The actual chop!

I have decided not to talk about progress since the operation just yet. It is too soon to be able to categorically say much and I do want to tempt fate! However, I thought it might be useful to detail the time I spent in hospital, both before and after the operation.

On Friday the 6th February I went for a pre-op with the anaesthetist at Saint Antoine. Just the standard health checks ahead of any procedure, all very quick. I was also able to meet Pr Doursounian for the first time which proved to be very reassuring. Not only that, I met someone else from England at the same time who was also due to be operated on on the same day as me. This has proved to be really useful over the past weeks as I had never met someone with with coccyx pain - and hers was spookily similar to my history of pain. It also helped to have someone else to help negotiate the French hospital system with more easily!

So on Sunday afternoon I was admitted to the hospital. After some dinner, and before bedtime, I saw a  a cardboard  box on my bed...... a rectal enema - oh the joys! Suffice to say all pretty straight forward - and after laying on the bathroom floor in the foetal position for a few minutes, I sat my self on the toilet and all became clearer, quite literally. Enough said. The purpose was to reduce the infection risk and ensure that following the operation you are unlikely to need to go for a couple of days. 

The head nurse came and gave the lowdown on what would happen the next day. I then took the sedative they provided and tried to get some sleep, with the Paris night sky beaming in on me (my window blind did not function).

I was woken up at 5am to the call of 'douche, douche'. Once done I waited around for my departure and finally the porter came and wheeled me off. I was taken to pre-theatre where I was plugged up with a catheter for the drugs and told what was to come. I was first on the list!

Soon enough I was in the operating theatre with the very 'straight-forward' speaking head anaesthetist, who I had met at the pre-op on the Friday. Bit of chit chat, mask over the face, some deep breaths and the instruction to think of something nice and I was out for the count. This was probably about 8am.

The next thing I can recall is very drug induced so I cannot vouch for its integrity! One thing for sure though is that morphine was not as enjoyable as I had been led to believe! I recall waking up in recovery with my bandaged backside pretty much exposed to the world, groaning like a mad cow as the room span around me. Some cursing went on. I am not going to lie, it felt like I had been run over by an HGV. 

I must have been there a while as it was12.30 but the time I got taken back to my room and  I think the operation takes about 45 mins. I was still pretty out of it and by this time my gown had managed to fall off completely I think! Damn those French nurses. Next thing I knew my wife and mum had appeared and I had a bit of a hug and random chit chat with them before drifting off to sleep on and off for the rest of the afternoon. Pr Doursounian came round for a quick check and brought the offending bone he had removed with him (see below). I had a partial coccygectomy, so in the jar is the end part of my coccyx from the joint that was dislocating. The remaining part, which is fused to the sacrum, was trimmed to tidy it up.

By tea time I had become a hit more copus mentus and was able to go to the loo (the straight forward type). I was still pretty groggy but managed to get some food down me before going to bed. Not a great sleep, but it could have been worse.

I stayed in hospital until the next Sunday, so 7 days in total. I thought I was just in until the Friday, but both myself and the English lady were kept in another couple of days to be sure we were ok for the walk back to the nearby apartment where I stayed for another 9 days, travelling back to London on the train 15 days after the operation.

The remainder of the rest of the week in hospital were what they were. Lots of rest - no wifi or tv so mainly reading, eating or sleeping. Apart from the odd slow wander down the corridor I stayed in my room, and mainly in my bed. I had my temperature and pulse checked every 6 hours and asked for additional painkillers when needed - I declined the morphine and stuck to the paracetamols and pregabalin (which I was already taking, but they increased the dosage of for the week I was there).  The Professor came every day for a quick check and chat. He changed my bandage on day 3 when I was also able to have a quick shower. The dressing was also changed on day 6 before I left and the Professor came to my nearby apartment to remove the stitches on day 9, after which I could shower daily.

I was on prophylactic antibiotics and paracetamol drips for 48 hours and then just paracaetmol tablets every 6 hours thereafter.  Even by the time of leaving hospital on day 6 I was still very sore. I cannot believe people are often discharged the same day or next morning! I guess you do what you have to do. I went for my first proper toilet on Wednesday, two days after the operation - this was pretty nerve racking so a relief to have it pass in every sense!

