Sally Cowell - email@example.com
Correspondence welcome at Sally Cowell, PO Box 477, Busselton, WA 6280 Australia
See also Fish oil cured muscle pains and Finding a good physiotherapist
Original posting, 2000-09-18:
This is a long letter so I will start with a summary. I am 61 and a bit overweight. PITA (Pain In The Ass) came on for no apparent cause. I've had physiotherapy (no lasting benefit) & steroid injections. The first 4 injections gave a little relief but only for about 3 weeks. Injection 5 & 6 given together gave 75% improvement and at 5 months are still holding.
I first noticed a discomfort with sitting in Aug 98. The pain was slowly worsened until in November 98I consulted a Doctor. I told her I had pain with sitting and it was worse as I stood up. She said the pain was caused from a higher place and ordered an x-ray. I saw a different Dr in the clinic for the result, guess what the x-ray was taken too high to show where the sitting pain was. Another x-ray, taken from the front lying down. This one produced the comment that I have good news for you, there is nothing wrong!!! However I still had the pain so a bone scan was ordered, guess what "good news nothing wrong" I had an ultra sound of the abdomen and vagina, more good news "nothing wrong". I now realise what they were looking for was cancer, I just wish they could give a hint it was frustrated thinking they did not believe me.
By Feb '99 things were getting pretty bad and I started physiotherapy, I had about 20 sessions. These involved ultrasound applied to the coccyx, and physically moving the coccyx. She put a finger in my anus and held the tip, this was mobilised while applying traction. There was no pain, the force used was 3 on a scale of 1 - 5. the result was immediate full improvement. This wore off in about 3 hours. I do not have medical insurance the treatment I have is free. The physiotherapist was not allowed to continue because I was not getting a permanent cure.
Aug '99, I had my 1st steroid injection. This was done by a radiologist with the help of CAT scan. I lay face down for 45 minutes and was not allowed to move at all. He injected Celestone & Marcain, a long term anaesthetic (3 days) and a steroid. The procedure was not painful, just the usual amount of sting expected with any needle When the anaesthetic wore off the pain was worse than before, but only lasted 2 days. This pain was caused by the physical injury of inserting the needle.
Aug '99 My name went on the waiting list for the Western Australian management Centre. The wait was 7 months. At this stage I realised my local Doctor would not discuss my coccyx pain as I had a referral to the specialist clinic. I asked could I see a Rheumatologist, while I waited for my pain clinic appointment. The answer was no because it would be doubling up on treatment.
At about this stage I started asking what was wrong with my muscles. I had an unusual amount of pain which lasted several weeks in any part of my body that got more than normal use. Wrist, hand, elbow, back, abdomine, knees and feet. I was always told there is nothing wrong. This problem was so bad I consulted 5 Doctors. I had trigger spots, but they said they could be caused by anything. Trigger spots are where muscles are attached to the bone, if a little pressure is applied the pain experienced is out of all proportion to adjacent areas. They are in places that would not normally get pressure so I did not know they were there, until I found about them from the internet.
Jan 2000 my pain was so bad I had to stand all day. I managed to see a Rheumatologist without my Doctors consent and he arranged a steroid injection. This time it was put at the tip of the coccyx. The Radiologist explained that he was injecting into different spots around the area. After these injections there is always an hour or two of no pain at all, then some discomfort until the 3rd day when the anaesthetic wears off and the pain is increased for 2 days. The benefit from this injection gave 50% improvement, lasting about 3 weeks, then tailing off, but still some benefit.
At about this time I found Jon Miles web page. WOW, what a bonanaza of information. Jon kindly sent me several replies to my questions. From Jon's page I learned about the stand & sit x-rays and had to visit 3 Doctors to find one who would order the x-rays, even then he 'gave in' because I pressured him.
I went to the appointment with a copy of Dr Maignes information of how it was done, without the authors name on it so the staff would assume it came from the referring specialist, it worked. I also took a plastic kitchen board. The seat they supplied me with was soft so I put my board on top. The x-rays showed a posterior luxation of approximately 30%. At last I had proof that there was something wrong. My x-rays are shown in files under Sally's T-Bone My appointment time with the pain centre had finally arrived, I took my x-rays along (in Australia we keep our x-rays) they said they would inject into the CO 2 & CO3 joint where the movement was as well as the one above which moved a bit also. Waiting time was 10 weeks. They also it was definite that I must have had an injury at some time. As a child I rode ponies a lot and of course had several falls. By now the pain was very bad and I felt waiting 10 weeks was not reasonable.
