injury. Picture: Stewarts
However, delays in her treatment left her with a life-changing injury, which she believes could have been prevented if her “red flag” symptoms had been picked up on by clinicians.
Around a year before she was diagnosed with CES, Toni-Claire was struggling with sciatica and was referred to a physiotherapist by her GP.
However, while waiting for an appointment to come through, her health “started to decline”, and by the time she was eventually seen, she was in more pain and her left leg had gone numb.
Her physiotherapist noticed something was not quite right and referred her to a specialist, but again she was left waiting for a time slot.
Toni-Claire, who was 32 years old at the time, found she was unable to stand for long periods of time, could not sit on her left side and had to crawl up her stairs.
She also needed assistance from her mother to get out of bed and dressed, as the pain was so severe.
Toni-Claire with her son and daughter. Picture: Stewarts
She told KentOnline: “The only way to describe it was like labour pains.
“My family kept saying to go back to the GP and the hospital, but I did not want to make a nuisance of myself or waste their time.
“But then it started in my right leg, and I could not cope anymore. I went back to the GP and I was given extra pain relief, but I was not examined or sent to A&E.
“I had all these major symptoms, and I could not move. I was in excruciating pain. I knew something was not right, so I went back.”
The second time she was seen, Toni-Claire was referred for an MRI scan, which was mistakenly delayed due to a scheduling error.
Her symptoms continued to get worse, and the next day she phoned her surgery again and was given an emergency appointment.
She addedd: “I had a GP who was uninterested. He said ‘I do not know what you want me to do. You have been given extra painkillers’.”
The following morning, Toni-Claire could hardly get out of bed and was found by her then seven-year-old son, collapsed on the bathroom floor and was unable to move.
He managed to call his grandparents, who in turn took their daughter to A&E, where she was sent to an out-of-hours service for an urgent MRI scan.
The 39-year-old recalled: “The pain was so severe. I was shaking and could not move. I knew by the reaction to the MRI that something was serious.”
It turned out that she had a ruptured disc compressing her spinal nerves, meaning she was slowly being paralysed and needed an operation.
But the medics decided to try a spinal block instead, where anaesthetic is injected to numb the lower body.
Toni-Claire was diagnosed with Cauda Equina Syndrome (CES) in 2018. Picture: Stewarts
The treatment did not work, and she ended up having two further surgeries to decompress the disk in her back and spent seven months in the hospital recovering.
The delay in her treatment led to her developing CES, and left her with permanent paralysis of her bladder and bowels, pain and mobility issues.
Toni-Claire said: “It felt like someone had clicked the reset button. I am in pain constantly. It means there are a lot of unpleasant days.
“It is a catastrophic and life-changing injury, and it is all because the warning symptoms were missed.”
Toni-Claire is now hoping to raise awareness of the critical red flags of CES so that other patients do not have to endure the same preventable deterioration.
She added: “It should have been a medical emergency, and I should have had an MRI and surgery right away. If I had had it at the right time, I could have had a better recovery.
“It is a catasrophic and lifechanging injury, and it is all because the warning symptoms were missed…”
“That is why it is so important to know what to look out for and have the confidence to say that something is not right.
“CES is a medical emergency, and the sooner it is treated, the better the recovery. You cannot assume that back pain is just always back pain.
“It is only ever going to get worse. If they had had more knowledge, would it have made a difference?”
Toni-Claire has since received a settlement following a claim for medical negligence.
She has used money from the payout to hire carers and extra childcare help but he acknowledged not everyone suffering with CES has that option.
NHS England has been contacted for comment.
She is raising awareness of the condition. Picture: Stewarts
What is Cauda Equina Syndrome?
Cauda Equina Syndrome is the compression of the nerves at the tail end of the spinal cord, which are responsible for controlling bladder and bowel function and supplying sensation around the bottom and back passage.
When the nerves become compressed, it can affect their function, and urgent attention is needed.
It is a rare condition, affecting one to three in 100,000 people, but it can develop suddenly and progress rapidly, meaning that if not treated quickly with surgery, the damage can be permanent.
It is suggested that the outcome of surgical decompression is better if an operation is performed within 48 hours of having “red flag” symptoms.
These are saddle numbness, which is the loss of sensation in the groin and bottom area, bilateral sciatica and difficulty urinating or new loss of bladder or bowel control.
Yet, often these warnings are overlooked or not recognised by clinicians and can be mistaken for routine back pain, causing a delay in treatment.