Tick tock!

I have not blogged in a while! This has been largely because life has been really busy working full time essentially now and continuing to try and be as active as possible in the other time, whilst also ensuring I get a sensible amount of rest time. This week I have passed the 9 month mark and I have to admit the last few months have possibly been the hardest despite things continuing to move in the right direction. I guess that is because as time passes, expectations subconsciously increase as does the frustration at realising that it will still take some time. It is also harder to notice the improvements, which can be a good thing too. As we approach the end of the year it really does feel like this process has been going on all year now (plus the few years before the op of course!)

Quick summary of how things have progressed... I can now generally sit for an hour or so before I feel the need to get up, and over a day I have been sitting for about 3 hours a day with the occasional non-sitting day to give things a reprieve. Having said that, this week I have found out that it is still quite easy to do too much and get some aggravation. At least I hope that is what it is!! I assume it is the internal scar tissue that is saying it has had enough, and I hope this will reduce over time so that I can continue to sit more and more. It is pretty disconcerting even at this stage though as the pain is into the same area as it was pre-surgery. And because the body is so good at forgetting what that pain was actually like (usually an advantage) it is easy to get nagging doubts in your mind. In terms of activities I am still swimming twice a week, doing yoga, occasional light gym work and walking as much as possible. I feel in pretty decent shape actually and am so glad that I started all of that as soon as I could. 

On the downside... My glutes, lower back and deep pelvic muscles have developed quite a few trigger points that are proving hard to get rid of. The physio thinks this is most likely the result of the prolonged standing I have been doing over 6 plus months back at work, causing fatigue in the muscles and accentuating any imbalance. This means that jogging and ball sports are still out of the question as I think the impact would kick things off. Probably related to this is my earlier point about it being a long year/process - I am pretty tired and definitely feeling a little bit impatient for the first time. We went to Spain for a week a few weeks back which was great but it has not taken long to feel fairly exhausted again!

So despite the bigger picture of continued progress it has actually been quite a frustrating time. Getting the balance right between sitting and standing and rest and exercise is a tricky one - made even more tricky with a computer based job. However, I hope that over time and ignoring the odd blip I continue to be able to sit more and more and the problems caused by the standing will just ebb away. Once this happens I hope that it will have quite a significant change as the way we relax is to sit down and rest and forget about some of the everyday stresses that come up. Doing that lay on your sides with sore hips, glutes, legs and feet is not really that relaxing!! I will blog again when there is more to report, ideally with that apt title I have in mind. In the meantime, onwards and upwards - and ideally sat down!

6 months in!

Today I am exactly 6 months post-op. To mark the milestone I have just been to my first group yoga class and am sitting down to write this blog post! Good positive ways to mark the occasion. Things have continued to progress steadily over the last month or so and I am now sitting for up to 30 mins at a time, a couple of times a day. I have been able to sit and work for the first time as well as eat a meal out and enjoy a normal paced pint on a bar stool! 

All in all pretty positive it seems, but I would be lying I if I did not admit to it being quite a frustrating period at times. The closer you get to 'normality' the more you want it. You also become more aware that if it does not transpire just how disappointed you would be. Although things are starting to feel more normal there is likely still quite a long way to go, and clearly no guarantees. Those moments you have where you can almost feel things becoming normal are amazing though! I am just trying to hold that thought (well, enjoy it for a second) and then just keep going quietly, letting time continue to pass and not letting my thoughts run away with me. 

The yoga class seemed to go well, but I guess I will know more tomorrow! I had previously had 4 one-to-one class with the teacher so I was pretty confident it would be ok. She is very aware of things I can and cannot do just yet, and kindly did a class where there were no seated asanas. I really think the walking, stretching, yoga and swimming have helped these last 3 months and I am really grateful I have been in a position to do them, as well as having the perseverance to keep going with them. The swimming and yoga I am pretty much addicted to and it certainly helps to keep your mood and perspective on the level as well as the obvious physical benefits it brings.

I am pretty exhausted though if I am honest. Approaching 4 months back at work, all stood up has taken its toll. Definitely glad I have done but it has not been easy. Thank goodness work have been good about me working from home - although I am now going into the office twice a week. If things continue to improve I feel I am close to a tipping point where things become less tiring. Once I can sit for 30 mins 4 times in a working day I think things will be far more manageable and I will be able to do full work days hopefully. At the moment I am doing about 5.5 to 6 hours a day, although this takes all day by the time you have had a breather or two. Any more is not sustainable when stood up!!

