Jon Miles - contact me here.
The short version of my story
In 1993 I injured my coccyx in a bicycle accident. At first I tried to ignore the pain and carry on with my life as normally as possible, expecting my injury to heal by itself.
When I eventually went to see my doctor, I was put on oral NSAIDs (painkillers), with no effect. I had an x-ray, MRI scan, examination by colorectal surgeon. I had physiotherapy, which made it worse. I tried TENS, which had no effect.
I was sent to a pain clinic, which recommended NSAID suppositories and anti-depressant drugs to dull the pain. They did dull the pain, so the doctor told me to sit longer, which made my problem and my pain worse.
I was given a semi-permanent nerve block (freezing nerves). It worked, but only for 3 days. I had corticosteroid injections, which reduced the pain for a few weeks, then it came back.
At that point I felt that I could not continue working in my condition. I did not want surgery, but felt that I had no alternative. I had the coccyx removed in 1999. Recovery was very gradual. It took about three years to reach 80% better than before the operation, and a couple more years to reach 90% better.
What I wish I had done at the start, knowing what I know now:
I would take the problem seriously right from the start:
If manual therapy was not successful, I would probably try corticosteriod injections. If these did not work, and I was facing surgery, I would make sure that it was done by a surgeon with experience and success with this condition. As I live in southern England, I would travel to Paris to see Dr Maigne for investigation and treatment.
If I was still in pain a year or two after surgery, I would look into the possibility of using spinal stimulation to avoid feeling the pain.
Me and my coccyx
Background I am a physicist living south of Oxford, England. I was born in 1949, and I am married with two grown up children.
1993 I rode my bicycle over a drop, lost the pedals, and fell heavily with my coccyx on the tip of the saddle. It was very painful, especially when sitting on soft seats. However, I altered my life as little as possible, expecting the pain to go away in time.
After 3 months the pain was less than at first, but it was painful when sitting for a long period. I had no pain when standing, walking, lying, defecating. It was no longer improving, so I visited my doctor. When he manipulated my coccyx it was uncomfortable, but did not hurt as much as sitting. The doctor advised me to try oral NSAIDs (painkillers). They gave no improvement.
1994 I found myself sitting in awkward positions (like on one buttock) to relieve the pressure. My back was becoming very painful. I visited a chiropractor, who relieved my back pain, but had no effect on my coccyx pain. I went back to my doctor, who referred me to colorectal surgeon. He was unable to find the cause of the pain, and suggested referring me to an orthopaedic surgeon.
1995 The orthopaedic surgeon told me this type of pain is difficult to investigate or treat. He ordered an MRI scan - which was normal. He suggested I try a physiotherapist. My physiotherapy started with ultrasound and gentle manipulation of coccyx. The treatment was interrupted by a holiday: walking, cycling, almost no sitting. At end of the holiday, the pain when sitting was greatly reduced. I returned to work and to physiotherapy. The physiotherapist pressed harder on my coccyx, resulting in a sudden return of pain - as before the holiday. I had x-ray and ultrasound investigation of abdomen - normal. I tried commercial TENS equipment - no effect.
1996 I found a paper in the Lancet [a medical journal] quoting a 70-80% success rate in Leicester, treating coccydynia with cortisone injections and manipulation. I showed it to my doctor, who referred me to the local rheumatology clinic. The rheumatologist told me the Leicester treatment might help, but it was not certain. He had no anaesthetic list, so suggested it should be carried out by an orthopaedic surgeon. My doctor referred me to the local orthopaedic clinic. I saw a different orthopaedic surgeon from before. He was unsympathetic, and could not find any notes about me or the letter from the doctor. He suggested I should be referred to the Oxford Pain Relief Unit.
1997 I went to the pain unit, where the doctor told me the damage must be healed by now, and only the pain is left. [This advice was quite wrong, though I did not know it at the time. It is clear from research that a coccyx joint may be damaged, and keep dislocating for years.] The doctor suggested trying pain treatments in turn, starting with milder ones. I found that NSAIDs in creams or gels had no effect. NSAIDs in suppositories had some effect. Amitryptyline had some effect.
