12 months since Cauda equina syndrome – an update

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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.