Ceri shares her nine-year struggle to receive a cauda equina syndrome diagnosis

Ceri Love (64) from Bristol sustained a spinal cord injury after a car accident in April 1991.

However, it took nine years for her to be told the extent of her injury, leading to almost a decade of frustration and inappropriate medical treatment.

After a car accident, Ceri experienced numbness in her left leg, difficulty moving, and burning pain.

Despite being told that a discectomy would ease her symptoms, she continued to lose sensation, bladder and bowel function, and mobility, leading to two further surgeries.

Ceri had not been told that she had cauda equina syndrome, a compression of the lower spine that causes a spinal cord injury.

In Ceri’s case, the effects of her injury are lifelong, but she was instead led to believe that she had a bad back that would improve with physiotherapy.

For the next nine years, Ceri raised her children as a single mother, working on a university diploma and then university degree, and establishing a career that would allow her to help other people, all while managing her disability without appropriate support.

Ceri’s spinal cord was further injured after a fall, and she became a full-time wheelchair user as she lost more of her mobility.

She was still not told her diagnosis, and believed she would be able to walk again if she followed physiotherapy.

When she made no progress, she started to believe that it was her own fault for “not trying hard enough”.

As well as starting to become self-critical due to her injury, Ceri felt like even medical professionals did not believe the severity of her condition.

She recalls one incident with a neurologist, who she says carried out the nerve conduction test on the wrong leg.

When Ceri told him that her left leg was numb and not her right leg, he claimed it “didn’t make any difference”, leading Ceri to believe he had “clearly made up his mind that I was faking it”.

For almost a decade after meeting the neurologist, Ceri felt like she could not seek help for her injury.

She said: “Eight to nine years, I carried in my head that I couldn’t tell anybody because I thought they’ll think I’m faking it.”

When Ceri required a fourth surgery nine years after her initial injury, she had a different surgeon, who finally explained that she had cauda equina syndrome, which was a life-changing and lifelong condition that causes spinal cord injury.

From that point onwards, Ceri’s approach to her injury changed, as did the medical care she received.

Ceri was referred to the spinal treatment centre in Salisbury, where she recalls expecting to be turned away.

When she wasn’t, she said: “I cried. By that time, it had been about nine years of me thinking all I’ve got to do is to get up and walk.”

The specialist treatment and rehabilitation that Ceri received at Salisbury was life-changing for her.

She recalls: “It was one of the most moving things, one of the most positive things after having been led to believe that it was my fault and nobody contradicted the idea that it was my fault.”

After years of trying to overcome her spinal cord injury without proper treatment or support, Ceri said: “I was extremely angry and upset and I think a lot of that came out then because I’d been trying to make everything normal and okay for my kids.

“I felt I hadn’t been given the information I needed to keep myself safe and to make life okay for me and my kids.

“Every time I was in hospital, I wasn’t with my kids. That three months in hospital might not have had to happen if I’d just been told what could happen.”

Now knowing her diagnosis, Ceri was able to access the appropriate support that she needed.

She contacted national charity Spinal Injuries Association for advice to learn to manage her spinal cord injury, including support with bladder management.

Spinal Injuries Association commented on Ceri’s case: “We hear stories like Ceri’s all too often.

“Due to a lack of specialist training, patients are often left without the vital information they need about their spinal cord injury.

“It is important that healthcare professionals work with their patients to ensure they are educated about their spinal cord injury so they can access the right support and manage their own health.”

Despite the years of inappropriate treatment, Ceri has forgiven those involved and worked to build a fulfilled life.

She said: “The experiences I’ve had as a disabled woman would not have been there for me had I not been disabled.

“It’s opened up opportunities to me and introduced friendships that I would not have had otherwise.

“It’s the club no one wants to join, but actually I’ve met some incredible people along the way.

“I think it’s given me almost a resilience to other stuff that’s happened.”

Learn more about the Spinal Injuries Association at spinal.co.uk