Does anything actually help?

Nicola

I am twenty-one and have been suffering from pain in and around my coccyx for as far back as I can remember. Three weeks ago I had my third manipulation under anaesthetic, and yet again it hasn't helped. If anything, it's given me additional pain in other parts of my back. I have tried just about everything possible - physio, acupuncture, painkillers - the only thing that even touched the pain was seeing a chiropractor. And even that relief would only last a day or two. My consultant is reluctant to remove the bones, and is hoping to treat it as a last resort with the risks being so high and me being so young.

I had a scan a year or two ago, which showed that my back is pretty much knackered. Having not injured it in any way, it has been assumed that I was born this way. I have slight scoliosis, giving me general pain in the lumbar area, but is not severe enough to operate on (yet). My sacrum, rather than continuing the 'S' shape of the spine, sticks out at such an angle that my coccyx is less than a centimetre away from actually being outside my body. The coccyx itself, bizarrely enough, has never fused together and is still in segments [But see note below]. Hence the severe coccyx pain. Whereas when 'normal' people sit down they are supported by their sacrum, my coccyx takes my whole weight (which admittedly there isn't a lot of with me being tall and skinny, but it's enough to put me in agony). I've tried putting on weight, to cushion it, but I just can't. I'm one of those really annoying people who can eat what they like and nothing ever happens.

I am due to go back to the hospital in 9 days, when I tell them is hasn't worked again and they tell me what we'll try next. My consultant is Mr Kocialkowksi, he is based at both the Manchester Royal Infirmary, UK, and at the private Alexandra Hospital in Cheadle. He is brilliant. He seems to be the only person who understands how much pain I am in every single day. I'm sure my family and friends think I'm exaggerating when I say how much it hurts, which is probably because the coccyx for some reason is seen to be quite funny. If I'd slipped a disk, now that'd be awful, but it's just my bum-bone right? How little they know.

I have one of those special cushions with the bit cut out, which does help by not applying pressure, but after a while it feels like my spine is slipping downwards because there's nothing to support it. Mr Kocialkowski has mentioned a new treatment that involves burning away at the bones with electrodes, but it is still experimental at the moment so I'd be a guinea pig. And although I trust him, I'm not sure I'd want to go ahead with something so new.

I worry about the future a lot. Especially the thought of having kids. My boyfriend and I have talked about having kids at some point in the future, and while it is something I want, the thought of the pain petrifies me. I suppose I'll just have to insist on having a caesarean. On top of that I worry in general. I'm 21 for God's sake, surely they can't expect me to go through the rest of my life like this? I'll have to pluck up the courage to have the removal done.

Thank you for putting this site together. It has made me realise I'm not the only one, and that there IS hope.

Nicola

Note from Jon Miles:

Doctors keep telling patients that the coccyx is normally fused into one piece in adults, because that is what their text-books tell them. They are completely wrong. Postacchini and Massobrio x-rayed large numbers of people and found that only one in twenty had a coccyx fused into one piece and separate from the sacrum. You can see an abstract of the paper here.

Updated 2003-04-06

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