One of our members Howard came into the CESA offices in Skipton on the 5th June and we had a really great chat about his journey from Cauda Equina to cyclist aficionado.
Hope you Enjoy!
Hi Howard! Thank you for letting me interview you. Firstly, when did you have Cauda Equina Syndrome?
It was the 24th December 2005 when I started exhibiting Red flags of Cauda Equina.
What happened?
I had been bed-ridden for five days before it happened. I was getting up to go to the loo and started having terrible pain. I remember suddenly dropping to the floor, without warning. My Father had to help me get onto the bed again, we called for an ambulance, I just knew something was wrong.
The ambulance took me straight away, they gave me pain killers and when I arrived in A&E they started tests immediately. The reflexes were tested in my feet, toes, and legs, the pin prick test was done to test feeling and the pr test was performed to discover tone and feeling in the anus. I was then sent for an MRI scan which confirmed the cauda equina compression.
How were you affected by the Cauda Equina?
From the moment I fell to the floor I realised I could no longer feel below the waist. Unfortunately my bladder and bowel function had been affected too when the compression occurred.
What steps were taken to decompress your Cauda Equina?
As I was getting prepped for surgery, I thought this wasn’t the way we thought we would spend Christmas Day! I had decompression surgery and the whole disc was removed, this occurred around 18 hours after the fall in my bedroom. I appreciated the quick turn around.
What symptoms were you left with post-surgery?
Despite having surgery 18 hours after the onset of symptoms I was still left with some permanent damage. I was left with no feeling on the back of the legs, side of ankles and saddle region. The bladder and bowel is no longer functioning correctly. However, I did begin to feel some areas that had initially become numb prior to the decompression. I could also weight bear again and move my legs.
How are your symptoms now?
I still have the numbness in the saddle region, sides of the ankles and back of my legs. I have yearly Botox in my bladder to prevent bladder spasms and enable intermittent self catheterising. The Botox has been amazing! In terms of pain I still have pain over the area of my surgery. I also get pain from sitting or standing too long
Looking at you I don’t think people would know you have CES. What is life like with what some may refer to as an ‘invisible illness’?
People who don’t know me give me funny looks, sometimes. This happens especially when I’m parking my car in a disabled parking space or when I need to use the accessible toilets. I was once waiting to go into an accessible toilet and a guy said to me, “That’s disabled only.” He went on to ask “Why are you using it?” in a harsh tone. I pulled out my intermittent catheter and said, “because I have to use this!”
Experiences like that go a long way to explaining why some people with invisible disabilities avoid going out of the house. How have you coped with your condition?
My friends are brilliant. We have a laugh.
What inspired you to take up cycling?
I decided that I needed to improve my overall health around two years ago. I had gained weight since the Cauda Equina Syndrome, so I wanted to improve my cardio vascular and respiratory health. I randomly saw my Brother’s bike and had a go on it. Surprisingly I found it quite comfortable and after trying the bike out more, I discovered that cycling didn’t affect my back!
I started slowly at first with relatively short distances. I then began doing around 50 miles a week and continued to slowly increase the length and I now do upwards of 120 miles a week!
What was your first race like?
My first race was the Manchester to Blackpool Night Race. I managed the 54 mile journey in just under four hours!
What did it feel like to cross that finish line?
It was absolutely brilliant! I could have carried on! I had done so much training for it that I was wishing I could keep on riding. I also took part in an event called VELO Birmingham and Midlands where I completed the 101 mile journey in 6 hours 58 minutes averaging at 14.5 miles per hour!
Wow that’s incredible! So what would you recommend to others with CES reading this who are wanting to get back into sport?
Go to see your doctor if you are thinking of taking up any new sport. I started with aqua aerobics and that was really good for my back. It’s a great place to start getting more active.
How do you manage your pain now?
Sitting or standing for too long can exacerbate the pain. I try to be mindful of what position I’m in and move before it becomes too painful. Long car journeys are particularly painful.
What does your future hold?
I’m planning another bike ride for next year. At the minute I’m thinking maybe a coast to coast trip. I’ve had a special bike saddle created earlier this year to support my back. The saddle is designed to allow weight to distribute through the sitz bones and disperse it over a wider area than most saddles that only come into contact with the coccyx.
We are very excited to say that Howard has decided to do the challenge for charity for our Cauda Equina Champions Charity. We are so grateful to Howard for his efforts, every single penny that is donated to us goes directly into helping people with Cauda Equina Syndrome.
Why do you want to support the Cauda Equina Syndrome Association?
The Cauda Equina Champions Charity is close to my heart. There hasn’t been any support for the people of Preston until Claire Thornber founder of CESA and Cauda Equina Champions Charity, set up a support group that I attended at the Nuffield Gym in Preston on the 23rdNovember 2018.
Admirably, Howard wants to help others with CES have access to support group meetings like the ones that he attends. For those that are isolated at home, he wants people to continue to have access to our one-to-one assistance through our helpline. He is also keen to help the Champion’s Charity try to advocate for better care for CES patients both in diagnosing and through quick surgical responses. Additionally to help them provide proper rehabilitation, to offer patients the best chance at a good outcome post surgery.
Howard came into the CESA offices with a smile on his face and an infectious laugh! We all had a great time chatting to him. It’s incredible to think that he has come from a place where he said that he felt like he had lost all his independence after he was first discharged from hospital, to present day where he is doing 100 mile bike rides! We can’t imagine how much strength and determination it took for him to get to this point… but we are in awe of it. Obviously life still isn’t a walk in the park for Howard, he still has to deal with bladder and bowel issues and pain, but his story is a great example of the potential a CES patient has with prompt decompression and embracing a sensible active lifestyle post surgery.
Thank you so much Howard for sharing your inspiring story with us and good luck in your next biking event!
Until the next time,
Catrina