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My Story - Cauda Equina Syndrome recovery and relapse

Hi everyone - new member here. I've been browsing this site and these boards for a few years and have found a wealth of information but have only just now decided to post.

Firstly, apologies - this is going to be a long one!

Anyway, for anyone who is interested, here is my story:

I am a 35 year old, otherwise healthy man. I was a removal man for 8 years, carrying lot's of heavy goods, we had a contract with an importer of stone sculptures from Zimbabwe...very nice but very, very heavy! Lots of carrying of pianos up and down stairs, washing machines, etc, etc... being a big strong man they always got me on the heavy stuff! I used to have back pain all the time, but back pain is just a bit of back pain - it always gets better, right?!

Anyway, after 8 years I left removals and went back to university to study film and became a film-maker; always wanted to be a director so I made lots of short films, adverts, music videos. I loved it - I was starting out on my journey to become the writer/director I always wanted to be. I set up a production company and to fund the film-making became a freelance camera operator and cinematographer, working on documentaries and other peoples films. Lots of putting heavy cameras on my shoulders, carrying equipment, setting up big heavy lights, etc, etc... In other words - another job putting maximum stress on my poor back!

Fast-forward to August 2011. I'd had a few months of back pain, and was seeing a chiropractor who was treating me for a twisted pelvis and cracking my back for £35/treatment twice a week! End of August, I was going to my parents for my birthday, they moved a few years ago from London to Lincolnshire so I was getting the train from Kings Cross, carrying my heavy bag, but my pain was different this time, I had terrible sciatica which was a new thing for me and my back pain was stabbing and sharp.

Within 24 hours of being at my parents, the pain got worse and my legs started to get weaker, to the point I just couldn't move them. My mum said I should phone NHS Direct (a medical advice line) and speaking to the lady on the phone she said I needed an ambulance because I was paralyzed. Funnily enough, this was the first time I'd even considered my legs not working and not being able to feel anything below the waist meant I was actually paralyzed! Ambulance arrived and they took me to Grantham hospital, they didn't know what was wrong, sent me for an x-ray - came back fine so they sent me back home. This was on my birthday!

Back at my parents about midnight. I had a bit of birthday cake and had to crawl on my bum using my hands to move me to the bedroom at my parents....the stairs took a while! Couldn't sleep and the next day I was still paralyzed. My mum phoned her G.P who came out to see me and called me another ambulance. 2 ambulances in as many days for someone who had only ever sprained an ankle playing football. Second ambulance was where I discovered 'the gas' lovely stuff! I was taken to Peterborough hospital this time. A doctor checked me out and referred me to Addenbrooke's, Cambridge. They have an excellent neuro-department. Another ambulance ride. Around 10.30pm that night they said they were sending me for an MRI. I didn't really know what an MRI was until I got into the room and saw the machine, I also didn't know I was claustrophobic! Horrible experience. They took me to a ward around midnight and about 1 am I finally got to sleep after being awake for about 36 hours! 2 hours later, at 3am, what felt like the entire surgical staff at the hospital woke me up telling me they had to do emergency surgery on me. My L4/L5 had massively herniated, compressing my cauda equina nerve, effectively cutting any senses from coming past my waist.

I was expecting that I would wake up from the operation and be able to walk again and everything would come back instantly - No. They told me that I had Cauda Equina Syndrome, they hoped the nerves would re-grow but they were not sure and only time would tell. Because I live in London, Addenbrooke's had to transfer me back to my local hospital so a week after the operation, I arrive at The Whittington, North London. They honestly didn't know what to do with me and were effectively prescribing me paracetamol four times a day for a week. They discharged me and I went to stay back at my parents.

My parents put a bed in the dining room and that became my bedroom for the next three months. The first month, was very slow, I would sit at the end of the bed trying to make my feet move - do you remember that scene from Kill Bill? I remember screaming for my mum to come in and look at my feet when, eventually, I noticed the slightest bit of movement - less than a millimeter but they had started to move again! The next two months my recovery sped up dramatically until I had almost full movement in my feet and legs. I was weak but the nerves had started to grow back and were sending signals to the muscles. I could still not walk without a zimmer-frame and had zero balance but things were on the up.

