Ian Hobson - firstname.lastname@example.org
I'm male, 51 years old. I live in the UK. My pain in the butt came 'out of the blue' (unless it was a 20 year old injury, come back to haunt me). That was in October 2000. We (me and several doctors) tried waiting a few weeks for the pain to go away. It didn't. We tried a variety of cortisone injections. One or two of them helped a bit; but nothing permanent. I tried osteopathy. It helped a little but not much. I'd learned to live my life standing up, as I only had pain from sitting, but wasn't too happy about that. I'd been referred to a surgeon at Bradford Royal Infirmary who had me x-rayed and told me that the third coccyx joint from the tip was arthritic. He offered me surgery (to remove the last three segments of my coccyx) saying that I had an 85% chance of being completely cured and a 15% chance of some improvement. I agreed to surgery knowing that there would be a waiting list and that I could change my mind later if I wanted to. I was frightened; for two reasons: I thought it would be very painful (I was wrong about that). I'd heard lots of 'surgery made me worse' stories. But on 19th February 2001 I showed up at the hospital.
I asked the anaesthetist if I could have a caudal block (injection into the spine to numb the area) as well as the general anaesthetic. He agreed. I had the operation at about 5 pm. The general anaesthetic was brilliant: I closed my eyes for what seemed to be only a few seconds and the operation was done, and there were no ill effects. And thanks to the caudal block (administered whilst I was 'out') there was no pain for about 12 hours. I stayed in hospital overnight.
Having slept very little in hospital, I was glad to get back home to my own bed. I was surprised that the pain was so easy to bare. I slept a lot, but suffered from pain in my hips and legs as I'm not accustomed to sleeping on my side.
Dressing removed. Buttocks well bruised.
First bowel movement. OK apart from having to sit: going from sitting to standing hurt. First shower (and blow dry).
Days 5 to 8
As the 7 stitches tightened, the pain got worse. Having them removed was very painful, but it didn't take long and I felt much better for it.
The wound became more painful and by evening had turned quite red. We (my wife and I) suspected that I had an infection. I went to an emergency surgery and the doctor put me on antibiotics. They worked (or maybe the infection was imagined).
Days 10 to 22
Progress was slow but bit by bit I seemed to improve. Anti-inflammatory tablets helped. I started to go for short walks down the road and to do a few minor jobs around the house: anything that could be done standing up. The pain separated itself into two: a soreness at and around the top of the wound and pain at the new end of the coccyx. Both seemed to be improving, with occasionally no pain at all.
Still a long way from pain free and still not ready to sit (or return to work). But this morning I put on my wellies and went for a walk over/through a nearby hilltop/farm, climbing two stiles on the way.
I cant help wondering if surgery was a big mistake. Progress seems so slow that it's hard to be sure there is any. My wound still feels sore; right down in the butt crack. And I still have pain at the tip (new tip) of my coccyx; the sort of pain I would have had, pre-surgery, after a one hour drive, i.e. feels like I've been sitting on the end of a broom handle for an hour. It's not bad pain; but if I stand still for too long it gets worse; if I lie on my back it gets worse; if I lie on my side it gets worse after about an hour. It's best to lie on my belly but that's not very comfortable, so I just keep moving. I walked about 2 miles this morning. That reduced the pain slightly, but it increased when I got home. I still don't feel ready to sit yet.
Yesterday and today I've had noticeably less pain, and this morning I walked 3 miles, though it took 1 1/2 hours instead of the usual 1 hour. This afternoon I saw the surgeon. He told me again that the 3 segments of coccyx that he removed were loose, and that he is confident that he has removed the cause of the problem, and that I should make a full recovery. He had no worries about me still experiencing pain at this stage, and said that recovery time varies. He said that it can take several months, or even up to 2 years, to be completely pain free. I asked about internal stitches: apparently there are/were 4, just under the skin. I think I might sit for a minute tomorrow!
I walked about 4 or 5 miles today (and lay sunbathing in the heather on Ilkley Moor for an hour). A little pain but not much. But still not back to where I was before the op. I find I can sit on my coccyx cushion for 2 or 3 minutes before it starts to hurt. No sit-to-stand pain though! I hope to go back to work next week.
6 weeks post op
About 5 days ago I mowed the lawn. I shouldn't have done that. It seemed to set me back about a week. So I still have more pain than before the operation. But I'm able to lie on my back for longer now (before the op I slept on by back, and mostly woke pain-free). This morning I sat (on my coccyx cushion) for 4 minutes, and hurt for about an hour afterwards. This afternoon I saw my GP and we agreed that I should have at least another week off work - maybe two. Am I getting better? Yes, I think so. Butt progress is very slow and has its ups and downs.