With the documents from the Rheumatologist I decided to have a steroid injection to tide me over the waiting period. With my husbands help I marked my most painful spot with texter pen. The Radiologist injected into the joint above the one shown on the x-rays with the luxation which was also above the texta mark on my rear end. Back to the Rheumatologist, for another referral for the correct joint. Would you believe he ordered it around the tip !!!. These 2 injections gave me partial relief until my appointment with the pain clinic came up.
The pain clinic gave me injections into the 2nd & 3rd coccygeal joints. This was done under image intensifier, I presume that is fluoroscope. The procedure was over in 10 minutes. Now that I had been injected into the joint with luxation the improvement is dramatically better, 70% and still holding at 5 months.
Update, 2002-09-05: 1 week to 1 year post surgery
1 week update. 30 hours since the last analgesic. Still some discomfort, 2 on a scale of 1 – 10. Bringing knees up in bed into fetal position, which stretches what ever attaches the new stump end to the anus, causes a lingering ache/pain (not sharp). I ease this by using a hot pad. Standing stationary also causes the same pain. Walking around gets blood flow back and helps. Sitting on the 'high rise' toilet seat is good, It hurts getting up from a standard height seat. The district nurse called a couple of times and won't be back again, she left some spare dressings. There is no oozing from my incision so I decided to take off my dressing and shower in the usual way. Before I start, I boil up a cup of water and mix it with ½ tea spoon of salt (nurses recipe). Letting this stand until sufficiently cooled. After the shower Geoff pours the salt water over the wound and pats dry the buttocks (Not the crease) when I'm dry in the surrounding area Geoff uses the hair dryer on the incision site and puts on new dressings.
Day 8 After dinner I was resting on the couch watching a drama on TV. There was a scene of an airplane flying in to a building, then another, I said to Geoff, "that is bad fiction, no one would believe 2 planes at the same time in to a building". After a while we realized we were watching live action, not drama.
Day 9 & 10. A sudden increase in the pain threshold. I can't pick up anything from the floor. Sitting on the high rise toilet seat hurts. I spend a lot more time in bed and I am uncomfortable. Finally I ask Geoff to take a look at my stitches. One is pulling the flesh too tightly. We decide to go in to the doctors. He says stitches can come out now. Wonderful. The problem is completely solved. It turned out that as the swelling went down and the flesh shrank back to normal, the stitches were pulling too tight causing the increase in pain. When I bend or pull my knees up in bed this is followed by pain that lasts for some time. I'm told the internal dissolving stitches take about 6 weeks to go. Perhaps that is pulling me every time I stretch the area. I now use the "picker up" gadget helpful for arthritic people. I have asked my GP about exercise and minimizing nerve entrapment in scar tissue, he says walking and nothing else until I see the surgeon.
Day 12 The "greasy finger test". I wanted to know how many segments were left. A little lubricating cream in the buttock crease so I can feel what is different. There are NO lumps or bumps where the incision site is. It is totally healed. I can feel a small amount of pain where the junction is for the 1st & 2nd bone of the coccyx. That has always been there, it never was the same intensity of the joint between the 2nd and 3rd bones. At the end of the 2nd bone there is NO pain at all. For that matter no bone either, this was the part removed.
Day 14. My pain is slightly higher than one week ago. I wonder if it is a pulling of the internal stitches. When it is at its worst I have a sharp feeling where the t-bone now ends and discomfort all the way down to just above the anus. Similar to the Chinese burns we gave each other on the wrist as kids. Occasionally I take a pain pill, mostly I manage without. Things that aggravate my surgery site. The worst is fecal material pressing from inside. Other activities that cause problems are, standing still for meals or the computer, bending over to pick up something, or pulling my legs up in bed. These are worse at the end of the day. Things that help bring down the pain level. Going for a walk brings immediate but not very lasting relief. Laying down for a sleep on my stomach with a hot pad draped over my rear end works well.
Days 15 & 16. Considerable discomfort from feces when it presses on the surgery area.
