Surgery on the 5th September

Anonymous

Original posting, 2005-09-11:

About 4 years ago I had a fall down some stairs, bruising [or breaking] my tailbone. I was told there was nothing to be done about it, and it would get better in it’s own time, probably about a year. Ha.

Since then I have had constant pain sitting on anything soft, I can’t lean or lie back at all, if there is pressure on the bone from jeans or underwear and as a passenger in the car it is horrible. For some reason it’s not as bad if I drive, I think because I brace myself with the steering wheel. My GP tried an internal manual manipulation of the tailbone, which didn’t help at all, and I almost passed out / threw up with the pain.

After a while I began waking up at night in pain. If I turned over onto my back the pain would wake me up. About 2 years ago I finally decided that I needed to have it looked at by a specialist and find out what was going on. It was just getting worse, and I am tired all the time. Pain killers have no effect on it at all. Plus my poor husband is suffering too, as it affects me so much.

Thank goodness I found this website while searching for information, which prompted me to insist that my GP send me to a specialist. I see an orthopaedic surgeon, Dr Chan (see list of doctors and specialists in the UK). , in the Royal Devon & Exeter hospital, and in order to be sure that I would be a good candidate for the surgery, I have had the cortisone injections three times – they helped a lot, but don’t last longer than about 5 months, then I’m back where I started. I travel back and forth to Portugal from England approximately every 2 or 3 weeks by plane for work, and it’s been a nightmare at times. Plus it seems I have a deformed coccyx anyway, it has always been close to the surface of the skin, but now it literally sticks out, and you can feel it. [revolting to be touched there too] Plus I have a sinus in the skin. This has never caused me any trouble, but I was interested to note on your site [spur on the coccyx] that there ‘may’ be some connection between this and the coccyx problem.

I asked Dr Chan if he would remove the coccyx, seeing as all these things appear to make me an excellent candidate for surgery. He agreed, so I am going in tomorrow for the pre-op, the on Tuesday I will be having the offending bone removed at last - the 9 month wait on the NHS list has been a very long one! I have also had Bell’s Palsy during this time, and I am sure it is partly due to the exhaustion of being in constant pain. Our private medical insurance refused to pay for the coccygectomy, as I had had a ‘previous’ incident – that was when I fell down the stairs – THAT was cancelled rather sharply! If they had paid for it, I would have had it a year ago.

Thanks to everybody else who put their stories on the site - some are scary, but most of them have really helped me to be confident about having the operation. Still petrified, but confident it will help me get my life back.

Update, 2005-09-18:

Day 01: [pre-op] A long 'waiting' day - take water, books & something to snack on . . went into the hospital at 11.15, finally saw action at about 3.30. Had an ECG, urine sample, blood samples, blood pressure check, gave MRSA swabs [this is voluntary] had x-rays and a chat with 2 nurses and Mr Chan's assistant, who explained as much as he could to me about what would be happening.

Went to the ward around 5.30. Sandwich for dinner, then try to sleep - some of the people on the ward were already operated on [mainly feet & hip replacements], so were in a lot of pain - I was offered a sleeping pill which I initially refused, but started to get very panicky, so took it at 11.30, and slept until 5.30. Hospital is a strange place for sleeping. Too much action!

Day 02: [surgery] As the operation was scheduled for the afternoon, no-one could decide if I could have breakfast or not. Eventually it was decided that I could have only water or black tea/coffee until 10.00. After that I was just waiting - sneaked out a few times for a cigarette, out of boredom mostly. Saw the anaesthetist, the same man I had when I had the cortisone shots, so that was reassuring. He explained more things, including the fact that Mr Chan would put a local anaesthetic into the wound, which would help with the pain when I woke up. The wound would have dissolvable stitches on the inside.

Went into surgery at 2.30, and came out at 5.30. The only thing I remember is feeling extremely thirsty and my husband looking very worried. Apparently I eventually woke up enough to have a bar of chocolate, a sandwich and some water. Pleased, as I managed to walk the short distance to the toilet with Andrew's [my husband] help! Very woozy from the anaesthetic. Was asleep by 8.30.

Day 03: Woke at 3.00 in the morning, was helped to the toilet again by the nurse, [I love nurses - they are so kind] woke again at 6.00. Andrew had brought me lots of chopped fruit [I read the one about constipation & decided to plan ahead!] so had that for breakfast with the pain killers. Drank litres of water, very thirsty all the time.

Mr Chan arrived with his assistant, & told me that my coccyx was fused to the sacrum. Also it has a very sharp point on the end, was pointing to the side and now that he has seen it, he feels there is a good chance that this operation will resolve my problem. I believe he said he could see where it had been cutting into me on the inside. I have this beastly little bone at home now, and have had a look at it - it is very sharp indeed! No wonder I couldn't sit properly! It reminds me of one of those old stone arrow heads. Pretty gross I know, but I had to see the cause of it, as all this time I thought it must be a huge bone, but it's not. Also, to know for sure that this was really the cause of the pain [in my own mind], as so many people were against me having the operation. Probably I shall stomp it at some point for revenge.

