Cauda Equina Awareness - One Woman's Mission to Support, Comfort & Empower

September is Spinal Cord Injury Awareness month and this year we wanted to celebrate one of our incredible customers Allison Whitehorn who founded the Cauda Equina Syndrome Spinal Cord Injury support group or 'CESCI'.  Following a long journey with spinal issues, Allison was formally diagnosed with Cauda Equina Syndrome in 2014.

In this interview we talk to Allison about Cauda Equina, what it is, how it is diagnosed, treated and most importantly where people can find the essential support needed to help empower people living with Cauda Equina. 

Can you tell us a little about what Cauda Equina is and how you came to be diagnosed? 

Cauda Equina Syndrome is a rare but serious condition that affects the bundle of nerve roots at the lower end of the spinal cord. This bundle is known as the "cauda equina," a Latin term that means "horse's tail," which is what these nerves resemble.  Cauda Equina Syndrome occurs when these nerve roots become compressed or inflamed which causes a number of symptoms including numbness, pins and needles, sciatica (sharp shooting pain from the lower back down to the legs), muscle weakness, loss of sensation as well as bladder and bowel problems.

I had actually never heard of Cauda Equina until I had surgery so prior to diagnosis and even after being admitted for surgery I wasn't aware of it, what it was or how it's treated and managed.  Prior to my diagnosis I was living with sciatica, excruciating back pain and numbness in my legs as well as issues going to the toilet. These symptoms were all signs that nerves in my back were compressed and inflamed and as a result I required emergency surgery. Despite the surgery, I have been left with a partial paralysis from my waist down, I can walk but only a few short steps and use a wheelchair as well as crutches and a walking stick day to day.  I also still live with bladder and bowel issues as well as pain.

How has your journey with Cauda Equina impacted your life and decision to set up CESCI?

My surgery and diagnosis was life changing, I found it physically very difficult but also mentally incredibly challenging.  It's been very isolating and lonely. Bladder and bowel complications are hard, they are often harder to explain, find support for and navigate generally. I really struggled to find support and often felt medical professionals as well as friends didn't understand or believe me, which led to me having to navigate managing my condition alone.   In doing this, I've realised there is so much that can be done to help people living with Cauda Equina.  Initially I started a group on Facebook which quickly became a strong network of us living with the condition.  By sharing experiences, I found things eased and so decided to do as much as I could to help grow the support group and overall support available.

What has been the biggest support and help to you navigating Cauda Equina?

100% other people living with Cauda Equina, so often the theory vs. reality are two different things and only really talking to people who are living with it, have I found ways to manage it better.  Speaking to others, offering tips, advice and empathy is so essential in moving forward but also not feeling alone.

What advice would you give to someone facing a Cauda Equina diagnosis or injury?

Search all you can for support, follow our Facebook page and listen to others who have been where you are.  We offer lots of meetups around the UK as well as Spinal Injuries Association who are wonderful.  There is help and hope out there, don't give up just make it your mission to understand your own body and try not to let the disadvantages stop you.

How do businesses like ours help people living with Cauda Equina? Are walking aids always needed and how important is it to choose the right mobility aids?

Everyone living with Cauda Equina has mobility issues, Cool Crutches offer great comfort and design for individuals to feel confident walking, but also proud to show them off.  Cauda Equina is a life long condition and requires walking aids for life.  The key to finding the right mobility aids is that they don't cause further injuries or damage to your body.  Cool Crutches have been carefully designed by someone who lives with a disability and understands the reality it brings.  They are ergonomically designed for comfort but with the bonus of colours and fun prints which does wonders for offering confidence when going out and about!

How can people find out more about the work you are doing and Cauda Equina support?

They can join our group on Facebook - Cauda Equina Spinal Cord Injury or visit our website - https://www.cesci.org/

A big thank you to Allison for sharing her story and crucial support for so many navigating life with Cauda Equina. 

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