6 months feels like it has gone quickly and slowly in different ways. It certainly feels like a long time since being in Paris and lay on the sofa watching the Wire box set! We are even into a new football season now! On that note I intend to go and enjoy some sunshine before settling down to watch some of the football. Hopefully the next post will continue to report positive news - if that is the case, I have an apt title in mind.

Such a long journey

So, I have taken this week off work as annual leave. I have not done much, other than head back to my parents place and just have a change of scene and relax. It is purely a tactical breather as after 10 weeks of standing at the computer to work, a week off is much needed as my feet, legs and lumbar spine are exhausted!! I have treated myself to a lazy spa day where I dipped in and out of a hydrotherapy pool and sauna. It has also had some added bonuses - I got to hang out with my brother in law one afternoon and I got to meet up with some old school friends who I have not seen in ages, partly due to my restricted car travel over the last few years. The great weather has been a perfect time to walk through the hills and fields that I am still so familiar with. It has also enabled me to reflect on how the recovery is going on as I approach 5 months, as well as the last 2.5 plus years since the pain began.

As I am sure it is with all chronic pain, it really can be all encompassing at times and I really hope that I am nearing the day when this is something that I look back on rather than it still being my reality. I am now at the stage where I can sit pretty comfortably to have my dinner, listen to the radio for a bit or even have a pint in a beer garden (if gulped!). It is a funny time as you begin to get glimpses of what life was like before and what it can hopefully be again! It almost feels like the nearer that becomes to reality the more agonising the blow would be if it does not quite work out. That is why I have continued to slowly build up the sitting rather than rush things too much. I had my first little setback a few weeks ago when I must have overdone something and for a few days I was not a happy chap, whereas on the whole I have been so much happier post op than I was before it. It was a useful reminder to just keep plugging away and let time pass by until I reach the situation where things have improved to the extent that things are 'back to normal'.

I am reading this book at the moment and the title seemed apt!

I have now done three one-to-one yoga classes, gradually building it up with each one as well as doing some stretches most days in between. Carefully stretching the pelvic and lower back area seems to help. I am also swimming about 500m twice a week and can pretty much walk where I want now within reason. I would not fancy going for a jog just yet - that can wait for now!

I have also begun to get a little impatient for the first time since the op. It is now starting to feel like a long time and I am also conscious that it could be a good while yet before 'back to normal' exists. There is of course the scenario whereby 'back to normal' never quite comes, but I am doing everything right to give myself every chance. As I have said before it is just a case of doing what you gotta do. It is a long journey, and you learn a lot along the way, but hopefully this is a ride that will end soon and I can sit down and look to the future.

The things you learn

Whilst living with coccyx pain and recovering from the surgery, you do not just learn about various parts of the body affected, you also learn a lot about yourself and those closest to you. This can be a positive thing and I think it is important to ensure that it is - it is almost like an added value or by-product of dealing with chronic pain! 

I feel it has made me a more tolerant and patient person, not things that I would necessarily naturally associate with myself (although others seem to for some reason!). It is impossible to fight everything all the time, so learning acceptance and just letting some things be are important qualities to have in order to be able to prioritise the more important things that you do have to contend with. It brings a nice perspective to day to day nonsense that is for sure, although at times I find it has made me militant about dismissing what I see as trivial but is actually more importsnt to others. I am not going to go into detail here but it really does take you on a bit of a journey where it forces you to look at yourself and recognise how you do (or do not) deal with things, how you react to situations, how you manage various relationships - at the heart of all of this is what is really important to you.

It also is a time when you learn a lot about your family and friends and the different qualities they have. For instance, some people are predictably loyal and solid as a rock when it comes to anything you need, other people while less proactive have other strengths and perhaps the ability to just listen or know when to say the right thing or offer good advice. Others, it had to be said, tend to disappear a bit or pretend that everything is just normal - even this has its advantages at times as it is tiring repeating yourself all of the time!

The cliche about learning more in times of adversity is certainly true, and I think it is important to realise that from every experience your learn an awful lot. Most importantly it makes you appreciate the good things you do have. Even standing on top of the Malvern Hills (see pic) cannot bring that sense of perspective! 

Into the groove

So it has now been 5 weeks back at work! It is tough going but glad I am doing it. I am still not sitting to work and am predominantly working from home to save the hour commute each way. It has been a phased return and since the first 2 weeks I have been working 4.5 hours a day, all stood up. This essentially takes all day as by the time you have had a couple of breaks to lay down and have lunch etc it is soon late afternoon. Until I can sit for 30 mins or so it will be hard to work more I think. 

