Jaw replacement

I have Rheumatoid Arthritis and it has destroyed my jaw. I've struggled on for the last few years, having initially declined a joint replacement, but my mouth function has gone downhill recently. I'm on a soft diet and not sleeping due to the pain.

I'm beginning to come to terms with the idea of the operation but haven't said yes because I am terrified. :( I'd really like to talk to someone who has been through it, preferably in the UK. There's such limited info on the Internet but for my own sanity, I need to know what to prepare for e.g. time of work and pain management post-op. Due to confidentiality, my surgeon can't put me in touch with any of his previous patients.

I'd appreciate any advice from anyone who's been through it or even if you haven't......hearing advice helps. I can't bring myself to consent to the surgery. I know I need to. Thanks in advance.

7 Replies

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  • Hi crashdoll

    Sorry not had that particular replacement so can't offer specific advice. But, have you had other joint replacements?

    I've had hips and knee done. Touch wood, all remarkably successful.

    Has your surgeon told you what the usual outcome is? As it isn't a weight bearing joint and is a relatively straightforward mechanism, I would imagine it is one of the more successful- in terms of outcomes - joint replacement surgery options?

    Have they told you the risks and the potential complications? Have they given you any figures / stats on successful outcomes vs unsuccessful?

    If the pain is that bad, a successful joint replacement could be one of those 'why did I wait' things. Like I say I have no direct experience so asking your surgeon for more info would seem like a good idea.

    Ade

  • Hi Ade

    Thanks for your reply.

    Unfortunately, I was told that it is more complicated that hip or knee replacements. It's not commonly done and surgeon expressed concerns that, due to my age (28) I would need to be sure that I understand that it will need revising every 10-20 years. He wasn't able to give me a timeframe. He said closer to 10 which is a worry for me.

    I know the risks which are frightening me even more, especially facial paralysis and hearing loss - even if they are only temporary. I need to go back and discuss stats but NICE guidelines show positive outcomes for many.

    I worry about being off work for long periods, my sick pay and generally just feeling miserable at home for weeks on end.

    I'm feeling a bit low due to hunger and tiredness, so I think I need to wait till I'm feeling more settled before I make a decision. It's impossible to be rational at the moment. I did have some jelly and ice cream this evening which cheered me up a bit. :)

  • Hi crashdoll

    Tough one.

    Good that you at least have some useful contacts below who can give you their experiences.

    If it needs a revision every 10 years I guess the question is how many revisions are possible?

    I suspect you are correct about making a decision when you feel better / ok. It's easy to be negative when we feel down. Hopefully the therapeutic qualities of the jelly and ice-cream did their thing.

    Ade

  • There is at least one person who has had a TMJ replacement on the Spondylitis Society of America forum forums.spondylitis.org/ I will PM you his name, if you want to join this forum, and then search out his posts, or PM him about it. I know he went through similar to you, holding out for as long as he possibly could, but I think it was all worth it in the end.

  • Just missed your reply. Yes please! Thank you so much. I'm desperate to hear real life experiences.

  • Hi crash doll my daughter has had her jaw joint replaced in Liverpool, her surgeon was excellent he did put her in touch with one of his former patients by asking my daughter if he had her permission to pass her details rather than breaching confidentiality, if you want to pm me your email address I will pass it on to my daughter and I'm sure she will contact you, I am going on holiday Monday am for a week so will be then when I can pass your details on.

    Keep strong she has had several operations on her jaw so she will be able to talk you through it, she even has pictures of her scans.

    Take care Sheryl xx

  • Oh would you mind? Thank you so much. I'm crying reading this. I'm pleased to hear I might get some info. I'm just about to message you.

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