1998 By now I was using both NSAID suppositories and amitryptyline, but the pain level rose back to what it was, and more, and lasted longer. The pain unit doctor gave me an injection of local anesthetic around the coccyx to find out whether that gave temporary relief, which it did, showing the coccyx was the cause of the pain. My pain on sitting was now preventing me from sitting down at all at work. The pain unit put me on a pain management course, which gave some help in coping with the pain. The doctor gave me cryoanalgesia (freezing the nerves). This relieved pain, but effect of it wore off after 3 days.
The drugs had not helped me, and the side-effects were very unpleasant. I decided to come off drugs. The pain was not much worse, and I felt much better without the drugs. I asked my GP to refer me to one of the doctors in Leicester who was an authors of the medical paper I had found earlier. He did so, and the Leicester doctor gave me a corticosteriod injection in his office. Initially the pain was worse, then reduced after 5 weeks waiting.The doctor in Leicester told me that he would find a surgeon in Oxford to give me any further injections.
An Oxford surgeon gave me an a corticosteriod injection with manipulation under light general anesthetic. Again the pain was worse initially, but it reduced 6 weeks after the injection. The pain was now about 30% of the level before the two injections - nearly back to how it was before I took amitryptyline. I started sitting for short periods. I took my family out for a meal! I increased sitting, up to 2 or 3 hours a day, and the symptoms got worse again - back to how they were before the injections. I had to reduce my sitting again, just for travel and meals. After several months of standing all day at work, my feet became very painful. I started kneeling on a chair part of the time, and took a camp bed into the office, to lie down when I was reading. I was also getting what they call 'wind-up pain' at the pain clinic. It is a hypersensitivity of the skin to touch or pressure. I got it on the buttocks or hips at different times. I used to have to be careful about the clothes I wore and make sure there were no wrinkles in the sheets I lay on.
I felt that I had now tried everything short of surgery, and could not continue the way I was living. My life was falling apart, and I would either have to have surgery or to stop working. My orthopedic surgeon agreed to surgery. I thought that there was a good chance of success, but I realised that there are no guarantees. My surgeon has removed 4 coccyxes before, all resulting in reduced pain.
4 days after surgery
I'm now lying at home on the bed on a 'pressure relief' mattress topper (eggbox foam), with the cat asleep beside me. My wife's at work in the junior school nearby, our daughter's at school and our son's away at university. And I'm lying on my side exposing myself, to let the air get to the wound. So long as I lie like this and keep taking the drugs (diclofenac suppositories and high strength coedine/paracetamol pills) the pain's not bad (and sometimes disappears altogether).
My surgeon (James Wilson-MacDonald) had told me that the operation was not technically difficult and takes about half an hour (he has done 4 before). He said they give a shot of painkiller and one of antibiotic before they start.
I woke up in the recovery ward plumbed in to a saline drip and a pain pump (one of those devices where the patient presses a button to get a small shot of morphine). I had to press it 15 times to quell the pain. My wife and daughter came to see me in recovery. I kept dozing off while I talked to them, and being woken up by an alarm because my pulse dropped below 40. The night was fairly restless, but I felt pretty good the next day and could get around trailing my drip-stand behind me. The surgeon said it had gone well, and if I felt OK I could go home, so I did.
Since then I've been lying around. I get a bit of pain sometimes, especially if I'm late with the drugs. Yesterday I toddled slowly down to the local health centre for the nurse to check my wound. Normally it is a 5 minute walk, but it was more than 10 now. She told me it looked OK, which was a relief as I had been worrying about wound infection.
I had asked the surgeon if I could have the coccyx, and he gave it to me in a jar of formalin.
Pictures of my coccyx after removal - from back and front before cleaning . . . .
and after cleaning . . . (all ruler markings in centimetres)
10 days after surgery
I'm making progress. I feel like I'm healing up inside now, as I have been able to decrease the medication and I feel more mobile. I caught myself taking the stairs two at a time yesterday. I tried sitting down for 10 seconds, and it didn't hurt. But I'll leave it another week or so before I try any longer.