Work have been great and it has been nice being back into what feels more like a normal routine. However, after 2 months of rest and recuperation I have had to be careful managing day to day stuff that is now less on my terms than the previous weeks. The cumulative effect of standing every day has caused quite a bit tighntness into my lumbar spine so I have been trying to regularly move. I have continued to swim once a week and now am able to do some basic yoga to keep my spine moving as well as stretch out the scar tissue at the operation site. I have probably been walking less as I have not had the time and am stood most of the day so tend to collapse on the sofa when I get the chance!!

As for the sitting I have continued to improve slowly. The pain/discomfort ebbs and flows and can be hard to predict what causes it etc, so I am just using my common sense and accepting that sometimes it increases without an obvious cause. At this stage I think it is important that I keep moving (within reason). The Professor had told to simply slowly return to normal life - do exercises that do not lead to pain and sit if it does not cause pain. He stressed that it is important not to stimulate the pain so if anything does, either sitting or exercise, then stop it. Therefore I tend to do give myself a breather from any exercise or sitting for a few days at a time and then go again. It seems to work ok, but it really is a game of patience. I have achieved some important milestones though - eating my dinner sat down, taken a short car ride sat in the back (on my coccyx cushion) as well as a record 16 lengths in the pool.

This weekend is a bank holiday in the UK so I took the Friday off in order to have 4 days in a row where I am not stood at a computer for prolonged periods. I have come back to the countryside where I grew up - I think the fresh air and space do me the world of good! It is also nice to have a change of scene as I have spent a long time in our little flat over the last months and my poor wife deserves a break from me too!! Tomorrow I am taking the train back to London which is slightly daunting as it is a 2.5 hour journey so it better not have delays!! I will write more soon 😊.

Back to work!

Still no speculating on the success of the operation as it is still too early to say, but I thought it would be useful to talk about my first two weeks back at work. I went back exactly 10 weeks since the operation, on a phased return. My employer has been very flexible and the idea was that I would start on just 2.5 hours a day from home and work it up as it becomes more possible. I have found that I have been able to do a little more than this without it having a detrimental effect on progress. I have done between 3 and 4.5 hours a day and hope that I can increase this a little over the coming weeks. Increasing it will be hard as I am still not sitting down for any prolonged period (just 4 or 5 mins two times a day) so all of my work is done standing up. My sense is the sitting will come in time and I should not push it too much. It certainly causes some discomfort in the pelvic floor as well as a soreness into the scar area.

It has been really good to be back doing some work and interacting with people, albeit remotely for now. Even if I cannot increase my hours over the next week or two I hope to go into the office a little more - to normalise things and increase my ability to move more etc. Key to being able to go back to work a bit ahead of schedule has been been being able to do it from home. I also think I have benefited as a result of doing a good job of resting as much as possible in the immediate weeks after the operation, before then gradually increasing the walking and mobility from about week 4 or 5. The yoga and swimming that I was doing a lot of before the op meant that my fitness, strength and flexibility were pretty good and therefore I did not lose too much in the weeks that I was bed and sofa bound. I know from other people's experiences that this can be a real vicious circle so I am grateful for the the work I put in beforehand. 

I went swimming last week! Very cautiously, just 10 slow lengths. It seemed fine and was so nice to be in the water and do something normal again. I tried not to kick my legs too much and let my arms do the work (front crawl). As my flexibility has started to return I have also been doing some very gentle stretches that I learned from yoga. A physio mate of mine impressed on me the need to very gently begin to stretch that area in order to ease out the scar tissue that will be building up. The increased body awareness gained from doing yoga means I am quite confident in knowing what I can and cannot do. It is definitely trail and error though! I have also continued with the mindfulness meditations on a daily basis, particularly since starting back at work when the need for a quiet few minutes has increased a touch!! As mentioned before I have found these very helpful - the body will do what it does and I have little control over that, but I can to an extent control how I feel about it all, and remaining positive is definitely a good thing! I will update this again in a few weeks with how things continue to progress. 

The Tailbone Doctor blog

I want to draw your attention to the new blog of Dr Patrick Foye, aka the Tailbone Doctor - http://tailbonedoctor.com/blog/. As many people will know Dr Foye is an expert in coccyx pain and treatment, based in the States. He also has a book coming out in a few months which will likely be a very welcome addition for patients to educate both themselves and perhaps more importantly their GP, physio and orthopaedic spine consultant!!

