Coccyx Diary – Initial pain through to removal

David, UK - dmcguigan@hotmail.com

Posted 2014-01-26

Over the past 18 months I have suffered from coccyx pain that has gotten in the way of my life in a number of ways. The following is a detailed description of the steps I have taken to manage and reduce the pain over that time and how I am finally starting to see the light at the end of the tunnel. I hope that someone in a similar position to where I was will find something of use within the text below.

Spring 2012 – The Beginning

- I first started feeling a strange loose (almost squelchy) sensation after a run one morning in April 2012, later that week pain in the tailbone region began to come on while sitting and proceeded to get worse over the next week or so.

- Possible cause – a painful and hard bowel movement a few days previous to the run mentioned above. I think this potentially caused movement or loosening of the bone that was exacerbated by the run and later by sitting.

- I’d get pain when sitting, lying on my back and running. Standing and walking were fine

- I work at a desk and drive 75 miles per day for work and these were the areas that were really troubling me during the day

- I also felt pain when lying in bed, worst when I’d roll over onto my back during sleep

- I couldn’t run a step without instant pain, and in truth this was probably the worst part of the problem as I am a very keen distance runner and was in the process of training for a half marathon

- I managed to control the pain somewhat by sitting on hard surfaces (and leaning forward) or on cushions with a cut out wedge or taper on them. The firmer the better, which seems to be at odds with most other peoples experiences

- Also tried some at home physical therapy after looking round the net (stretching etc), but none of this seemed to ease my symptoms

- Two different GPs confirmed that the problem was probably coccydynia rather than an in growing hair / boil etc, and offered up pain killers that seemed to do nothing to ease the pain. Tramadol being the most extreme, and it is the absolute pits in terms of what else it seems to do to you. I stopped taking pain meds full stop for the problem at this point and was very down. I also developed high blood pressure which I presume was from the stress of not being able to run and never being able to sit / sleep comfortably

- Sessions with my sports therapist highlighted pain not referred from anywhere else and he suggested seeing an Orthopaedic Specialist through the NHS

- KEY POINT – PAIN KILLERS DIDN’T WORK

Winter 2012 – Cortisone injection

- The Orthopaedic specialist gave me a cortisone injection, and this combined with continued use of the ‘seating strategy’ detailed above took the pain down to a level where I could sit more comfortably and start running again. I was also able to sleep more comfortably, but never on my back

- At this stage I still classed the problem as pain rather than discomfort

- At a follow up appointment I had a 2nd cortisone injection and booked in a manipulation procedure at Westmorland General Hospital with Orthopaedic Consultant Mr Nallapuneni (who had been recommended by my sports therapist) (see Doctors and specialists in the UK, Cumbria). The 2nd cortisone injection did not reduce the pain much more but probably bought me some more time before the manipulation

- KEY POINT – CORTISONE INJECTIONS TOOK THE INFLAMATION DOWN SOMEWHAT, BUT LARGE AMOUNTS OF CARE REQUIRED TO KEEP IT AT THAT LEVEL

Spring 2013 – Manipulation

- The manipulation was performed under general anaesthetic and I was released from hospital the same day. The NHS care received on the day was exceptional and Mr Nallapuneni was thorough in his description of what he was going to do and honest about the chances of success, i.e. a manipulation usually helps but rarely fully solves the problem

- I took 2 days off work while soreness from the manipulation subsided, with help of ibuprofen and was back to running again in about a week

- Over the following month the pain gradually subsided to something more like discomfort and seemed to even out at this level (although I was still sitting on firm surfaces where possible)

- In the months following the manipulation I found that light stretching and self massage to the gluteal muscles helped to ease discomfort slightly and temporarily

- After recovery from the manipulation I was able to sleep comfortably, sit on more chairs (ability to drive without a cushion was main thing) and continue to run as normal, but the problem was still there

- KEY POINT – A MANIPULATION IS A FAIRLY ROUTINE PROCEDURE PERFORMED UNDER GENERAL ANAESTHETIC, BUT OFTEN DOES NOT SOLVE THE ENTIRE PROBLEM

Summer 2013 – Booked in for coccyx removal

- I had a follow up appointment with Mr Nallapuneni where we discussed the improvement

- I was offered an appointment for a further manipulation or instead, a full removal of the tailbone. Mr Nallapuneni was of the opinion that further manipulations weren’t likely to make a vast amount of difference

- I decided to go for the operation to remove the coccyx as I had been very impressed with the care I’d received up to that point and also as there was a very low likelihood that the operation would make things worse. Also as an active 31 year old I didn’t want to go through life managing the problem only for it to re-occur later on when I had the chance of getting it sorted once and for all. I basically bit the bullet!

