Cauda Equina Awareness Day

Mid July 2008

I stood up out of a chair at work and felt this pain shoot across my back and felt I could not stand up. I managed to get home and tried resting. A couple of days later I was in so much pain in my back and pain down my leg and into my foot I was struggling to move around the house and kept trying to move.

I managed to go to work but after an hour I could not sit or stand anymore, and the HR manager walked past and said I know you are trying but you need to go home.

I phoned and managed to get into the doctors. The doctor almost pushed my legs towards my head; I screamed out and he said you have sciatica and prescribed some pain meds and anti-inflammatory tablets. After a few more days I went back to work.

My dad said he use to see me walking to work and he said I went from looking my age walking tall to walking like a little old lady.

I turned thirty on 10th of August and my partner John had arranged with friends and work friends a meal out in Birmingham and a night of dancing and having fun. On the walk to the first pub I said to John I think I have stood on a stone, he looked and said no nothing there.

2 hrs later I could not stand on my foot, and I left everyone, got in a taxi, and went home.

On the Monday I went back to the doctors and said I feel like I’ve got glass or sharp stones in my foot, I’d managed to see my normal doctor who I told me that what the doctor a few weeks before had done was wrong and she apologised and said she couldn’t believe it. My doctor said if I lost control of my bladder, bowels or had retention in my bladder or bowels then to either get straight into see someone at the doctors urgently or go straight to A&E if I could not get into the Drs or out of hours.

14th August.

 I woke and felt like I could not get out of bed and had a little cry and phoned work and said no way could I go in.

I could not get into see the drs as I had asked if someone could come out as I could not get in, no one was available.

15th August.

I woke thinking I could not take the pain anymore. I think my partner thought I was putting it on, and he said get up and go to work, I said I’d love to, but I don’t think my one leg is working to which he rolled his eyes and laughing pulled the quilt off me. To my horror not only had my bladder emptied into the bed but I’d also messed the bed, I was ashamed and once John had made the spare bed he said leave that go and lie on the other bed and I’ll phone your mum to see if she can help as he had to rush off to a meeting.

Since being in the spare bed my bladder had emptied again. My mum took one look at me, cleaned me up and we managed to get me in the car, and she tuck me straight to A&E.

By 10.30am I had had an MRI, and they were just waiting to see the images. An orthopaedic surgeon looked at me and did reflex tests and nerve tests. Using pins on my big toes and around my bottom, I am glad to say different pins, and I could not feel a thing. By 11.30am I had been told that I was being blue light transferred to Coventry hospital as that is the best Neuro team in the area.

Once at Coventry I had a Neuro registrar come and do all the tests again and then at 2pm a consultant arrived and told me I had got something wrong with my back called Cauda Equina. I said what is it, will it be fixed, what will happen next. The surgeon said I’d be going to theatre in the next hour and he would do what he could but he said there is a lot of damage been done to my spinal cord and he said he couldn’t make any promises and he would do his best but said he wouldn’t sugar coat it he said he would be surprised if I wasn’t in a wheelchair for a little while if not permanently to which my mom burst into tears. She phoned John and told him what the surgeon had said, mum told him to go and pack me a couple of PJs and wash stuff. Mum also phoned work who said to keep them posted and not to worry about anything as I had only had a big promotion 2 weeks before.

16th August 

The consultant appeared and walked around and when he got to me, he called someone’s name and about 6 drs came in.

How are you feeling?

Any pain? Yes

Can you push against my hands with your feet. Can you pull them towards you.

He said on both occasions come on push, to my sharp reply “I AM!!”

The consultant then said that the one disc had got bits all stuck to my spinal cord and the other had pushed against it so much that he didn’t think I’d be able to use my legs , he said there is no strength but he can feel me trying to move them and that’s positive.

He then informed me that trying to remove the bits off my spinal cord it had been torn a little and had a small leakage which is why I had a banging head and informed me that I had to lay flat for 7 days so that it could heal itself and not to worry he would have me up and around soon. Any questions he asked, “I get married in 12 months will I be able to walk down the aisle?”

Let us wait to see how you are when we start getting you moving.