Sitting is still a big problem, but otherwise I am almost back to where I was before the op. So, back to work tomorrow!
I'm very disappointed. 8 weeks, and I still have more pain than before the op, despite sitting a lot less. Work was hard on the feet after a 7 week 'holiday', but my feet are OK now. I find it best not to sit at all at work, or the pain kicks in and lasts all day. I sat for dinner this evening (5 minutes). First sit for 4 days. After a minute I began to feel the pain - like a slowly tightening rubber band attached to the end of what's left of my coccyx. Now (1/2 hr later) I have that familiar 'having sat on the end of a broom-handle pain'. Am I getting better? No comment.
Progress is very slow, but 2 weeks have made a difference. I'm still not back to where I was before the op, but I seem to be getting closer. I mostly sleep well and wake pain-free. At work I now sit for 2 or 3 minutes for my coffee-breaks, and I can sit for the evening meal (if I eat quickly). And, on Saturday I had my first drive in 10 weeks. I managed 15 minutes. I found the car seat (plus the coccyx cushion) to be very comfortable. Slow progress is better than no progress.
Just as before, I have good days and bad days. But I feel sure that whatever caused the pain before the operation is still in there and still causing the pain. I seem to have more pain from standing than before; so work is still a PITA (pain in the arse). When I expressed my concerns in a letter to the surgeon he replied, saying that 'recovery from this condition/operation can be very slow'. Funny how he never mentioned that before the operation. My GP has given me some stronger anti-inflam tablets, and has written to the surgeon suggesting that I have an earlier appointment (late June).
I'm still no better off for having this operation and if anything, worse than a month ago. I did have a couple of good weeks after starting to take stronger anti-inflammatory tablets, but this coincided with a 10 day holiday from work. Once back at work the pain returned. The last hour at work is always the worst. As before the operation, sitting is the main cause of pain, but I find if I stand for too long, that can be almost as bad as sitting. Thankfully, walking is mostly pain-free, and can often relieve the pain. On a working day the pain starts as a barely perceptible dull ache, like a pea sellotaped to the bottom of my spine, and slowly becomes a lump of lead, but the focal point still seems to be the new end of the coccyx. My appointment with the surgeon is in 2 days (brought forward by 1 month at my GP's request). So, am I on the road to recovery? If I am, I must be in a traffic jam.
Nothing new to report. I'm to have a scan but I don't have a date for it yet. My surgeon still says I may yet make a full recovery - it just takes time. I think not.
I seem to have improved over the last two or three weeks, and feel as though I am at last back to where I was before I had the operation, i.e. mostly pain-free if I avoid sitting. I don't expect any more improvement, butt only time will tell. Still no date for the scan yet.
No improvement - if anything, slightly worse than last month.
7 months and 1 week
This last week has been bad. I'm in almost constant pain. I can't seem to get comfortable in bed. I seem to have a new pain about 1" above the regular one. I've still not been given a date for a scan.
I'm pretty sure now that surgery has not worked for me. Perhaps the surgeon was too cautious in removing only about half of the coccyx. So much for happy endings.
My first surgery was 19 Feb 2002.
The bottom two (loose) sections of the coccyx were removed, but without any improvement. Not that I was in a great deal of pain; if I severely rationed my sitting, there was no pain to speak of. Butt I wanted the sitting part of my life back. The crazy thing is, my surgeon had planned to remove 3 sections - right back to a supposed arthritic joint - butt removed only what was loose. So, a good 18 months on, I'm going back under the knife. Will it be successful this time? Only time will tell.
2nd Surgery - Day 1 (9 Sept. 03)
I was first on the list and had the op at about 9 am. As before, I asked for a cordal (epidural) as well as the general. When I came round, the surgeon told me that the 3rd section WAS slightly loose. I was back on the ward for 9.45 - no pain, just a little groggy. I must have slept a little, as it was soon lunchtime. I'd asked if I could go home the same day - I find hospital beds very uncomfortable. I ate a good dinner at 6 and went home at 7, lying on my side on two sleeping bags in the back of the car.
Having a lazy day, eating, reading, sleeping, typing this. The pain's pretty much as the first time; bearable, with the help of some paracetamol. Walking seems a little easier than I remember. I think I need a laxative.
I removed the dressing myself, and took an upside-down look in the wall mirror. Practically no visible bruising this time. Last time, my butt could have been framed and hung in the Tate Modern. The laxative worked - 3 times! No, it didn't hurt. In fact it took away some of the pain. I find it's best to complete the mission standing up (Dambuster's theme tune optional). I think I'll have my first shower this evening. I'm sure to get the wound wet, butt I'll have my wife standing by, ready to give me a blow-job with the hair dryer.