- KEY POINT – BY GOING FOR FURTHER MANIPULATIONS, YOU ARE POSSIBLY ONLY DELAYING THE INNEVITABLE SURGERY

Autumn 2013

- In the lead up to the operation I was told that the operation itself is relatively straight forward, with virtually no risk of coming out on the other side in a worse state than going in

- The main risk is infection to the entry wound for the surgery which can lead to increased recovery time, which is already quite a long process

- At all times in the build up to the operation Mr Nallapuneni stressed the importance of keeping the wound clean and protected and of how important it is that he makes a clean incision and a clean job of re-stitching the entry wound

- KEY POINT – BE PREPARED FOR A LONG LAYOFF AND GET IT CLEAR IN YOUR HEAD THAT YOU HAVE TO BE ON THE BALL THROUGHOUT RECOVERY IN TERMS OF CARING FOR THE INCISION. WOUND CARE SHOULD ALSO BE THE TOP OF YOUR SURGEONS PRIORITY LIST

29th October 2013

- Operation day

- I arrived at Westmorland General Hospital (Kendal) at 11.00am. During the pre op assessments they seemed worried about my extremely low heart rate and slightly lower than normal blood pressure (I was wondering why I was quite chilled out about the whole thing!) Eventually they seemed to believe my suggestion that the low HR came from working out 10-12 times a week and I was given the all clear to go ahead with the op

- I was walked down to the operating theatre at 5.00 pm, six hours after arriving, made comfortable and put to sleep using general anaesthetic. I awoke at around 6.30 pm feeling slightly disorientated but generally ok. The Op itself had taken around 40 minutes to complete and early indications were that it had gone well

- I would be kept on saline and anti-biotic drips for the next 48 hours, and was told I’d be completely bedridden during this time. At this stage I was also given a mix of paracetamol, ibuprofen and codine to take orally

- I don’t remember much about the first night in hospital but at one stage my blood pressure (checked hourly) went too low, so the drip I was on was changed and the pressure slowly went up

- Pain levels weren’t high at the time because of the anaesthetic and I had a relatively comfortable night sleeping on my side, turning with help from the nursing staff to the opposite side when I became uncomfortable. This and urinating in a bottle would become my life for the next 60 hours

- KEY POINT – BE PREPARED TO WAIT WHEN YOU GET TO HOSPITAL

30th October 2013

- Recovery day 1 – Bed rest and getting the pain under control

- Mr Nallapuneni visited me in the morning. He told me he was pleased with the way the operation had gone, commenting that prior to removal the coccyx did seem a little loose and also ‘generally not very nice’. I assumed from this that he meant that the surgery was the correct idea! He reconfirmed that his focus was still on reducing potential for infection to the wound and also to promote healing I must not lie on my back at any point over the next 2 weeks

- I would remain on drips (including my liquid antibiotic diet), but was now managing the pain with just paracetamol and ibuprofen 4 times a day

- The bed rest was the main discomfort by this point as I couldn’t comfortably lie on my stomach and was starting to get pressure sores in my hips from lying on my side. The pain medication helped a little with this but I needed assistance to turn over from my left to right side (and vice versa) so I was probably spending a little too long on either side

- After the operation a drain had been inserted into the wound and this was doing its job removing any fluid (primarily blood) from the wound site.

- At this point I was constipated but not uncomfortably so, but was urinating every 2-3 hours into a bottle in bed. A tilting bed proved to be a life saver here; I never knew how much we rely on gravity to be able to pass urine!

