Jaw replacement

I've struggled on for the last few years, having initially declined a joint replacement, but my mouth function has gone downhill. I'm on a soft/purée diet and not sleeping due to the pain, both of which are making me very miserable.

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 off work and pain management post-op. Due to confidentiality, my surgeon can't put me in touch with any of his previous patients. I know it's not commonly done and it's not as straightforward as something like a hip or knee. One big worry is that he can't estimate how long the joint lasts for, so I could be looking at revisions every 10-15 years. I'm 28, so would be making a big commitment. Another worry is coming off RA meds prior to surgery but I'm seeing rheum this week and will ask her. I'm on MTX and humira and find that when I'm due my fortnightly humira, I REALLY need it. I'm scared of being off it for a period of time, even a short one. Max fax surgeon is amazing and he says the outcome is, statistically, likely to be good. I trust him but fear is holding me back.

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.

10 Replies

  • Any joint could need replacing after a periodn of time even joint that have been put in. The after the op period will depend on you,if you do your exercises the outcome will be good and it COULD take up to three months recovery time,i am goin on how i got on after my knee replacement. Once your op is over you can restart your meds so the period of time could only be a week. You won't regret it once you have had it done,you will wonder why you didn't have it done earlier. It will be painful to start with and each day will get a bit easier darling. I wish you luck and we will always be here if you need to talk.xxxx

  • Thanks, Sylvi. Not sure if there are exercises but there must be? I need to make plans re work and sick leave. It's all a bit worrying. Not sure I could cope with 3 months off work but I have a busy, stressful job and need to be on top form.

    Regret is an interesting one. I know the potential side effects are scary and I'm worried that I will regret it if I affect my career. I still need more info, I think. I'm still so terrified.

  • I'm sorry you are having to face this - it is such a difficult decision to make whether to have a replacement as there is no going back. I can only speak from having a knee replacement (at 48 years) and there are lots of those happening and you don't hear so much of jaw replacement. What does not help is the amount of waiting between consenting and the operation as you swing from yes to no all the time. For me I realised that things could not go on as they were and that was 3 months after my rheumy first wanted to refer me to orthos - the consultants do not take these decisions easily. I'm so glad I went ahead and I shall face any revisions when the time comes as surgery and techniques advance all the time. Farm

  • Thank you for your thoughts. My consultant said I'll know when I'm ready but so perhaps I'm not ready.

  • Hello Crashdoll. A way around confidentiality boundaries is to give the consultant your number or email address for him to pass onto a previous/current/potential patient who will then have the choice to make contact with you. I am sure you are not the only one on his clinic list who would really appreciate discussing all aspects of this operation. Perhaps the quickest way to do this is through his medical secretary at the hospital and she could get your request out to the right patients.

    Best wishes to you. Sandra

  • That's a good idea, thank you. I've found a couple of people online through HU so I'm feeling hopeful, and glad I asked on here.

  • Yes you can usually find others online who have been thru similar things. Also speak to this RA charity as they may have someone to talk to you. I had a lady I spoke to about rituximab and I still talk on phone to her sometimes. Its so good to talk to those who have been there. Good luck.

  • Crack doll, just 28 and facing this is just so sad. However if you turn t around at 28 you have many, many years n front of you when you return to your normal life again. I started to have problems with my jaw within months of diagnosis and have progressed to having my jaw locked on several occasions and syringed every three months to get all the decaying bone and whatever other gung is in there. I have a hole in my left jaw and I'm working on one in my right jaw. My DS has been wonderful and injects into my jaw with steroids when I'm 'locked'. I know a replacement is on the cards for the near future and like you I'm really not looking forward to it mainly because I live in Ireland and would have to travel to London's Kings for the op. Also as you have said there is a serious lack of information available for people like us.

    I'm sorry I can't give you any advice about the actual op or the after effects. I looked it up on Dr Google and was sorry I did! There was a foto that looked like it was from the 50's of a woman, well I think it was a woman as the patient had their entire head and jaw completely wound up in bandages......frightening to say the least! Do you have a Rheumy nurse? Although I have thee most wonderful Rheumy Consultant I find I can talk to my Rheumy nurse about everything and she is very forthcoming with info.

    Sorry this is all I can do to help you. If and when you decide to have the op Crashdoll I would very much appreciate you letting me know all about it as I too have no one to turn to for first hand knowledge.

    I wish you all the very best and please, pleas don't forget about me if you do decide to go ahead. I know it easy to say but think at your age you need to think about your future and be realistic. Not easy I know, the decision is entirely your Darlin. Thinking of you......Jean XXX

  • Hi Jean

    I'm sorry you're in a similar position. I can't have anymore arthroscopies or arthrocentesis. Consultant said couldn't access one side of the joint at all - think it was the left side. He said he wouldn't put me through another general anaesthetic when he knows it's pointless as they can't wash out the worst side or inject it.

    It's hard to be rational when you're hungry and sleep deprived. Think I will better after a good cry!

    Sophie xx

  • Awh, you poor thing. You are suffering so much aren't you? Try going to see your Rheumy nurse. They a wealth of information and have a lot of influence with Consultants. I really wish I could say or do more to help you. Please keep n contact won't you? I'll be tuning of you. X

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