Living with Cauda Equina Syndrome: Peter’s Story

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Living with Cauda Equina Syndrome: Peter's Story

Cauda Equina Syndrome (CES) is a debilitating condition that occurs when the bundle of nerves below the spinal cord are damaged. Due to a lack of knowledge among medical professionals regarding CES, diagnosis of the condition is often delayed significantly, leading to long-term health issues for those affected. 

The impact of CES on day-to-day life following diagnosis is considerable, and many people find their lives change forever. One of these people is our client Peter*, 44, who spoke to us about his experiences. 

Read Peter’s story below. 

What were the biggest adjustments you had to make to your life following your CES diagnosis? 

“CES has changed my life dramatically on so many levels. The biggest adjustments were to my work and family life. I had to take early retirement as I was no longer able to work. I feel I cannot be without work so have taken a part-time role at a supermarket, which I am even struggling with as well. 

“The family life impact has also been devastating but I will elaborate on that below. Personally, I now have to manage a strict bowel and bladder regime and am no longer as mobile as I was before. I used to play rugby but am no longer able to do this. This has led to the loss of an active social life. There are also mental adjustments, which I would say are the biggest challenge.”

"I had to take early retirement as I was no longer able to work."

Has your family life changed since you were diagnosed? If so, how? 

“Massively. I used to coach my son’s rugby team. He also played for rugby academies but I am no longer able to drive long distances regularly or coach so he has had to give this up until he can drive himself. I have been to hell and back with my wife as I also had depression caused by the loss of my old self, so experienced something similar to a grieving scenario. We also now don’t spend days out together as much, owing to the unpredictable nature of CES.” 

Has your relationship with your partner/spouse changed since your CES diagnosis?

“I will start by saying it is a miracle we are still together! I have erectile problems and also struggle to sleep with foot and leg cramps, etc. We have gone from a loving sexually active relationship to now having separate beds and separate rooms. There is no sex life between us, although we both accept this, as both of our sex drives have diminished to be virtually non-existent. My wife is also working longer hours to accommodate the loss of my earnings. I have also pushed her away as I feel she would be better with somebody else. As I said I can’t comprehend how we are still together!”

"My body has changed. I have gone from a very active fit man to one who struggles."

Has your body image been affected by your CES diagnosis? Please can you tell us a little bit about this? 

“My body has changed. I have gone from a very active fit man to one who struggles. I still try and go to the gym but am limited in what I can do. I have managed to adapt most exercises though but have still put on weight, which I am constantly struggling with, as this puts an increased burden on my back. My buttocks have also dropped as though they have had a stroke and I no longer feel attractive.” 

What advice would you give to someone who had recently been diagnosed with CES? 

“Join a support group and speak to others with your condition. As sad as it is, I would also advise people not to trust non-specialist medical professionals as many have wrong views or limited knowledge about CES. You will learn more from your support group than doctors I'm afraid.”

What advice do you wish you had been given when you received your diagnosis? 

“I wish I had been advised not to strain my bladder and been recommended to use catheters. Also, I wish I had been advised about peristeens sooner (found out about this with my support group and legal team) but mostly I wish I had been given aftercare as I felt I had none at all.”

"My main challenge was mental. It is accepting the massive changes to your life and staying positive."

What were your main challenges after being diagnosed with CES? 

“My main challenge and biggest was mental. It is accepting the massive changes to your life and staying positive when faced with pain and other CES challenges.

“I would like to add that my legal team at JMW have been fantastic. They put me in touch with a support group, and other professionals and continue to help me in numerous other ways.” 

Find out here how JMW Solicitors supports individuals who have been diagnosed with Cauda Equina Syndrome by helping them to claim compensation. 

*Peter’s real name has been changed to protect his identity