”What did it feel like to have compression of the Cauda Equina ?” is probably the most frequent thing we are asked by friends and family.
It’s a good question and after speaking to others who have experienced it, there are many similarities and a few unique differences. I felt that I must include the experiences of others in this blog so you can better understand the answer to that all-important question. We all have our individual ways of describing what is ultimately a horrible experience that isn’t properly dealt with right now. Hopefully, the more we share our experiences, the better chance we have at preventing others from the same fate.
Initially, there was a feeling of being kicked in the back and there felt to be instability in my spine. I kept a hand on both sides of my back to try to support it. It wasn’t enough but I continued doing it anyway. The pain was a constant medium grade that was unlike any pain I had experienced and it is very difficult to articulate the unique nuances of it. As time progressed the pain increased slowly at first and then rapidly. I had managed some sleep for a little while, but I woke suddenly to a searing pain that began to shoot down my legs like sciatica pain but a lot sharper.
My situation developed to the point where, if I would move even slightly there was an immediate sharp electrical pain that was all-encompassing. I remember describing it to a nurse like lightning going down my legs. My back muscles went into spasm. I know now that they were trying to protect my lumbar spine and so my range of movement became restricted.
The next strange thing that occurred was pins and needles. If you have ever fallen asleep on an arm and felt the prickly sensation, you know it’s not a pleasant one. My pins and needles were insanely strong, they felt hot and came in waves. At first, I found the sensation nauseating but over time that sickness did dissipate. I found that my pins in needles happened in areas that later became completely and irrevocably numb and in other areas where they eventually became permanently present. As I write this I am still feeling it!
I also suffered bladder retention which was, and still is, one of the strangest feelings I’ve ever experienced. Knowing that I needed to pass urine and couldn’t was an alien feeling. Eventually, I stopped knowing when I needed to go. It was uncomfortable, worrying and I found it embarrassing. At 23 years old I was uncomfortable talking about bodily functions and I felt so out of my depth… especially being away from home and away from my Mother when it happened. I suffered the numbness and weakness of legs and had something called foot drop. I began to feel really scared about what was happening.
When you are having the tests for Cauda Equina Syndrome they put a finger in the anus to determine feeling and tone. For someone private and sensitive like I was, I became very upset about having that test done, but I don’t think I showed it on the outside. I was then catheterised for the first time which wasn’t nice, but the relief of having over a litre of urine drained from my bladder was a welcome one.
If you know someone who has just suffered Cauda Equina Syndrome my best advice is to be as supportive as possible. In one day your life completely changes. It is a massive ordeal to cope with physically, mentally and emotionally. For some, like myself, it will be the first time experiencing pain at this high level. I felt exhausted by it! The introduction of strong painkillers can have their own side effects and take a little while to get used to. Be patient.
Personally, I didn’t have any idea about the suggested 24 hour window of time to decompress the Cauda Equina nerve compression so I wasn’t aware of that ever-ticking clock I had over my head. If you are going through Cauda Equina syndrome currently or know someone who is please be mindful of that, a 24-hour response to Cauda Equina compression will hopefully achieve the best outcome for the patient. It makes sense really… if at all possible get that cauda equina decompressed!
I would also suggest that you contact us so that we can be involved in the rehabilitation process. Joining our Facebook group is a great resource to gain support from your peers. Our helpline is there for intimate one on one chats and our support group meetings are fantastic ways to meet others in the same position and help motivate you in your recovery. All these services are free and there will be new services offered in the future so keep checking the website.
Here are a few more quotes that I have been given permission to use, about the onset of Cauda Equina Syndrome:
“It felt like I had been electrocuted then no control from my waist down. It was the most horrific thing I’ve ever experienced” – CESA Member Lisa.
“It was worse than labour pain. I couldn’t sit down, lay down, stand up or move without the pain. I couldn’t bear anyone touching me either. Wouldn’t wish it on anybody” – CESA Member Louise
“The most incredible pain I’ve ever experienced, caused me to involuntarily leap about the room, banging my head. I screamed for my other half as I knew I was in trouble. I’m a tree surgeon and farmer and even morphine didn’t touch the pain. Someone said I screamed like a bear getting in the ambulance. Never want that again.” – CESA Member David
“It’s a pain you’ve never felt before. A burning intensity that renders you speechless and unable to move with the sheer force of it. Nothing helps. You want to cry, but you just don’t have the energy. You lose all inhibitions because the pain is so bad and you would do anything to aid it. Both times I had Cauda Equina were the most painful days of my life. I pray that I never have that pain again” – CESA Member Ciara
“A searing breath-taking pain that leads to a creeping black numbness which makes having babies seem like squeezing spots!” – CESA Founder Claire
“My disc went pop and it was like the worst cramp ever in every muscle waist down but nothing I could do about it, until after an hour where the pain went and just exchanged for paralysis. Never thought I’d be relieved to be paralysed” – CESA Member Paul.
“It felt like someone had a blow torch to my back, felt like it was on fire, took my breath away and then electric shocks that reduced me to tears” – CESA Member Natalie
“It felt like everything from my back down was being dissolved in acid. My feet, calves and thighs were numb but also felt like they were being crushed in a vice” – CESA Member Ian
“Like I was in the final stages of pregnancy, when the baby bares down ready for the birthing process… I had a John Wayne gait as I had foot drop on both sides.” – CESA Member Paula.
” ‘As close as a guy will get to full blown labour pains‘ was how my consultant in A&E described it to me” – CESA Member Carl.
To hear even more descriptions of Cauda Equina Syndrome, check out our Instagram page.
Until next time,
Catrina