Four years ago I’d had one of those life-changing events that you read about on Facebook. I’d just undergone emergency surgery for cauda equina – one of my discs had slipped out of place in my spine and was crushing my spinal cord. Fortunately it was caught early and I was rushed in for emergency surgery.
After a week in Derby Royal Hospital, I was discharged from hospital and began the slow rehabilitation back to normality. Walking was the first battle I won, with nerve damage to the muscles/skin down the back of my legs I had to walk with a stick. A large patient German Shepherd got me walking again and whilst I have reduced sensation down the back of my legs/feet I walk miles, the same as before my condition started.
The second big change was learning to self-catheterise. The first few times I did this I felt like I was going to pass out (if you’ve seen the length of a male catheter you might appreciate why!) but I learned to do it quickly at home and at work (who had special equipment installed at work). It’s been a year now since I was discharged from urology as my nerves had regenerated sufficiently that I no longer needed to use the catheters (saving the NHS around £1.50 per visit to the men’s room!)
I still have a rise and fall desk at work but very rarely need to use it in the upright position, and I have an amazing memory foam seat that prevents backache (and it drives me mad when anyone touches the myriad of levers on the underside of the chair as I don’t know what most of them do!)
So why the update – I still get lots of messages from people who have suffered from some kind of spinal/back trauma and either suffered cauda equina or something similar. I know that your recovery might be slower than mine, or may take a different route but don’t give up. Hang on in there and keep doing the things you want to, it will get better!
Follow my cauda equina history here
I’d been back to see my consultant because of tingles and twinges in my (mostly numb) toes. I had been referred for a scan which took five weeks for an appointment to come, and another month for a follow up appointment with my consultant. The latest scan was taken exactly a year after the last scan (taken while I was suffering from cauda equina).
The news was good which is the reason for my post, as it shows that there has been no further degeneration of my discs. It also shows that my nerves are no longer being pushed or squashed and that the twinges are mostly likely as a result of historic nerve damage or even regeneration.
I know that things have got easier since I had the microdiscectomy (which was when I was at my lowest physical condition) and that I’m a lot better now. I still get aches in my calf muscles (which I don’t have full control of) but I don’t notice them as much these days.
My message to cauda equina sufferers is get diagnosis and treatment as soon as possible, and keep in there. Don’t give up, keep going because things will get better – or at least they did for me.
It has been 12 months today since I suffered from Cauda equina syndrome (CES) and I’ve been contacted by several people who have followed my progress. I wanted to provide an update for the people who comes to my blog and read about the condition, so they know it isn’t always doom and gloom.
As I’ve mentioned previously on my blog, my lifestyle has almost returned to what it was before CES. I work full time (my working week is 50-60 hours long) in a special school, where I teach science lessons and am the assistant head. I have been fortunate in receiving support from work so I have made to measure seating which makes a huge difference, and I have an electric desk which I can raise to standing height if required. I have an ultrabook laptop which means it is light and portable – all these adjustments were recommended by Access to Work when they carried out my workplace assessment.
Some of the nerve damage has repaired itself, and although I still suffer from loss of sensation down the back of my legs, it isn’t as pronounced as it was a year ago. I can also run now (albeit slowly) which I couldn’t do last year as my legs didn’t obey my brain when I tried!
I don’t suffer much pain, although I do get twinges in my toes (it feels like someone is stood on my little toe) which my consultant tells me is classic S1 damage. I’m due to have another MRI scan tomorrow to see if this is nerve regeneration or further nerve damage. Usually any pain I feel comes from sitting in the wrong position when I have to stand up – I’m getting better at making myself sit up straight too!
The only aspect that hasn’t shown that much recovery is bladder control and the need to practice intermittent self catheterisation. Fortunately after a year of doing this it is second nature to the point I don’t think about it much in my home/work life (although I do have to plan more carefully when I am going to be away from home for extended periods of time).
Thanks once again to all the people who have got in touch and I hope this post gives some hope to those of you who find yourself unfortunate enough to suffer from cauda equina syndrome.
I know a number of people find this website by searching for cauda equina syndrome (CES) and I thought it might be encouraging for them to post an update on how I’m getting on with my condition.
The good news is I haven’t been back to the consultant since I posted last – my six month open appointment is rapidly running out but I’m not worried. Apart from the odd tingle on a numb patch of leg or foot I don’t experience the pain that other CES sufferers do (at least at the moment). My phased return went without complication and I’m back at work full time. I’m fortunate that my teaching timetable is lighter than many because of my leadership role as assistant head. I’m also lucky that I get the chance to walk about a lot which is good for my back – as soon as I feel a twinge from too much sitting down I know to do a lap of the school!
I’m still using the catheters. On the suggestion of the occupational health service, school have purchased a locker for me to store my medical supplies where I need to use them. This saves having to run and get my bag when I need to visit the bathroom (women may be familiar with this problem). I mentioned in my last post changing the company I use for healthcare supplies (Charter healthcare owned by Coloplast) and I really can’t fault their service – as well as taking the fee for dispensing, they send me alcohol gel and wet wipes and even deliver to me at work.
