now waiting for a jaw replacement

claire33
claire33 Member Posts: 11
edited 10. Jun 2010, 08:08 in Living with Arthritis archive
I've got RA in my jaw and I've just seen the max fax surgeon and I've got to have jaw replacement surgery on both sides. Apparently my mouth opening is only 27mm and its not big enough to get a magnum in! I'm waiting now for PCT funding as it costs £20,000 :shock:
I still haven't found anyone who's had the op, and I really hope there's someone out there.... I especially want to see what the scarring looks like. That part really worries me..even more than the facial nerve damage or hearing loss possibilities.
Can anyone help put my mind at ease? :?

claire

Comments

  • snowball
    snowball Member Posts: 3,465
    edited 30. Nov -1, 00:00
    Hi Claire, I get r/a in my jaw too. Sorry I can't be of much help just wanted to wish you look with your op, I do hope it goes well.

    Julie x
    ((((hugs)))) n xxxxx to ya all
  • claire33
    claire33 Member Posts: 11
    edited 30. Nov -1, 00:00
    snowball wrote:
    Hi Claire, I get r/a in my jaw too. Sorry I can't be of much help just wanted to wish you look with your op, I do hope it goes well.

    Julie x

    Thanks Julie, unfortunately it will take about a year to sort out. They've got to make a plastic model of my jaw from a catscan and build the new replacements onto it. So I've got a long time to really worry and feel sorry for myself before it happens.

    Claire :roll:
  • frogmorton
    frogmorton Member Posts: 29,883
    edited 30. Nov -1, 00:00
    Hi Clair

    MY GOD!!!!!!

    You cant get a MAGNUM in???

    This counts as a medical emergency for def :wink:

    Only joking. I hope the funding comes through very soon - a few of us have jaw problems too so If you didnt mind it woudl be good if you could let us know your progress?

    Thanks ever so and we will try to support you too.

    Love

    Toni xx
  • dorcas
    dorcas Member Posts: 3,516
    edited 30. Nov -1, 00:00
    Hello again Claire :D
    I think I remember you posting before about RA in your jaw?

    there are lots of us peeps who have/ had arthritis in the jaw (me included) so we do understand some of what you are going through.

    I do hope you find someone who has already had TMJ surgery................ but suspect you might be the one leading the way here on the forum with this type of surgery :roll:

    I would think that the orthos will be able to answer your question about potentially scarring...why not give them a ring rather than worry over it for months to come while you wait for the prosthesis to be made? I'm sure they will not mind you phoning..they might also have a contact / group you could tap into for info and advice?

    Even though we peeps may not have had the surgery there is one thing for sure....we will support you through it, every step of the way :!: :wink:

    love and ((hugs)))

    Iris x
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh poor you. Mind you Magnums are not worth eating (so not true, only trying to comfort and failing miserably).

    I know nothing about jaw replacement but surgical techniques are refined almost on a daily basis now, especially facial ones, thanks to the explosion of vanity surgery. I also know that the use of something like Bio oil, post surgery, can have a positive result in reducing scarring. My physio, after my first synovectomy which left an 11 inch scar on my left knee, gave me (surreptitiously) pots of an excellent oil that my hospital used. I suspect it was the previously-named article. Whatever it was it worked. My scar ain't beautiful but it is a lot less worse than if I had done nothing. Don't try Castrol GTX tho, that won't work.

    I wish you the best of luck with it. What a thing to have to face, but I am sure you have courage by the bucket-load. Keep us informed of your progress with the funding etc. Thinking of you, Dreamdaisy.
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Oh Claire
    Sounds awful......sorry I cant help just sending you lots of {{{{{{}}}}}}}

    Love
    Hileena
  • speedalong
    speedalong Member Posts: 3,315
    edited 30. Nov -1, 00:00
    Hi Claire - sorry I don't know anything about jaw replacements - but definitely preferable to a jaw fusion!!!

    Write down all your questions and ask your consultant asap for answers .... better the devil you know. However - so much surgery is now all about minimal incisions, keyhole surgery and even working from the inside or under the hairline etc I really wouldn't expect the worst.

    I don't know if anyone on here has had this op ... if they have hopefully they will post soon and if not consider yourself the jaw-pioneer and resident expert. The consultant must consider it the right op for you - hospitals don't spend money lightly.

