My story really begins where you find me today, writing my Cauda Equina Syndrome journey to put on the site, hoping that it will become a small part in what the CESA manages to achieve in raising awareness of the condition, helping stop the unnecessary suffering of even more people and providing support in every way to those people who have Cauda Equina Syndrome.
In September 2010 I herniated my L5 – S1 disc whilst I turned in my sleep. I had grumbling back pain before, which increased over a couple of months to the point where I wasn’t really getting any sleep 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 mum, self employed, running my own business, providing for my kids myself, I was quite 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 Doctor 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, only to be sent back to hospital again by my doctor who had to telephone the orthopaedic on call who finally relented and agreed to see me.
Delays, delays and more delays! (a typical scenario of developing CES) though eventually I underwent a surgical decompression. I spent about 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.
I left hospital doubly incontinent, with a weaker left leg, 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 really 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 although I am still struggling to come to terms with the changes to my sexual function.
It has got easier to deal with but I would not wish to relive those early months for anything, nor would I wish it on my worst enemy.
My own experience 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, and few medical professionals really know all the facts, including being aware of the important red flags.
For me the most important message is that once people are aware of the red flag symptoms including patients 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 then 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 groups 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!! Surely it cannot be that difficult to make people listen? To change things, when the cost to people lives is so dear?
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!