- KEY POINT – EVIDENCE THAT PRIOR TO REMOVAL THE COCCYX WAS LOOSE AND NOT IN GENERAL GOOD SHAPE. EARLY INDICATIONS WERE THAT SURGERY WAS THE CORRECT THING TO DO

31st October 2013

- Recovery day 2 – Further bed rest, removal of drain and getting off the drip

- Pressure sores were the main thing that annoying me by my second recovery day (aside from the slightly mad man in the bed next to me).

- The continued time in bed was frustrating as well but today would mark the end of my drip treatment and also the removal of my drain, so things were moving forward

- I was still on paracetamol and ibuprofen, and would now be on a 5 day oral antibiotic course

- KEY POINT – PRESSURE SORES HURT MORE THAN THE OPERATION WOUND

1st November 2013

- Recovery day 3 – Getting up and about, moving bowels and coming home

- Today would be the day I got out of bed (after 63 hours). I was helped to my feet by the hospital physio team and slowly moved about on crutches for 5-10 minutes. I initially felt ok but then came over a bit faint and had to get back into bed. I was then told to get up for 5 minutes every hour or so, which I could do on my own as long as a nurse was around to assist if I got into trouble. On my fourth attempt I started to feel good so the physios worked with me on mobility through the afternoon

- I was also visited by a member of the occupational therapy team who assessed my situation and prescribed a tall stool to ‘perch’ on when I felt better, a raised toilet seat and also a 2 foot ‘grabbing device’ to help me to get dressed and pick things up off the floor.

- All this moving around led to my first bowel movement since the op. It was surprisingly easy and it honestly felt as though it was the first time in my life there was no defective coccyx getting in the way. This made me think back to the possible cause (mentioned near the start of this diary) and in my mind upgrade it to probable cause. It was difficult to wipe the area clean after the bowel movement due to the proximity of dressing, although this is something I had to get used to

- Later that day I had the wound re-dressed and was relieved to hear that the wound was dry, and that the area was clean following my toilet visit earlier

- I was discharged that evening, a full 72 hours after the operation and returned home feeling happy that I’d received yet more excellent NHS care. I travelled the 3 miles home kneeling down across the back seats of my partner’s car.

- Unfortunately on the first night back at home I rolled onto my back during sleep. The pain woke me up quite quickly, but I went back to sleep and managed to stay on my side for the rest of the night. There was no additional pain next morning and upon inspection of the wound site (by my partner) it seemed as though everything was still ok

- KEY POINT – WHEN IN HOSPITAL DO AS YOU ARE TOLD AT ALL TIMES, WHETHER BY SURGEON, NURSES, PHYSIOS OR ANY OTHER HEALTHCARE PROFESSIONALS

2nd - 5th November 2013

- Now at home I would spend my time either lying on my side or standing up. I was also told I could sit for short periods using a donut shaped cushion, but I’ve as yet not felt the need to do this. I tend to get up and walk about whenever I feel as though I need to, mainly as I’m not of the opinion that being completely sedentary is good for anyone, but when I did get up and about I was aware of the need to be very steady

- I have been fairly (and progressively more) mobile around the house. I take my time when transferring from one position to another, and tasks like washing myself and walking up the stairs take a bit of self control to do slowly and steadily

- To avoid rolling onto my back during the night I have been tying a two handled saucepan to my back (so that the base of the pan is flat against my back). This may sound ridiculous but it is by far the most effective method I’ve tried to date and I get a good enough night’s sleep without the worry of rolling onto my back

- I still have problems with the pressure sores, but have been applying ice therapy (bag of frozen peas) to the hips as required and this is keeping the pain under control well

- Pain levels are noticeably decreasing, and flexibility is improving, although a week on from the operation I still cannot put my own socks on

- My partner checks the dressing regularly and so far there doesn’t seem to have been any need to change it. I have been washing myself stood up in the bath with a flannel and this seems to suffice for now. The wound dressing is wash proof, but I have decided not to let it get wet at all

- My course of antibiotics comes to an end on the 5th and I have an appointment with my surgeon on the 6th, so will take further advice on dressing care then, especially as I may no longer be taking antibiotics to assist infection prevention.

