Cauda Equina Awareness Day

Deryck Deakin's story

My Name is Deryck Deakin, I have had Cauda Equina Syndrome for almost 14 Years.  

In January 2012 I had an Hemilaminectomy L1. Then had a Left L1-L2 and Right T12-L1 decompression and discectomy in February 2022 and developed a post op Pseudomeningocoel which required further surgery March 2022. When I was first diagnosed with Cauda Equina Syndrome in 2012 it was raised as concern by my GP but I would have to wait as I wasn't showing some of the CES red flags and would be sent home then post op after emergency surgery, I was told many mixed messages what the post operation would be like either being unable to walk, or problems with my Bladder and Bowel.  

But my biggest concern was the Mental Health Aspect which we are not really prepared for and the life changing effect it has on your life with friends and family. I have continually had to have Physiotherapy over the year's searching for a stronger leg and answers to some of my questions.  

I worked hard post op and continued working for 9 Years as an Infection Control Lead. I was ok working in my Role, but started to suffer with Anxiety and Depression but the underlying factor was PTSD (Post Traumatic Stress Disorder) which I had to leave my position for, the major concern being, there was no Mental Health Policies in the Company I was working for and was being pushed out so I decided to leave as, much as I tried to explain CES there is a big difference between an employer and employee. As there are many ways we can, make work adjustments in a workplace at no cost to an employer, the employer can be negative and unsympathetic and not willing to change their work model as you become a risk.  

I then decided to work for myself doing Marketing, which was a big step for me until January 2025, this was due to me having a second episode of Cauda Equina Syndrome in 2022 and the physical side of life was proving challenging as I was having too many flare ups.  

I am also a member of a couple of support groups SIA & CESCI which have been a valuable part of my life now, some of these are face to face meetings or just conversations on social media or via email a gathered knowledge and information where to go. These are a great support how we evolve through a Spinal Cord Injury. Some of these are relevant as you may have experienced these feelings or pains or general concern to find that feeling that I/WE are not alone in our day-to-day concerns. It is also great that attending these meetings or seeing something on social media/further support groups or items to help us in our general day to day, health, care and mobility, and support in any questions we may have to fill in on documents that we could be unsure upon.  

Looking over these past years, it has always been the element of "what if" it happens again and getting the right support when coming back home. As I've found out my rehabilitation was done locally at my hospital for physiotherapy and having some physiotherapists with the right knowledge of treating patients with Spinal Cord Injuries and very rushed.  

I have decided to retrain and learn as I want to be a counsellor/mentor, which is going to be with continual training and reinventing myself along the way, hopefully helping others who have Spinal Cord Injuries. I have recently completed my Level 2 In Counselling Skills, and I am currently working on further courses to build a portfolio for when I re-enter a workplace and then continue training there. I have found out by talking and reading that there is quite a big gap from moving from a hospital ward or rehabilitation centre back home, not just the physical but the Mental impact it can have on you and your family. Which are at our centre I'm lucky to have that support and a wife and 5-year-old. To find my new goals and challenges.