I was worried about the external healing, as the wound is still weeping and there is a break in the skin along part of the join. But I saw my local doctor today, and after he checked me he said it looked fine for 10 days. He said cuts in that area may take a long time to heal, but the skin there is very resistant to infection (it has to be). To help it heal he suggested salt baths, drenching it using the shower head, and drying with a hair dryer.
21 days after surgery
Progress is slow but steady. I have now given up the pills during the day, and just have the diclofenac at night. This is less medication than I was on before the op, but then I was going in to work before. It hurts to sit down, but this is an immediate pain due to the surgery, not like the slow growing deep ache before. Only time will tell whether that has gone. I now sit about 10 minutes a day to eat dinner, using a wedge. When not sitting I sometimes have some pain, sometimes just a pulling sensation, and sometimes nothing! One kind of pain that went a few days after surgery was what they call 'wind-up pain' at the pain clinic.
I went swimming a few days ago (I checked with the doctor first). Before the op I used to go once a week and swim 40 lengths (1000 metres), as the only exercise that didn't hurt my bum or my aching feet, after standing most of the day. (My feet still ache at times - I hope I haven't done them any permanent damage.) This time I did 10 slow lengths, mostly using my arms, with breaks for recovery. I had to go to bed early that evening. That's another slow process - getting my strength back. But I suppose that's just having an operation at nearly 50.
I'm thinking of going in to work part time in a week or two. Of course things are piling up there, and there are some things that it is more trouble to pass on to someone else than to do yourself.
1 month after surgery
After 3 weeks the pain had gone down enough so that I could give up the last of the medications, the diclofenac suppositories. I felt pretty good for a week after, and was optimistic that I would be back at work soon. However, after 4 weeks, the pain got worse again. I then remembered that the diclofenac took about a week to work after I started taking it, so I suppose the increase in pain now is due to a similar delay on stopping. However, the pain's not bad, and it's nice to be off drugs, so I'm sticking with it.
I think at this stage the pain is still worse than before the operation, though it is difficult to be sure, as before I was taking medication and sitting. I am seeing the surgeon in a couple of days, and if he gives me the OK I will be going back to work 6 weeks after the op. My employers promised to get me a sit/stand desk (one that you can move up and down) so that should help. Even so, I may need to start taking the drugs again when I am back at work. The medical papers say 3 to 5 months average time for the coccyx pain to go after surgery, so I must try to be patient. (AAAGH! My patience and endurance has been strained to breaking point so many times over the past year, I should be used to it now.)
2 months after surgery
At two months I feel a bit less pain each week, and I have now passed the point where I am better off than before the operation (Hooray!). Progress is still slow but steady. I was surprised at how long it took me to get my strength and stamina back. Even now I feel that I am only about 80% of the way there. But I can manage 1000 metres (40 lengths of the pool) again now.
When I visited the surgeon for a check-up, he said the tissue around the area was still 'indurated' - which means stiff. He's right - if I feel it, the muscles either side of the wound feel as if they are tensed. Apparently this is normal, and goes off. I have now found out that the gap in my scar was due to the 'dissolving' suture not dissolving. At 6 weeks after the op, a nurse fished out an end, and pulled 6 or 8 centimetres of suture out. It went all the way up the scar, and after 6 weeks inside me it was still like a length of nylon fishing line. According to the nurse, surgeons get the impression that these dissolving stiches work better than they really do, because nurses keep removing the bits that don't dissolve.
I've been back at work for 3 weeks, mornings only. I still don't sit down at work (I didn't before the op). However, they're supposed to be getting me a sit/stand desk - one you can move up or down, with everything on it - so when that comes I will be able to alternate sitting and standing. So, I am not out of the woods yet, but I'm going in the right direction.
3 months after surgery
Well, it's continuing slow but steady improvement. I can now sit on an upright chair, leaning forward, for a couple of hours without any increase in pain later. That is a great improvement on how I was before the operation. I am also in less pain when not sitting now, 0 to 1 on a scale of 10. I'm taking it very slowly to increase the sitting time, because of all the times when sitting too long left me in increased pain for days after.
