Caroline's Story

Caroline’s Story


My story began in December 2011 when I had a fall and woke up next day with a bad back and shooting pains down

my right leg.  I went to the doctor who signed me off work for a week and gave me some painkillers.  I rested for the

week but unfortunately the pain did not go away and I was back two weeks later when he prescribed me with some

more painkillers.  I went back every 2 weeks for 5 months but now the painkillers were doing nothing and the pain was


I happened to bump into a friend of mine who was a nurse and she told me to demand an MRI scan to find out what

was wrong.  I begged my doctor to send me for one and he reluctantly agreed.  The results showed that I had a

herniated disc and that I would need an operation to fix it.  That was in May 2012 and he made an appointment for me

to see a specialist in September. I cried and cried as I didn’t think I could wait that long and I called every week to see if

I could get a cancellation.

 At the end of July 2012 I woke up one morning and the sciatica was down both sides, I was in agony, I don’t know how

I managed to go to work but I stuffed myself with painkillers.  My boss shouted at me that day and I just couldn’t take it

anymore.  I went to my doctor and demanded that he see me, he gave me some sleeping tablets and signed me off

work for 2 weeks and told me to rest.

 During that first week I woke up one morning and couldn’t feel my right foot.  I was really scared I knew something

wasn’t right.  I went down to the A&E for help.  I was there for 12 hours and was told it was nothing to worry about and I

was having a spasm.  I went home with a handful of stronger tablets and was told to rest.  Two days later I woke up

and I couldn’t feel both of my feet.  Now I was panicking.  I went to a different hospital this time and again, told it was

nothing to worry about and was having another spasm.

 The very next day I woke up and couldn’t feel anything from the waist down but the pain was unbearable, I was

screaming in agony, my wonderful husband  took me back to hospital and when I told them the symptoms they decided

to give me an MRI. They tried 4 times to get me in the MRI but I couldn’t take the pain so after so many shots of

morphine, they strapped something to my back and put me in sideways.  When they got the results they said I would

have to have an emergency operation.  At 1am the surgeon came and made me sign a form telling me of all the

dangers and said I would be operated on at 7am.  At 6pm the following evening they finally took me down for the op.

 The next day, I was really scared, although I had no pain, when I tried to move my legs I couldn’t, I couldn’t move my

toes and I couldn’t feel anything in the saddle area.  A physio came to see me and gave me a sheet of exercises to do

and pricked my feet with a pin.  She said she didn’t hold much hope for any feeling to come back, that made me feel

really great – no!!! The surgeon came to see me on the 2nd day; he looked at my chart and said I could go home.  I

couldn’t even walk!! But I had to get out of there so my husband took me home armed with crutches that I didn’t even

know how to use.  Also I live in a 3 storey town house, how the hell was I going to get up the stairs!!!

 I lived on the middle level for 7 weeks,  Dragging myself up and down the stairs was the only way I knew I wanted to

go to the loo!  My lovely boss who only paid me for 2 weeks while I was off was demanding to know when I was going

back to work.  I still to this day don’t know how I did it but I wanted to go back to work as I missed all my friends. As I

couldn’t drive, he arranged for a colleague to pick me up and take me home and let me work 10am until 2pm for a

couple of weeks and increased it an hour every couple of weeks and gave me time off for physio.  I did my exercises

religiously and gradually day by day saw some improvements.

 I was supposed to have a 6 week review but nothing was booked.  I chased it up and the nurse said she forgot.  I

finally had my 6 week check 5 months later, which is when I found out that I had CES.  I was relieved in a way as I

started to look on the internet and found some Facebook pages and found people who have suffered as I have.

I am very fortunate, I have no feeling in my right foot but have a weak foot as opposed to drop foot and my foot is often

blue, my feeling is coming back in my left foot and I am still numb in bits of my saddle area, My bladder and bowels are

fine but I do have terrible stabbing pains in my legs and feet and up my backside..  But I have heard so many awful

stories and outcomes that are far worse than mine.  I am due to see the consultant once more in August. But I can’t

really see what else he can do.

I can walk unaided although still have balance issues and still have my job, a lot more than many of my fellow sufferers




Cauda Equina Syndrome Sufferers Global Support Group