I think that covers what happened. In the future I'll talk more about my experience following the operation.

The picture below is a French hospital breakfast with an English twist. Tea only comes in bowls!

Spreading the knowledge!

Over the last few weeks I have been contacted by a couple of people who have had very similar experiences to me. They have had the various injections and seen the same specialist chiropractor in London. It is starting to feel like more than coincidence as the English lady who was operated on in Paris the same day as me also had a very similar story. It has led me to believe there must be a lot of people out there suffering, going from one treatment to another - or even more depressingly, in silence.

This serves to reinforce my thoughts on some of the things I have blogged about. The lack of understanding from health professionals (particularly the NHS in these cases), the need for seated X-rays as a first step not a final one, injections often being nothing more than a sticking plaster on a chronic problem etc etc. I started this blog primarly to keep my brain active over a period of time when I knew I would get bored easily. It has proved to be more useful than that. It has actually been very cathartic writing some of this down, but even better than that, some people have read it and found it useful! 

Many many thanks to the people who have been in touch directly and to those who have commented on the postings. It is very much appreciated! If you have found my posts to be interesting or useful please do share it more widely and get in touch if you think that would be helpful. That also applies if I have written things that you either disagree with or that contradict your experience! I am very conscious this is just my experience and in no way should be applied to everyone. The more information we share and spread the better!!

Doing it My Way!

I know from reading other accounts that deciding whether to go ahead with surgery is something that people agonise over. Quite rightly too, as it is no small decision due it being a rare operation with a lengthy recovery period. For the first 2 years I was pretty adamant that I would try everything possible to avoid surgery. Obviously, it makes sense to exhaust all realistic conservative treatments first.

As it is such a rare operation, there is no shortage in GPs and even surgeons who will advise against it at all costs. However, I have come to find that this is largely in ignorance as they are simply not aware of, and/or experienced in, the more modern techniques of the procedure. There is a long history of coccygectomy having a bad rap - from high infection rates to poor outcomes. Back in the day it was even common for people to be labelled heysterical if they complained of prolonged pain here! These risks can be mitigated with an experienced surgeon.

As I have detailed previously I have had lots various types of treatment. If something was going to have fixed it, it would have by the time I made my decision. So once I saw the X-ray of the coccyx dislocating upon sitting, my mind was essentially made up. 

For me therefore the decision was not that hard to make. I am still relatively young (36) and with my life ahead of me - career, sport and exercise, possible family, holidays etc. Although I had become pretty good at managing it, it was not something that I was willing to contemplate doing forever. Once the final injection in November provided no relief, my mind was set. We went for a 2 week holiday to India which was a bit of a delayed honeymoon (Valium, whiskey and standing got me through the flights!) and during that time I decided there was no turning back, so to speak! The main thing that made it more clear cut for me was that Dr Maigne and Professor Dousounian will not operate if they do not consider you to be a 'good candidate'. My physio was also in favour of it once he saw the X-rays, which helped as surgery is definitely the last resort for them. The other key thing was that I had the backing of those closest to me - they trusted me to make the decision and have backed me all the way. 

Despite my mind being firmly set, I still had to adopt a new mindset. After all, for 2 years I had been against the surgery and for most of that time I believed that I could make progress through more conservative approaches. It took quite a bit of energy and single mindedeness to push ahead with it. However, as I have outlined above, it was the rational decision as I had ticked every other box. Even if the surgery turns out not to completely fix it, there was no other option left open to me. If you are in a similar situation, I would advise you to rationalise it as much as possible and get the opinion of those experts that you trust the most. That, along with your gut instinct should help you make the right choice for you. Fingers crossed!

Assert yourself and take control

As any fellow sufferer will probably know, but just in case, it is really important to assert yourself and take control of the situation. It is not necessarily the fault of the GP, physiotherapist, orthopeadic spine consultant or rhuemotologist etc that they do not know what is best to do. As we know, this is a pretty rare problem and there is lots of things going on that make a definitive answer hard to find.

