The Reality of Cauda Equina Syndrome – Guest Post by Sean

*Content warning – this guest post briefly talks about self-harm, suicide ideation, a specific method of attempting suicide and assisted suicide.

‘The Reality Of…’ is a series with the aim to raise awareness of disabilities, illnesses, impairments, etc. Also, educating others about the barriers that disabled people and carers face. I hope this series helps to break down misconceptions and stigma.

Life doesn’t have to stop when you have a disability.

Meet Sean

My name is Sean Ash and I am an Emergency Call Handler for the London Ambulance Service from Welling, Kent.

Photo of Sean smiling at the camera, whilst pumping his fist in the air, in front of 'The Den' stands at Millwall Football Club.
Photo of Sean smiling at the camera, whilst pumping his fist in the air, in front of ‘The Den’ stands at Millwall Football Club – Photo Credit – BBC
(permitted)

Cauda Equina Syndrome

I was diagnosed with Cauda Equina Syndrome (CES) in August 2020. I had traveled to my parents that day and felt sciatic pain running down my leg and my back felt really sore.

When I arrived at my parents, I couldn’t stand up straight and cried for my parents to run me a bath, as usually the heat from a bath eases my back pain.

I crawled up the stairs on my hands and knees, and my father undressed me. I climbed into the bath but the heat wasn’t helping. Pins and needles shot down both sides of my legs and I became restless with the pain, so I pulled myself out of the bath and onto the floor.

As soon as I was on the floor, I went paralysed from the waist down. I couldn’t feel anything. I was no longer in pain but I was frightened at the fact that I couldn’t move.

I screamed my lungs out for my son, who managed to pass my phone so that I could dial 999 for an ambulance. I was taken to hospital and then transferred to Kings College Hospital where a Neurosurgeon told me that my MRI shows that I may have a condition called Cauda Equina Syndrome and surgery was imminent.

I had a discectomy & laminectomy at the L3 level. I was really scared because the anesthetist said that my potassium levels were high, due to my underlying heart condition having right bundle branch block and aorta valve regurgitation, so there was a chance that I could have gone into cardiac arrest on the operating table.

Fortunately, I didn’t. However the operation took 6 hours which was longer than average as the operation usually takes around 2-3 hours. The neurosurgeons had to be extra delicate with me.

The Darkest Time

The hardest thing I had to do was contact my family and say goodbye to them. Speaking to my children, for potentially the last time, left me in pieces. I still feel the trauma from making those telephone calls.

I survived the operation but I was left paralysed from the waist down. Truthfully, I didn’t want to live. I wanted to die. I cried myself to sleep most nights and in the day, I would imagine hanging myself. Had I been able to move, I probably would have.

I remember always regretting that I survived the operation. I told my wife to move on and find someone else. I imagined harming myself and researched about undergoing assisted suicide abroad. I was in a real bad place.

I had an in-dwelling catheter and I was constantly fed tablets and laxatives to empty my stools. I would constantly be covered in them and the nurses would have to clean me frequently. I lost all dignity, laying there naked, while others cleaned me. I was 38 years old and this should not have been happening to me.

Photo of Sean, sitting in his wheelchair, holding up his medal and a yellow card with 'You Are Awesome' in black capitals. Sean is in an office setting with 5 people, all wearing masks and socially distanced.
Photo of Sean, sitting in his wheelchair, holding up his medal and a yellow card with ‘You Are Awesome’ in black capitals. Sean is in an office setting with 5 people, all wearing masks and socially distanced.

I was transferred to Buckinghamshire where I spent three months at Stoke Mandevile National Spinal Injuries Centre. It was there I would undergo physiotherapy, occupational therapy, hydrotherapy as well as seeing a psychologist once a week.

The suicidal thoughts would not leave me alone. I purchased a crucifix and chain, and would rock backwards and forwards at night holding onto it tight. I was told that my injury was complete and all the odds were stacked against me.

I couldn’t stand, I couldn’t walk, it was just me, the hospital bed and a wheelchair, staring back at me and always reminding me of my future. I couldn’t see a life outside of rehab.

I became institutionalised. I had nurses and doctors at my disposal. If I had accidents, my safety net was always there. I made lots of friends with other patients. I didn’t want to go home.

I wasn’t progressing. I picked up a urinary tract infection and had to be put to sleep with morphine. It didn’t help that I needed a cannula put in me because they couldn’t find a vein. Doctors were there for three hours trying to put the needle in my hands, wrists and feet. I was covered with holes and exhausted.

The Turning Point

I didn’t see a life for myself anymore. So I tried to be a strength for others. I would often go round listening to and trying to help resolve issues for other patients. I would offer to help the nursing staff and go to the shops for others. I had clippers so I would give free haircuts to fellow patients. I started to be there for others and it made me feel good again.

I pushed myself and started to make progress in the spinal gym. I had gone from having a complete injury, not being able to stand or walk, to now being incomplete, meaning I could now wiggle my toes, stand up and take steps with a Zimmer frame. I started to prove to myself the impossible could be achieved.

I was released a month early on November 23rd last year, and I returned home to my family. I didn’t want another year like last year so I decided that I was going to do something great by showing others that they can come out of the depths of despair and achieve things they never imagined possible.

I walked a mile for charity and raised almost £80,000. I went onto National television and in the National press showing others this miracle. I have spoken at colleges and my latest walk was around the pitch at Millwall. I will be doing another walk soon around the London Stadium at the home of West Ham United. Bringing two rival clubs together during such times.

Photo of Sean walking with his rollator,  with 'The Den' stands in the background, at Millwall Football Club.
Photo of Sean walking with his rollator, with ‘The Den’ stands in the background, at Millwall Football Club – Photo Credit – BBC
(permitted)

I still cannot feel or move my feet. I’m still a paraplegic and a wheelchair user, but when others are in despair, I will push myself to show them the way out. My condition is rare, but it’s important that the signs are found and treated as early as possible.

Common Symptoms

Common symptoms for CES are saddle anaesthesia, sciatica, urine retention and loss of sensation or movement bellow the waist. For example, I have a flaccid bladder and bowel, so I have to use a catheter to empty my bladder and digital evacuation to empty my bowels. Digital evacuation is when you have to manually remove the faeces from the rectum.

How It Affects Me

I have paralysis bellow the waist and suffer with depression. My depression stems from the changes that I have gone through as well as trying to cope with my condition.

There has been times where I have suffered with suicidal thoughts but I fight through them every time. I think that I have become more compassionate for others since my disability because I can understand how life can change for any one of us.

My Favourite Superhero and Villain

My favourite superhero is my dad because he inspires me so much. My favourite villain is Thanos because he’s a total bad ass.

Thank you so much Sean for raising awareness!

If you would to follow Sean’s incredible fundraising journey, you can either make a donation or follow him on Twitter!

4 thoughts on “The Reality of Cauda Equina Syndrome – Guest Post by Sean

  1. Please become a regular part of our CES family Sean. You are an inspiration and your story brought me to tears. We all have our own CES stories and demons. So relieved you did not resort to hanging yourself…and I am familiar with those thoughts. The world would sorely miss you.

    Liked by 2 people

    1. Thank you for reading Sean’s story and for your kind words. I will pass them on to Sean, with regards to the CES community that you mentioned, is there one online, if so, do you have a link? Many thanks 🙂

      Like

  2. I am so glad he stayed alive and is an inspiration to others. I also appreciate that he is honest about the depression still lingering. How could it not with such daily hardships.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.