People frequently contact Cauda Equina Champions Charity with practical questions about their recovery, including:
- When can I begin physiotherapy?
- What exercises are safe after cauda equina surgery?
- When can I return to work?
- Is the pain, numbness or weakness I am experiencing normal?
- Where can I get help with bladder or bowel problems?
- Will my symptoms continue to improve?
- How can I explain cauda equina syndrome to my employer or family?
These are understandable questions. However, recovery from cauda equina syndrome can be different for every person.
The advice someone receives should be based on their individual symptoms, the cause of their cauda equina syndrome, the surgery or treatment they have received and their wider health needs. Your surgeon, GP, physiotherapist and specialist rehabilitation professionals should guide you on when it is safe to increase your activity.
As a charity led by people with lived experience, we cannot provide individual medical advice. What we can do is listen, share reliable information, help you understand which services may be relevant and support you in asking the right questions.
Bladder and Bowel Problems After Cauda Equina Syndrome
Some people leave hospital without fully understanding that they may still have ongoing bladder or bowel dysfunction.
They may experience difficulties such as:
- Being unable to tell when their bladder is full
- Difficulty starting or completing urination
- Urinary leakage
- Reduced sensation when passing urine
- Constipation
- Bowel leakage
- Reduced awareness of needing to open their bowels
- Changes in sensation around the saddle area
These symptoms can be difficult and embarrassing to discuss, but they are important.
Anyone experiencing bladder or bowel changes following cauda equina syndrome should ask whether they need an assessment from an appropriate specialist service. Depending on the person’s needs, this could include urology, colorectal services, continence services, a spinal injuries team or specialist rehabilitation professionals.
One of the issues Cauda Equina Champions Charity is working hard to address is the need for clear and consistent discharge procedures. People should leave hospital understanding their condition, their continuing symptoms, the warning signs that require urgent attention and the rehabilitation and follow-up support available to them.
The Importance of Good Discharge Information
Receiving the right information at the point of discharge can make a significant difference.
People affected by cauda equina syndrome should ideally understand:
- Who is responsible for their follow-up care
- When they will be reviewed
- Whether they need physiotherapy or specialist rehabilitation
- How their bladder and bowel function will be assessed
- Where to seek help with sexual dysfunction
- How to manage pain, altered sensation and mobility problems
- When they may be able to drive or return to work
- Which symptoms require urgent medical attention
- What psychological support is available
Unfortunately, not everybody receives this level of information.
This can leave patients and families attempting to navigate a complicated healthcare system at a time when they are already coping with pain, disability, uncertainty and emotional trauma.
The Cauda Equina Syndrome App
To help address the lack of accessible information, Cauda Equina Champions Charity created the Cauda Equina Syndrome app.
The app is available to download through the Apple App Store and Google Play. It provides a central source of information about cauda equina syndrome, including recovery, rehabilitation, bladder and bowel care, emotional wellbeing and living with the long-term effects of the condition.
We understand that apps are not suitable for everybody. Some people prefer to speak to another person, ask questions and explain what has happened in their own words.
That is why our information and support service remains such an important part of the charity’s work.
Psychological Support After Cauda Equina Syndrome
Cauda equina syndrome does not only affect the body.
The sudden onset of symptoms, emergency hospital admission, surgery, pain, loss of independence and changes to bladder, bowel or sexual function can be deeply distressing.
People may experience:
- Anxiety
- Low mood
- Trauma symptoms
- Fear about the future
- Loss of confidence
- Difficulties adjusting to physical changes
- Relationship problems
- Grief for the life they had before their diagnosis
Cauda Equina Champions Charity operates a funded psychological therapy service for people affected by cauda equina syndrome.
The clinical psychologists and therapists we work with understand the condition and its potential impact. This means that people do not have to spend their first appointment explaining the basics of cauda equina syndrome or trying to justify why their experiences have been so difficult.
People who contact the charity may be referred into our psychological support services when appropriate and subject to availability and assessment.
What I Tell People When They First Contact Us
When somebody contacts me shortly after diagnosis or surgery, I often begin by asking them to take a breath.
The place you are in immediately after surgery may not be where you are several months from now, and it may not be where you are next year.
Nerve recovery can be slow, and improvements may happen gradually. No charity or healthcare professional can promise what an individual recovery will look like, but it is important not to assume that the difficulties you are experiencing today will necessarily remain exactly the same.
My general advice is not to rush.
Do not feel pressured to return to work before you are ready. Do not compare your recovery with somebody else’s. Do not force yourself through exercises that have not been recommended for you.
Take things steadily, follow the individual advice of your healthcare professionals and reach out for support when you need it.
Returning to Work After Cauda Equina Syndrome
Returning to work can be an important goal, but it should not be rushed.
Some people may need:
- A phased return
- Reduced hours
- Regular rest breaks
- Home working
- Changes to seating or equipment
- Easier access to toilets
- Time for medical and rehabilitation appointments
- Adjustments to lifting, standing, driving or travelling
- Occupational health support
Cauda equina syndrome can meet the legal definition of a disability for some people, depending on the nature and long-term effect of their symptoms. Employers may therefore have responsibilities to consider reasonable adjustments.
Speaking honestly with your employer, GP, occupational health team and rehabilitation professionals can help establish a safer and more sustainable return-to-work plan.
You Do Not Have to Navigate Cauda Equina Syndrome Alone
Talking to people who understand the condition can be extremely helpful.
Cauda Equina Champions Charity can provide information, lived-experience support and signposting. We can discuss the difficulties you are facing, explain the services the charity provides and consider what may be most helpful for you at this stage of your recovery.
We cannot replace your doctor or provide individual medical advice. However, we can help you feel more informed, less isolated and better able to navigate the services around you.
To speak with our team, please use the contact details on the Cauda Equina Champions Charity website. We can arrange a conversation, discuss your support needs and explain whether any of our services may be suitable.
Please remember that our information line is not an emergency medical service. New or worsening symptoms associated with possible cauda equina syndrome require urgent medical assessment.
Wherever you are in your recovery, please know that you are not alone.
Good luck with your recovery, and thank you for reading.
Claire Thornber
Founder
Cauda Equina Champions Charity