However, once you have had a GP struggle to point to your coccyx, a rhuemotologist tell you it is normal, physios shrug their shoulders, an orthopeadic consultant tell you he does not want to get poo on his finger, it becomes increasingly clear that you have have to take some ownership and control of your situation. If someone cannot help you then be ruthless and move on. It is tiring but not as energy sapping as having someone clearly out of their depth take guesses. Easy to say with hindsight of course!

Through doing this, I found some great people who have not necessarily been able to cure it, but they certainly helped manage it and in doing so increased my understanding along the way. The great thing about having a rare problem is it sparks the interest of many health professionals. For example, I have had some great physio - the lady who did the dry needling and internal massage, a specialist physio who specialises in people who others cannot help (who has helped massively), and a mate who has been invaluable. However, in finding them I have also encountered at least half a dozen shoulder shruggers - ignore them and move on! I have had the same situation with chiropractors and orthopeadic surgeons - eventually you find someone who can help you, even if they cannot 'fix' you.

There is definitely a fine line between taking control such as this and bordering on being slightly obsessive about it! I think it can be done though - and to be honest, what is the alternative?! I feel like I have definitely taken the assertive proactive approach, but it has felt all consuming at times and almost to the point where it partly defines you. I have found exercising, working and socialising have helped keep me on the level though. Mindfulness has also helped me accept things and keep perspective on it all - rather than treat it like the evil enemy that I have to battle with. Through taking control you are winning the 'battle' even if there is no end in sight at that point in time.

How's your back?

If I had a pound for every time I have been asked this over the last couple of years I would have been able to pay for the treatment! If I had another pound for every time someone has gone into Doctor mode and suggested some form of alternative treatment (the most common is acupuncture!) then I would be retired now! As you will have seen in my previous posts, I have tried every reasonable type of treatment going. That is not to sound ungrateful for the concern or advice, far from it. As I have outlined previously, without the care and support of family, friends, colleagues etc I would have struggled far more.

Fielding the questions can be tiring sometimes though - and as time goes on and you are seeing no real resolution, probably a bit frustrating. Particularly with those closest to you as it seems to compound the guilt you already feel for the implications your pain can have on both your life and theirs. It creates an awkward dynamic where people do not know what to say, but do not want to ignore it so feel compelled to ask. From my perspective this has often left me me feeling like a parrot chanting the same frustrating mantra. 

The problem is while the majority of back pack pain (even slipped discs) tends to disappear of its own accord, in my experience a dislocating coccyx does not. It is dysfunctional so my sense is that unless you are just very lucky, it ain't going to do a DIY repair job on itself. As documented before, getting to this point of understanding is a process. For ages I was answering people's concerns in the belief that it was genuinely on the road to be being better. However, despite it improving at times, it was not going to resolve. As times passes, this makes you feel a bit of a fraud, and that you are letting people down somehow.

It can get in your head a bit and leave you in a position where you are doubting yourself or the process you are going through. This is of course why you need good people around you for support - the alternative would be far worse. To have dealt with this pain, various treatments and then coccygectomy on my own does not really bear thinking about. I could have done it (through necessity) but it would have been a lot harder.

I am not sure what my message is here other than it is better to have people asking the same question than dealing with it on your own - I am probably talking to myself as much as anything, but hopefully it is useful for others in a similar situation to reflect on too. It is a difficult one to manage, but better to be frustrated at people caring too much rather than too little.

Don't look back in anger

This song came on the radio this morning and it prompted me to write about what I would do differently with the benefit of hindsight and the increased understanding I have now. As you can see from my previous post, like many coccyx sufferers, I have had pretty much the full range of treatment, gradually going from the most conservative to the coccygectomy a few weeks ago.