- KEY POINT – TAKE THINGS EASY AND SLOWLY. KEEP LISTENING TO YOUR BODY AND HAVE LOTS OF BOOKS TO READ OR FILMS TO WATCH

6th November 2013

- Post op appointment with Mr Nallapuneni

- One week after surgery Mr Nallapuneni gave me a once over and told me that the wound was dry and healing well. He removed the antibacterial strips that were covering the wound and redressed it with a smaller dressing than before. I was told to remove this dressing in 4-5 days time and then leave the wound exposed so it could heal better and be lightly cleaned. I was also booked in to see Mr Nallapuneni again the following week

- On journeying to and from the hospital I found I could sit in the car on a firm cushion reasonably comfortably

- When I got home I had a taste for the outside and completed an easy 1 mile walk around the block in the village and felt comfortable in doing so. Mobility and flexibility is returning well and I am now able to reach my feet to put my own shoes and socks on

- KEY POINT – I NEVER THOUGHT THAT I’D HAVE COME THIS FAR IN MY RECOVERY SO QUICKLY. THE KEY, I THINK, IS TO NOT GET CARRIED AWAY BY THIS AND CONTINUE TO MOVE FORWARD SLOWLY AND WITH CARE

13th November 2013

- 2nd Post op appointment with Mr Nallapuneni

- Two weeks after surgery a further inspection of the wound site received positive feedback from Mr Nallapuneni. The wound had been dressing free since Sunday (now Wednesday) was dry and healing very well. I am booked in again to see Mr Nallapuneni in 2 weeks time, and I have also received a Drs note specifying a further 4 weeks off work.

- Pain is improving in the area and these improvements are noticeable week by week rather than daily. The ride to the hospital was noticeably more comfortable this time

- I don’t think the wound is likely to cause any problems now, but I am still treating it with caution. Mobility is good and I can do simple jobs around the home, and have been walking for 30 minutes each day for the past week now. Sitting and lying on my back is still uncomfortable, so I am not doing either. I expect it to be a number of weeks before this improves sufficiently to be able to go back to sitting normally

- KEY POINT – ENTRY WOUND IS HEALING FASTER AND BETTER THAN EXPECTED, THOUGH CARE MUST STILL BE TAKEN UNTIL IT IS FULLY HEALED

27th November 2013 - 4 week update

- 3rd Post op appointment with Mr Nallapuneni

- The wound has now completely healed from the outside, although I was told that under the surface it would still be healing but that improvements to comfort should be more noticeable from now. I will return in circa 6 weeks for a final check over and to be signed off by Mr Nallapuneni.

- I am still off work, but am walking an hour a day and have just started light cycling work on the fixed bike in the garage, which seems to be helping recovery. I am able to lie on my back now but only for 15 or so minutes before becoming uncomfortable and I can sit for extended periods on specially designed cushions that have a cut out section near to the wound when I sit.

- KEY POINT – WOUND HAS HEALED IN 4 WEEKS AND IMPROVEMENTS SHOULD BE MORE NOTICEABLE NOW

15th January 2014 - 10 week update

- 4th Post op appointment with Mr Nallapuneni

- The wound continues to heal well. There is still some soreness that is usually only felt when sitting with my weight on the area

- I am back at work part time, and will be returning full time in the next week or so. I can now drive the 75 mile round trip to work without any issues, although I am still sitting on a cushion when at work. I can lie down on my back without any pain and can sleep comfortably on my back for the first time in over 18 months. When not sat down I am fully mobile and have run for over an hour with no problems whatsoever

- The sore feeling, which is possibly the incision site rather than the site of the removed bone, seems to be taking the most time to go away. I can tell the difference from week to week, although if I have a week with lots of sitting in unfamiliar seats (e.g. at Christmas time) then the difference is not really noticeable. I have read that the operation can take 3-12 months to fully recover from, and as I’m at 2.5 months I won’t worry yet. I’m hoping I’ll be close to a full recovered by mid 2014 and will write again then with an update.