Day 17. No sharp/burning pain on bending. I feel great. Today I had my check up with the surgeon. Surgery removed the portion that moves backward when I sit. I now have only 2 bones in my coccyx. The small piece removed was only about ¾" long. Dr Thompson told me the cause was an old injury, wear and tear causing arthritis and a spur on the tip of the coccyx. I have lost forever the sharp pain (like sitting on a knife) when I shift, such as getting out of bed or out of the car, presumably this pain was caused by the spur on the tip. At age 10, I was at boarding school, several times I bumped my way down the dormitory steps. It did hurt but I was showing off. This seems likely to be the original injury. At 40 I went back into the workforce and spent many hours sitting on an office chair. I was in the habit of dropping heavily onto the chair, thus causing repeated impact. I have mild osteo-arthritis in other parts.
Day 18. I walked for 3 km (2 miles) without any effort. A couple of hours later I was very tired and a bit sore
Day 19. First swim. Water walking and leisurely breaststroke didn't present any awareness of my surgery site. If I take a big stride there is discomfort so I restricted the stride length. Since the internal stitches started to dissolve I haven't had enough pain to be worth taking any pain medicine. I do ache a lot in the area and get very tired if I over do anything that stretches the surgery site. I am still spending a lot of day light hours resting.
Day 22 another swim, It went much better. I feel great.
Day 21. kegals are a bit tender. I dig in the garden and am sore at the incision site the next day
Day 23. Dig new garden. No soreness just stiffness!!! No soreness at all with kegals . At 3.5 weeks the tight band from the (new) coccyx end to the anus I was feeling when I bend is gone.
Day 24. I find a great physiotherapist. He looks at my operation site and comments that the surgeon has done a VERY good job. He gives me information about scar tissue and entrapped nerve ends. He says not to hurry with sitting. He can feel a nerve that runs over the last coccyx segment. This is caught a bit so he massaged it free
Day 36. Visit physio again. This time he finds a caught nerve end by lifting my leg high and loosens it.
The first 3 weeks recovery was spectacular. From 3 – 6 weeks it has slowed considerably. I have improved a lot but my pain level is up because I'm doing stretches to correct a problem with my thighs. Many years of sitting have allowed some abdomen muscles to shorten. And later many months of standing have put too much strain on my thighs. This must be corrected. At present I'm doing thigh stretches but they do involve tucking in the tail and pushing out the lower back which stretches the incision area and is causing pain. Dextropropoxyphene and Paracetamol give satisfactory relief.
6 week update. I stopped doing thigh stretches for 3 days and the surgery site pain dropped to about a 1 or 2. No need to take analgesics. I feel back to full strength. The surgeon said I could do anything I liked at 6 weeks.
8 weeks, a sudden regress. Pain in the surgical site. I need to take painkillers just after lunch and again at teatime. I stop sitting at all. Cause? (was definitely caused by stretch exercises). A slump stretch for 10 seconds 5 days ago? I've now started to sleep on my back carefully propped up under my lower back and paused over the hole in the mattress with knees in the air over 2 thick pillows can this be the cause? I continue to do strong quadriceps stretches in the pool twice weekly. It is now 5 days since the slump stretch it should have cleared up. If I do something in the morning, there is no pain until that afternoon and then the following 2 afternoons, no pain in all following mornings. By day 3 it usually clears up. What have I done to keep the pain caused by the slump stretch to continue? Also my legs are very sore and I have to rest in bed a lot. I finally had to give up all quadriceps stretches; they were creating too much pain in my surgery site.
9 weeks. A notable improvement. There is no longer any pain with fecal material pressing on the coccyx. I can lay on my side and not get any pain in the coccyx. I can draw my legs up in bed without causing pain later. At times I am still overdoing it with stretching exercises, probably the piriformis stretch I do in the pool. Still only sitting for very short periods. I have never sat long enough to cause pain. Pain is always caused by stretching exercises.
10 weeks. I was advised by my physiotherapist to take sitting very gradually. I need to find out if I can drive for an hour. We live 20 minutes drive away from the closest shop and one of us must be able to drive. I made a new cushion especially for the car and set off yesterday on my own. My first drive for 6 months I noticed that the cost of petrol has come down by 20 cents a liter since I last purchased it! Enough of the nonsense, I didn't have pain for the 45 minutes round trip, though the special cushion is uncomfortable because I sit with most of the weight on the part where my legs join my hip, not very natural. I did have quite a bit of pain later in the day. Painkillers worked very adequately. The real test was if there would be pain the next day. Next day ABSOLUTELY NONE, whoopee, no painkillers today, I now know I can drive in to the local shops.
3 months. The burning bum pain has gone. Presumably the burning pain around the anus is because there are so many nerve ends there. The pain I get now is when I overdo something; it is an ache that fans out and up from the new end of my coccyx. I have reached the stage I was at pre surgery.
4 months. Suddenly a big improvement. I can lie on my back. It doesn't hurt to rest buttock against kitchen counter. Shoulder pain is extremely bad, could be taking extras pain meds for this is helping coccyx. (Epilim and Valium). I have adhesive capsulitis (frozen shoulder) A very painful condition when in bed. A steroid injection in to the shoulder gives relief for one month and has the side benefit of improving my coccyx pain for a week.
5 & 6 months Two more steroids for the shoulder which responds well to physiotherapy and the steroids. Each dose gives a temporary relief in the coccyx pain for about a week.
7 months It is now clear that I'm not doing as well as I should be, so back to the pain clinic for another steroid injection with fluoroscope to the surgery site. This brings 3 weeks of temporary improvement.
8 Months I consult a rhumatologist; I have a problem that started 2 years before the coccydynia. The rhumatologist says I have a condition similar to fybromyalgia. It would probably be simplest if I describe a couple of episodes and how it affects me. When I had coccydynia for about a year I started to stand a lot more. This caused me to get muscle pain in my back. I'm a lucky person who is never troubled by back pain. It took 9 months for this pain to clear up and it hasn't ever returned. Another situation was when I sent out letters to 40 people, I hand addressed 40 envelopes and put my return address. This one of act caused a pain in the back of my hand for 4 months. These are only 2 examples of about a dozen that always start in using a muscle, which causes the soreness and stiffness, we all recognize. With me the muscle soreness doesn't clear up in 2 days but takes between 4 and 9 months to go and never returns. The rhumatologist put me on oral steroids for 2 months. This helped a great deal with my "fybromyalgia like" pain. It also gave me a bit of relief with the coccyx pain.
10 Months - 1 year I finished the steroids and the fybromyalgia is coming back with a vengeance. However the coccydynia is getting better. There has been a big improvement in the 10 – 12 month's period. I believe my problem with slow healing is because of the fybromyalgia. If it took 9 months to recover from a sore back it seems likely it would take just as long to recover from surgery. I expect it will take just as long again to adapt to sitting. It has been so long. I will see the rhumatologist next week, so it will be interesting to see what he says. Geoff adapted an office chair to have a hole in it the size of a toilet seat. We all know that is the most comfortable seat in the house! I will post a photo when I've finished the film. There is a recessed base and at times I put a soft cushion in this. The secret seems to be to keep changing the contour of the seat. It is necessary to wear a skirt. Jeans are too taught across the rear end to tolerate for long. I can now sit for about 2 hours in a day (not continuously) and not have any after affects the next day. I don't take pain medicine during the day. Sitting becomes very uncomfortable because I'm using parts of my body that aren't used to it. I mean very uncomfortable, not painful. How wonderful it is to sit briefly to put on shoes. Struggling with laces on runners while balancing on one foot was never easy for this geriatric! I still have to take pain medicine at night, fybromyalgia and the hip bursars are bad in bed, in spite of the deep hole cut in the foam mattress.
It is now 2 years since my surgery. Several months ago the rheumatologist told me that people with back surgery had to "harden" their surgery area, basically "no pain, no gain". He said I was to sit more. I had been avoiding most sitting because of the pain.
I now have considerable pain in my feet due to fybromyalgia and am forced to sit. I take Digesic 3 times a day and this gives me quite good relief. I don't make the pain worse the next day with all the sitting. I can measure getting better by looking back several months and realising what I can do now that I couldn't 6 months ago.
I also take:
All of these medications give some help, if I forget any of them, I know the difference.
I expect to improve more still, I'm so grateful for the information on your page which was the only reason I pushed for surgery. My doctor told me it wasn't possible. I would have believed him if I hadn't read your information.