To be honest I am not sure I would have done much differently. The obvious flaw in the way the NHS deals with this is that they want to give you drugs and tell you it will hopefully go away at some point soon. If someone has had pain for a a few months and treatment is not making progress then the dynamic sit/stand X-rays should be undertaken. See my other previous post on this. There is not much I can do about the NHS process though - unless of course someone influential ever reads this blog, which is unlikely! Perhaps it can help inform individuals in a similar boat to the one in which I have been stuck in though. This in turn may help to spread the knowledge over time perhaps.

Given the NHS  ignorance to the issues, I can kind of see how the approach they employ makes sense. Drugs - physio - more drugs - more physio - injections (various) - manipulation under anaesthetic etc etc. Very reluctant to operate even as a last resort! The problem is that the people administering this treatment are not really experts in what they are doing, they are usually making a semi educated guess - it is a rare problem after all.

While I do not have regrets as I followed the logical path of treatment - I was ignorant to coccyx pain at the start of all this afterall - there are probably two things that I would have done sooner than what I did. Firstly, I would go and see Michael Durtnall or another physio or chiropractor with proven expertise in managing coccyx pain sooner. I saw Michael at approaching a year of pain. Although it did not resolve the issue it was a big step towards making things clearer (see previous post). Secondly, I would probably not have persisted with any treatment if after 3 or 4 months it was not making a distinct and consistent improvement. 

The problem is, hindsight is very wise! You have to give each treatment a fair crack and it is very confusing to start having too many avenues open at once. As I imagine it is with a lot of chronic pain, I think the whole thing is a learning process, both mental and physical. While it frustrates me that this is poorly understood by medical professionals (in particular the NHS) I am not bitter about it as things could be far worse and some good things have come out of this process, as highlighted in previous entries. Whilst this pain is very compromising it is obviously not as widespread or dangerous as many health issues that people have to contend with. The most important thing is not to lose faith and focus your energy on moving forward - don't look back in anger, it's not worth it.

Managing the mind

As I have mentioned in other entries, this pain has coincided with a busy period in my life, new-ish job, getting married, buying a house etc. All very positive things, but combined with pain have perhaps not been the ideal combination at times.

One of the things I have found useful has been practicing 'mindfulness'. It is all the rage apparently and my natural cynicism made me wonder what on earth I as doing even contemplating it. Needs must and all that though -  and the benefits I had already got from the yoga convinced me it was worth a go.

I got a book that seemed to get the best reviews, 'Mindfulness for health: a practical guide to relieving pain, reducing stress and restoring wellbeing'. It was not able to quite do all of that, but it certainly has helped. It is an 8 week course whereby you do a series of different guided meditations everyday as you progress through the book. It clearly explains how pain works and how we can manage it more effectively in the way we react to it.

Key to this is accepting that there are different types of pain. Firstly, there is primary pain, which is the reason something hurts (ie. the coccyx dislocating upon sitting for instance). More importantly though there is secondary pain - which is how we effectively turn the volume up on the pain as we focus on trying to cure it and stop it from happening. All this serves to do is increase the pain we feel as we are unable to fix it. All we do is become more aware of it in the process! Another key volume amplifier can be stress from other things going on in life, as this in turn makes us less effective at accepting that this is just the way it is at the moment. Vicious circles are easily put in place despite our best efforts. 

There were times when I was reading bits of the text or doing the meditations and thinking 'yeah yeah, easy for you to say in theory', but the great thing about the book is that the authors have been there and dealt with chronic pain themselves and understand that people will feel cynical like this. They urge you just to do the 8 week course and see how you feel at the end. This is what I did and it has certainly helped me keep things in perspective and realise that the pain is not actually all encompassing. It is just one factor in my life - alongside many other far happier factors! I continue to use the meditations and habit relaeasers from time to time and they have been useful during this post operation period where the pain has been pretty full on! Through improving your ability to be able to focus purely on the moment that you are presently in does bring relaxation and some level of peace to a busy day. Anyway, that is enough from me on this as conscious that I sound like I have been converted to a cult! Give it a go though, it really can help.

Book: 'Mindfulness for health: a practical guide to relieving pain, reducing stress and restoring wellbeing' by Vidyamala Burch and Danny Penman.