Despite the devastating consequences of a delay in diagnosing Cauda Equina Syndrome (CES), Jo is determined to live her life to the full.
As someone who had always lived an active lifestyle – with passions including cycling, adventure motorbiking, and being a regular at the gym – the pain and numbness Jo now has to battle every day could have seen her love of health and fitness come to an abrupt end.
But for Jo, the fact she keeps going – in whatever form that can take, with her levels of pain and fatigue varying by the day – is really important to her. Both mentally and physically, exercise is helping her to move forward in her life and rebuild after CES hit in December 2021.
“I try to stay active. Running in particular is really important to me. It’s something I can do, and makes me feel like I haven’t completely given up on my old life and gives me some feeling of control,” says Jo, 44.
“Yes it’s painful, and my mum always says she doesn’t understand why I’d run when it causes me pain, but I think it helps me to cope a lot more. For the last three years I’ve been forced to change my life through what’s happened, but I’m determined I will never sit still.”
Jo’s life-changing injuries came just after Christmas three years ago, as a result of medics within the Royal Berkshire NHS Foundation Trust failing to recognise the ‘red flags’ of CES she was experiencing – despite them being highlighted during her call to NHS 111 and also by the ambulance crew who took her to hospital while she was in agonising pain.
Having spent eight hours in A&E, she was sent home and told to visit her GP with any further problems. However, two days later, Jo experienced numbness from her waist down while driving. Understandably very concerned, she returned to hospital, where an urgent MRI scan should have been carried out – it took almost 12 hours for this to be completed.
Jo was then forced to undergo emergency decompression surgery on her spine – but the fact she had to wait days between the initial ‘red flags’ and her operation means she now has a host of ongoing, and probably lifelong, health issues.
She has numbness from her hips to her knees, which impacts both her bladder and sexual function. Often, she experiences pain akin to “feeling like I’m being ripped apart” as well as “fiery ants crawling all over my body” as a result of the nerve impact. She is also susceptible to urinary tract infections due to the lack of sensation in her bladder.
“Some days, I can’t do much, and doing the chores is my exercise. It’s very frustrating, but you have to go at your own pace,” says Jo, who charts her journey through her blog and Instagram account.
“Sometimes, I really want to live my old life again, and last year I signed up for the Toughest Mountain ultra marathon – attempting to train for that nearly broke me, it took me six months to recover. It’s hard to accept that you can’t do all the things you want, but you can do them in other ways.
“It feels like you’ve got training reins on all the time, and that sometimes you’re pulled back on an elastic bungee at about 100mph, but you’ve got to do what you can. Sometimes I have to force myself to move – but I do that because I don’t want to succumb to it.”
Jo continues to reflect on her visit to A&E and the fact she was not properly diagnosed and treated as the urgent CES case she should have been. Having experienced back pain for 20 years previously, Jo was well aware of the red flags to look for as potential warnings of CES.
“I was told to go home, but if I had any more ‘red flags’ to come back. I already had three or four, and wondered how many I was supposed to have, but I genuinely felt bad at that point for wasting the hospital’s time,” recalls Jo.
“I think one big thing that many people aren’t fully aware of is that if these ‘red flags’ are ignored, their consequences can be permanent. They aren’t always treatable or reversible, and if it was more widely realised that these are permanent effects you will be living with, I think so many more people would question what they’ve been told.
“If I had that additional information, I know I would have questioned it, rather than just accepting what the professionals had told me and thinking I’d get better.”
While Jo is making the most of her life, exercising as much as possible and pushing herself to go out with friends and family even when her instinct is to stay at home, sometimes it’s the seemingly more minor things which can be the biggest reminder of how things have changed.
“I’m not incontinent, but because I have no feeling there, I am super paranoid about wetting myself,” she says.
“For a long time, and it probably sounds silly, I wouldn’t wear a dress in case it got tucked in to my knickers as I wouldn’t know about it.
“One of the biggest frustrations for me is that I look fine, I really struggle with that. Because there are no physical symptoms, often people don’t understand.
“These things can really have a big impact on you wanting to go out, wanting to socialise. But thankfully I have a great group of friends who do understand and support me, and I have a dog who also inspires me to get out of the house, and that has been really valuable in getting to where I am now.”
Jo is being supported in making a claim against the NHS Trust which caused the delay in her diagnosis and surgery by law firm Slater and Gordon, which has a long and successful track record of supporting people with CES who have experienced medical failures.
Ben Gent, head of medical negligence at Slater and Gordon in Manchester, says: “Jo is really inspiring with her determination to live her life to the full, despite the pain and obstacles she faces every day in doing so.
“She is a great example of how it’s still possible to thrive and do the things you love after CES – but her struggle to do so is very real, and we know the daily battle and distress she faces.
“What is especially distressing is how avoidable this is – if only her symptoms of CES had been properly recognised, and she had been treated with the urgency her condition needs, she could have been saved from this being her reality.
“Sadly, we hear this all too often, where medics have failed to act on CES ‘red flags’, and the consequences of this are life-changing. CES is too crucial a diagnosis to get wrong, and Jo’s case is yet another reminder that medical professionals must be alive to the possibility of CES, particularly in the presence of the warning signs.”