Hi, my name is Catrina, I’m a 31 year old woman who lives with her Mother who also happens to be my carer. Clearly, this wasn’t my life plan. I was a dancer. I was a World Dance Masters champion in fact. I studied dance at Uni in London and had high hopes for a career in choreography. But life doesn’t always turn out how we plan, despite our best intentions. I now have no feeling in my legs or saddle region, my legs give way so I’m often in a wheelchair, my bladder has failed so I have a suprapubic catheter and now my bowel is unfortunately following suit. Why am I like this? The reason I am like this and not dancing my heart out somewhere is because I suffered Cauda Equina. In fact, I suffered it on two separate occasions and I had several severe medical conditions following those two compressions.
The word Cauda Equina is also a noun, it’s the name for the bottom of the spinal cord where the nerves all branch off to different places in the lower half of the body. The name is given because aesthetically it looks like a horse’s tail. When someone says they have Cauda Equina Syndrome (CES) they are describing the neurological effects of the nerve compression. We call these Red Flags, they are indicators that there is/or has been spinal cord compression.
I want everyone to be aware of those Red Flags because life with CES is challenging to say the least. For me it’s made even more frustrating because I wasn’t operated on immediately. If medical professionals act quickly in decompressing the nerves (within 48 hours, ideally <24 hours) they can prevent lasting nerve damage like mine and so many others like me.
There are roughly 1100 cases of Cauda Equina registered with the UK Spinal Unit every year, however, for every one of those registered there are 5 more cases that are undocumented in hospitals and acute centres. That means there are up to 5500 cases a year in the UK of CES. It’s clear that based on those numbers there needs to be more awareness and more guidance for those suffering. Claire Thornber who suffered Cauda Equina in 2010 decided to create the Cauda Equina Syndrome Association to provide the support that was lacking. Patients and those around them are in dire need of external help to provide them with the tools to deal with the many ramifications that our condition can cause. Claire is making that happen and I’m pretty much in awe of her!
Personally, the emotional pain my medical condition has caused me and those around me has been a profoundly hard thing to deal with. Yes, the pain and physical problems are extremely tough and come with their own challenges, but the way that relationship dynamics have changed and family and friends become carers, it is a lot to deal with. I decided to have therapy sessions that I pay for myself to try to help me cope with those changes, because there weren’t any resources I could find back in 2012. The immense pain I have experienced in these seven years has instilled in me a strong desire to build awareness in the medical community to prevent cases like mine from happening. I don’t want anyone else to have to suffer lasting neurological damage like mine, if it’s at all possible. I also feel compelled to help others who are going through the same thing I am. I have gained so much knowledge and experience that I feel would be really useful for others going through a similar situation.
So, I am here to blog my experience volunteering with the CESA. I’m also going to fill you in on the amazing work that is being done here, such as the many support services that are offered all over the UK. I’ll also talk about the plans for the future, and what you can do to help us build something together that will provide such an important resource for all those who are suffering right now.
Thanks for reading my first blog post and if you don’t mind following us on our social media platforms and sharing our information to help us to reach those people that need us, I would appreciate it. Cauda Equina Syndrome can be a life changing condition that dominates your life with pain, it’s very easy to become isolated from the world, I know. I extend my hand to all of you suffering, you are not alone.
Until next time,
Catrina x