The worst thing is still driving a car - that is still worse than before the operation. The operation seemed to move the pain back and up. But it is still decreasing. Mind you, I haven't tried driving a car for the past 10 days, because my car was stolen from an Oxford car park. I'm surprised any self-respecting thief would bother with it - it was a boring old family car. The police found it, damaged, and the insurance company have written it off. Being without a car for a few weeks doesn't bother me too much, as I go into work in a car pool, and we can get lifts or buses to most places.
I went to see the surgeon yesterday. He was pleased with my improvement, and told me that I would probably go on improving for a year after the operation. The more I hear about this operation, the more I realise how slow recovery is.
4 months after surgery
It's been a month of ups and downs for me. I got a Volkswagen Golf, by the way, and its firm seat felt quite good without a cushion, but I didn't dare try it with no cushion for more than 5 minutes. At the beginning of the month I was feeling better, and started to cautiously expand what I did. Everything seemed to be going fine, till I drove 20 minutes to pick my daughter up from the railway station. It felt OK at the time, but I suffered extra pain for a week after it. Very depressing. This delayed reaction makes it so difficult to know whether you're doing any harm.
I decided that the cushion on top of the car seat was raising my bottom up so that the bulge in the back of the seat (intended to fit in the small of your back) was pressing on it. So I got the knife out, and cut a plug of foam out of the car seat to turn it into a tush cush (details here). That seems to help. A week ago I drove into the local hills (10 minutes each way) and went for an hour of mountain biking - which was nice! It's strange - no-one else I know with coccyx pain can ride a bike, but I have no problem.
After all that, I think my situation is much the same as it was a month ago - which I reckon is about 50% less pain than before the operation. Which is a great improvement, and well worth going through the operation for, but it would be sooo nice just to sit down without pain or worry. You know just how I feel!
5 months after surgery
Three weeks ago they delivered a sit/stand desk and a fancy office chair for me at work. (4 months after the operation! - but they got them, which is more than many employers would do. The chair was about 750 dollars and the desk about 1500 dollars. I'm glad I wasn't paying.). At that point I started staying all day at work - up to then I was working at home in the afternoons.
I find the desk more help than the chair. It is one where the weight of what you have on the desk is balanced by springs, and you unlock it and pull it to any height you want - it only takes a few seconds. It is made by EFG in France, who have a small web site which does not show the desk. I try to vary my position often, changing from standing to sitting to kneeling (on the base of a backless chair) to lying. I think that changing position and stretching exercises help to stop you getting locked into these awkward positions.
I get a stiff back from time to time - I think it's because I'm more comfortable leaning forward, so in a meeting I will be leaning on my elbows all the time. I go to a local osteopath, who sorts it out. I tell her to keep well away from the (ex-)coccyx area.
I find I can avoid any real pain pain in the bum - the most I get is discomfort - if I stick to my rules. These are:
It's not easy sticking to these week in and week out. But if I break one of the first 4, I am punished with a week of extra pain. I feel that I am a bit better than last month, but change is very slow now. But I can get on with my life again, which was impossible before the operation.
6 months after surgery
Progress is slow, but despite ups and downs it's going in the right direction. At first after the surgery I could feel an improvement each week, now it's each month. I can now drive for 20 minutes at a time! This is important for me as that's how long it takes to get to work. I'm in a car pool, but it's difficult if others are away. I've put a slab of foam rubber on the back of the car seat from my waist to my neck, so my bottom is not touching the back of the seat at all. And of course I cut out a slot in the base of the seat.
In the months before the operation I was feeling desperate - as if it was only my will-power keeping me going, and I was hanging on by my fingertips. I decided that if the operation didn't give me any relief, I would have to give up work. Now I feel much happier, and I can face the future.
7 months after surgery
I spent half of the past month feeling depressed, because I had a flare-up of pain which didn't pass off after a week, as it usually does. It's not that the pain is intolerable - I still felt better than before the operation. It's that it's going the wrong way. But half way through the third week, I realised something different was happening - sensation was returning to areas around the scar that had felt dead since the operation. I had some strange sensations as the feeling returned. Sometimes I had stabbing pains, and part of the time I felt as if I had a book stuck between my buttocks. And I found that if I ran my fingernails over one patch of skin, it gave me a feeling like nausea. Wierd.
