Cholesteatoma ... The hidden symptoms

Posted , 3 users are following.

i have bilateral cholesteatoma and had one op in January 2015 on right ear to remove the sod ... It is also present in the L ear and I am due to have another op in July as my hearing has lessened by 10% in 3 short months in said ear! and that was my good ear .....

To say I am a little p*ssed off about it is an understatement. NOT about the disease I have but about people's reactions to my deafness. 

The shaking of heads when I ask them to repeat what they said, then the way they talk like me like I am a simpleton when they repeat it, the LOOK ( hard of hearing peeps will know this look!), that they give because of the energy it must take the lucky sods who aren't deaf to repeat what they said. And the saddest thing ... The way I am left out of conversations because I am not worth the higher volume in their speech or they just shove the subtitles on TV cos that will make it better! 

Welll .... I am a a tough one (Manchester gal gutted this has happened to me as only 46 years young) and ain't putting up with feeling guilty for my, not asked for, deafness any longer! I feel isolated and subject of jokes at home and work. Would they take the Michael out of the blind or other disabilities? Doubt it! 

Audiology on Tuesday for hearing aid fitting then onwards n upwards! 

To all been newly diagnosed - the op is fine, not too painful, you will be fine.

Rant over for now 

Debs x

1 like, 7 replies

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7 Replies

  • Posted

    Hi DebFCUM

    I might be deaf, somewhat more in one ear than the other, but I HEAR YOU LOUD AND CLEAR!

    My Mom [who was also deaf] summed it up perfectly when she used to say "Deafness is the most widely misunderstood disability."  When she finally got a hearing aid [with a battery as huge as a tranny radio, which fitted in her shirt pocket, with a long lead dangling to it from her ear] she found that when people saw her wearing the device they SHOUTED at her.

    I 'enjoy' the same situations as you have described.  Particularly being spoken to in loud, clear syllables as if I'm mentally daficient.

    The new hearing aids I'm wearing are not much better than the previous ones I grumbled about for years.  I thought I was very fortunate when my Hearing test [with Australian Hearing in Toronto NSW] was conducted by a fully qualified ENT Surgeon who happens to prefer working at the 'front line'.  He called for a CT scan which revealed my cholesteatoma problem.  However, my GP has received three knock-backs from ENT Surgeons who are not prepared to accept a Pensioner patient.  I doubt I'll ever get help with the cholesteatoma problem, but at least I'm hearing a little more than I could before.  Keep in touch?  It's nice to read messages from fellow-sufferers.

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  • Posted

    Hi,

    thank you so much for your reply and understanding. 

    Your mom was a wise a wise woman! 

    I cannot believe that your Australian health authority will not operate! Blatant age discrimination and my advice is to take it further. Funny you said that because when my ENT doc diagnosed me he said he normally sees cholesteatoma in over 80 year olds and would not operate on them (presume for health reasons due to anaesthetic?). They will have guidelines that they have to adhere to I expect? Fight it! 

    Please don't give up. I am going to be very vocal now regarding hearing loss and the devastation it causes to your life. 

    Thanks again and I hope you are ok.

    debs x

     

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    • Posted

      Mmmm.  Well I'd probably be close to 80 by the time I got in to see one, because minimum waiting time is 12 months ... to get onto the waiting list!  I haven't given up.  I'm trying to establish just what sort of costs are involved.
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  • Posted

    So glad to hear you aren't giving up! I think it's awful that you are not being treated because of your age! Quality of life is so more important than quantity of years in my experience and quality is being able to see, hear and feel life. 

    So frustated for you! 

    Debs x

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  • Posted

    Where did you get the idea that 'age' was the reason for me not getting in to see an ENT?  I don't think that was an issue at all.  It's the fact that I'm a 'Pensioner' and they won't accept 'Public' patients.
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  • Posted

    My ENT consultant told me if I was a pensioner he wouldn't bother ... The UK has totally different guidelines to OZ ... But surely good practice should over rule age? 
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    • Posted

      My Mom was born in England [Wiltshire] and came out to Australia by ship at age 7. She went 'Home' to visit Rellies when her Mother [my Grandma] was newly widowed at around 70 yrs, to 'catch up' with the family.  Mom was horrified when she learned that, even though she was a 'tourist', she still qualified for 'free' Health benefits!  Being honest through and through, she refused to accept that privilege..
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    • Posted

      My Mom was born in England [Wiltshire] and came out to Australia by ship at age 7. She went 'Home' to visit Rellies when her Mother [my Grandma] was newly widowed at around 70 yrs, to 'catch up' with the family.  Mom was horrified when she learned that, even though she was a 'tourist', she still qualified for 'free' Health benefits!  Being honest through and through, she refused to accept that privilege..
      Report / Delete Reply

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