What started as back pain became a permanent disability after Toni-Claire Miller developed Cauda Equina Syndrome. Now Toni-Claire is speaking out to raise awareness of the critical red flags so that no other family has to face the same life-changing consequences.
Toni-Claire’s story
In July 2018, Toni-Claire Miller, then a 32-year-old single mum from Kent, began experiencing severe back and leg pain, numbness, and difficulties with bladder and bowel function. She had three appointments with different GPs from the 1st to 10th August, where she complained of her symptoms, emphasising the unbearable pain she was experiencing. In these interactions, she had not been physically examined but was told in her second appointment that she would be referred for an MRI, but this referral was mistakenly delayed due to a scheduling error.
Her condition deteriorated on August 11th, to the point where she lost control of her bladder and bowels. After finding her in the bathroom, unable to move, Toni-Claire’s son, who was 6 at the time, sought the help of his grandmother. She was then rushed to A&E where an MRI scan revealed a ruptured disc compressing her spinal nerves. Toni-Claire underwent surgery to relieve the pressure, but the delay in her treatment led to her developing Cauda Equina Syndrome. She remained in hospital for 8 months, but her condition showed no improvement. Now she has permanent paralysis of her bladder and bowels, pain and mobility issues, and the added frustration, anxiety and isolation that comes with living with a disability.
Seven years on, Toni-Claire is sharing her story, in the hopes of educating the public and healthcare providers so that other patients do not have to endure the same preventable deterioration.
Red flags too often missed
Cauda Equina Syndrome (CES) can appear suddenly and progress rapidly, just like sepsis and meningitis. If red flag symptoms are not treated quickly with emergency surgery, the damage is permanent.
The key red flag symptoms are:
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Saddle numbness (loss of sensation in the groin/buttocks)
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Bilateral sciatica (pain in both legs)
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Difficulty urinating or new loss of bladder/bowel control
Yet too often these warnings are overlooked. CES can be mistaken for constipation or routine back pain, and communication failures between departments can delay urgent scans. At that stage, the opportunity to prevent permanent disability is lost, as Toni-Claire’s story shows.
Her solicitor from Stewarts, Nadia Krueger-Young, who has represented several Cauda Equina patients, explains: “In the same way as there have been campaigns around conditions such as sepsis and meningitis, the red flags for cauda equina are much less known. This is despite the severity of the long-term implications if not diagnosed and treated swiftly. There is a drive for spinal injury education in the NHS and growing recognition that it hasn’t aways been sufficient. Sadly, we’re seeing increasing numbers of clients who have been left with lifelong disabilities turning to us for help. There needs to be greater education and awareness around the condition.”
Hidden disability and its impact on family
Seven years later, Toni-Claire lives with severe but often unseen consequences of CES: frequent urinary tract infections (UTIs), ongoing pain, and limited mobility.
“Because I don’t rely on a wheelchair every day, people don’t always see my disability,” she says. “But I live with pain, bladder and bowel paralysis, and regularly get infections, and my children live with the impact of that too.”
As a single mother, Toni-Claire has had to lean on her young children, who have shouldered responsibilities far beyond their years. By the time he was eight years old, her eldest son was cooking meals for his younger sister and helping with his mother’s care. For Toni-Claire, the hardest part has been seeing how affected her children have been by her illness.
Awareness can save lives
With better-trained staff and urgent access to MRI scans, Toni-Claire’s disability could have been prevented. She now shares her story to urge for improved training for healthcare professionals and greater public awareness of the red flags, so that other families avoid the life-changing impact of failed diagnosis and treatment.
“My aim isn’t to blame anyone, but to make sure everyone – medical professionals and members of the public – understands the urgency of these symptoms. If sharing my story helps even one person get treatment sooner, it’s worth it.”
Source: Stewarts
Image: Toni-Claire with her children. Credit: Stewarts
