My story really begins where you find me today. I’m writing down my own Cauda Equina Syndrome journey to add to the website, hoping it will become a small part in what CESA manages to achieve in raising awareness of CES. Ultimately, helping stop the unnecessary suffering of more people and providing support in every way to those who live with Cauda Equina Syndrome injuries.
In September 2010 I herniated my L5 – S1 disc as I turned in my sleep. I had experienced grumbling back pain before. More recently, it had increased over a few months to the point where I wasn’t sleeping at all due to the back pain and sciatica. Then, one night I turned in my sleep and herniated my disc. I had never felt pain like this before, or since. It took my breath away and I knew, as the pins and needles spread and the numbness crept in, that something terrible was happening to my body…..
At the time I was a single parent, self employed, running my own business, providing for my kids myself. I was proud of what I had achieved . I owned my own home, brand new company van, we enjoyed our holidays and were happily living our lives.
I left home when I was seventeen and had always been fiercely independent and looked after myself. I had survived some poor decisions and bad relationships, but I had come through it strong and determined. I worked hard and played just as hard! I loved my social life and my friends.
My GP was the only medical professional who knew what was wrong, sending me to my local hospital urgent care centre with a letter saying ‘Cauda Equina Syndrome – orthopaedic referral’.
My letter was ignored, my symptoms were ignored and my protests ignored.
I was sent home from A & E only to be sent back to hospital again by my doctor. He had to telephone the orthopaedic on call and plead my case. In my GP’s office I was privy to their subsequent argument as to whether somebody with CES would be able to walk. He thought not and as I could still walk , though barely, he dismissed my GP’s opinion. Finally he relented and agreed to see me.
Delays, delays and more delays! (a typical scenario of developing CES for many patients) Eventually I underwent a surgical decompression. I spent five days in hospital, counting myself very lucky indeed to be able to leave on my own two legs. There are many people with CES who spend weeks in hospital and leave struggling to walk and reliant on wheelchair and crutches.
I left hospital doubly incontinent, with a weaker left leg, with complete saddle numbness, a weak sphincter, sexual dysfunction, constant nerve pain and the feeling of a giant telegraph pole rammed up my backside!
In the years since, I have made little improvement. The greatest achievement, being able to urinate myself at about six months post op. I have however, managed to deal with bladder and bowels, realise my physical limitations, but am still struggling to come to terms with the changes to my sexual function and the subsequent impact on my intimate relationships.
It has become easier to deal with, but I would not wish to relive those early months for anything, nor would I wish them on my worst enemy.
My experience has taught me how little is really known about Cauda Equina Syndrome. Nobody has ever heard of it unless they or a friend has been affected. Few medical professionals really know all the facts, including the important red flags and how CES develops. There is still confusion that needs to be addressed.
For me, the most important message is that once people are aware of the red flag symptoms including the public and healthcare professionals, then permanent neurological injury can be avoided. Ignorance, apathy or financing is not an excuse for lifelong disability.
I also discovered that once you have your back operation you are very often discharged and left to fend for yourself. I struggled to get myself referred to a gynaecologist, urologist, sexual counsellor, physiotherapist, incontinence service and such like. Nobody really knew what to do with me.
This made the journey so much harder than it should have been. I scoured the internet for information, only really understanding half of what I read. The greatest help came from the Facebook group where finally people ‘got me’ and knew exactly how I felt.
There are dedicated professionals who have helped me to where I am today. The doctors and nurses are great when you can get to them and the medical professionals really try their best to help. Unless you are one of the lucky few and are sent to a spinal unit, there seems to be no clear pathway to care and support for the majority of CES patients. Hopefully we can change this.
This is where I get my motivation. My experience is what drives me today, along with the stories I hear on the CESA helpline and in the Facebook groups. It is the same story over and over again happening to different people all over the world!! It can’t be that difficult to make people listen? To change things?
Personally, I now appreciate the extra time I have at home with my family. I am no longer driven by the pound note and see life from a different and much better perspective. I understand how important people and happiness are.
I want to change this negative experience in my life to a big positive for everybody affected by CES. I have so much time on my hands now to do this, but never enough when it comes to telling people about Cauda Equina Syndrome!