Ian - firstname.lastname@example.org
See also My injections and My surgery.
My first surgery was 19 Feb 02.
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 caudal (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 reckon 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 25 mg 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.
So if you came here looking for answers, and you haven't yet tried Amitriptyline and/or Glucosamine, maybe you should. I'd be please to hear from anyone having success with either.