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