I find myself using my stick less and less. My walking stick has become something of a security blanket. I feel self-conscious walking in busy places because the nerve damage means my calf muscles don’t work properly. Using a walking stick tells people there is a reason I have a slight wobble and it isn’t alcohol related! I keep a fold-up walking stick in my drawer at work just in case (although I haven’t used it yet) and I’m trying to wean myself off using one for longer walks. It follows that if I can walk miles over the course of a day at work without using one that I must be able to do so elsewhere.
I’m waiting on an access to work application for a full workplace assessment (occupational health suggested an electric height adjustable desk!) and I find that as long as I am sitting up nice and straight I am quite comfortable but if I don’t I soon get aches in my back.
I realise that each person who has CES is different but that doesn’t stop me wanting to talk to others who have had the condition. There are some excellent support groups on Facebook (with some frank and open conversations/questions) and more recently UK based charitable organisations have emerged to provide support.
I’m happy to talk to anyone about CES – if that’s you then leave me a message.
It is now just over 3.5 months since I had surgery to remove the compression on my spinal cord. I’m not sure how much of the progress since then has been recovery and how much has been adaptation but:
- I’m half way through a phased return to work. They have been really good at listening to my needs and making adaptations to my job (in line with disability legislation). I’m finding being back tiring but that is to be expected after nearly six months off work. The students have been very supportive and keep asking me how I am, and if they see me without my walking stick they want to know why!
- in terms of my nerve damage, it is hard to see any improvement since my last update – I’m still walking about the same amount, still have stiff heavy legs and still need to use the catheters.
- I’ve had to change healthcare suppliers for dispensing my medical prescription. My previous supplier (Wilkinson Healthcare) had no facilities to take payment for my prescription fee. I’ve move to Charter Healthcare who seem very efficient and there are freebies too! Who would have thought it would be so hard to pay for something?
Compared to many who suffered at the hands of cauda equina I have been very fortunate. I tell my story to give others who have suffered from this condition hope that their lives will improve.
Follow my chain of cauda equina updates here
It has now been just over 12 weeks since surgery (how time flies!) and so an update for my cauda equina syndrome (CES) recovery.
I have seen my Urology consultant, my orthopaedic consultant and my GP since I posted last.
I’m still having to use single use intermittent catheters but have managed to get my prescription changed (thanks to my GP and consultant) to 100% Coloplast Speedicath compact (now I don’t have to ration them!). This is the part of my condition that other people feel should be the worst part – but once you have a routine and have practiced it isn’t that bad (the hardest part is doing it away from home since you can’t follow your routine the same and end up doing it crammed in a toilet cubicle!)
My GP told me I was only his second patient ever patient to get cauda equina – a mark of how rare it is He did sign me off until I got to see my spinal consultant.
My spinal consultant was pleased with the progress I was making, so much so that he doesn’t need to see me again unless I want to – so I have a six month open appointment. I was thoroughly examined, got to read my theatre notes, saw my MRI (above, taken just before surgery – can you see where the compression of my spinal cord is?), and I saw the X-rays of my back with retractors in. In short any further recovery is down to how much my nerves are able to heal. The best thing I can do is to remain as active as possible and to help that he said I could have a go at returning to work (as long as I was careful!)
I am walking further now, but I suspect that is more down to adaptation than healing. I have gradually increased the distance I walk, and although I need a stick over longer distances, I have improved several-fold over the distance I could walk when I left hospital. Whilst I don’t feel quite as able as I did before CES took hold, I do feel positive about my recovery and my future prospects.
A phased return to work should start soon – watch this space!
Six weeks have flown since my operation. I’ve had several return visits to the hospital and even a visit to my GP as well.
What’s happened since my last update?
- I still haven’t gained nerve sensation in my legs or bladder/bowel function
- My consultant seemed pleased with my progress. I don’t have to go back for six weeks then I’m in the spinal clinic instead.
- I’ve tried using a range of different intermittent catheters (and have the internet’s first catheter review scheduled to be published soon)
- I’m still walking with a stick and tire quickly. I walk at 1/2 to 2/3 of my old walking speed but daily exercise seems to be helping.
- I’m not as wobbly as I was weeks ago but I still fall over
- I’m still signed off work
- My wound has totally healed although it hurts if I sit up for too long
- I’ve started the exercises the physiotherapist gave me at the hospital
I would like to think I’m going to be back at work in another six weeks time. Fingers crossed!
I paid another visit to Derby Royal Hospital and I couldn’t complete this post without commenting on the fantastic service I received.
I left with a selection of ‘freebies’ – samples of various catheters for use away from home. Normally I love coming home with a goodie bag but today I’m not so sure… 🙂
I can’t believe that it’s been four weeks since I had my operation. In that time I’ve made regular visits to the hospital and have started to come to terms with the changes in my abilities.
