Crazy as it sounds, I cannot wait for surgery

Michelle, UK -

Posted 2017-03-05

My name is Michelle I'm 23 and I live in the north west of the UK. I have previously put on the site my personal experience. I explained how my doctors could not diagnose me and tried to tell me my pain was all in my head. I emailed a consultant called Ian Shackleford who works privately and at Warrington hospital. I insisted to my doctors I wanted to see him. After a year of suffering and crying to numerous doctors I was referred. My coccyx is detached and on an angle.

In 2015 I saw a consultant at Warrington hospital Dr Guru and in October 2015 I underwent treatment. I had internal manipulation and a steroid injection. I never heard from the surgeon after the op so never knew how it had gone. I had around two months of slight pain but nothing close to what I had previously experienced.

January 2016 the pain began again!!! I rang the hospital and they had informed me my surgeon had left and was waiting for someone to replace him. I rang the hospital numerous times but just got told I had to wait until a new consultant came to the hospital. In this time I have been on so many pain killers it's unreal. In July 2016 I saw a physio at the hospital who said it had broken again and she would put me back on the waiting list.

October 2016 I saw my new surgeon and he explained I had to have to same procedure again. So at the end of october 2016 I had to procedure done again. Straight after my op my surgeon came to speak to me and explained my coccyx is very mobile and not attached to anything. He struggled to put the coccyx back in place. He explained how he feels as though the cartilage and muscles have deteriorated therefore there is nothing to hold it in place. I really appreciated this.

Again three months passed and I'm in absolute agony!!! I have been back to see my surgeon on the 6th January 2017 and he is willing to remove my coccyx and as crazy as this sounds I cannot wait.

The pain has been immense and ruined my life! I can't cope with it any longer. Please to all those worried about the pain they are experiencing make sure you get the right treatment!!

Any questions on my procedures are very welcome!

Update, 2017-04-30

I am 4 weeks & 1 day post op. I can honestly say I've never been in so much pain.

My consultant has been fabulous & I have every faith that this procedure will put an end to my pain.

Before my op I was excited and I actually wasn't nervous. All the staff and nurses before my op where fab at Runcorn treatment center. My consultant came to see me & said 'let's do this' he told me that if I was feeling okay I could go home that night........

After my op which took longer that what I imagined I was in excruciating pain. I have a high pain threshold but this was ridiculous. I was crying my eyes out so I was given morphine in a large dose. My surgeon came to see me twice while I was coming round from the op. He said when he opened me up it was a mess!

My coccyx was very mobile and had damaged my muscles. I had the two bottom parts of coccyx removed and the bone left was chiselled away and rounded off.... no wonder I was sore. I had the inside stitched up but the skin glued together which means less risk of getting infection.

My bloody pressure was low and I was well out of it so I had to stay in over night. I did however get up and go for a wee when I got back on the ward. I was a little dizzy but I was able to walk from the get go. I don't wait around. This was when my aftercare went downhill. No one bothered to give me any info on what to do when I got home!

I came home and obviously I was in agony moving. I had morphine and had to take base painkillers. I felt pretty good after a week. A district nurse came to see my wound and she said it was brilliant... my doctors have been useless as usual Garswood surgery have let me down again. They haven't provided me with any support and still don't believe me when I ring to ask for pain killers.

I do have to mention my legs had swelled a lot after my op and took around three weeks to go back to normal. I did go to hospital to have blood tests to check if I had a blood clot but they came back clear. Which was a very very and tearful wait in A&E.

It's now 4 weeks and 1 day after my op... I have been walking around and trying to sit down which I have now realised was a big big mistake ... ensure you get all the aftercare info which I didn't. I have now been told I shouldn't be sitting or bending at all because I need time to heal for at least six weeks and then slowly start.

Over the past couple of days my wound has been bleeding so I headed to the walk in. I've been experiencing more and more pain as well.

They said I had a hole which needed to be packed and to see my consultant ASAP.

So today after a fight with the appointments team I went to see him. He was shocked to see me and said I really need to rest... I could be this sore for at least three months.

If your having this procedure it's because you need to like I did! So go for it but make sure your prepared to be in agony and I mean agony. It burns like hell and you can't roll over in bed. You actually can't do much which for me is very frustrating. It's been hard for not only me but my family. So here I am back lying on my living room floor trying to stay positive.

Update, 2018-05-13

It has been over a year since my coccyx removal!!! I can't believe it. I was told in October 2017 that it would take 2 years to be pain free... if ever.

I started in Jan 2018 physio because my hips & knee started to hurt due to my posture. I needed to build up my muscle in my bum again and start to use my left side without thinking "this is going to kill" ....

I can't say I'm pain free because I would be telling a lie. However I can say I can finally sit down without thinking about it and can sit normally. If I sit for a long period I still get the awful pain but it isn't straight away. I sometimes get horrendous pain at night.

I am now 16 weeks pregnant and worried about what is to come in regards to my back as my consultant left the ligaments in. I have been told this may cause me a lot of pain later on in pregnancy if they are still weak. I may have to have a C section due to my back operation.

My left leg is swelling like it used to when my back was bad but I'm not letting it get to me. I'm no longer on strong pain killers!! And just take everything easy when I start to feel pain.

This time last year I wasn't able to move and on very strong medication. I probably didn't know what day it was and was wishing I'd never had the operation. I have to say now it was the best decision I have ever made. My dad reminds me of when I was crying on the living room floor everyday and crying for help. I always remember this when I get sore to remind me I'm a million times better. I would love to be pain free however I can certainly live with this pain.

If you're concerned about your coccyx and are experiencing pain get it checked and persist on getting pain free. They told me it was all in my head... 3 operations later & I'm able to live a normal life and happier than ever!!

It really is a lonely and depressing place being in pain 24/7 but you need to keep your head up & you will get through it.

I will keep you updated with the pregnancy and the back pain.

What is coccydynia? | Investigation and diagnosis | Treatment | Coping with coccyx pain | Find a doctor or specialist

Medical papers | Personal experiences | Links to other sites | Support groups | Site map