Anyway, the flare-up of pain has passed off, and my bum feels more like normal than before, though the process of feeling coming back has not finished yet. I'm taking it as a good sign that the tissue is still healing itself. The area without feeling before (around the base of my spine) was also the area where pressure for any length of time would set off a flare-up of pain.
8 months after surgery
The odd sensations I got as feeling was coming back carried on for more than a month altogether. Since they stopped, a couple of weeks ago, I haven't had any flare-up of pain that lasted more than a couple of hours. That's a great improvement on before, when I used to get flare-ups lasting a week sometimes.
Mind you, I am still avoiding anything that I think might set it off again. I still avoid sitting down when I don't have to - I am typing this kneeling on a cushion, as I have done for more than a year now. And I am very slowly weaning myself off the drugs - I don't want to do it too quickly in case it causes a reaction. This problem has made me a very cautious man!
So, I'm still getting better slowly. It's difficult to put a percentage on it, after so many things have changed. I would guess I'm 60 or 70% better off than before the operation. I'm still hoping for more, but I could live with this without complaining.
9 months after surgery
Last month I said that I was avoiding anything that might set off the pain again. Then the man I car-pool with had to go into hospital for an operation to repair a disc in his back. The first week I drove in to work 3 times and was fine. The second week I drove in 4 times and was fine - until the 4th day, when a flare-up started again, and lasted a week again.
So I decided to get a motorbike. In Britain you have to take a day's training before you can take a bike on the road, and then you're limited to 125 cc until you've passed your test. I took the training, and bought myself a little Honda C90 (does that count as a motorbike?). It has a flat seat so I can sit well back and lean forward. No problems. I'm feeling pretty good again now.
10 months after surgery
For the past month I've been puttering around on my little Honda C90, to avoid having to sit in a car seat. It's served me well, even if it is a bit feeble. If I need to keep on using a motorbike I'll get something more powerful (or convert the driver's seat of my car to a motorbike seat?). The past week or so I've cycled in to work several times. My route is cross-country, and in the winter it's too muddy, but it's dried up now and it's a joy. Once I get out of town I'm on bridleways and little lanes, and often the only other traffic is the horses being ridden out of the stud farms and racing stables to go for their exercise.
I've still been improving. The area with no sensation around the top of my scar has shrunk again. I can now sit for a total of 3 or 4 hours a day if I don't sit back. But I don't sit if I can avoid it, as it can get tiring, avoiding sitting back. I have had about 6 weeks with nothing more than occasional discomfort now. But a couple of days ago, when we had some friends round, I set off a minor flare-up. I was lying across a bean bag (if we didn't have guests I would have been lying on my side on a setee). I must have been careless in the way I lay, and when I got up I knew something was wrong. I get a strange tingling irritation and hypersensitivity around the area. I think it must be due to the minor nerves being cut during the surgery. It's nothing like the pain I had before surgery. Still this flare-up has been less than previous ones, and seems to be fading faster. Two steps forward and one step back, but I'm getting there slowly.
11 months after surgery
I try to avoid driving for longer than half an hour, because that has caused a flare-up of pain in the past. I wasn't sure if it still would, but I wanted to be careful. But I was caught in a traffic jam, and found out that it still does cause a problem. I must stick to my half hour.
On the other hand, I have been sitting longer. I find that on a reasonable padded upright seat I no longer need a coccyx cushion. I attended a two day meeting that meant sitting down for 7 hours each day. Of course I would have stood up or left if I found that it was causing a flare-up, but I was fine. Except that I was pretty tired - I was leaning on a table or sitting straight upright all the time, never leaning back. So I was pleased with myself. I am still not sitting if I can easily avoid it, but I feel I don't have to worry any more about sitting up.
I also did a bit of rock climbing and abseiling this month. It's 30 years since I did any climbing that needed a rope, and I've never abseiled before, but the chance came up to have a go under the guidance of a professional, so I took it. It was a bit tense walking down the rock backwards, but I was tied on well, and it was a really good experience.