- KEY POINT – I NOW FEEL AS THOUGH I HAVE MY LIFE 90% BACK, BUT AM PREPARED TO BE PATIENT FOR THE FINAL SORENESS FROM THE OPERATION TO SUBSIDE.


End April 2014 - 6 month update

- I am now back at work full time, sitting on a normal chair with no cushion. There is still some very light soreness if I sit down for long periods but this isn't really bothersome and reminds me to get up and go for a walk every so often

- I'd say I'm at around 95% fixed and am not sure whether or not I will get the extra 5% but this doesn't matter as I have my life pretty much 100% back

- I'm back running and am currently covering roughly 30 miles a week as I rebuild my fitness after such a long time off.

- I will write again at 12 months and you never know I may have made a 100% recovery by then

- KEY POINT – ALTHOUGH THERE IS STILL SLIGHT SORENESS IN THE AREA I AM FULLY ABLE TO LIVE MY LIFE HOW I WANT AND AM VERY HAPPY I WENT FOR THE SURGERY.


End August 2015 - 20 month update

- I am now 100% fixed. There is no pain, no discomfort and I don’t even think about ever having had a problem

- I lead a very active lifestyle but do a little less running now. I do a lot more walking and focus on natural movement as much as possible. I have also recently taken up crossfit and can do all of this with no problem

- The main issues I’ve had to deal with are that during the painful stages of the problem, I developed chronic tightness in my upper body trying to constantly hold myself up in sitting and alleviate the pain. This has taken a lot of work to get rid of and I have taken advantage of the fantastic practices of Alexander Technique and Rolfing / Structural Integration to achieve this. This has allowed me to become much more mindful of how the body should work and this investment of time and effort has made me better than I ever was.

- I have a long term aspiration to remove the commute and sitting element from my job and am currently working on ways to do this. My life has changed a lot in the past 3 years but it has certainly never been better

KEY POINT – WHEN SUFFERING FROM A CHRONIC INJURY THE MOST IMPORTANT THING IS TO TAKE AN ACTIVE INTEREST IN SOLVING IT. TAKE ADVICE AND SEEK PROFESSIONAL HELP BUT DO NOT BE A PASSENGER IN THE RIDE. AIM TO CONTINUALLY CHIP AWAY AT THE PROBLEM AND ALSO AIM TO COME OUT ON THE OTHER SIDE STRONGER THAN YOU HAVE EVER BEEN. IT IS WELL WORTH IT


- OVERALL KEY POINTS

I have followed quite a standard pathway for the problems with my coccyx including pain killers, physiotherapy, cortisone injections, manipulation and removal. If I went through it again I’d go to see my GP ASAP to confirm that it’s not and in growing hair etc and at my first visit ask to be booked in with a specialist straight away. If the GP prescribes pain meds as well then this appointment can always be cancelled if they provide sufficient relief. I’d give Tramadol a very wide birth, it messes you right up and is highly addictive!

Things seem to speed up once the orthopaedic specialist is consulted and proper treatment can begin.

As all of this is happening, any physio programmes given or found on the internet can be practiced at home. It seems different people react in different ways to physio prescribed exercises. For instance part of some physio programmes is to do more running, and I couldn’t run a step without pain. Gluteal massage did help a little for me though.

Multiple cortisone shots and multiple manipulations don’t seem worthwhile to me. If one doesn’t solve the problem adequately then consider moving to the next level of treatment.

When it comes to the operation itself you can read lots of horror stories, but these tend to be around the wound getting infected. If wound care is at the top of your surgeons priority list then this should greatly reduce the risk of problems, as long as you do exactly what you are told when it comes to recovery.

Overall I am very pleased I had the surgery done. The care I received from the NHS has been excellent and the procedure was much more routine than I was expecting, and initial recovery much quicker. After 6 months of recovery I go into the next half year knowing that any further improvements are just a bonus now.

A year and a half after surgery and I am now a firm believer in learning about how the body and mind works and taking more responsibility for my own overall wellbeing. If you can get into this mind set then many future problems can be avoided and any that do come along can be addressed as challenges to overcome rather than life afflicting conditions. You come out stronger on the other side, every time, while always tending towards true bodily health.

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