1. Community
  2. Ears, nose, throat and mouth
  3. Cholesteatoma

Cholestetoma came back so soon

Posted , 2 users are following.

marie_45668
marie_45668

My daughter had a mastoid op to remove cholestetoma aged 3.. We spent the following year with a grommet in her opposite ear helping her hear. This grew out and was replaced. Then this again was due to be replaced in dec. sadly it could not be done as a cholestetoma was present and to add to the devastating news the other is present again in her previously operated ear. So from a routine grommet op we've come out requiring a double mastoid op to remove cholestetoma from both ears.. My daughter is now 5 1/2 and has been given a hearing band for the first time.. Her face was amazing. For the first time she could hear her own voice and mine was different (she said) and she could hear lots of new noises around her in that split second it was like a door had opened to a new world to her. I will never forget the look of complete glee on her face during that very second and the tear in my hubby's eye as I glanced around. None of us had any idea that her hearing had been so poor as her speech and vocabulary is very extensive and she's excelling at school thankfully.. The surgeon is astounded at how well she's done so far without any aids. I guess it's because she's lived with issues since birth I'm guessing and I've been particular in her word pronunciation since very small. I've always turned her face to mine to correct her and ask her to repeat and I think she's possibly mastered lipreading without us even knowing! She doesn't have complete hearing loss but not sure what's going to happen after the double op. I have every faith in the children's hospital in Birmingham. Her last op was at Sheffield children's and they were excellent too.. In between we had been at burton hospital and I have to say from my experiences if you have children with this then ask for a referral to a children's hospital as they really do know best how to handle our little ones and give them that extra care.. My little girl has been left to manage without aids under the normal system and in her first visit to the children's she came out with a hearing band which has changed her life!! I owe this to our gp who I have to say has been fantastic when I've needed him most. Next for us is a CT scan on Thursday to assess the damage then await the op dates. Tough times ahead but I will never let her know that. She only every sees positivity from me whatever I'm feeling. It's the only way to get through it all and she's such a confident little girl that I just never want to dull her spark. We helped her feel so good about her aid that she couldn't wait to get to school and stage class and rainbows to tell everyone all about it.. Thank goodness she's still young enough to trust in me without any hesitation and I'm able to answer the 100 questions a day about anything and everything as honestly as possible!! I've likened her need for her hearing band to my need for contact lenses which she already understood.. Until I put my eyes in I cannot see very well.. Until she puts her band on she can't hear very well.. It really was that simple and she embraced it whole heartedly..

3 likes, 3 replies

3 Replies

  • david36046
    david36046 marie_45668

    Posted

    This young lady's progress to date has been helped very much by your own positive attitude and management.  You deserve congratulations for this. It is not uncommon for cholesteatoma in children to recur, as it tends to be a more aggressive disease in the first place. Often a second operation will be successful however. It is good that she is under expert care. It will be important to liase closely with schoolteachers and ensure that she sits in optimum positions in class as she progresses through the educational system. All the best for the future!
    • marie_45668
      marie_45668 david36046

      Posted

      Many thanks. School have been great from the start as when she joined reception she was awaiting a grommet so her hearing was poor. They kept a close eye on her without separating her.. Apparently she automatically positions herself on her good side of the teacher and chooses to sit at the front etc and I have every confidence they will support her all the way. With her new band on she came home last week after 5 days at school and said.. 'Mummy I could sit at the back today and still hear miss' she was so pleased with herself. Thanks for your kind words and good wishes.
  • cici73674
    cici73674 marie_45668

    Posted

    Thank you so much for sharing your story!!  Best of luck to you, especially your daughter in moving forward with progress!  Regards!
Back to top

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.