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.