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