I hope you're feeling well, and thanks to everyone for their good wishes. The kindness and support I have had throughout this saga have made a big difference in keeping me going. Keep smiling!
2000-05-17 - 1 year after surgery
It's a year today since my operation, so I will compare my situation now with what it was before the operation.
Before the operation:
A year ago, I had tried all the remedies I knew of, and they had either not worked or were only temporary. I was on 100 mg diclofenac suppositories and 8 Remediene Forte tablets a day. The remediene, which is a narcotic opioid, had strong side effects, including constipation and muddying my mind. The drugs masked most of the pain, but I had some minor pain nearly all the time. I avoided sitting whenever I could (which led to painful feet) and did not drive for more than half an hour. I felt that was getting no enjoyment out of life, lying in a daze most of the time I was not working. I felt I could not carry on working like this, and would have to give up my job if I could get no improvement in my condition. Having the operation was the only alternative I could see to resigning my job.
One year later:
Now I am on very little medication: a low dose of prothiaden which may or may not be having any effect. I can now sit upright or leaning forward for 7 hours a day if necessary, but I still cannot drive more than half an hour. Normally I don't have any pain, just occasional discomfort. My life is mostly back to normal (I can go out for a meal, for instance), but travel remains difficult. I use my motorbike, a train (sitting where I can lean forward, or standing) or get a lift from friends or use a taxi (lying down in the back of a taxi causes some surprise). Putting a figure on the difference from a year ago is very difficult. My guess is 70-75% better.
2001-08-17 - 2 years 3 months after surgery
Change has been slow over the last year. First of all, following the recommendation of the Pain Relief Unit doctor, I increased my dose of the tri-cyclic anti-depressive Prothiaden (dothiepin) from 25 mg to 75 mg a day. It has a side effect of making it hard to wake up and get going in the morning, which wore off after a couple of months. It didn't have any noticeable effect on the frequency of flare-ups.
Sometimes a flare up is caused by something obvious, like having to sit somewhere uncomfortable, and sometimes there is no obvious reason. These flare-ups are not particularly painful, though they are distressing. The skin on the back of my hips becomes hypersensitive, and the general area of the coccyx uncomfortable. The only way I can shake it off is by avoiding anything that causes any pressure on my buttocks or back for several days.
I can sit leaning forward in meetings etc, if I have a good cushion, for a couple of hours at a time. But unless the seat is just right, I notice that my thighs get uncomfortable and inflamed quite quickly, and that this can lead on to a flare-up. I didn't want to go back on to anti-inflammatory drugs, so I decided to try a remedy that has been proved effective in arthritis - another inflammatory condition. Fish oil containing omega-3 oils has been shown to improve arthritis. I was already taking 3 grams a day of fish oil (containing 1 gram of omega-3 oil) on the recommendation of Sally Cowell, and on the recommendation of a colleague of my wife's who gets arthritic pains. After reading up the literature on arthritis, I increased my dose to 3 grams of omega-3 oil a day (10 large capsules each with 1000 mg of fish oil in, as the fish oil is only 30% omega-3 oil). I have been taking this for 9 weeks now, and the medical papers say that improvement takes 12 weeks to show, and can increase in effect over a year. So I don't know yet how effective it has been.
A few weeks ago I had my last visit to the Pain Relief Unit in Oxford. The doctor told me that the fact that the hypersensitivity no longer appeared on the left was a good sign. He accepted the use of the fish oil as reasonable, and suggested that I consider taking 1 gram a day of glucosamine as well, as trials have shown that this is better than placebo in reducing inflammation. I have decided that I will wait a few weeks before trying this, to see the effect of the fish oil first. (The glucosamine did not help.)
My wife and I went on holiday to Belgium recently, me carrying my cushion everywhere with me (now just a plain firm foam cushion). All the travel was by train. I found I was able to sit out on the pavement cafes for a couple of hours every night, and travel by train with no problem.