    Start writing a list of all the things you will be able to eat and do after the op ...

    Speedalong
    I have had OA since mid twenties. It affects my hips and knees. I had a THR on the left aged 30 and now have a resurface-replacement on the right - done May 2010.
  • lindalegs
    lindalegs Member Posts: 5,396
    edited 30. Nov -1, 00:00
    Hi Claire

    That sounds pretty grim and such a long wait, poor you. I shouldn't worry too much about scarring especially when you see what people have done to their faces for cosmetic surgery.

    I would think they're able to keep scarring to a minimum. It doesn't sound nice but they could possibly make the incision by your ear and then 'peel' the skin back and work underneath.

    You can always ask your surgeon when you next meet.

    Keep us posted.

    Luv Legs :)
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • marion1952
    marion1952 Member Posts: 963
    edited 30. Nov -1, 00:00
    Hi Claire

    Sounds like a brilliant operation - the Max Fac Sugeons are so gifted with what they can do these days.. I can't help you with any advice but just to say please keep posting and let us know how things go for you..

    Marion
  • carola
    carola Member Posts: 786
    edited 30. Nov -1, 00:00
    Julie

    So sorry to hear your problems. I get RA in my jaw too.
    I haven't experience of jaw replacement but I will be googling like mad to see what I can find out. Perhaps emailing research universities and places like that could help you find out more about it?

    Positive thoughts and support I am sending you.
    Carol
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    well go for mini magnums till it all over and done with not had it done but would imagine most of scaring would be under jaw bone so not seen can understand your worries but we are here for you even if only to offer shoulder to cry on good luck you must need it or they would not do it val
    val
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Good luck, I hope you soon get it over and done with. I dread to think of the silly jokes my husband would make if it were me!

    Seriously, I'm glad that their is something that can be done to help you. Pain in the jaw must be horrible and effect your ability to eat a healthy diet. I hope all goes well for you.
    Love Sue
  • denpen
    denpen Member Posts: 389
    edited 30. Nov -1, 00:00
    Hi Claire
    Ooh you poor love and we all think that we have problems having our hips, knees etc. replaced.
    I have OA in one side of my jaw but I am sorry I cant help you either I have not heard of anyone having it done, but I am sure that the surgeon would take great care with the stitching up after the operation they are normally really good when it comes to the face.
    I hope you do find someone that knows something about it then you can at least have a little support from someone who knows how you do feel.
    Take care
    Denise.
  • airwave
    airwave Member Posts: 579
    edited 30. Nov -1, 00:00
    I think you lot might have it wrong here, Magnum as in Dirty Harry 357 Magnum or Magnum as in lolly or more likely, Magnum as in Bollinger (hic) 'spray it all over me'!

    I hadn't realised that you could do much about the jaw joint as such, its a bit hard work letting the dentist in let alone anything else.....

    8) Its a grin, honest!
  • mairibc
    mairibc Member Posts: 19
    edited 30. Nov -1, 00:00
    hi claire. hope all goes well and that you dont have to wait too long. as someone said mini magnums are the way to go meantime :O) mx
  • page35
    page35 Member Posts: 1,081
    edited 30. Nov -1, 00:00
    Hi Claire
    just to wish you all the best with it, shame you got such a long wait.
    please keep us updated on how things are going, i have RA in my jaw too and do sympathize with you. i had no idea they could do this replacement.
    take care
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hi Claire, so sorry to hear that you need jaw replacement surgery. Sounds pretty drastic but just think how wonderful it will be when it's done! I wish that it didn't take so long to sort it all out for you though.
    As the other peeps have said, we may not have had this experience ourselves, but we will certainly be here to support you as best we can.
    Love Tilly x
  • lynnemarie
    lynnemarie Member Posts: 37
    edited 30. Nov -1, 00:00
    HI

    I also have arthur in my jaw, but am please to say it is much better now since my condition is under control!! they have threatened jaw replacement with me at one point, but hope its a long way off!.

    you just need to think, they wouldnt be doing it if it wasnt necessary! and i am sure it will be fine, and just think of how it will change your life for the better!!!

    good luck to you xxx