I think the shower and blow dry must have shrunk my stitches; they've been feeling more like staples - the big ones that hold cardboard boxes together. Managed a little walk along the road today though. I even overtook two snails. My hips are getting sore from lying on my sides. I lie face down a lot. If I drop something on the floor it stays there until someone else picks it up.
Days 5 & 6
Seems to be getting more painful (it did last time). Hopefully it's just the stitches biting.
I'm assured that, wound-wise, everything looks fine. I'm exceeding my painkiller dosage slightly and groaning regularly for maximum sympathy.
Had the 6 stitches removed this morning. My wife came along to lend a hand (two hands just ain't enough). It hurt, butt I knew it would. They were 'very tight', apparently, butt I'm 'healing nicely'. I'm to keep the area well rinsed with warm salty water. It's nice to be rid of the stitches, butt I'm still hurting. Though I find it's easy enough to deal with pain, if there's nothing else to deal with. The salt water helps.
Days 9 to 11
Taking fewer painkillers. The pain's usually worse in the evening. I think it's nerve pain - wiggly worms squirming about under the skin, or a burning sensation.
Days 12 & 13
Still quite sore but walking better.
3 weeks post-op
Still sore at times but slowly improving, and doing slightly better than last time, I think. As ever, I'm finding things to do to keep me on my feet - best of all, water-colour painting. It's completely absorbing and if I'm hurting, I soon forget about it.
5 weeks post-op
Week by week, I'm improving; stopped doing the funny walk, and able to go up the stairs two-at-a-time again. I find I can lie comfortably on my back for long enough to fall asleep, though if I do, I wake up feeling quite sore. I'm walking further each day - I'm probably good for about 3 or 4 miles now. I think it's time I tried sitting - maybe tomorrow. No plans to return to work for at least a couple of weeks yet.
People are beginning to ask if the operation was a success. I tell them I may not know for a year or so. I've learned to be a patient patient (it's 3 years this month since my coccydynia started).
7 weeks post-op
I've begun to experiment with sitting, and so far had fairly good results. Yesterday I drove the car for 4 minutes, and today I sat for a total of about 8 minutes. Still using my coccyx cushion though. Butt I'm cautiously optimistic. (I've learned to be cautious, as a bad day can easily follow a good one)
10 weeks post-op
Last week I saw my surgeon. I made his day by taking my cushion and sitting for two minutes. I sit for meals now and I'm driving again, and I'm off back to work tomorrow (walking though, not driving). Yesterday, despite two half-hour drives, an 8-mile hike and sitting for dinner, I was almost pain-free and took no painkillers at all. Today I've felt a bit sore and made things worse by going for a haircut, so taken a couple of Ibuprofen.
3 months post-op
Going back to work set me back a week or two but I'm back into my usual routine now. I still have good days and bad days, though the good days seem better than before and the bad days are fewer and not as bad as before. My friend, Rory, thinks I'm well on the road to recovery. I hope he's right, but if he is, I'm thinking it'll be a long road and that I'll need to stop for petrol a few times along the way. Butt the bottom line is: I've got over this operation much quicker than the first one, and though my sitting time is still rationed, I am, week by week, sitting a little more (but always with the aid of my cushion).
4 months post-op
Week by week I notice small improvements. The main thing is that when I gently 'push the boundaries' by sitting for longer (still with my cushion) any discomfort/pain is soon gone, i.e. no lingering pain later. As ever, the best place to sit is the driver's seat of my car.
Not doing too well, I'm afraid. Since about 4 months and 1 week, I've noticed I have more discomfort/pain from sitting - not a serious flare-up, but enough to make me realise that progress can stall, or even retreat, for a time. So I recon I'm back to where I was at about 3 months.
The minor flair-up lasted about three weeks. Now I'm back on track, I think. Having read some of the recent postings, I'm reminded that there are many people who would be glad to be where I'm at - still rationing my sitting, but close to pain-free - but I'm still well short of my stated target of 'getting the sitting part of my life back.'
After that last setback (see 5 months) I was thinking: this is like Snakes and Ladders; improving step by step, or rung by rung, then sliding down a snake, back into discomfort/pain. Now I'm thinking the same again. Only a week ago, I was doing great, sitting for two or three hours a day. But I must have been overdoing it, as I've slid down another, very long, snake and lost about four months' progress.
Perhaps more time will make a difference, butt I think not; I've not slid down any more snakes, but I don't seem to be climbing any ladders either. All I can say is: the second operation was an improvement on the first, butt butt butt, I'm still standing to type this.
Well, 2 months on, and after being made redundant, butt finding a similar job almost immediately, I'm not doing too bad; despite having to travel 3 or 4 miles to work (as opposed to a 5 minute walk). It's a desk job butt with a fair amount of legwork attached, so it's just a question of balance (a little sore foot versus a little sore butt). I can't claim much in the way of improvement, butt at least no 'snakes'. My surgeon and I remain cautiously optimistic. (Me more cautious than him).