Over the past year, feeling has been gradually returning and becoming more normal in the area around the scar, particularly on the left side. Over the past couple of months, the flare-ups have been only on the right side! And I can go a couple of weeks between flare ups sometimes. To sum up, I have had improvement over the past year, but it has been very slow. I now reckon I'm 80% better than before the operation.
2002-11-03 - 3 years 6 months after surgery
It is now nearly three and a half years since I had surgery to remove my coccyx. Recently my wife and I had two weeks holiday in the Peak District (Derbyshire, UK), mostly walking and cycling. At the end of this, I found that my remaining pain was substantially reduced - maybe now 90% improvement after surgery. But after two weeks back at work, I was back to how I was before the holiday (80%).
It is difficult to know why I had the improvement and why it later disappeared. Comparing what I did on holiday with what I do at work, there are not great differences. On holiday I walked and drove more than when at work, cycled and sat about the same, kneeled less.
There are a couple of things that I find very helpful to keep the remaining pain under control. One is fish oil capsules, as used for arthritis. I take 9 a day of 'EPA fish oil concentrate 1000 mg', which corresponds to nearly 3 grams a day of the EPA and DHA that reduce inflammation. And I take a low dose (75 mg a day) of Prothiaden (dothiepin), a tri-cyclic anti-depressive drug which has a side-effect of dulling chronic pain. Doctors usually prescribe another tri-cyclic, amitryptyline, because it is cheaper and has been tested more, but it has worse side effects than dotheipin. All the anti-depressives take a few weeks to work, and the side effect of feeling drowsy in the mornings is worst in those first weeks.
I also find that the car I have now makes driving a lot more comfortable.
2004-02-15 - 4 years 9 months after surgery
Not a lot of change over the past year or so, except that I have reduced the dose of Prothiaden to 25 mg a day, without increasing the pain. I continue to avoid sitting when I don't have to, but sitting for a few hours at a time is no problem, so long as I can lean forward. If I have to lean back for a long time, it causes strange, unpleasant sensations on my back and thighs, which can persist for a day or two. I attribute this to nerve damage.
If I stand still for too long, my feet hurt, and carry on hurting the next day. I think that this was caused by standing all day for months on end before my operation. So long as I make sure that I avoid the behaviours that cause problems, I don't suffer any pain, and only occasional discomfort.
2004-09-19 - 5 years 4 months after surgery
After reading the book The Biology of Acupuncture, by George A Ulett and Songping Han (see the Acupuncture and electro-acupuncture page), I bought an LY257 stimulator. After using it for a couple of months, my pain level reduced significantly. Before using the stimulator, the pain level had been 80% better than before the operation, and improved to 90% better. The timing of this improvement could be coincidence, of course, and I might have got better without the use of this device. There is no way to tell. But I will, of course, continue to use it, hoping that it caused my recent improvement, and that it could produce further improvement. I have stopped using any drugs, but I still take fish-oil.
2007-07-03 - 8 years after surgery
I am still at about 90% better than before surgery. I do not take any drugs regularly, but long journeys can cause me discomfort, so I take painkillers beforehand. I avoid sitting when I don't have to, but I am alright in meetings of a few hours, or going out for the evening to a pub, restaurant, etc. At work I normally alternate between standing (I have a sit/stand desk), kneeling, sitting and lying on a camp bed behind my desk.
2015-09-27 - 16 years after surgery
I get a bit of neuropathic pain occasionally (that is, pain that comes from the nervous system itself, not signalling any damage to your body), in the form of a tingling pain across my lower back. It's not bad, discomfort rather than pain, but it's worrying, as I know it will get worse if I don't avoid sitting altogether for a day.
A couple of months ago I had a flare-up of this pain, that wouldn't go away even when I avoided sitting for a week. I found that using a TENS machine helped a lot. First it gradually reduced that tingling pain until it disappeared unless I sat down. Then I found that if I wanted to sit, I could sit for up to half an hour without setting the pain off, if I had the TENS running (electrodes placed either side of where my coccyx was) all the time I was sitting.
Note that this may not help for normal pain, and blocking the pain of, for instance, a dislocating coccyx, to allow you to sit for longer could make the underlying problem worse.