Hi, I’m Mandy Smith and in May 2022, I was diagnosed with Cauda Equina Syndrome and had emergency surgery, followed by another decompression surgery in October 2022.
Looking back, I now see there were signs that I did not understand at the time.
For a couple of years, I experienced significant back pain and often could not stand up straight, I also felt a frequent urge to rush to the toilet. These symptoms would come and go.
I thought this was just part of getting older, not realising they could be connected or signify something serious.
I visited my GP several times about my back pain. They asked if I had any incontinence issues, I said no.
I did not understand that the sudden urge to urinate that I was experiencing is actually a form of incontinence.
Incontinence to me meant being wet all the time, which I was not.
This misunderstanding highlights how important it is for doctors to ask the right questions and explain medical terms clearly.
A good friend of mine told me about Cauda Equina Syndrome and its red flags. I had never heard of this before.
Reading about it, I was shocked to realise I had several of the warning signs.
My friend was really worried about me and told me I should go to the hospital right away, but I didn’t want to go. I thought you only go to the hospital when you’re really, really sick. I felt okay and could walk around fine. I thought maybe I was just making a big fuss over nothing.
I didn’t really want to go to the hospital, but I finally decided to go. When I got there, it was very busy.
I felt a bit silly being there, just because my back hurt. I didn’t think it was as important as other people’s problems.
I picked a seat at the back of the waiting room, as I didn’t want people to see me. I felt like I maybe shouldn’t have come to the hospital.
After speaking to the doctor, he said he wanted to do an MRI scan, I was in complete shock when I was told I had CES.
Everything happened very fast after that. I was taken to the Walton Centre in an ambulance with the blue lights flashing. I had surgery there just a few hours later.
It was a big surprise that I had CES. I went from sitting in the waiting room, feeling like I shouldn’t be there, to having an operation so quickly. It shows that it’s always good to get checked by a doctor if you’re worried, even if you think it might not be serious. I left the Walton Centre not realising that I now had a spinal cord injury.
CES has changed my life. I now have chronic pain in my lower back and legs and also some numbness.
I use catheters for incontinence and receive bladder Botox every 6 months. My husband has to help me a lot.
It has been a significant life change.
Since my diagnosis, I’ve connected with many others who have CES.
Talking to people who understand my experience has been incredibly helpful.
The Cauda Equina Champions Charity has provided invaluable support and therapies, helping me adjust to life with CES.
By sharing this information and my personal experience, I hope to help others recognise CES symptoms early and seek medical attention straight away.
Remember, if you have back pain along with any bladder or bowel changes, numbness, or other unusual symptoms, don’t hesitate to seek medical help.
Be open with your doctor about all your symptoms, even if they seem unrelated or embarrassing.
Clear communication can make a crucial difference in early diagnosis and treatment of conditions like CES.