Shona - firstname.lastname@example.org
I am 48 and am fit and well apart from my coccyx pain. It started about 4 years ago and just started out of the blue. I just remember becoming increasingly uncomfortable while sitting at work.
I put up with the pain for a while hoping it would go away but it was just getting worse so I went to the doctor. Painkillers and dicloflenac didn't work so I tried physio and acupuncture. No joy.
Eventually I was referred to the spine clinic and had an MRI. This showed I had a bulging disk and they assumed the pain in the coccyx was referred pain from there. I went on a waiting list and had an injection into my spine near where the disc was. No joy.
The next step was to inject direct into my coccyx. This helped a lot however wore off after a few months. After waiting for months on the NHS I had another injection and manipulation, which again worked for a while but less time than the original injection. At this point I went private as my employer contribute to BUPA for me and I needed immediate treatments due to the pain and my inability to work. I work in an office and sit at a pc all day. My consultant felt the pain was in the tip of my coccyx and said he would pepper the end with injections and see if this provided any better relief. It certainly did. I had about 7 months pain free. I thought I had finally found the answer however gradually the old pain came back. My consultant agreed to one last injection which worked for a couple of months. I am now back to square one.
When I had my last injection the consultant came to see me afterwards and said my coccyx was unstable and moved about much more than it should. He said he would take it out next time. He had mentioned removal before but he didn't seem keen until he realised my coccyx was unstable.
So, I am booked in to see him on 11th January and feel that surgery is my last option. I would be grateful for any advice. Any questions I should ask him? I'm also concerned about my job. How long would I need to be off work? I do have a sit/stand workstation now but find I can only stand comfortably for about half hour max as my hips and low back start hurting.
Well I have my coccygectomy two weeks tomorrow. I am very nervous about it as I have read so many differing accounts. If it wasn't for my job (desk based) I would probably try and live with the pain but I can't do my job with this pain. It's not actually too bad right now as my surgeon gave me an injection about 6 weeks ago and that is still working. It's tempting to call the whole thing off but my husband keeps reminding me how much pain I am in when the injection wears off.
I have been preparing by buying a grabber, raised toilet seat, bolster pillow for support, antibacterial wash and dressings. I am also rearranging cupboards and drawers so the things I need are easy to reach without bending.
I have some questions if anyone could help please.
Thank you everyone and thanks Jon for this great site. I don't know how I would be coping without it and the support from fellow sufferers.
Had my coccygectomy just under a week ago (Monday May 20th). Update as promised.
Day 1 - Surgery
Arrived at Elland Spire Hospital and went down for my op about 8.30 am. Came round in the recovery room a couple of hours later and the pain was horrible. They gave me 200 ml of IV tramadol. Still in pain. So they gave me oramorph ( liquid morphine). This took the edge off enough to enable me to move from my back onto my side. Pain eased considerably once I was lying on my side. NOTE: Ask before you have your op if they can lay you on your side in the recovery room. Laying on your back is VERY painful after this op.
The surgeon came to see me afterwards and told me my coccyx was not only loose but also very long.
I was given IV antibiotics. I was also on mix of regular tramadol and ibuprofen and the oramorph when needed. The pain actually was not too bad if I lay on my side and stayed still. This meant I had no problems sleeping.
The nurse was concerned I wasn't emptying my bladder fully and did a bladder scan. This was ok but it was difficult to pee as sitting on the toilet was painful.
BP was very low but had gone back to normal by evening.
TIP - take a nightdress as PJ bottoms are too hard to get on.
Day 2 - Tuesday
Pain level 1/10 while still. 6/10 on movement.
Felt ok lying down but when I tried to get up I felt sick and wobbly. As a result the hospital were going to keep me in Tuesday night. However after an anti sickness pill I managed to walk the length of the corridor so was allowed home.
Have been told to keep dressing on for a week ( no shower) and then hubby has a spare to put on for me. He isn't looking forward to doing this
My hubby put the front passenger seat down as far as it would go and put loads of pillows in the car. I laid sideways on this and was ok for the 10-15 min ride home.
Bought a long bolster cushion and this is FANTASTIC. Snuggle into it with my knees either side. 100% recommend anyone having this procedure gets themselves one.
Day 3 - Wednesday
Pain from wound the same. Have arm and shoulder ache. Think this is from lying on my side.
Slept most of the day. Still feel nauseous and weak and wobbly if I try and get up. Hubby washed my hair for me and helped me get an all over wash.
Day 4 and 5 - Thursday and Friday
Day 6 - Saturday
Pain the same. Concerned as haven't yet had a BM. Have been taking Lactulose every day and hubby went out today and got me Miracol (miralax in the US). Took 3 during the day.
Still feel very weak and nauseous but only when I try and walk or get up.
Day 7 - Sunday
Well it's 11 am as I write this and still no BM. Tried to walk around a bit but still feel so faint.
Will update next week. If any one has any questions or advice on the nausea/ weakness or BM issues please e mail me. PS. I am eating normally and drinking lots of water.
Well its 4 weeks tomorrow since I had my coccyx removed as here is my update as promised:
I am doing well and the surgeon says my scar is healing nicely. I have been very careful to do everything I can to avoid infection and so far so good. I use moist toilet wipes and shower after going to the toilet. I also dilute savlon antiseptic liquid and pour that over my wound.
This is my scar at 4 weeks post op. it's quite lumpy at the top and there is a small hole at the bottom that I am keeping my eye on.
I am walking every day and trying to build the distance up. I find I tire easily and can't walk too fast at the moment. I can't sit yet apart from sitting to the side on my hips and then changing to the other side when I start to ache.
My pain seemed to get different after a couple of weeks and affected my left butt cheek and the surrounding area. It was like a burning tingling sensation. The surgeon said this was the nerves that had been cut. He gave me gabapentin for this which has helped a bit.
When I saw my surgeon he said my coccyx was dislocated and very loose. He also said it was very long and wide. I wish I had asked him if I could have it Given these factors I am confident this op is going to work for me.
One thing I would like to mention is that some days are worse than others. I panicked when the pain increased one day and thought the wound must be infected. This is not necessarily the case. It could be you slept funny, did too much the day before or the nerves refiring.
Meds I am on now are:
Gabapentin 300mg x 3
Dicloflenac 50mg x 3
Paracetamol as needed
Codeine as needed
My tips for anyone having this op are:
Get raised toilet seat and grabbers (one for upstairs and downstairs)
Move all your necessities to top drawers before the op
Start stool softeners a few days before the op. it was day 9 before I went and I screamed. Poor hubby didn't know what to do
I will update again soon. In the meantime please contact me if you want any advice or to ask any questions. I am more than happy to help.