Cauda equina syndrome – six month update

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.