In December 2011, I was eventually referred to the National Hospital for neuro-surgery which has an excellent rehabilitation department. I was in there for two weeks. I went in on my Zimmer-frame and came out on a walking stick!

2012 was excellent, I recovered so fast and so well, I re-joined my gym, went swimming, went to Pilates classes. We all thought this was it, I was making my full recovery!

Back pain started up again in September 2012! My G.P prescribed me pain killers and anti-inflammatories and referred me back to the National Hospital to see a neurosurgeon who referred me to pain management and said he would check back on me 6 months later. It took 6 months for the pain management appointment to come through. It was a long 6 months too, over Christmas, January and Febuary, I could barely walk because of the pain I was in. Stupidly, I was trying to handle the pain and just get to my appointments.

Pain management came a week before the neurosurgeon follow-up. After waiting over an hour in the waiting room - the pain doctor spent 5 minutes with me and said I needed to see a neurosurgeon! A week later, the neuro-surgeon referred me for an mri. 6 weeks later had my mri. 2 weeks after that my neuro-surgeon called me and told me that the same disc, L4/L5 has blown out and it was obliterating my spinal canal, he said I needed surgery - quickly. He asked me how I was feeling, and funnily enough my pain leveled out a bit in March, so told him not too bad, considering. He explained that he was going to do another emergency operation on me but after speaking to me he said he wasn't as panicked as he was and I could wait to see him in clinic before he schedules it. If my symptoms worsen, to go straight to A&E and he'll see me that way.

So, now I have a clinic appointment, this Friday to discuss the operation and apparently it's going to be in a week or so.

I'm scared but also really looking forward to potentially waking up and not being in complete agony.

In many ways, I feel very lucky, I have the best and most supportive family, great group of concerned friends and the most understanding and loving of girlfriends....I will put a ring on her finger one of these days! But, in other ways, I just can't help feeling sorry for myself and thinking - why me? It's horrible to think I haven't worked since August 2011!

I'm hoping this will end my pain and now I really need to find a way of ensuring this doesn't happen again so I can get back to work. Even considering disc replacement surgery as an option.

Anyway, that's my story. Sorry for the length. Life can be a b*%ch sometimes!



  • Really sorry to hear what you are going through, i hope your recovery will not be as long this time, but you are blessed you have a supportive family . Takecare
  • BunkyBBunky Posts: 2
    edited 04/16/2013 - 10:54 PM
    Thank you Anelsen15, oh dear - poor ADR Surgeon! And Tina_Coyle, thank you and yes I do feel blessed with such a supportive family and fantastic girlfriend.

    I appreciate you taking the time to read, I re-read what I wrote afterwards and saw how long my post was and didn't expect anyone to bother to read it, so thank you for taking the time!

    I will post on Friday and update when I know more. I think the hardest pill to swallow (and I have swallowed a fair few recently!) is the feeling of vulnerability, especially in public, in crowds or when I have to queue. A few times when I have only walked to the local shop (less than a minute away!) for a pint of milk or something, I've been stopped in my tracks with the most unbearable of pain. Like I said, I've always been a big, strong, relativity young man and these days, I feel like a 90year old!


  • LizLiz Posts: 7,832
    I am sure that you will find your time on Spine-Health very rewarding. This site is a powerful and integrated system that is dynamic and continues to grow.
    Here are just some of the highlights:

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    - As a bonus, Spine-Health provides these patient forums. Here is where you can meet thousands of other people who understand and can relate to your situation. You will soon become part of the Spiney family who provide comfort and the advantages of a Support System. You are now part of this family that is approximately 20,600 International members and growing daily.

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    If you have any questions or need assistance, you can use the Private Message facility to contact any one of the Moderators on my team:
    dilauro , tamtam or liz

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • I really understand about what you said about feeling vunerable, because i went from being a very fit person to being a 33year old in a 60 year olds body but 6 years on now things are worse for me. So like you i got a good family a lovely son a crapp husdand but i left him years ago. When i had to give up work 5years ago i had to move out of my flat in my nice area and move in to socail housing, because i could not aford to live there any more, i felt vunerable walking with sticks one day i fell flat on my face thease 3 girls were there they were all over 18 you no what thay just laughted. I picked my self up shaked myself off and held my head high but all i really wanted to do was cry. Well thats the way life can be some times crule but try not to let it keep you down. I will check your post on friday goodluck
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