Jo’s story of recovery, resilience and the reality of living with Cauda Equina Syndrome
The fall that changed everything
‘Jo’ [not their real name] had climbed countless times before. But one small mistake in rope work led to an eight-metre fall that would change their life. “I hit the ground on my back, with my right hand trying to protect my head,” they recall. Their wrist was clearly broken, but it was the pain in their back that hinted at something more serious.
Despite the pain, Jo could feel their toes and even stood up briefly. “I thought, ‘I can feel my toes, I must be okay’.” Friends helped them up the hillside to a dirt road, where Mountain Rescue arrived. They were airlifted to a major trauma unit.
Diagnosis and surgery
At hospital, their wrist was treated first. But an MRI revealed a serious spinal injury. Jo underwent surgery to stabilise their spine with metal rods and screws.
“The surgeon said, ‘I’ve done this operation loads of times – you’ll be fine.’ At that point, all I cared about was whether I’d walk again.”
They did walk again—but not without lasting consequences.
Living with Cauda Equina Syndrome
Jo couldn’t urinate without a catheter, and their bowels were sluggish. Days later, a consultant explained they had Cauda Equina Syndrome – a rare condition caused by nerve damage at the base of the spine. “I’d never heard of it. They only told me because I kept asking questions.”
Discharged with only paracetamol and an in-situ catheter, Jo had to seek out much of their own care. They learned to self-catheterise and switched to reusable catheters to reduce plastic waste. Physio helped them regain mobility, but information about managing long-term symptoms was lacking.
Finding their own way
Jo explored neuromodulation techniques independently, even consulting a specialist abroad. A UK consultant eventually prescribed loperamide for bowel control – something they believe should have happened much sooner.
“The trauma unit was brilliant, but the post-surgical ward was chaos – understaffed and overwhelming. It made me quite ill being there.”
Now, Jo manages their condition with medication, self-monitoring, and determination. “I’ve had a few UTIs, but I’ve learned to manage them myself. It’s hard to see a GP these days.”
Looking back and forward
Reflecting on the accident, Jo is candid: “It was stupidity. I didn’t check my rope work. And I probably shouldn’t have been moved.” Despite everything, they have returned to climbing. “I’m not where I was, but I’m not complaining. At one point, I thought I wouldn’t walk again.”
Jo’s message
“There needs to be more awareness of spinal injuries and their long-term effects. These are life-changing conditions. People need to know what to expect – and how to fight for the care they need.”
What is Cauda Equina Syndrome?
Cauda equina syndrome (CES) is a serious neurological condition affecting the cauda equina, a group of nerves at the end of the spinal cord.
CES occurs when the spinal nerves below the spinal cord become severely compressed.
Any delay in the diagnosis of CES can impact recovery and could lead to permanent damage, such as bladder and bowel incontinence or paralysis of the legs.
Do you have your own experience of Cauda Equina Syndrome?
By sharing your story, you provide powerful evidence which can help shape future services.
Get in touch with us at [email protected] or call 0300 373 2820.