Yes, time flies, and a whole year gone. And I'm really not doing too badly at all; far from cured, butt a lot better for this second operation and, apart from a current flare-up, still improving. No significant pain, and, pre flair-up, sitting for up to four hours a day now. As ever, there's still a connection between bowel and coccyx (or what's left of it) - keeping it empty is the best policy - and that's as good as excuse as any, for a daily pint of Guinness.
All the standing (almost four years of it) has made me fitter and strengthened my lower back, so that the lumbago I've suffered from for over 30 years is much less of a problem.
I think I'm continuing to improve, though it's hard to tell at the moment as I'm out of work again and therefore doing lots of coccyx-friendly things, like decorating and gardening. So no pain and hardly any discomfort - maybe a little after driving for an hour or two. I saw my surgeon for the last time (I hope) yesterday. We're agreed there's nothing more he can do for me, so I'm discharged.
Old habits die hard though: I'm still standing at my computer, standing to eat breakfast, sitting on my hip to eat most other meals, and always using my cushion when I sit - to do otherwise would seem odd. Maybe I've evolved into a new species: Homo-erectus-most-of-the-timeus. I think I may leave the cushion in the car when I go for job interviews though, as I think it's hampering my chances.
In short: I'm glad I had the second op, and with other controls (cushion, plus only sitting when I have to, or want to) I'm (dare I say it?) pain-free.
First the good news: I've found employment. Now the bad: Driving to and from work (approx. 35 minutes per journey) plus sitting, for at least part of the time, at work (it's a desk job) has brought the pain back with a vengeance. Even sitting on my hip, with my feet up, causes a burning pain at the bottom of the spine.
I've been back to my GP (family doctor): "Okay, it's been over 4 years now. We've tried waiting. We've tried pills. We've tried injections. We've tried surgery. Butt I still have a major PITA if I behave like a normal person and sit down on a regular basis. Where the f**k do we go from here?????????"
Naturally, she didn't know the answer. She's going to get back to me. I'll keep you posted.
She got back to me with a recommendation, from my ex-surgeon, that I sit less. Wonderful! I saw another GP. He agreed to try a neurosurgeon - I'm on the waiting list. Now, I don't mind waiting lists. I just wish I could get to the end of one and find something worth waiting for. It'll be 5 years in October since that odd little pain at the tip of the spine began to germinate and grow.
Meanwhile, my wife takes me to work most days or I get a taxi (the drivers don't mind me reclining on the rear seat); though I can cope with driving a couple of days a week if I go early and miss the worst of the traffic. And at work I'm very busy, so the days fly by.
Not much to report. I've been reading the t-bones postings re surgery - the debate goes on, and on…
I'm glad I tried surgery and don't feel any worse for it, butt I'm still 'compensating' i.e. standing a lot and using a cushion to sit, and lying in the back of the car on long journeys. Doing nothing / relaxing is the hardest thing to do, though I sleep well - even on my back sometimes. If I stay on my feet and keep moving I'm fine. I'm still waiting to see a neurosurgeon. Meanwhile I'm seeing a physiotherapist, as I have tendonitis in my left Achilles tendon.
Yes, it's three years - I guess I've been neglecting my journal. My tendonitis failed to respond to the physiotherapy, but after one year the pain went away - if only the PITA would do the same.
I finally got to see the neurosurgeon butt he had no answers other than to refer me to a colleague in Liverpool. He gave me a thorough examination - too thorough - it made me sore and the soreness gradually got worse to the point where a planned holiday in Greece had to be cancelled. So there's a warning: don't let doctors prod and poke; just point to where it hurts and say, "That's where it hurts, doc."
Meanwhile a new GP I'm seeing thinks I have nerve damage and therefore false pain messages. He put me on Gabapentin to interrupt the messages - it made no difference, even at max dosage. So now 'we' are trying Capsaicin cream. Anything's worth a try.
3 ½ years
The Capsaicin cream didn't work, but my new doctor suggested Amitriptyline tablets and, at last, I have something that makes a difference: I take two 25mg tablets at bedtime, sleep like a log, and stay almost pain-free and able to sit a lot more. I'm also taking Glucosamine supplement; which may be adding to the good result.
4 years +
I'm still doing well on the Amitriptyline (now one 25mg tablet per day) and the Glucosamine supplement, and gradually sitting more and more; so I'm no longer pestering my doctor for answers.
If you came here looking for answers, and you haven't yet tried Amitriptyline and/or Glucosamine, maybe you should. I'd be pleased to hear from anyone having success with either.
I do it standing up