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.

Cauda equina–3.5 months after surgery–an update

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

Cauda equina–12 weeks since surgery

IMG_0388It 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 Sad smile  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!