Clearly nothing replaces an actual physical examination and X-rays etc but the advice and knowledge shared through these means can enable and empower people to make the right decisions in the first places rather than go round in circles searching for a solution.

Happy reading!!

The long and winding road

As most people reading this will likely know, recovery from a coccygectomy is a long one! As Professor Doursounian says, 'not a particularly complicated operation, but a long recovery'. 

In previous blogs I have detailed my first two weeks or so recovering in Paris, so here I will talk about the subsequent 6.5 weeks I have had back at home. It seems timely to do so as I am due to start back at work on Monday as part of a phased return. I am not going to talk or speculate about the potential success of my operation here - that can be for another day when I can hopefully be more conclusive - but I will highlight how I have kept my sanity (I think!) and what I have and have not been able to do during this period. 

Weeks 2 to 4 were pretty similar to Paris with only a very slow improvement (at least noticeable to me). I went outside for some fresh air but walking was pretty limited to the streets near to where I live, maybe walking up to 500 metres at a time by the end of the period. Lots of lying on my side either in bed or on the sofa. I read quite a bit and listened to the radio as well as write the occasional blog. One of the books I have been reading is the Chimp Paradox by Pr Steve Peters. I have never been a fan of these kind of self help type books before, but I have found this very useful and brilliantly written. It tells you how it is and keeps you focused on how easy it can be to remain positive, happy and in control by controlling your inner chimp - all key things for me over this period.

I also began watching the Wire boxset which proved to be really useful! I am not a big TV or film watcher ordinarily so this proved to be a sanity saver. Over the 5 seasons there are about 60 episodes, each an hour long. This really helped in being disciplined with the rest, but also with changing position and moving a bit. I got addicted and ended up watching all of them within 3 or 4 weeks.

I noticed near the start of week 5 that my movement had started too improve and I was able to start going on longer walks, perhaps up to a mile a day outside, usually across 2 separate walks. I began doing some very basic stretches just to try and keep a bit of movement in my back. In week 6 I took my first trip on public transport since the mission back from Paris. Just 5 mins down to Richmond but it felt good to see something slightly different and leave my postcode!! I also watched a half of rugby in the local pub with a friend and had a pint. The dizzy heights!!

By the end of week 7 there was definitely less constant discomfort and pain into the scar and operation area, although a fair bit of discomfort into surrounding areas as a result of having nearly 2 months without exercise and only in certain positions. I began sitting at this time - just for minute at a time. This is quite an emotional moment when you first do it!!! It is obviously impossible to tell whether there is a massive difference as the area is still very sore from the operation and the muscles have not been stretched in this way for some time. Great that I did not jump off the chair though!!

At the start of week 8 we went away to a cottage with a couple of friends. They work in education so like my wife were also off work. This took me out of my comfort zone a bit, but after laying in the back of the car for a few hours to get there, was definitely worth it for a change of scene and fresh company. We live in a one bedroom flat so things have definitely been a bit tense occasionally, so to be somewhere neutral and bigger helped. We stayed on a farm in the middle of nowhere so really felt away from everything. I did not really leave the cottage much other than for my daily constitutionals! The sitting that I was slowly increasing meant that I was getting some increased discomfort into the scar area and pelvic floor but I expected this so have tried to roll with it as much as possible.

Last week (week 9) I noticed another small improvement in my mobility and by the end of the week was walking up to 3 miles a day and sitting for 3 minutes 3 times a day. I live near the river which has been great as it provides some nice views for a walk and a bit of perspective! I have had an increase in pelvic floor discomfort during this time but I am hoping this is just a result of the increased sitting and walking. I am hoping that things continue positively over the coming days so that I can go back to work in a confident and postitive frame of mind. The great spring weather has certainly helped!!

I am starting by working 2.5 hours a day, most likely from home, and all being well will then aim to ramp this up over the coming weeks to get back to full time. It is very much suck it and see, but so long as I keep doing the right things I am optimistic all will be well. I am really keen to get back to work, visit friends (rather than them come to me) and eventually start exercising again, but I am even keener to do this in the right way and give it every chance. It really is a case of ticking each day and week off and seeing what happens as things progress along the long and winding road.

Resting up

As I mentioned, after staying in hospital for a week I then stayed in a nearby apartment (glorified hotel room!) for another 9 days before taking the Eurostar back to London.

