Cauda Equina Syndrome and Me

My story really begins where you find me today, typing up my cauda equina syndrome (CES) journey to put on this site, hoping that it will become a small part in what the CESA manages to achieve in raising awareness of the cauda equina syndrome, 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, that had increased in the previous couple of months to the point where I wasn’t really getting any proper sleep at night because of the back pain and sciatica. The pain 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, drove a brand new company van; we enjoyed family 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 exactly what was wrong from the outset, sending me to my local hospital urgent care centre with a letter saying ‘cauda equina syndrome – orthopaedic referral’.

My letter was somehow overlooked, my symptoms were not appreciated and my protests ignored.  I felt very frustrated as I was sent home, only to be sent back to hospital again by my GP who had to telephone to get me seen.

Delays, delays and even more delays followed and eventually, after what felt like a lifetime, I underwent spinal surgery to relieve the pressure off my poor spinal nerves. The operation was called a lumbar decompression.

I spent about five days in hospital, but left the hospital doubly incontinent, with a weaker left leg and complete saddle/private parts numbness, constant nerve pain and the feeling of a giant telegraph pole rammed up my backside! I later realised that I suffered with sexual dysfunction as well.

In the 2 ½ years since surgery, I have made little improvement. My greatest  achievement was being able to urinate myself at about six months following the surgery. I have however managed to deal with bladder and bowels, realise my physical limitations although I am still struggling to come to terms with my new sexuality.

It has got easier to deal with but I would not wish to re-live 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 important message is that if everyone was aware of the red flag symptoms, then permanent neurological injury can be avoided. Ignorance is not an excuse for lifelong disability. I am passionate about raising as much awareness as possible about CES, in the hope that I can stop as many people as possible from going through this awful experience. I contribute to a CES website called www.ihavecaudaequina.com– please take a look, especially at the red flag signs!

I also discovered that once you have your back operation then you are very often discharged and left to fend for yourself. I had 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 were 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 but there seems to be no clear pathway to care and support for 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 married my fella who had supported me through the bad times but now our relationship is another casualty of CES and we are getting divorced after 18 mths marriage.

I understand how important people and happiness are and I want to change this negative experience in my life to a big positive for everybody affected by it. 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!