Recent coccygectomy experience

Rachel, West of Scotland, Glasgow area, UK -

Posted 2018-03-25

I've had coccyx pain through no obvious trauma for about 6 years. I simply woke up one morning and had terrible pain in my ... bum region.

At the time I was living in Dubai and visited a doctor there. They were useless (in a nutshell) and just prescribed bog standard painkillers and stated it was likely due to some Vitamin D deficiency.

I returned to the UK early 2014 and soon after went to my GP. They put me on 2 x 500 mg of Naproxen daily but when this didn't make any difference, they referred me to an orthopaedic Specialist at the IRH which is my local NHS hospital. There, I was "internally" examined while awake with nothing in the way of pain relief/anaesthetic. This involved the specialist examining the coccyx bone by inserting his finger ... down there and moving it about to establish how mobile it actually was. I nearly hit the roof with the pain and left the hospital in floods of tears. Partly because I'd been told I was going to get a cortisone injection and manipulation but mainly after the pain of what I'd just experienced.

After waiting about 6 months the day of my procedure came around. I was admitted just as a day patient and had the procedure within a couple of hours of arriving at hospital. The day was pretty uneventful. Came round from the anaesthetic and was signed off hours later and told to go home. I would receive my follow up appointment through the post.

I went back to my local hospital some months later and explained to another Dr (I never seen the same Dr twice) that I wasn't having any relief from the cortisone injection and asked what else could be done. I was basically told there was nothing else they would do for me, they wouldn't repeat the injection and wouldn't think about removing the bone due to the risk of infection. I was signed off by them on the spot and told if things hadn't improved after a year my GP would need to refer me again but as far as he was concerned there was nothing more that could be done. Off I went feeling very deflated.

Fast forward about 18 months and I had changed job through which I get private medical cover via AXA.

I had a period of about 9 weeks around September 2017 where I was absent from work. I'm now working in a call centre environment so the majority of my day is spent glued to my seat & desk and the pain just became too much. I went through quite a dark phase which involved counselling as I was only 29 and couldn't face the rest of my life with this pain. During this time my manager said to contact AXA and see what they suggested. They referred me to Dr. Fraser Dean at the Nuffield hospital (see Doctors and specialists in the UK (Glasgow)) and my appointment came through within a couple of weeks.

What a breath of fresh air this man was! He wasn't dismissive like those I'd encountered through the NHS.

He suggested we try a second cortisone injection as some people do get relief second time around and due to a holiday I had booked, this was scheduled for the end of November 2017.

On the day I checked in about 12 lunch time and the procedure was carried out about 3 pm. I was home by 6 that same evening. I had my follow up with Mr. Dean just after New Year and unfortunately the injection hadn't worked. He decided he was going to remove the coccyx bone and my procedure was scheduled for Tuesday 13th March 2018 again at the Nuffield hospital.

I checked in about 12 and my procedure was carried out at about 5.30 pm. I was back in my room by about 8.15 pm and within the hour I was up to use the bathroom, changed into my own PJs and had polished off a sandwich. I was kept in overnight and my sleep was a bit restless. I did manage up and down myself during the night to the bathroom and was given an antibiotic through my IV about midnight and again about 7 am.

Mr. Dean came in about 8 am and explained he was happy with how it had gone. When in there he'd discovered just how mobile my coccyx bone was and had taken out the full thing instead of partial removal. I had under skin stitches then glue on top covered by a waterproof dressing. I was prescribed 2 x 500 mg of Paracetamol 4 times a day, 2 x 500 mg of Naproxen 2 times a day, 15 ml of Lactulose 2 times a day and 1 Inhixa injection of 40 mg daily for 14 days (which I do myself at home). I've been told no lying on my back or sitting and go back on Monday 26th March for the nurse to check the wound and end of April to see Mr. Dean.

It is now Sunday, 5 days post op and I cannot speak highly enough of Mr. Dean. I have had no pain since the Coccygectomy, just slightly uncomfortable and sick feeling but nothing horrendous like other stories I have read on this site. I feel so grateful that I was referred to him as mentioned before I went through quite a low period due to the pain and would say suicide felt the only option for me before I went to Mr. Dean. The thought of only being 30 with another 40/50 years of that pain was horrendous.

I have been told the recovery period is about 6-8 weeks. At the moment I feel that's being generous for me but I'm trying not to get ahead of myself and make it a case of 2 steps forward 3 steps back. I shall update following my next appointments.

Update, 2018-04-08

Just a quick update after my appointment with the nurse (2 weeks to date after op).

She is pleased with progress and has removed dressing and stitches. Said to leave to air now. I have also finished all medications. A few side effects from the injections (terrible bruising and a bit of hair loss) but these are normal reactions and should hopefully begin to clear up. Still relatively pain free apart from the odd twinge but nothing unbearable.

I go back to see Mr. Dean at the end of April and will again update then.

Update, 2018-11-04

All seemed to be going well after the initial check up in March but I seen Mr. Dean in August and after a long chat we came to the conclusion that the op hasn't worked for me. I'm still experiencing the same pain and sometimes it can feel more intense. I'm still struggling with walking short distances etc. He has referred me for some physiotherapy but really I feel this is pointless. The physio just tells me to go swimming and gives me a few exercises to do at home to try and strengthen the joint but I feel in the days after it makes me feel worse. I've had other health issues going on in the mean time and physio has really taken a back seat but I will get back into it soon enough.

I will see Mr. Dean again at the end of February and if I'm still feeling the same he is going to refer me to the pain clinic to try and learn to live with the condition. Not the outcome I was hoping for! But I wouldn't ever let this outcome reflect badly against Mr. Dean. I knew it was a possibility and am still so so grateful to him for trying. If we didn't try we would never know if it would work so I'm still glad I done the op!

Update, 2019-12-15

I'm now 21 months post op and still experiencing significant pain in the coccyx region (even though there is nothing there).

I was signed off by Mr. Dean in January of 2019 as there was nothing further he could do for me seeing as the problematic bone was removed. I was passed onto a pain specialist at the pain clinic in Ross Hall hospital (Glasgow) and was given a Tens machine to help manage my pain. I also take Etoricoxib on a daily basis. I have a sit/stand desk at work and a better chair with the telltale cut out which do help. But I still experience a lot of pain. Only today I flew from Reykjavík to Glasgow (a short flight of 1 hour 50 minutes) and by the end of it was crippled with pain.

Guess I just need to face the fact I'll have to carry the haemorrhoid cushion about with me on a more regular basis.

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