The walk from the hospital to the apartment was slow but I managed reasonably well. Once there, I did not really leave many times, and just continued to rest up. Apart from the odd bit of fresh air outside, I read some decent books, listened to the radio (thank goodness for BBC Radio 6 Music!), started writing these blog posts, ate and slept!

The constant side lying was not very comfortable but I was determined not to start doing too much too soon. We setup a table upon a table for me to eat off and use the iPad. On day 9 (post-op) the surgeon came to take the stitches out and check on the wound and how I was doing. He then came back on day 11 for a final check that all was ok - thankfully everything was.

Aside from the pain, I think the time was harder for my wife than it was for me. I am not usually one for laying around 'doing nothing' but it was almost as if something took over and instructed me to just rest, so I did! There was the odd moment of doubt and frustration though of course.

The journey back was a bit of mission! We took a cab from the hotel to the train station which took about 20 mins. Once there, Ranjit was able to somehow smooth talk us on to a business class upgrade which meant 2 seats each (I could kind of curl up and lie down) and a three course lunch with a beer! I am not sure how I would have coped if I had had stand the entire way as this really made lower back ache like mad in the first 4 weeks (and still does for after prolonged periods). Once at St Pancras we made our way to the underground - which is miles! The tube ride was not too bad, but the walk back to the flat the other end was another mission. It had to be done though and all in all it could have been far worse.

I am glad the Professor insisted on my staying in the apartment for that length of time. Whilst it did feel like a long time away from normality and home, on the plus side it was also useful to compartmentalise that initial first 2 weeks by being somewhere different and neutral. It was all quite surreal and I think that actually made it easier to just go with the flow.

As I am sure I will detail in due course this was really just the beginning of the long road to recovery, and hopefully a return to being able to sit down!

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.

Get up, Stand up!

Having an understanding and supportive employer has been really important to me in managing my coccyx pain so far. I have been open with them from the start and in return they have been as accommodating as possible. 

As mentioned previously, from early on I was conscious that it would it would be less than ideal to be signed off work with this pain. Despite having a sedentary job (not ideal for coccyx sufferers) I did not want to be lay at home getting stressed and depressed and unfit. I am not a fan of self pity, but this is not to make myself sound like some kind of hero! There have been times when I have struggled, but I knew that there are clear and obvious benefits to maintaining business as usual. The satisfaction of getting things done and the day to day interaction with colleagues has been important in that respect and it also takes the pressure off relationships at home and with family and close friends.

I am trying to continue my theme of working in song lyrics to my posts! 

This was made more possible by having an employer that was supportive and colleagues who I get on with. My employer took a number of practical steps that made it easier for me to continue working. Initially they provided me with an office chair that has the coccyx area cut out so that there was less pressure loaded when I sat (see picture below). This made a big difference - I still get pain into my surrounding tissues near to the sit bones but without this I would have exacerbated the problem and would not have been able to continue working.

A year or so later when it was clear that the coccyx pain was not going away, they also provided me with a standing desk. This has also been invaluable as changing position regularly seems to be a general rule to dealing with coccyx pain - especially if it means standing up! A number of my colleagues have been quite envious of it as standing up definitely energises you and quite literally provides you with a different perspective. We simply were not designed to sit all day at computers! I could not recommend it highly enough. The one I got is relatively inexpensive as it is a clamp like structure that fixes to the front of a regular desk with its own keyboard and mouse shelf and a handle that enables you to move it up and down between seated and standing positions. I do not have a picture but it is from a company called Just Stand and they have a range of products - this is the one I have http://www.ergotron.com/ProductsDetails/tabid/65/PRDID/560/language/en-GB/Default.aspx

I have been lucky and had a great employer. I understand that not everyone necessarily does, but it may simply be a case of educating them to the benefits that such things will bring. I would guess that both my chair and stand cost less than £1000 or so between them, which seems good value for money to me and far less costly than having someone off work for large periods of time. If you think this would be useful to you, get up and stand up (for your rights)!

The importance of NOT being idle

Continuing to be able to exercise has been vital for me. I am not the type to be able to veg out for hours and do nothing, it simply does not relax me! For several months after this pain started I was told by physios to just rest and heat it. This went on too long for my liking and clearly was not helping so gradually I began doing exercise on the advice of others as well as my gut instinct and lack of patience. It was trial and error as to what I could get away with and I often triggered increased discomfort but this was a small price to pay for keeping fit and staying sane - at least the pain did not have control of me!

