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Cholesteotoma treatment

Posted , 4 users are following.

sophie95
sophie95

I am 17 and had a radical mastoidectomy last November whilst doing my A Levels. I had been visiting the ENT clinic since the age of five and have always had hearing impairment in my left ear. After 3 gromit operations and hundreds of infections in the same ear throughout my life, a suspected Cholesteotoma was found by my new Consultant in Leicester. I was then sent for a CT scan to try and confirm the diognosis but this came back inconclusive so was sent for a MRI scan. However, this also came back inconclusive but I decided to go ahead with the exploratory surgery incase I had a Cholesteotoma as I knew the possible devaststing effects. I am so glad I did. A large Cholesteotoma was found that filled the whole mastoid cavity and had completely eroded all of my hearing bones. The operation took 4 hours and without it the Cholesteotoma could have spread even further back into my head quite quickly. I experienced slight after effects which included numbness of the head, lip and tongue and I had taste disturbance. However this has mostly now gone apart from the head numbness. I have also been left with deafness in the left ear but I am learning to manage with this. However, knowing if I had not chose to have the operation it could have been alot worse, my hearing dosen't bother me. I hope this has been of some help and I hope I can help any other younger people experiencing the same condition who are as scared as I was.

1 like, 4 replies

4 Replies

  • JSHHAND
    JSHHAND

    Posted

    I have just joined the forum. Thanks for sharing sophie. My son is 9 and getting his surgery march 28th. your story was helpful. Is a gromit the same as a ear tube?
  • sophie95
    sophie95

    Posted

    Hi, thank you for replying. I have read your story on the forum and I am sorry to hear of your news and if I can offer any help or advice please let me know. As far as I am aware a grommit is a bit different from an ear tube. I think the grommits just helped with the 'Glue ear' that I had as a child and helped to drain fluid. It has been a year since my surgery and I have since been back to the hospital for regular check-ups and (touch wood) everything is clearing up nicely. I have also had a pair of glasses made which have a bone conduction hearing aid fitted to the arm which now allow me to hear. These have made the world of difference to me as I was left deaf in my left ear after the surgery. However, thanks to these glasses my ear feels as good as new! I was scared also when I was diognosed as there is very little knowledge of the disease and being young, lasting effects where a worry but I have learnt to manage mine. I hope that you and your son are ok as can be and if you have any queries please contact me again smile

    Sophie

  • Becky157
    Becky157

    Posted

    Hello. I had a radical mastoid when I was 11. I am now 45 and awaiting a ct scan as I have really bad earache. Since my mastoid I have had no hearing in my left ear. I have also been really tired and my scalp has gone numb but only on one side. Ct scan is Tuesday and I am very worried. When I had it done when I was 11 it was ok but now I am an adult with kids of my own it's different. Hopefully I am worrying over nothing.
  • antonov
    antonov

    Posted

    Hi Sophie,

    4 years ago when I was 14, I also had a Radical Mastoidectomy in my left ear and was also left deaf in one ear. Losing my hearing was difficult for me. I was wondering if you could tell me more about the hearing aid you have on your glasses? did the NHS offer this to you? did you have bones removed from your ear or nerve damage in your ear?

    Thanks,

    Anton

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