Coccygectomy success story

Fiona

Posted 2009-10-25

I've been meaning to email you for over a year. I found your site helpful when I was going through coccyx pain and treatment wasn't working. I guess its one of those things that's really frustrating for us all because there's no one who really knows what we're experiencing and how treatment will go even from within your site - everyone's case is so different!

Thankfully mine is a success story. I've had a coccygectomy (Feb 08) and now have complete relief from my pain there. I had lost 25 kgs and been doing situps and started to get a lot of pain in that area. It reached the point where I couldn't sit comfortably for more than about 10 minutes. I had assumed it was because I had lost all my "padding"! My sports doctor suggested trying a cortisone injection and that worked for a couple of months. Each injection seemed to give me less and less relief, although I kept leaving it too long between them, so it would get quite bad again (which I realise now probably wasn't the best way to go). From the very beginning the doctor said he could tell my coccyx was "not right" and that there was definitely a problem. It was literally just below the skin and therefore very easy for anyone examining me to feel.

I had a CT scan done with 3D imaging which showed my coccyx was pointing backwards and the angle "was consistent with a previous break". I had lots of friends coming out of the woodwork telling me that they had broken theirs and how excruciatingly painful it had been when it happened. While I had fallen on my butt quite a few times, it had never really hurt that much. However, since my, say early to mid twenties, I had not been able to ride a bike comfortably. I had bought a bike then (having ridden as a teenager and found it fine) and was unable to persist with it because of discomfort - I assumed I was just being a bit "pathetic".

My sports doctor decided it was time to start talking to a surgeon as I was no longer getting relief from the injections and the pain was getting worse. I went to see a neurosurgeon, Dr Richard Parkinson, (see Doctors and specialists in Australia) (ortho surgeons here don't want to talk to you if its your spine apparently) and mine sent me for an MRI which showed much the same as the CT I think. He was in agreement with my doctor that it was fairly advisable to have the surgery as there was nothing much else I could try. I was, of course, advised that the surgery may not cause the pain to go away completely. I was in a dilemma. I really didn't want to have surgery but knew that I probably had to try it. I love going to the theatre and the cinema and this was no longer an easy thing to do. I booked the surgery and told myself that I would eventually be able to ride my bike again (the bike that, although nearly 14 or 15 years old was virtually as new).

My surgeon was great. I was in hospital for 2 and a half days. The night after my surgery my surgeon said that my coccyx (which I had asked him to keep for me if he could) was a bit "unusual". When I asked him what that meant, he said it had looked inflamed and that he had had to send it off for tests.

My recovery was great. Obviously sitting and sleeping was painful for a few weeks to a few months. But I was so glad I was now a fit individual instead of the sloth I had used to be. I was up and walking around in hospital that first evening and pacing the corridors in no time - the nurses were initially a bit concerned that I would faint or something, but later said they could see in retrospect it was ok. Advice - if you're going to have surgery and its physically possible, get as fit as you can - it REALLY makes a difference. I had a nurse wake me up at 3 am to ask me if I exercised a lot - turned out my heart rate was really really low but she relaxed when I said yes.

So I had surgery on the Monday, came home on Wednesday, walked slowly down to my local gym on Thursday morning and walked a few kms slowly on the treadmill being careful not to get sweaty AT ALL. Each day I walked further and was gradually able to go faster. I had the stitches out about 10 days after the surgery I think (that was a bit of an ordeal, but all good in the end). Once the stitches were out I was less worried about sweating and started to build up to jogging. By the time I saw the surgeon about 2 and a half weeks after the op, I was able to run 10 km on the treadmill. I asked him how he felt about me exercising and he said some slow gentle walking and maybe swimming would be ok. I confessed to jogging (and braced myself for a telling off) and rather than chastise me he seemed quite thrilled. About 8 or 10 weeks after my surgery I completed my first half marathon.

I managed to sit through something at the theatre only just over a week after my surgery (though obviously not terribly comfortably) and went to something the following week too. I think it was probably about 4 months after the op that I suddenly realised I wasn't noticing any pain anymore.

When the results of the testing on my bone came back I was told it had had a Benign Notochordal Cell Tumour (BNCT) in it which may have contributed to it going a bit weird. I had a follow up MRI done 12 months later and they seemed happy enough with that. On the one year anniversary of my surgery I went to see a Sydney Theatre Company production of Shakespeare's War of the Roses which was in two parts, both about 4 hrs long with only an hour or two in between! I think I was more comfortable than most of the people around me!! I'm so glad I finally bit the bullet and had it done - its a huge relief its all over and problem solved. I've since done a longhaul flight to the UK and back without any issues and am now back on my bike as well!

I hope this helps someone. For me, it turned out, the coccygectomy was the solution. If there's anything you can think of that I might have left out or you have a question, then please feel free Jon. Thanks again for the website.

Regards

Fiona

P.S. I found when I was in hospital that I was better off without the pain meds and just getting up and walking when it got too much, even if it was the middle of the night. Standing and walking not such a bad thing...

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