Long life cholesteatoma sufferers

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HI..I am a veteran of cholesteatoma.Had 9 surgeries .Lost all the hearing because of being misdiagnosed for 20 years.Now I am 41, waiting for a surgery to repair one labirinthine fistula (which gives me bad vertigo) on the right ear.On the left ear I have cochlear implant that needs to be replaced because of cholesteatoma.I would like to know if there are cholesteatoma patients in their third age that are doing fine enjoying life and recovering after surgeries.I dont know what is going to happen how I am going to handle this.I am 41 and single mum and hope to be well for my kids.

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  • Posted

    Hi Adriana

    I am 44 now and have bilateral choloesteatoma.  Had left ear op carried out 4 years ago and my right ear 2 years ago.  Aside from a 30% reduction in hearing in my left ear I am thankfully now non dizzy, vertigo has gone and life has pretty much gone back to normal.  Recovery was slightly longer after the right op as I took a bad reaction to the packing resulting in me now being allergic to Iodine

    Still visit surgeon twice a year for check ups, fingers crossed they wont come back.  Hard as it is and as horrible a disease as it is I try and remain as positive as possible, wish you well and hope your operation goes well vertigo is a horrible thing.

    Best Wishes


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  • Posted

    Hello. I was diagnosed when I was ten years old. I have had seven surgeries relating to coleastoma. I am now forty six.

    I usually see the specialist two or three times a year, when the check my mastoid cavity. I have had three operations on the mastoid and reconstruction surgery. It's been over twenty years since my last surgery. My hearing is not great, but I have adapted. I still have a lot of infections, and that as always been a concern as I have a young son. Has I have gotten older I know the things to avoid. Keeping my ear dry, I quit smoking. I was told when I was first diagnosed swimming was not a good idea.

    I keep anti-biotics in the house and I rub olbas oil around my ear. I even use antihistamines because my ear is easily irritated. Things do get better. It might not feel like it now, but it does. Good luck.

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  • Posted

    Hi Adriana

    I too am a veteran and had mine done over 40yrs ago although at the time they put off an operation saying it would clear up by itself only to change consultants and the new one had me admitted straight away informing my mum that he could not believe that they had put it off and to prepare for the worst. At that time they didn't have the technology that they have today so the operation basically meant seeing what he came across which resulted in a radical mastoid so I lost all hearing in my left ear due to removing my eardrum and drilled four holes for drainage. I did get facial nerve damage due to the surgeon cutting my tongue which apparently was normal at that time although thank god my face didn't drop and I still suffer from tinnitus and dissiness which is to be expected. Otherwise apart from being rejected for certain jobs for obvious reasons and the odd comment about my flatten ear i feel I have lived a normal happy life. I never knew these forums existed and never gave it much thought until recently when I found out that I have another infection which I never knew could come back so decided to look into it more. Otherwise for the last 40 years I have had monthly check ups and micro suction. Obviously am now worried about another operation as there's nothing left to take out. It's more the case of any complications. My only advice to anyone is smoking is a big no no even being near someone who smokes do your best to keep away from anyone with a cold and the obvious be extra careful when washing your hair or having a shower.

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  • Posted

    My son has suffered from colesteatoma since the age of 5 he has had 6 operations to remove colesteatoma and is now completely deaf in right ear totally dead ear.

    He has had mastoidectomys, regular micro suction and he still suffers badly. He is now 12 nearly 13 and it's affecting him now more than ever.

    It's attacked his balance system and his taste senses. He can't eat anything hot as it causes lots of pain and the infection is now in the cranial facial nerve area.

    He has now been offered a obliteration of the right mastoid and blind sac closure. This has been offered by professor because my son can't even stand as the balance has been badly effected.

    Colesteatoma and chronic ear disease is not supported by any one and it's so sad because it's so debilitating.

    We have seen our son go through life changing difficulties and is still suffering now and we get no help or support at all.

    I wish u all well and hope your issues are sorted soon

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