Has the operation worked?

Lindsey - l.roberts6285@yahoo.co.uk

Posted 2006-08-20

Hi,

My name is Lindsey and I am 21 years old. I have been suffering from coccyx pain since January of this year after a fall on holiday ( I slipped on sheet ice). At first I thought I would be back to normal within a week-how wrong I was!! I went to my GP and he gave me some tablets and said there was nothing he could really do. So I kept taking the tablets for a few months (I have not sat down on my bottom since I fell in January, I have to lie on my side or sit on my side or stand) By March I felt enough was enough and I booked an apt to go private with medical insurance. The consultant was brilliant and told me step by step which procedures they would try and do. I had an x-ray and you cold see a fuzziness where my coccyx was. First on the list was the MUA which had no effect at all. A few months later I had a CT guided injection to make sure they got it in the right place. This didn't work either and was very very painful.

So the last option was the removal of the coccyx which I had just over three weeks ago. The day before the op I was given extra strong laxatives to empty my bowel and was then given an enema on the morning of the operation. It took longer than expected because I had four bits instead of three. I stayed in hospital for five days. All I can say is ouch!! I can't remember much about the day after the op because I was dosed up to the eyeballs on morphine - the pain was so bad. I was taken off the morphine in early hours of Wednesday morning and put on strong painkillers.

Three weeks on I am still in a lot of pain. The operation pain has gone and I don't feel like I have done ten rounds with Mike Tyson anymore!! But the pain is still bad. I was told it would be 4-6 weeks before we can tell if the operation has worked. I am just so worried that it hasn't worked. I am walking better (before the op I walked differently to normal to take away some of the pain) I am now trying to walk normally although it hurts more but I am trying.

His anyone had their coccyx removed and it hasn't worked? How do you cope? I'm scared

Any emails would be greatly appreciated.

This website has been a great help I don't feel like I am the only one suffering anymore.

Update, 2006-09-17

I am now seven weeks post-op, and although the operation pain has gone completely, I am still in a lot of pain and to be honest, I don't think the operation has worked. I went back to the hospital on Monday, and my surgeon said he expected me to be sitting at that appointment. That didn't happen and it feels like it did before I had the operation. I have good and bad days really. I was told that I am still extremely swollen and tender in that area, so he wants me to go back in two months so I can have another MRI scan (if I had it now all that would show up would be the swelling) to see what other explanation there is for the pain.

I haven't laid on my back yet, and although I have tried sitting down the pain is excruciating and I have to stand up. Before the operation I walked funny in order to compensate for the pain. Now I am trying to walk more 'normally' in order to stop people staring!!! Although it is still very difficult.

I'm sorry that this email cant be more positive, but this is how I am feeling. I have just been told to keep trying things and to keep mobile.

It's weird that something so small can cause so much pain and turn your whole life upside down isn't it?!

Any emails greatly received

Update, 2006-10-29

Its now 14 weeks since the coccygectomy. I am walking better, nearly normal!! But I am still in a lot of pain. I feel as though I have not had the operation and I'm just like I was before I had the op.

At the moment I am waiting to get an appointment for an MRI scan through, so they an see what to do next. Is there any reason why I cant lie on my stomach for the MRI scan? I was told I can only lie on my back-which I haven't done since January!

I still can't sit down normally, or drive, but I have bought a directors chair, which is canvas. I can push the canvas far enough forward so that my bum doesn't touch anything and I can sit like that for about half an hour. At least I almost look normal!!!

I think the next stage is to modify my car so it's like the directors chair. I don't know what else to do. I'm trying to be positive but I just feel like my life has been put on hold.

Update, 2007-2-04

Well it has been quite a while since I was last in contact. Part of me wanted to distance myself - to make it possible that it wasn't happening to me. But it is and here's my update.

When I last posted I was waiting for an MRI scan. Well I had that and it showed a mass where my coccyx was, about 3.5 cm diameter. It was concluded that it was an abscess and I would have it operated on the following week. In a way I was pleased because they were doing something!! For a couple months prior to the scan I had been getting excruciating stabbing pains which would bring me to tears and sometimes screams. I felt that the abscess was an explanation to the pains. However, on the day I was due to go in for op it was canceled because one of the radiologists thought it might not be an abscess. So more scans were done and they thought that it might be a seroma - a sac of fluid which can form after having an operation. I was told it would go away on its own.

I was then told that there was nothing more that my surgeon could do for me and I was referred to a pain management specialist. I was told almost immediately by the new guy that it was nerve pain and don't expect to get better very quickly. I was then put on a nerve drug for 2 weeks over Christmas. It made me very woozy and disorientated and didn't have any effect so I was glad when I was taken off the drug.

I then moved onto acupuncture again which had no lasting effect and now I am trying out a tens machine as well as my 'normal' pain meds. I have to wear it all day for 2 weeks which feels really weird. Its taking away a small amount of pain, but as soon as I remove it the pain returns (which I was told it would do).

I am going for another MRI scan on Friday to see if this 'seroma' is still there, then back for the results on Monday. I am not driving yet - I can't sit down still, but we have had the passenger seat modified which has been brilliant, and we would do that in the drivers seat, but I cant risk it with these stabbing pains I have been having (they are still happening).

So here is my update. I will update you more when I have seen doctors next week.

Also, I reached my 1 year anniversary of accident a couple of weeks ago. I was going to have a bum party but never got round to organising it!!

Thanks

Update, 2007-09-09

Well to cut a long story short, in February I had the seroma drained and sent off for testing. It came back negative and no infection which was good news. The bad news was nothin was doing anything for my pain. I am still on tramadol tablets which I think I have now become immune to.

A few months went by and I have found new pain management lady who wanted to do a procedure on me - a caudal epidural, which I had on Saturday. As of yet, not any difference. I just feel a bit down and no one can explain what theses stabbing pains are that I keep getting,. They come on whenever they want and can last for minutes or seconds. I look forward to hearing from others in pain soon.

Thanks Lindsey

Update, 2008-03-23

Hi, just thought I'd give another update.

I'm back to pain management in the morning, had another injection about 3-4 weeks ago and no difference. Quel surprise!!! I'm on morphine patches at the moment, but having terrible allergic reactions to them :( so I need to see if those can be changed tomorrow.

The good news, however, is that I'm now DRIVING I cant tell you how great it feels to be FREE!!!

I had to have my car seat modified by this great guy my dad knows. There's a big hole out of the seat where my bum 'hangs' as long as I keep my chair bolt upright its not too bad. Still in a lot of pain, but trying to get on with things.

Hope everyone is well, any questions just ask,

Lindsey

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