I have not been able to continue to playing football, squash or anything with any impact. However, I can get away with walking (which I have always enjoyed) and I have taken up yoga and swimming in almost religious fashion, both things I had never really done before, nor had much inclination to do. My local leisure centre that I used to just use for the gym has yoga classes that are included in my membership (as is the swimming) so it has been a real bonus. The yoga teacher is excellent and I have really enjoyed improving my flexibility and strength and having the routine of going to classes. I have got to the point where I would say I was quite experienced at it now. The biggest benefits have been the relaxation and calm that it has brought to a hectic time as well as the increased overall body awareness it gradually provides. All of this is really beneficial to dealing with chronic pain. The swimming has been great with the focus on breath and increased strength it brings - whilst in the water it is like nothing can disturb you!

Clearly, everyone is different and what works for one person may not work for the next. Yoga has helped me but it might be gardening or dancing for someone else. My general point though is that by working your body in a way that you can has significant benefits - it maintains your overall health, it has the possibility of reducing your pain (although for me was never going to actually fix it), it provides a sense of purpose and routine, and it opens up the possibility of trying something new. Perhaps most importantly, it gives you a sense of control over the pain and keeps you sane when other treatments may not be working out in the way you hoped. It is funny the things you end up doing that you did not anticipate - I never thought I would be writing a blog for one!! Embrace it.

Oh sit down!!

As I detailed in my previous posting on the treatments I have had, it took me 2 years before I had a seated X Ray. The first image below is not the seated one (it is the one from where Dr Maigne did the guided injection). However, the seated one (the second on, also done in Paris), clearly shows the dislocation between C1 and C2 (i.e. between the last vertical segment and the horizontal segment).

  

It baffles me why the NHS is so reluctant to give even a standing X-ray, let alone a seated one, when someone has unexplained pain for more than 8 weeks or so and is not responding to physio etc. I know it is because of their guidelines regarding radiation to parts of the pelvis, but I think most people would take that very minor downside if it were to help them get some kind of diagnosis on their pain!!! If more GPs (as referall points) and other health professionals were educated on this, my sense is that a lot of people would shortcut their pain duration and be able to seek more appropriate treatment sooner rather than later - through getting dynamic standing/sitting X-rays. This would save the NHS lots of money in MRI scans, physio sessions, GP follow ups, and of course, everyone's favourite, more drugs.

Having had, at least in part, some of my strange coccyx explained following a standing X-ray by chiropractor and coccyx expert, Michael Durtnall, I know the benefits of finally having someone that knows what they are looking at, actually explaining an image that shows the coccyx is clearly not 'normal'. At the time this was a major breakthrough. Indeed, Michael's knowledge and advice were invaluable to me. However, even he does not do seated X-rays, not as protocol, but also seemingly not at all. I find this a little strange, particularly when dealing with cases such as mine that had not really responded to lots of treatment - probably something like 50 plus separate manipulation on me. To explain further, his opinion on mine was that both the sacroccygeal joint and the next one down (C1:C2) were like concrete. The aim was to get the sacroccygeal joint mobilised so that it could flex forward rather than being in the slightly extended and fixed position. This in his opinion would make the C1:C2 joint largely irrelevant as the 90 degree angle as seen above would be less and less pressure on the joint. All very logical in theory but after a year of bashing we were not really making any progress and insitinctively I knew this was heading nowhere and wasting lots of money and yet time. What he got wrong was that upon sitting C1:C2 was actually hypermobile not like concrete as he suggested and it was completely dislocating upon sitting - as seen in the X-ray if you look carefully. Yes, it may have been like concrete in being moved one way (down and back) but it floated up very willingly when I sat. And the sacroccygeal joint that slightly extends backwards is ossified so unfortunately was never going to move forward in the first place despite all the bashing.

This is not meant to be overly critical of his approach as without him I may not have found my way to Dr Maigne, and I am sure based on his experience this works in the majority of cases (his testimonials are evidence of this). However, it did not work for me and a seated X-ray right at the start may have given a heads up on this before going to see Dr Maigne a year or so later. Michael was completely supportive of the decision to proceed with surgery and offered me invaluable guidance on what to speak to Dr Maigne and Pr Doursouninan about prior to the surgery. I must add he still thought he could fix it though! However, I knew he couldn't. 

