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!
A while ago I set up a special email domain for using to track down who was leaking my email address to spammers. From that point on every potentially dodgy website I sign up to has a unique email address that is only used on that site and nowhere else. That means that I can check my spam email box and see who is leaking my email address. Groupon – you are not the first company to email me and tell me that you’ve leaked my email address, but you are the first to leak my email address to a spammer (and I don’t recall them owning up to it but I could be wrong).
If you have ever signed up to a Groupon deal you know where some of your spam has come from (besides the rubbish they send you every day)
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 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.
I’ve never been one to share my personal problems. Many of my twitter followers are unaware that I was signed off work for the first half-term of this year with chronic sciatica and back pain. I managed to keep involved with work despite being signed off sick, and I kept on top of my inbox and tasks I could remotely complete from home. I found it hard being at home when I didn’t feel ill, and I was able to control the pain by being horizontal or walking.
By the time my MRI results had come through I was feeling much better and I was diagnosed with a bulging disc in my spine at L5/S1. I was offered surgery but declined it because much of the pain had gone away. The disc was pliable and had recently moved, and I was given permission to return to work. I returned to work for three weeks, and although I wasn’t to sit for extended periods of time I soon settled back into my role. I believed I was getting better.
On Friday 8th March 2013 something changed. I got up as normal and had a shower, but as I got my breakfast ready a pain started to develop in the back of my legs. I’d experienced this before and thought that a dog walk might be my best course of action as gentle exercise had worked in the past. I started walking but the pain was so bad that at several stages of our walk I had to stop and get on my hands and knees to relieve the pain. As the pain intensified I realised that I wouldn’t be able to go to work that day and phoned in. The pain got worse over the day and even codeine failed to touch it. I spent the day on my hands and knees which was the position in which I experienced the least pain. A telephone appointment to the doctor proved fruitless as I was prescribed more of the same pain killers (the same ones that weren’t working). Evening came and I tried to sleep next to the bed curled over a bean bag, which wasn’t very comfortable. The pain didn’t subside but I was aware of the lack of sensation spreading from my legs to my feet and groin. At that point I knew to call for help and an ambulance was dispatched to take me to hospital.
I was taken to A&E at Derby hospital where I greedily gulped at the gas and air, and was given IV paracetamol for my pain (which is extremely effective). The doctors reviewed my last MRI on the computer and decided I needed another so after a wait for a few hours I was admitted to a ward. I had an MRI scan (my second of the year) and was dispatched back to wait on my ward for the results (still nill by mouth just in case). The results came back within the hour and I was to be prepared for theatre as soon as possible. My disc had moved and was pressing hard on my nerves causing cauda equine syndrome (CES), this is a rare condition and affects around 100 people annually in the UK. Speed is of the essence in treating CES to avoid permanent nerve damage. Blood was taken, consent forms signed and the anaesthetist put me out for a few hours. I woke up in recovery and spent the evening dozing in and out of consciousness. The next day I started to realise the gravity of my condition. My legs were tested and I had very little sensation in the backs of my legs and the soles of my feet (which makes walking a wobbly affair!) and my groin/saddle area were completely numb.
I spent several days more in hospital while I was tested, prodded, fed microwave food and observed. My pulse/blood pressure and temperature were checked every four hours and my fluid intake & output monitored carefully as well as any output from my bowels. I can’t fault the service I received at Derby hospital – the work ethic and compassion of the staff on my ward was humbling. Eventually I was discharged home with a number of follow-up appointments, after a total of 6 days in hospital.
So where am I now? The doctors won’t class any of my nerve damage as permanent until at least 12 months which means I could have a long recovery ahead. No one can say if my condition will improve, or by how much if it does. I have no feeling in my buttocks/saddle which has implications for toileting. I have no feeling in my groin (which means I have to use a catheter since I can’t make myself urinate) and the backs of my legs and bottom of my feet are still numb (cue comedy Charlie Chaplin walking). I hope that I will make at least a partial recovery but I am powerless to do anything but wait and see. I’ve still got a lot to be thankful for since I am still mobile (comedy walking is still better than no walking) and I’m not in pain at the moment.
What I’ve learned
- Out of hours service from my doctor is even worse than the daytime service they provide
- Derby nurses work long hours and do a fantastic job.
- My school has continued to run without me, and the world hasn’t stopped turning while I’ve been ill
- That sometimes we need to stop and rest to allow our bodies to heal
- Not to give up hope – I’m hoping that I don’t return to work with a disability but if I do I’m in the right kind of school.
Ever wondered where spammers get your email address from? This is how you can find out – it only works when you start with a new domain or new googlemail account.
If you have a custom domain you registered e.g. fiendishlyclever.com you own all the email addresses at that domain. If you set all the emails to forward to your current email address you will get all the email that comes to every address. Then all you need to do is when you sign up for a site, you include the site name in the email address you give for that site. For example if you were shopping on Amazon, you would give your email address as firstname.lastname@example.org where you swap domainname.com for your own. When you start getting spam email you can see where they have come from.
This is very similar but uses Googlemail (Gmail). Google mail has a set of features only recently documented. Because of the way Google parses the email addresses, you can change your email address in 2 different ways and still receive your email. Googlemail takes no notice of where the dots are before the @ sign so you can change these when you give out your email address – although this is not as useful as the next feature. You can also add a plus sign (+) and extra characters after your username and before the @ sign. This has been confirmed to work with regular googlemail and googlemail for domains. This can be used now in the same way as method 1. When you sign up for a new site, add +sitename before the @ sign. For example email@example.com if you were shopping at Amazon. You could also do this when you give out your email address to friends. When you start to get spam email – have a look and see who sold you out! I’ve started using this method so it will be interesting to see if the email addresses of my incoming spam change!