My name is Howard and have suffered with Cauda Equina and the resulting issues associated with this awful condition for 18 years.
I had a sore back for several months prior to this but with none of the red flegs that go along with Cauda Equina. I had been bedridden for a few days, again with no red flags, the GP even came out and gave me acupuncture to relieve the pain which worked for the next 24 hours. Finally, on the 24th December 2006 I got sick of peeing into a bottle and ventured to the bathroom to the loo. When I got there, I felt the worst pain imaginal and lost all feeling from my waist down. Luckily my mum and dad were in, and my dad managed to get me back to my bed.
An obvious 999 call was made and within 45 minutes I was dosed up with morphine and blue lighted to Royal Preston Hospital. On arrival I was examined immediately and sent down for an emergency MRI, this showed I had Cauda Equina and needed emergency surgery which was performed at 2am Christmas Day. Once I’d had the emergency discectomy I was left with no feeling in my saddle area, bum, back of my thighs and the side of my ankles, also I loss of bladder and bowel control. I was discharged from hospital just before New Years Eve with very little advice on how to deal with the total change to my standard of life, apart from how to self-catheterize.
Over the next few months, I was having regular accidents, both with my bladder and bowels, along with serious loss of mobility. I was obviously at my lowest at this point and didn’t know how to deal with my issues, luckily my GP was amazing at signposting me to the correct specialists to deal with my issues. This wasn’t a speedy process and during this time my mental health took a nosedive which resulted me being under the Mental Health Crisis Team with Depression and Anxiety, without their help I hate to think what would have happened.
Fast forward almost 12 months and I finally got my appointment with the Urology specialist who performed a urodynamics examination which showed I had an underactive bladder but would go overactive for a second which was the cause of my accidents. I tried several medications to combat this but ended up having Botox on my bladder to freeze it, this works a treat and I continue to have this every 9-12 months, the only downside to this treatment is I have to self-catheterise and am unable to go in the normal fashion, I do personally feel this this is the lesser of two evils. During this time, I was awaiting explorations into my bowel function which had changed from accidents all the time to being totally constipated and unable to pass stools without self-evacuation or a lot of laxatives. I finally got an appointment at Wythenshawe Hospital in Manchester where I trialled a sacral nerve stimulator, this worked very well but I had to wait for NHS funding from my local authority which took about 10 months, so between the trial and having the permanent implant fitted, it took over 12 months.
Now that’s most of the bad things are out of the way, let’s get to the good things that have happened since my injury.
I found that I had gained a huge amount of weight due to lack of exercise with my mobility being terrible so I thought I’d borrow my brothers push bike and see if I could ride that, even if it was for a short duration and distance. I started off doing 5-10 minutes at a very slow pace, building up a little at a time so not to injure myself or make me feel any worse. All my specialists couldn’t believe I was able to do this, but said “if you can do it, carry on”. Given the green light I decided to invest in a cheap bike to continue building up strength and distance. I’d caught the cycling bug; it was time to buy my 1st road bike and set myself a target to aim for.
In October 2018 I managed to complete the Manchester to Blackpool Night Ride, a total of 57 miles, my longest ride ever, it wasn’t quick, but I did it. After completing this I bought my first carbon road bike and joined a local cycling club where I’ve met some amazing friends that now know all my issues, it took time to share with people but I eventually managed it. Since completing Manchester to Blackpool I’ve managed to complete Ride Birmingham in 2019 and Ride London in 2023, both of these were 100 mile rides. It’s safe to say cycling is my addiction, I now own three bikes and try to get out 3-4 times a week, weather permitting. If the weather is rubbish, I have an indoor trainer in the garage.
About 9 years ago I found out about the Cauda Equina Association and went to one of their meetings in Bury where I met Claire Thornber, the founder of the charity. Never have I met someone so passionate about helping and standing up for people suffering with CES and the resulting issues we all have. Over the next few years, I went to more meetings and finally Claire was able to start, what we all know to be, The Cauda Equina Champions Charity. Claire then asked me to become an Event Buddy at future workshops, which I was honoured to accept. My role as a buddy is to meet and greet people arriving at the CES Workshops and try to make them feel comfortable when they arrive and throughout the duration of the workshop. If you’re ever lucky enough to attend these workshops, and I’m there, I will be the one with a pint in my hand and most probably the loud one. The workshops are an amazing way for those with CES and their friends or partners to get support from, not only each other, but also medical professionals that attend the workshops too.
Claire is a true inspiration for any of us that suffer with this terrible condition and the resulting issues it has left us with. Without her I don’t think a lot of us would have a voice and the helping had that I think we all need.
Thank you all for taking time to read a little bit about myself and I hope to see some of you at future workshops.