The bigger point is that the NHS or equivalent in other countries should be providing this as a standard protocol. As a result of them not, I was a couple of years further down the line and no better off (and significantly worse off financially!). I would like to think that my case, and numerous others like mine that I am aware of, should provide strong evidence to change the protocol, but I do not think it will. The lady who Professor Doursounian operated on on the same day as me would also have benefitted for starters! And I have read many similar stories of woe on coccyx.org.  If I knew what I know now that is the only thing I would change about the process I have gone through - where I have taken the advice and done everything everyone has suggested every step of the way. Hindsight is a great thing so hopefully some people will benefit from having read this. Clearly every case is different and it is a case of finding what works for you, but surely the first step should be to get in front of the X-ray machine and just sit down!

For more info see Dr Maigne's personal website which has links to several articles and images: http://www.sofmmoo.com/english_section/7_coccyx/coccyx_photos/accueil_coccyx.htm

Background to treatments

Before starting this, I should provide a bit more background on myself. I am a 36 year old otherwise fit and healthy guy. I have great family and friends, a fantastic wife, a job I enjoy, and generally a decent life all things considered. Since this pain started, I have had a busy and sometimes stressful time - I have got married, bought my first property as well as dealing with the usual bumps in the road life can throw up from time to time. Key to getting through it have been maintaining normal activities as much as possible - continuing to go to work, to socialise with friends, and to exercise as much as possible. I have become quite addicted to yoga and swimming, as well as being converted to the benefits of mindfulness. That is not to say there have not been some fairly dark moments during a time that everyone anticipates will be amongst your happiest.

Like many coccyx pain sufferers, I have had the various and prolonged courses of treatment. I will try to avoid too much detail as I am sure they will be discussed in further detail in subsequent posts from time to time. Clearly, none of them were anything more than managing it, rather than resolving it.

The first thing my GP did was give me some Naproxen. Horrible on the stomach and did nothing more take the edge off the initial pelvic and lower back spasms which were strong at first. My pain started without any known trauma (other than watching a game of football in the pub!).

After about 6 weeks or so they gave some physio. This focused on working my glutes and lower back - the physio was inexperienced and clearly out of her depth. Even at this early stage, it was clear that nobody wanted to talk about the fact that the pain started in my coccyx area. Fair enough, they are the experts I told myself. The physio was no good and I asked to be moved on to someone else on the NHS more experienced who undertook a lot of dry needling which proved to be a bit more effective but still not getting to the root of the issue.

By 4 months in I persuaded them to give me an MRI of my sacrum and coccyx. The report indicated nothing to worry about. At this point I was already losing patience with the NHS approach so I took myself to the British School of Osteopathy where they referred me to a Doctor within the school who was an expert in coccyx pain. False dawn - after internal examination he confirmed to me that my coccyx was totally normal. He suggested it could be levator ani syndrome (chronic spasm in some of the pelvic floor muscles).

I took myself off to a physio they recommended, who was great, very knowledgeable and the first person to really come close to understanding pain in this area. We did biofeedback, lots of internal massage of pelvic floor and trigger point acupuncture of the various spasms in my pelvic area, of which there were now many! It gradually reduced some of the associated pelvic pain, but over time we came to the conclusion that the levator ani were reacting to something else going on, rather than the cause. She also thought my coccyx felt fairly normal, but this was not her area of specific expertise.

At the same time as this, I had another MRI scan and saw a rheumatologist at Kingston hospital. He confirmed that my back was fine and my coccyx was normal. He gave me a caudal epidural injection as was not sure what else he could do. He barely touched the coccyx other than vaguely pointing to it. He also gave my amitriptyline to see if this eased things - by this point I had already tried diazepam. Nice guy but clearly not his area of expertise either. Eventually he moved me on to pain management at Kingston, where they gave me Lyrica and a ganglion impar block and sacroccygeal injection of anaesthetic and steroid - upon my suggestion as a result of my own research, they clearly did not have any concrete suggestions.

This injection was no good so as I approached nearly a year of pain (and imminent wedding!), I took myself to see Michael Durtnall at Sayer Clinic. I had been aware of him for a while, but had held off contacting until this injection proved unsuccessful. My head had already been bent by the numerous people I had seen over a relatively short period of time, all unable to help despite their best efforts. Michael was great with me and I liked his direct and positive approach. He was the first person to tell me my coccyx was not 'normal' following an X-Ray he took. So what was The rheumatologist looking at when he confidently told me the coccyx was normal?! How the NHS can justify not giving a simple scan like this is beyond all logic. More of that in another posting.

