Manipulation under anesthetic, then coccygectomy

Michelle, UK, 22 years

Posted 2015-11-01

January 2015 I sat down on the sofa and remember thinking oh my gosh that hurt. For the next couple of weeks I didn't think anything of it, I thought it may have just been an injury from the gym. The pain was getting worse and I was unable to sit straight or even comfortably go from sitting to standing. I knew something was seriously wrong. I could feel a lump between my bum cheeks and panicked. I made an emergency appointment with the doctor after googling my symptoms which I should NOT have done. He said my coccyx with inflamed and to take anti inflammatory tablets and I will be fine.

A month later February 2015 I attended the doctors four times and explained my symptoms were getting worse and I was getting seriously bad pains down my leg to the point my foot would go numb. The doctor informed me I had sciatica and I would just have to live with the pain and learn how to manage it. By this point I had tried naproxen which really hurt my stomach and also given some more strong pain killers.

After suffering for one month and the pain getting worse I was going out of my mind. I could actually pinpoint the exact point which was painful. It hurt to sit, it hurt to go from sitting to standing, it hurt to lie down and it hurt to roll over in bed.

My life was getting turned upside down, it really was. I stopped going to the gym which I loved and I had a job where I spent 12 hours a day on my feet and could not afford to take time off.

March came along and I headed back to the doctors with no change and just feeling sick with the amount of tablets. I insisted on seeing someone and I didn't care who! I then got sent for an MRI scan.

The MRI scan results came back 'satisfactory' and stated my coccyx was angulated towards my pelvis but this could be considered as normal. I was devastated! I just needed someone to help me. I insisted to see the report and could not believe my eyes. Why wasn't anything showing?

I took this as bible and attempted to carry on with my life in pain. I spent nights crying and spent night after night lying on the floor!

My parents contacted an osteopath in March/ April who I couldn't thank any more for his efforts. He explained what he thought I had done after doing an examination and I explained about my MRI scan. My pelvis was slightly higher on one side and my muscles were extremely tense, this may have been done through the gym. He explained he believed that my coccyx was slightly out of line.

FINALLY SOMEONE BELIEVED ME!

This was relief in itself. I attended twice a week even three times a week on my bad weeks. He helped give my back relief and helped every time I got sciatica. But yet the pain in my coccyx just wasn't getting any better. This didn't just ruin my life but I made my family's life hell. This was due to the worry of not knowing what was wrong with me and not knowing how or if I was ever going to be out of pain.

I again went back to the doctors in April and explained nothing was helping and I needed help. The 'doctor' in his exact words said to me "if we haven't found anything wrong with you then there must not be anything wrong. It must all be up here *tapping his head*"

I was in bits! I would never ever lie about my health & why would I make up this pain? I have never suffered with panic attacks but this just ran through my mind. was it all in my head was I going mad!

June 2015 I was on holiday with my family and I couldn't relax. The pain was unreal. I couldn't sit down and enjoy anything! I got myself all worked up and I ruined everyone's last few days. I had to stand up on the plane journey home as my pain was just making me feel sick. While I was on holiday I was desperate to get a cure for this pain. I googled every back specialist in the UK and found one in the Cheshire area, Ian Shackleford (see Doctors and specialists in the UK, Cheshire). I emailed him personally and explained my situation. He asked me if I was privately insured or under the NHS. I didn't care how much anything cost but I wasn't privately insured. He told me to insist to my GP to see him at Warrington hospital.

We returned home and the worry caused me to get chest pains and pains down my left arm. I thought I was dying. I didn't sleep for days I felt like my heart was going to pop out of my chest. I couldn't eat or drink. It was at this point I went to the hospital and they believed I had broken my coccyx and I need to be re scanned. He wrote a letter to my doctor and he gave me the exact letter in case 'they didn't receive it' .

I went back to the doctors and insisted I need help and I needed to see someone. I got referred to Warrington before I insisted. I also got put on muscle relaxants at this point as well.

July 2015 I attended Warrington hospital and saw Mr Goru. Prior to going in I was so upset and worrying that there was nothing anyone could do. But he was great!! He got the MRI scan up that I had done in March and he showed me the image and explained that it wasn't satisfactory and in fact I had Coccydynia and my coccyx was broken inwards 90 degrees. He explained it looked 'floppy' but they don't like removing it. So they will try three time internal manipulation and give a local steroid injection.

I was shocked and never been so happy to have broken a bone in my life. He explained I must have fallen to do this damage. Finally relief. The pain now became easier to live with.

September 2015 preop.

10 months later.... After I had been called a liar

28th October 2015, manipulation under anesthetic day!

The nurses were brilliant and the operation ran smoothly. The day after which is today. I feel extremely bruised and its sore to lie and sit down but I am soooooo happy I may be fully fixed!

I will keep you updated on the results! Who knows if it's worked but at least someone has helped me at last. But all I have to say is I would not want anyone to go through the mental or physical pain. Insist on seeing a specialist, insist on help!

I hope this helps someone and gives them piece of mind. Good luck!

Update, 2017-03-05

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 he 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.

Updated 2017-11-05

My coccyx had caused me pain for four years and I hopefully finally on the road to full recovery. It has been a long and emotional journey.

On 30th March 2017 I had my coccyx removed. Finally. My consultant was fabulous and so positive. I had the majority of my coccyx removed and the rest shaved away. They left the ligaments in in the hope it becomes normal for me one day.

Waking up from my surgery was like waking up in a nightmare. I have never felt pain like it. I was dosed up with morphine and my consultant came to see me straight away. He held my hand and told me that my back was in an absolute state. Due to my coccyx being hyper mobile it had torn all my muscles and due to this happening for three years it caused a mess. He had to repair the muscles and reattach ligaments. The operation took a lot longer than expected.. He told me I was going to be in agony for months however he said I will beat this and be pain free one day. My wound had been stitched internally and glued externally.

I stayed in hospital for a night and was sent out the next day in agony and not very well. I was on morphine for two months. I could hardly move. I was in agony doing everything. Rolling over in bed was the worst!!! I'd find myself waking up on my back in tears.

It's safe to say this journey has been awful. My wound wouldn't heal and I had four nasty infections. 17 weeks after my op my wound finally healed.

My after care was shocking. I have later found out you shouldn't bend, sit or move for at least 6 weeks! Ensure you rest rest rest! It's painful and nasty but it will be worth it.

I started to get pain in my groin and hip. This is due to nerve damage and seems pretty normal in a lot of women that's had this procedure.

I'm now 7 months post op and back at work and trying to live my life like normal.

I am still in so much pain but I'm not letting this stop my life. My MRI scan has shown inflammation and a slow recovery which is normal due to how serious my case was. I have got an estimated recovery of 2 years. I find driving causes me to be in the worst pain and find myself in tears driving home from work. It's so hard to explain to people my pain as many of you understand. I feel like people think I'm just being soft as this has been going on forever but it isn't an easy recovery and does take time.

I won't let this pain get the best of me and I will be pain free. It's just pain killers and taking it easy but building myself back up for now.

I will keep you updated and any tips I have.

Good luck to those waiting for surgery.

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.

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