Coccygectomy after unexplained coccyx deformity

Jessica, Australia - jessica.vigar@gmail.com

Posted 2015-12-06

Pre Diagnosis: Back in October 2014, (14 months ago) I had major surgery removing my bile duct and reconstructing my bowels, this was completely unrelated to my coccygectomy. However, after resting (lying down) for almost 4 weeks, and then returning to work (sitting at a desk), I started to notice coccyx pain. Initially this would only be a slight twinge as I stood up, if I had been sitting for more than a few hours without a break. Over the next 6 months it got to the point that the pain was quite constant, whilst sitting, usually starting after 30 minutes or so. I had never had a fall at any point in the past to explain this pain. This was about the time that I went to see a doctor, she was worried about pelvic collection following my bowel surgery and sent me for an ultrasound which came back negative. She then sent me for an x-ray (one of the worst, most unreadable x-rays I have ever seen). I had been looking at the recommended doctors list on this site and asked her to refer me to Peter Wilde (see Doctors and specialists in Australia, Victoria). He was booked out for months and I was getting impatient and so I organised an appointment with Mr. John Cunningham. I was in his office for under 5 minutes, he told me that he couldn't see anything on the x-rays, said that I was much better off seeing Peter Wilde and charged me a small fortune.

Diagnosis: I saw Peter Wilde on the 16th of July, he took one look at the x-rays and immediately ordered an MRI scan (attached). I then went back with my results and he told me that my tailbone was completely deformed, hooked in. He recommended a coccygectomy to fix the problem. Because of work commitments (Peter Wilde had recommended 4 weeks off work) I delayed the surgery until Monday November 16th, I could walk to work and they had organised a standing desk for me to make this possible. In July I would start getting pain within about 10 minutes of sitting, by November it was within 20 seconds.

Surgery & Hospital Stay: I had my operation performed at Epworth Private Hospital in Richmond, Victoria, it is an absolutely fantastic hospital and all the doctors and nurses are wonderful. I developed a cold on the Thursday before so woke up from the operation with pretty terrible respiratory problems (in hindsight I should have delayed the surgery by a week). The pain upon waking was quite extreme and took about an hour of regular IV morphine to subside. The surgeon said the operation only took 1 hour and 15 minutes, however, I was in recovery for over 4 hours. I had a drain in the site and a saline/antibiotic IV in my arm. Whilst in hospital I was on Targin (every 12 hours), Endone (every 4 hours), Panadol Osteo (every 6 hours) and Valium when required (as a muscle relaxant). The surgeon told me that the bone was quite hooked and so they had to go in quite deep, I was expected to go home after 3 days, however, because I was in so much pain I stayed for 6. On Day 2 I attempted to release my bladder, trying for 30 minutes at a time and over 5 times but it was as if my brain had completely forgotten how to do it. The doctor explained that this is due to the pain causing all muscles in the area to tighten, so I had a catheter inserted (not a lot of fun when you are awake). The drain in the site was removed after 3 days. My first bowel movement (after many laxatives) happened after 4 days, not as much pain as I was expecting but quite a bit of blood and weeping from the drain site, I was assured that this was quite normal. Peter Wilde could not explain what had caused my bone to deform, whether I was born like that or maybe broken it as a child and it had fused back like that.

Transportation & Recovery: My husband organised a mattress in the back of his 4WD with me laying on my stomach, even this was quite painful, lying on my side in the front seat, fully reclined would have been out of the question. Day 7 & 8 I still was quite uneasy on my feet, however by day 10 I was walking around almost fine (with pain but no limp). I left the hospital on the same medication that I was on whilst there. I am now at day 18 and can walk around the house but still need to rest quite a bit. I am down to only taking the Targin every 12 hours and the Panadol Osteo every 6 hours. I can still develop pretty bad pain if I do too much but am healing quite well. The scar is completely hidden, only 50cm/2inches long and has completely healed closed. I have a very tight feeling, like there is a golf ball inside where my coccyx was but I think that's just the healing/stretching process. I am definitely not ready to go back to work yet, but hopefully with another week and a half of rest, I should be as good as new. Definitely no chance of sitting at the moment, and bending/squatting does hurt, but my surgeon assures me this will likely have fixed my problem long term.

Recommendations: Some of the things I have read on this site really helped me in preparing for my recovery. I bought a massage table and that has proved invaluable. Not only being able to use my laptop/iPad whilst lying on my stomach but just being in the lounge room with my husband instead of stuck in bed (which can end up making you feel quite depressed). Sleeping I find is quite easier with a pillow between your legs, it seems to put a lot less strain on your hips. I recommend just taking it slow, the drugs I was on proved really effective which was not always a good thing as I thought I was stronger than I really was and had to pay for it later, so take your time and recover properly. Also, keep up with the laxatives, I find that because of all the pain medication, they don't have you running to the toilet, they just make things a little easier. If you live in Victoria I would highly recommend Peter Wilde, I have heard through both patients and his colleagues that he is the best in Australia and that has definitely been proven in my case.

I hope this has been helpful, I will send through more information about my recovery over the next few months. Feel free to contact me if you have any questions.

coccyx deformity

Update, 2017-11-05

My last post was at day 18, at that point I was in quite a bit of pain. I spent many days lying on my massage table on either my front or my sides. My hips definitely got quite sore from these positions (as well as my chin when lying on my front). I returned to work around 4 weeks after my surgery. I work in an office and luckily I was covering the Christmas period so it was just skeleton staff and not much happening. I set up my laptop on the floor under my desk and worked lying on my stomach. I would not have been able to return to work otherwise, as standing all day was painful and sitting was still out of the question.

My coccyx cushion (which I purchased from officeworks, a square foam cushion with a rectangular cutout at the back) was invaluable and I continued to use it for 18 months.

After about 6 weeks, I started to improve very noticeably every day. I still used the coccyx cushion every day sitting at work and driving to and from work. Even with the cushion, sitting for more than a few hours was painful and I preferred to stand as I was now very use to standing.

I went back to my surgeon after 3 months and he said that the area was still quite "woody" which I think means that the surrounding area around the surgery site was quite hard. He told me that he didn't need to see me again as I was healing really well and I haven't been back.

Side note: if you are choosing to stand for prolonged periods of time, be aware that in some cases, this can cause haemorrhoids (I know! We can't win!). This wasn't a problem for me, but I was advised by a doctor that this could become a problem.

It is now 2 years since my operation. I stopped using my coccyx cushion regularly about 6 months ago. I still need to use it when I drive for more than a few hours (I think it is the bumping up and down in the car that causes pain). Any pain I get now however, is nothing compared to what I use to get. Usually, I will start to feel a mild throbbing and once I adjust my seating position, I am fine and the pain is gone.

I regularly go to the gym, I can perform squats, lunges and even get through an entire 45 minute cycle class with very little discomfort.

I don't know everyone's unique situation, but I would have the surgery a hundred times over. It was one of the best decisions I've made and I am so thankful that I did.

Please feel free to contact me if you have any questions, I try to reply to everyone who asks me questions.

Cheers,

Jess

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