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
It 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 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!
Having to use a catheter is a sensitive subject and not one that many people seem willing to talk about. This means that there isn’t a lot of user accounts of what it is like, nor of product reviews.
People have to catheterise for many different reasons – personally I’ve suffered nerve damage (it could be temporary or permanent) as a result of cauda equina syndrome. I was taught to self catheterise at Derby Royal Hospital by a set of wonderful nurses. I say taught but really there isn’t much to it – you just shove a tube whilst wiggling it about – there isn’t much skill involved!
I was given a number of different brands of catheter to try by my nurse specialist, but being the sort of person who leaves no stone unturned, I decided I wanted to try more. I contacted the manufacturers directly, and found out that they spend a lot of material on marketing. One company sent me a carry pouch and a diary, another sent me a drawstring bag – and all sent me at least 5 catheters to try (one sent a box of 15).
Different people want different things from a catheter. I’ve tried to comment on the things that are important to me – hopefully these are the things that are important to other catheter users as well. Of course male and female catheters are very different and so I can only speak from a male perspective when commenting on the different makes and types. What I want is:
- Easy to insert – this could be influenced by the design, the material the catheter is made of and the lubricant the catheter is covered in
- Ease of use – how easy to use are they in practice. Do you have bits and pieces scattered all over or is the product designed for convenience
- Portability – could you use the product away from home or in unfamiliar settings?
There are only so many ways you can change the design of a catheter – they are thin pieces of tubing with holes near one end and a small cone on the other. The packaging however is much easier to change – and they come in a range of shapes and sizes. Hopefully I’ve thought of everything that is important to me – but I’m happy for readers to get in touch if you think I’ve missed something out.
Name of product
Price on NHS tariff
Use of use
Use away from home
|£33.61 per box 25
|These pull apart from the top, and have a handy sticky pad to fasten to walls etc.
||The lubrication on LoFric catheters is excellent and I found this one of the most comfortable catheters to use.
Need a sink/water supply nearby.
|Very stiff which makes them difficult to carry and use away from home. Also have to put your own water in so you would need to be sure of clean water
|£44.89 per box 30
|Have a pouch of sterile water and a large hanging hook. Packaging can be torn apart in different places depending on how to be used. Didn’t find the adhesive area on back very useful/reliable.
||Once you tear open the packaging you have to put it down somewhere to use the catheter. Felt fiddly to use because of this. Excellent lubrication and easy to use (nearly on a par with the Lofric)
||These bend and fit in a pouch for carrying (and LoFric kindly gave me a pouch too). Having the water pouch inside made them portable – especially in areas where there might not be clean water.
|£49.80 per box 30
|Has an integrated pouch of sterile water (but you can’t see it through the packaging to see if you have burst it). Also has a good self adhesive pad, and peels open near the top.
||Very easy to use – thanks to the adhesive pad. Again has excellent lubrication and comfortable to use. The catheter holder is also very practical.
||Very flexible and can be coiled up – even has a slit in packaging to make sure it stays coiled. Has a holder for the catheter too so you don’t have to touch it with your fingers. Doesn’t require a source of clean water.
|£42.20 per box 30
|Has an integrated pouch of sterile water, a self-adhesive pad and peels open from top.
||The flexibility of the tubing is good but the lubricant isn’t as good as the LoFric, and much of it scrapes off on insertion. Also the cone at the end is too flexible meaning you can’t put your thumb over it for a mess-free removal – I found this out the hard way!
||Very flexible meaning you could roll it up and take it with you, no need for a water supply and also has a holder for the catheter so you don’t have to touch it with your fingers.
Coloplast – Speedicath
|£43.41 per box 30
|Comes ready lubricated – no pouches of water needed. Pouch peels open from top and there is a handy self adhesive tab
||I found these quite stiff and didn’t feel as comfortable to use as the LoFric – I felt this was down to the lubrication. Took a while to master – my least favourite of all the catheters I tried
||Packaging isn’t very flexible meaning a large bag would be required to carry them. Simply open and use though – handy for use away from home
Coloplast – Speedicath compact
|£51.99 per box 30
|Different to all the other catheters – comes in a rigid green plastic tube. No paper packaging at all – and comes pre-lubricated so no water pouch etc. No adhesive pads or hooks on packaging. The catheter itself is telescopic which allows it to fit in the discreet case.