What’s happened in four weeks?
- My wound has nearly healed – just a little scar is all I have left on my back now.
- I haven’t regained any of the sensation I lost in the back of my legs/feet etc.
- I’ve failed my TWOC again (Google it!) but now I’m a drain on my NHS by self catheterising (with approximately £250 worth of single use catheters a month!)
- I can hobble for short distances using the walking stick the hospital supplied
- I caught my first UTI!
- I’ve been signed off work until the middle of May on my latest hospital visit (I can’t drive yet or do lifting etc).
Compared to stories of many people who have experienced cauda equina syndrome I’m doing well. The pain is manageable with pain killers and posture, and I have plenty more visits to the hospital planned for them to monitor my progress… I’ve also found a great community on Facebook of CES sufferers that is a great source of strength.
Feel free to leave a comment if you have experience of cauda equina – I’d love to hear from you.
I’ve never been one to share my personal problems. Many of my twitter followers are unaware that I was signed off work for the first half-term of this year with chronic sciatica and back pain. I managed to keep involved with work despite being signed off sick, and I kept on top of my inbox and tasks I could remotely complete from home. I found it hard being at home when I didn’t feel ill, and I was able to control the pain by being horizontal or walking.
By the time my MRI results had come through I was feeling much better and I was diagnosed with a bulging disc in my spine at L5/S1. I was offered surgery but declined it because much of the pain had gone away. The disc was pliable and had recently moved, and I was given permission to return to work. I returned to work for three weeks, and although I wasn’t to sit for extended periods of time I soon settled back into my role. I believed I was getting better.
On Friday 8th March 2013 something changed. I got up as normal and had a shower, but as I got my breakfast ready a pain started to develop in the back of my legs. I’d experienced this before and thought that a dog walk might be my best course of action as gentle exercise had worked in the past. I started walking but the pain was so bad that at several stages of our walk I had to stop and get on my hands and knees to relieve the pain. As the pain intensified I realised that I wouldn’t be able to go to work that day and phoned in. The pain got worse over the day and even codeine failed to touch it. I spent the day on my hands and knees which was the position in which I experienced the least pain. A telephone appointment to the doctor proved fruitless as I was prescribed more of the same pain killers (the same ones that weren’t working). Evening came and I tried to sleep next to the bed curled over a bean bag, which wasn’t very comfortable. The pain didn’t subside but I was aware of the lack of sensation spreading from my legs to my feet and groin. At that point I knew to call for help and an ambulance was dispatched to take me to hospital.
I was taken to A&E at Derby hospital where I greedily gulped at the gas and air, and was given IV paracetamol for my pain (which is extremely effective). The doctors reviewed my last MRI on the computer and decided I needed another so after a wait for a few hours I was admitted to a ward. I had an MRI scan (my second of the year) and was dispatched back to wait on my ward for the results (still nill by mouth just in case). The results came back within the hour and I was to be prepared for theatre as soon as possible. My disc had moved and was pressing hard on my nerves causing cauda equine syndrome (CES), this is a rare condition and affects around 100 people annually in the UK. Speed is of the essence in treating CES to avoid permanent nerve damage. Blood was taken, consent forms signed and the anaesthetist put me out for a few hours. I woke up in recovery and spent the evening dozing in and out of consciousness. The next day I started to realise the gravity of my condition. My legs were tested and I had very little sensation in the backs of my legs and the soles of my feet (which makes walking a wobbly affair!) and my groin/saddle area were completely numb.
I spent several days more in hospital while I was tested, prodded, fed microwave food and observed. My pulse/blood pressure and temperature were checked every four hours and my fluid intake & output monitored carefully as well as any output from my bowels. I can’t fault the service I received at Derby hospital – the work ethic and compassion of the staff on my ward was humbling. Eventually I was discharged home with a number of follow-up appointments, after a total of 6 days in hospital.
So where am I now? The doctors won’t class any of my nerve damage as permanent until at least 12 months which means I could have a long recovery ahead. No one can say if my condition will improve, or by how much if it does. I have no feeling in my buttocks/saddle which has implications for toileting. I have no feeling in my groin (which means I have to use a catheter since I can’t make myself urinate) and the backs of my legs and bottom of my feet are still numb (cue comedy Charlie Chaplin walking). I hope that I will make at least a partial recovery but I am powerless to do anything but wait and see. I’ve still got a lot to be thankful for since I am still mobile (comedy walking is still better than no walking) and I’m not in pain at the moment.
What I’ve learned
- Out of hours service from my doctor is even worse than the daytime service they provide
- Derby nurses work long hours and do a fantastic job.
- My school has continued to run without me, and the world hasn’t stopped turning while I’ve been ill
- That sometimes we need to stop and rest to allow our bodies to heal
- Not to give up hope – I’m hoping that I don’t return to work with a disability but if I do I’m in the right kind of school.
This post was originally made on Fiendishlyclever.com
– I have cross-posted here so I can add follow up comments and posts since my other blog has a teaching focus.