Anyway after numerous (probably more than 50) internal and external manipulations, and quite a bit of what was intended to be complementary soft tissue work, I was still in a position where it had not resolved - at best a 40% improvement and it relied upon me returning regularly to maintain the progress. After a year I asked for another X-Ray and it revealed that it was still in the same position. I was nearly 2 years in by this point and knew I needed a new approach. During this time I had also had 3 MUAs by an orthopeadic spinal surgeon at Guys hospital (again more of that in another post). If it was ever going to respond it would have done by now.

So I booked an appointment to see Dr Maigne in Paris for late October 2014 ( 2 years into the pain). Without wishing to state the obvious my pain was triggered by sitting so his seated X-Ray sounded sensible. I also knew he worked with the surgeon Professor Doursounian and my instinct was this was heading towards the big chop. The scans showed exactly what I wanted them to - the coccyx completely dislocating upon sitting! A breakthrough! I headed back to Paris a month later and had an injection into the dislocating joint to see if if would provide any relief. It did not in any meaningful way so I was referred on to Professor Doursounian as I was considered a 'good candidate' for surgery. 

Coming back to Paris felt like a no-brainier as he has done the procedure over 500 times and once my mind was set I was keen to get it done as soon as possible, not be stuck in a waiting list and dealing with yet more people. Living in London helps as the journey is no longer than a train to Manchester for instance. So here I am in this tiny apartment (room) writing a blog as I recover from the operation that took place on Monday 9th February 2015.

I should also add that I have had various physio over the last couple of years, some better than others, just to maintain my lower back and pelvic area where I have also had peripheral pain. A good physio is key even if they cannot fix the actual problem. I have also spoken to pain counsellors, a specialist pain physio and a urologist. I understand how pain works in the body and the points they are trying to make. However, when it turns out that there is a clear mechanical dysfunction that is the likely cause of the pain, you cannot help but feel vindicated, even if you would rather not!

I would like to reiterate that the aim of this was not to sound critical of people (apart from perhaps the rhuemotologist at Kingston who looked at scan but did not examine it physically!). The vast majority of people I have been treated by have been superb and with a clear passion for what they do. I am certainly no expert and I more than aware that what did not work for me, may work for other people. As has been regularly said, I am complicated case! I do know that coccyx pain is treated notoriously badly though and that this is largely due to ignorance. I would like to think that anyone reading this just takes it for what it is - a real life account of someone who has gone through the process. There are many other accounts of similar stories on the coccyx.org website, which is a fantastic resource of information. If you have pain, I would urge you to use it. If you are a medical professional currently trying  to treat this, or with an interest in doing so, I would urge you to take a read of some of the literature and stories available there - www.coccyx.org. I was frequently told that there was not a lot of research out there, but in fact I think there is more than people realise.

The next blog will be shorter I promise, but hopefully this provides the right context for future entries.

An introduction

A week ago today I had my coccyx removed by Professor Doursounian in Paris. I stayed in the St Antoine hospital for 7 days, coming out on Sunday 15th February. I am now continuing to rest in a nearby apartment, before, all being well, returning home via Eurostar on the 24th February.

Excuse the pun (I am going to try and squeeze them in as often as possible!), but finding a solution to coccydynia really is like chasing your tail. The lack of understanding within the healthcare profession is quite shocking, particularly in the NHS where the standard response can be a shrug of the shoulders and some vague statement of it hopefully disappearing soon - followed by questions hinting at how happy you are with life.

It is a rare condition so perhaps this is to be expected, but it is also an increasingly common condition (as we all increasingly sit down for a living). It needs to be understood better as not being able to sit down is not an easy way to get on with your life! Evidence is out there but people (sufferers and medical professionals) need to be made aware so that they can manage it more effectively.

My pain started in October 2012 and during that time I have had every treatment possible, leading to the ultimate decision to go ahead with the coccygectomy last week. Time will tell as to whether that was the correct decision, although it was my only realistic one left. More on that over the coming weeks I am sure.

The purpose of this ongoing blog is twofold: to keep myself busy over the coming long weeks of recovery and to help spread the word and inform people of their choices should they have the misfortune to suffer similar pain. Ultimately, I want this to help create an increased awareness and understanding of the issues so people do not need to suffer for as long in the future. My pact is to keep moaning to a minimum and try and inject some humour where possible! I hope you find it useful and enjoy it.

In the next entry I will detail the various treatments I have had.

James