||These come in one size which is narrow at the bottom and quite wide at the top. They are quite comfortable to use (on a par with the LoFric). You need to work out what you will do with the case while you use the catheter – could be a problem if you don’t have a free surface/pocket
||These are a masterpiece of design and have to be used to be appreciated. They are extremely portable and the catheter can be pushed back into the case and resealed for easy and discreet disposal – much better than other solutions. The design means you don’t need to touch the catheter either (no holder though). Possibly the best solution for people away from home or familiar settings for a long time
|£45.12 per box 30
|Long clear packaging that can be torn in a number of places. Worth also mentioning that this make had the poorest instructions – a multi-language leaflet with a diagrams and instructions on separate pages.
||I only tried a couple of these – I was given them by the hospital. They were comfortable to use but not on a par with LoFric. Again the packaging left a lot to be desired in the same way as the LoFric Primo
||The version I was given had a packet of sterile water included. They were fairly flexible but not as easy to roll/store as some of the others. The website says this product is no longer available due to patent issues
Teleflex – Liquick base
|£84.00 for a box of 60
|Similar packaging to LoFric standard but also has a loop for hanging – peels from top and self-adhesive pad on back. Also has a pouch of sterile water inside.
||Very comfortable to use – and would be my first choice if it wasn’t for the catheter holder which gets in the way once the catheter is fully inserted. It’s a shame that this spoils an otherwise excellent product.
||Not very flexible so not good for taking away from home. Does have the water included to activate the coating, and also the catheter holder means you don’t have to touch the catheter in use.
Teleflex – Liquick Plus
||Comes in a large packet with sterile water and a work surface cover. Also includes a urine collection bag
||After watching the YouTube video here I didn’t feel able to try this product – if I change my mind I’ll update this post
||Contains everything you will need but isn’t designed for portability – comes in a large packet. Does have a sterile cloth to put on a work surface. Disposal would be the most difficult of all the catheters I tried and isn’t intended for able/mobile users like myself.
It is also interesting to compare the websites of the different manufacturers, including any videos/downloadable content they have on their own site and on YouTube. LoFric and Coloplast have both invested the most time and publicity in their products, and this is reflected in the quality of the printed and downloadable materials.
Supplying the products is also big business – I use Wilkinson Healthcare who are independent, but many of the catheter makers have their own delivery companies, presumably to make sure they extract every bit of profit from the NHS that they can!
Six weeks have flown since my operation. I’ve had several return visits to the hospital and even a visit to my GP as well.
What’s happened since my last update?
- I still haven’t gained nerve sensation in my legs or bladder/bowel function
- My consultant seemed pleased with my progress. I don’t have to go back for six weeks then I’m in the spinal clinic instead.
- I’ve tried using a range of different intermittent catheters (and have the internet’s first catheter review scheduled to be published soon)
- I’m still walking with a stick and tire quickly. I walk at 1/2 to 2/3 of my old walking speed but daily exercise seems to be helping.
- I’m not as wobbly as I was weeks ago but I still fall over
- I’m still signed off work
- My wound has totally healed although it hurts if I sit up for too long
- I’ve started the exercises the physiotherapist gave me at the hospital
I would like to think I’m going to be back at work in another six weeks time. Fingers crossed!
I paid another visit to Derby Royal Hospital and I couldn’t complete this post without commenting on the fantastic service I received.
I left with a selection of ‘freebies’ – samples of various catheters for use away from home. Normally I love coming home with a goodie bag but today I’m not so sure… 🙂
I can’t believe that it’s been four weeks since I had my operation. In that time I’ve made regular visits to the hospital and have started to come to terms with the changes in my abilities.
What’s happened in four weeks?
- My wound has nearly healed – just a little scar is all I have left on my back now.
- I haven’t regained any of the sensation I lost in the back of my legs/feet etc.
- I’ve failed my TWOC again (Google it!) but now I’m a drain on my NHS by self catheterising (with approximately £250 worth of single use catheters a month!)
- I can hobble for short distances using the walking stick the hospital supplied
- I caught my first UTI!
- I’ve been signed off work until the middle of May on my latest hospital visit (I can’t drive yet or do lifting etc).
Compared to stories of many people who have experienced cauda equina syndrome I’m doing well. The pain is manageable with pain killers and posture, and I have plenty more visits to the hospital planned for them to monitor my progress… I’ve also found a great community on Facebook of CES sufferers that is a great source of strength.
Feel free to leave a comment if you have experience of cauda equina – I’d love to hear from you.