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.