The Reality of Cauda Equina Syndrome: A Conversation That Could Change Lives

When clinical expertise meets lived experience, powerful education happens. Our recent collaboration with Coloplast Professional brings together two vital perspectives on Cauda Equina Syndrome - one from the bedside, one from the patient's journey.

Why This Video Matters

Cauda Equina Syndrome affects 1-2 people per 100,000 in the population - roughly 600 to 1,200 new cases each year in the UK. While these numbers might seem small, for those affected and their families, the impact is immeasurable. What makes this video special is its dual perspective: clinical expert Michelle sharing the medical realities, alongside our co-founder Allison Whitehorn's raw, honest account of living through a CES diagnosis.

The Clinical Picture: What Healthcare Professionals Need to Know

Michelle, a senior clinical expert in neurogenic bladder and bowel with over 20 years of experience, breaks down the essential facts:

What is Cauda Equina Syndrome? CES occurs when the bundle of nerve roots at the base of the spinal cord (the cauda equina, or "horse's tail") becomes compressed. While technically involving peripheral nerves rather than the spinal cord itself, the effects can be just as devastating.

Red Flags to Watch For:

• New onset radicular pain (often bilateral, down both legs)

• Bladder and bowel dysfunction

• Sexual dysfunction

• Saddle anaesthesia (numbness in the perineal area)

• Progressive leg weakness

The Emergency Response: CES is a medical emergency requiring urgent MRI imaging and potential surgical decompression. The GIRFT (Getting It Right First Time) pathway now provides clear guidance, though implementation remains inconsistent across hospitals.

The Human Reality: Allison's Journey

Allison's story, shared with courage and clarity, reveals the gaps that still exist in our healthcare system:

• Diagnosis delay: Despite presenting with classic symptoms, Allison was moved between three A&E departments before receiving proper imaging

• Information vacuum: After surgery, she was discharged in under 24 hours with no explanation of her condition or its implications

• The eight-month struggle: It took eight months of deteriorating bladder and bowel function, multiple GP visits, and her own internet research before she learned she had CES

• The turning point: Contact with the Spinal Injuries Association finally connected her with proper support and specialist care

The Research That Demands Action

Our recent study of 130 CES patients revealed troubling statistics:

• Only one-third were informed about potential bladder and bowel complications after surgery

• Nearly half lacked appropriate continence management plans

• Many weren't even told they had suffered a spinal injury

These findings aren't just numbers - they represent real people struggling unnecessarily with life-changing symptoms.

What Needs to Change

For Healthcare Professionals:

• Implement consistent use of GIRFT pathways

• Ensure all CES surgery patients receive bladder scans before discharge

• Provide clear information about the condition and its potential effects

• Establish automatic referral pathways to specialist continence services

For Patients and Families:

• Know the red flags and seek urgent medical attention

• Understand that bladder, bowel, and sexual dysfunction are common after CES

• Don't accept "it's your age" or "it's because you've had children" as explanations for new symptoms

• Seek specialist continence care - it can be life-changing

The Power of Community

From Allison's eight-month struggle has grown CESCI - now supporting over 2,000 people affected by CES. Every day, our team speaks to newly diagnosed individuals who haven't received proper information about bladder and bowel care. This shouldn't be happening in 2025.

Moving Forward Together

This video represents more than education - it's a call to action. Whether you're a healthcare professional who can implement change, a patient navigating your own journey, or a family member seeking understanding, we all have a role to play in improving CES care.

The conversation between clinical expertise and lived experience in this video demonstrates what's possible when we work together. Michelle's professional insights combined with Allison's personal journey create a powerful educational tool that could prevent others from facing unnecessary delays and complications.

Watch and Share

We encourage you to watch this video, share it with your networks, and use it as a catalyst for conversations about CES in your professional or personal circles. Education saves lives, prevents complications, and restores hope.

Together, we're changing the narrative around Cauda Equina Syndrome - one conversation, one patient, one healthcare professional at a time.

About CESCI: We are a not-for-profit support organization dedicated to supporting those affected by Cauda Equina Syndrome and raising awareness among healthcare professionals. Founded by Allison and Nigel Whitehorn following their own challenging journey with CES, we now support over 2,000 members across our community.

About Coloplast Professional: Coloplast develops intimate healthcare solutions for people with deeply personal medical conditions, including continence care products and educational resources for healthcare professionals. Watch the full video: