Sally, UK - firstname.lastname@example.org
My pain started 2/2013 with no apparent reason. The treatments I tried are:
* 7 steroid injections/manipulation under general anaesthetic. Prior to this I had MRI and CT scans with no abnormalities found. The pain worsened for 10 days then reduced to an acceptable level for 2 months.
* 1 ganglion impar block which had no effect.
* Self manipulation as described by Brenda 03-06-08 on this site. This worked for about three days.
* Chiropractic treatment at Sayer Clinic London (see Doctors and specialists in the UK, Londom). 5 consecutive treatments with internal manipulation then 1 hour physio after each treatment. Treatment then every two months for a year. No effect.
* Osteopathy and then Acupuncture for a month each - no effect.
I gave it so much thought but had no other option but to go ahead. I prepared by stocking up on laxatives, gentle wet wipes for cleaning the wound and I also had an air bed which I bought on a holiday which has proved to be invaluable!!! I was in hospital overnight and returned home laid flat in the car which was fine as I had plenty of painkillers. The surgeon said my coccyx was quite mobile.
End of week 1
This was the worst week. Awful pain when turning in bed. My fault entirely because I was concerned about constipation, so did not have as much pain relief as I should have! I was fine stood up, but turning over in bed was so painful. Laying down was difficult but once I was settled and still I was fine. No constipation problems as lots of laxatives and the toilet did not need raising (best place to sit). Pain level 9.5/10 (when turning in bed or any movement trying to move from laying to standing vice versa.
End of week 2
Dressings removed at day 10. All fine. I could actually turn over in bed much easier. Pain level down 7.5/10.
End of week 3
Managed to sit at a table using a neck cushion, the type used for air travel with the open bit to the back. I have a cushion on the table to lean my elbows on to take the weight off the wound area. I can perch like this for meals.
At the end of this week I find I can actually lie in bed on my back for 5 minutes!! Pain level 7/10.
I have good days and bad days if I do too much but I am seeing a little improvement each week.
I have now seen my consultant for my post op check at 7 weeks. I mentioned that I am having pain to the right side of the surgery site and he thinks this is due to internal stitches. He advises that it can take 3 months before these heal properly and has booked me back in to see him in February.
My journey to the hospital was 45 minutes and I sat on a coccyx cushion on the front seat but the journey was quite painful towards the end so for the return journey I laid flat which was more comfortable.
I can now sit on a hard chair with a thin cushion and type this at my desktop computer - I am fine as long as I am sitting completely upright and can have meals sat like this too. I can lie flat normally without pain. Leaning back is not an option right now so I will have to wait and be patient until my check up in February when I will update again. Feel free to email and I will try my best to help.
Update 6 months post op
I am now 6 months post op. It has been a very long and difficult time managing work and being in so much pain. The old sitting to standing pain was still present and I have been so low and very worried, as I assumed the op had not worked. I have had the wonderful support of my husband and friends, without whom I just couldn't have managed.
However, finally last week, I have had a definite big reduction in pain. I have not done anything differently but something has changed!
I can't believe after over four years of excruciating pain, it has eased substantially. I still have pain but it is nothing like it was before. I am hoping this will continue and will update again at 9 months post op. I can now sit on the settee for two hours which is amazing and car journeys are much easier.
I just didn't realise how much awful pain I had been in until now and feel I have got my life back.
Feel free to email and I will do my best to help. Sally