TMJ Disorder due to Cholesteatoma

Posted , 4 users are following.

Hi all,

Has anyone experienced TMJ issues from surgery to eradicate the Cholesteatoma?

My 4th surgery on 11/13/15 has left me unable to speak, eat, yawn or do pretty much anything, including facial expressions. At age 28, this is quite debilitating in many ways...

I hope no one is experiencing this.


1 like, 4 replies

4 Replies

  • Posted

    Oh no really sorry to hear that! Mine lost me my taste nerve and that's frustrating enough.. Since my surgery everything has gone really well considering how bad my toma was .. but to be honest a little too well 😕 I have a feeling it's all going to come back though!

    Have they said how long you will be like that for?

  • Posted

    Hi Bryan I'm so sorry to hear of your problem, sounds terrible. Do you know if it's facial nerve connected or a problem with TMJ? I'm due to have surgery this Saturday for c'toma in my external ear canal that apparently has eaten through jaw bones. Not the usual place to find them and although the treatment and after care are the same I luckily won't have my long term hearing affected I have no idea what the prognosis is as I have only met with my ENT for 10 mins 4 months ago after being referred to a city hosptal when my local ENT's decided they couldn't do the op. All I have is the internet for info and my my it's not pretty is it? I have yet to speak to anyone else with External canal c'toma but the problems you are having are at least in the same area as mine. How's your hearing? Is it affected too? Are you likely to recover?
  • Posted

    I had acute pain on chewing (which I expected) and swallowing (which surprised me) post-op for one month. It became apparent after my third visit to the specialist unit that there was post-op inflammation in the mastoid cavity adjacent to the TM joint. When treated with antibiotic both locally and orally this rapidly improved. of course it is sometimes necessary to drill off cholesteatoma near or, rarely, in the TM joint which may cause some unavoidable problems. i advise you to have it checked.

    Hoping all goes well with you....

  • Posted

    Oh no,  this sounds like you should sp;eak up right away.  Thank you for bringing it to our attention in this forum & sharing.  This is something to be aware of for all.  I hope a remedy will be fast for you!  I'm sorry I have no other suggestion except to follow some others recommendation to see a neuro-otologist that specializes in cholesteatoma immediately.  I don't think it ever hurts to get second/third opinions.  

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.