Mr Chan advised waiting 4 - 5 days before taking a shower, and to see my GP if there were any signs of blood or seepage / swelling. No one really knew what to do with me, as the coccygectomy is such an uncommon operation. But I had plenty of pain relief, and saw a physiotherapist who advised a stick. Since I've been home, it's been a blessing - I am very worried about falling / tripping, plus we have stairs, so it's very useful.

Day 04: Had a really aching butt when I woke up, still very thirsty and giddy when I walk. The pain is being managed by the tablets they are giving me, and I am feeling positive. Was told I could go home if I wanted to, so was on the phone immediately to Andrew to let him know. The nurse changed the dressing & checked the wound which apparently is doing well, she also arranged for a District nurse to come and change the dressing again next week Tuesday. It needs changing every 4/ 5 days. I left in the evening, armed with a huge bag of medication, including laxatives. Lay down in the front seat of the car - not a nice journey, but not unbearable. Got home and had the stairs to face - managed them, VERY carefully, with Andrew behind me and the stick. Went to bed very shaky and exhausted.

Day 05 & day 06: Sleep, eat fruit, take meds and get up every hour or so to walk about / go to the loo, as I am worried about the wound stiffening. The local anaesthetic seems to be wearing off now, as I can feel the wound more, and am very glad of the meds. The same thing happened when I had the cortisone injections, so I am not unduly concerned. Stopped the laxatives, as they gave me terrible stomach ache, so am relying on nature to take it's course I hope.

Day 07: Today - feeling very tired still, but pleased with my progress, as I can get up and down stairs ok now if I am careful. Managed a 'standing up' bath & washed my hair, although afterwards I was shattered. Bending over requires great care. Sleeping a lot, and I'm very glad of the forward planning that allows me the laptop in the bedroom [had a wireless card put in it] - I can do the shopping, banking etc. all from here and keep in touch with my friends without having to talk.

Now it's just to give the wound time to heal, and see what happens. Tuesday the District nurse will give me an idea of how the wound is progressing. As a matter of interest, there is no bruising around the wound, and it is quite small. I will update again once I have seen Mr Chan for the 6 week check up in mid October. I feel very confident but will let you know how it turns out.

Update, 2006-01-15:

This will be the last update to my experience unless anything chaotic occurs . I saw Dr Chan for the check up, and he was pleased with the result [not as pleased as I am!]. The District nurse came round to the house to change the dressing for me. This was arranged before I left the hospital - a few days after she’d changed it, I just left the dressing off and wore a very loose cotton nightdress. The wound healed pretty quickly, and now you can barely see it at all as it was very neatly done. Just to say thank you to Dr Chan here - I was terrified, but he was very informative, helpful and put me at ease with his quiet and professional manner.

I am now MUCH better. I can’t believe it was only 4 months ago. I have just come back from a holiday, the flight was 6 hours and I was ok. I stood up for a while, but I think that most people get an aching butt in those miniscule seats. The best thing was being able to lie on my back on a sun-bed for the first time in 5 years!

At this point the scar is still a bit achy sometimes, with the occasional stabbing pain, so I am still careful of it, but I am 90% better off than before. I think it’s going to be 100% eventually, because this type of wound must take ages to heal completely - apparently the soft tissue alone takes about 4 weeks to start healing properly. But I can wear jeans, drive without bracing myself all the time, turn over in bed without lifting myself up first, and I can even sit on soft cushions! I can sit at my computer and work all day no problem too. You will know how much all those ‘little’ things mean. Yay! Almost normal!

I know how depressing the constant pain is, so I hope this helps whoever reads it to feel more positive. I am only 44, but I felt like an old crone before - I was so exhausted and depressed that in May 2005 I contracted Bell’s Palsy on top of everything else. But that is also improving daily, and I will get there eventually. One of the most important and helpful things all along has been the support and understanding of my husband - I am sure he was totally tired of me at times, but he was an absolute Godsend. I wouldn’t have managed at all without him.

And I can't thank Jon enough for this site, it absolutely changed my life - I know I’d still be I pain if not for his helpful information.

Good luck to everyone else with this horrible problem.

scar at day 7

Day 7: note no bruising at all, and Mr Chan started the incision where I used to have a Pilonidal Cyst that was present from birth. Great, one less thing to worry about, as there was always the small risk that the sinus could become infected, plus it was unpleasant to be touched there too.

scar at day 11

Day 11: left the dressing off now.

scar at day 18

Day 18: Incredible - almost gone.

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