I was convinced I was going to be in a permanent wheelchair; I had got use to the idea over the next 7 days. Other ladies on the ward were coming, having ops, and leaving.

9 days after my surgery was the first time I had sat on the edge of the bed, I managed to stand, the next day I was walking, extremely slowly and little steps.

10 days after and I was allowed home with crutches no one had told me how to do stairs, so that was a challenge.

John tuck the discharge letter to the drs and the next morning I had a phone call from my dr asking what had happened , I explained what I remembered and she said how very rare the condition was, she booked me an appt with the nurse to remove the clips and she said she had booked an appt with her for just after.

By the time I saw Dr Farr I needed pain killers and medication to help with my legs cramping and it felt like they were jumping up off the bed.

The next time I saw Mr Dardis was 6 months later, I told him I still had not seen a physio except the day I left the hospital. I explained about the bladder and bowel problems I had been having, and he got me appt with the right people at the QE in Birmingham he said.

I did not hear a thing from anyone about my bladder and bowels; I was constantly using incontinent pads and had to put waterproof bed sheets on.

I had managed to return to work part time and very slowly by half an hour a week extra.

After 2 months after returning to work we had a lot of snow, so I took it very careful and with my walking boots on. I went, everyone kept saying you were the one person we did not expect to see today. The next day it had all gone and off to work I went. I slipped outside the door of work off I went in an ambulance and all the tests done and after a scan I was blue lighted to Coventry being told all the same as before. I had seen the anaesthetist and I had just been wheeled into the anaesthetic room when the consultant walked in held my had and apologised and said they have sent the previous scans over Instead of the new one. I honestly had a big sigh of relief. They kept me a few days to make sure I was ok when I heard my mom say something had changed, I asked what she was saying when she came over and she said u look like you are dragging your left foot. I’d not noticed but I was told to keep an eye on it.

For my wedding, my bridesmaids had glammed up some crutches and had spray painted it white. I managed to walk down the aisle do I was thrilled and even though I had lots of rests and disappeared for lie downs I had a great day.

3 months later I noticed I was tripping up on nothing and falling down the stairs so more than once John came home to me in a slump at the bottom.

 2 months later I stood up of the toilet to pull my trousers up and it was like my lower half just went to jelly, something felt very different, and the pain was horrendous. Ambulance came as I could not get myself up the tuck me straight to Coventry this time. I had an MRI, and I was taken to theatre again this time I had surgery, and another disc had crushed my spinal cord again but 2 discs up. This one was totally different feeling and how I was left after was the same though, although this time I was seen very quickly by urologist and after lots of embarrassing tests to do in front of people. It is surprising what you soon get used to doing in front of people and not bothering one bit about it. A week later a nurse came to my newly moved into bungalow which I was pleased with, and she had to teach me how to use a catheter.

My body has changed as to what works and what doesn’t. Over the years a lot less works but I have found adaptions to help me get back to life as much as I can.

Thankfully due to new style crutches and electric wheelchairs and adjustable beds I can live a more normal life, but it has only been the last 4 years that I feel like I can enjoy life again.

Over the years as you collect new conditions every year as CES is the gift that keeps on giving. Over the years I've learnt that we all have up and really down days with Emotions and physically, until we wake each morning we will never know what sort of day I’m having but on my really bad days and on the good I go on Facebook and go on the CESCI page and chat to my friends that totally understand what I’m moaning /Ranting and Raving about.

I have never met anyone on the page, but I do call them friends as we share something I have never told anyone else. There are people on there from all over the world and we all have the same thing in common, and it is funny how all over the world we all wonder why we have to let our bodies be so damaged before anyone will try to surgically to fix them. Thanks to the support group I have Realised that I can continue to live the life a 47-year-old single woman’s life just like any other woman, when it comes to holidays, mobility and being able to be happy!

After my last surgery, the fact I had foot drop in both feet and numb legs, sometimes they all stop working together and I am told it is called NFD.

So, legs and feet, bowel and bladder that seem to work when they want all I can say is that I am very lucky. There are people a lot younger out there left a lot worse off than me and I thank my lucky stars that I can still live my life, I also hope I can help others on the support group realise this like others have helped me to.