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.
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.
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.
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
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
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!