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Cholesteatoma - My Story

Posted , 3 users are following.

callum7062
callum7062

Hello I am 14 years old and have had Cholesteatoma in both ears.

It all started when I was 5 and my parents had noticed that my hearing was going down, they took me to our local GP who then directed us onto ENT, Edinburgh. 

It took a whole 2 years for ENT to diagnose the Cholesteatoma and a further 3 months to get my operation. The operation went well but lost 1/3 of my hearing in that ear.

jumping ahead 4 years later I had a small operation to clean my ear out, my doctor came out shaking his head as he had found out that the Cholesteatoma had returned. 3 months later I had my operation. The Cholesteatoma had destroyed all hearing bones leaving me with little hearing in that ear.

8 moths later I had an MRI scan to check that it hadn't returned again. A few weeks later the results had came in. I came home from school to find my dad's car in the driveway. I knew it had returned. I was wrong though I was told it was found in my other ear.

 I had a hearing aid fitted as I would need it after my next operation I was very nervous about having my operation and it had been delayed for 2 years before I decided to go through with it. 

I had a lot of support from my family and from everyone at the hospital before going in and I was surprisingly relaxed about going in. 

After my my operation I had lost most of my hearing in that ear and need my hearing aid full time since I've had plenty support from my family and have been at school full time for about a month now with no problems hearing.

This is my story and I hope it helps people in the future.

any questions feel free to ask.

0 likes, 3 replies

3 Replies

  • Rainbowsnsun
    Rainbowsnsun callum7062

    Posted

    Hi Callum

    Thanks for sharing your experience.

    My son is 5 and was diagnosed with congenital cholesteatoma just over a year ago. We were concerned that his speech was delayed and had a hearing test. The audiologist werent sure what the 'white lump' was inside his ear and referred us to ENT. Thats when we found out about the cholesteatoma.

    Looking back it makes sense, whenever I took him to the doctors as a baby/ toddler(for other problems such as chicken pox/allergy etc) and they would routinely check the ear and say 'ooh he has a ear infection ill give him some antibiotics'. This happened a couple of times. I knew he didnt have a ear infection as he didntbhave any symptoms of it but they saw the growth and assumed it was an infection.

    Anyway after cat scan and discussions etc he had surgery in June to remove the cholesteatoma. It was a 5 hour operation and the consultant revelead that the disease has eaten away some of his ear bones leaving him with reduced hearing in that ear.

    The consultant now wants to do a second look in operation soon to check if it has returned.

    After the operation we can then start looking at using a hearing aid to help him with his hearing.

    Not looking forward to surgery again,hoping it hasnt returned. I was under the impression that surgery would remove it and he can get in with his life but now come to realise it can come back at any time.

  • Mipam
    Mipam callum7062

    Posted

    Hi Callum,

    You've had it bad.

    I'm very sorry to hear it went that way for you.

    Why did it take 3 months after the diagnosis to get surgery in both cases?

    Thats why too long and these three months it did way more damage.

    Are you able to hear with hearing aids now?

    I have hardly any hearing in my left ear after surgery.

    Also, an infection followed, but I did expect that as I have primary immunodeficieny disease. I do expect it to return as the problem is with my eustachain tube and nothing is done to remedy that. Did you have sinusitis as well?

    How's your situation now? Do the hearing aids work?

    Thanks,

    Reinoud.

    • callum7062
      callum7062 Mipam

      Posted

      Hi Reinoud,

      The NHS (children) waiting time in Scotland is a maximum of 3 months and my surgeon is the otologist for the south-east of Scotland so that is also why it took so long.

      My hearing is very good with my hearing aid and I have no problems hearing anyone. The only difficult part is making sure it's all clean.

      No I don't have sinusitis and my situation now is very good I'm coping at school and have no worries about not hearing.

      Callum.

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