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I Have Cholesteatoma

Personal Stories, Advice, and Support 55 People

    I Have Cholesteatoma - First I want to say thank you to all of you for sharing your stories. They have been really helpful. I have been dealing with this since I was 19. My first...
    sparrow18 sparrow18 36-40, F 1 Response Nov 30, 2013

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    Cholesteatomia Nightmare - Hi I'm renew 1 year ago I was diagnosied with this ear disease cholesteatomia. One week after seeing an ent. The following week I was in surgery. OK...
    renea30 renea30 31-35, F 2 Responses Mar 27, 2013

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    I have Cholesteatoma and interested to hear how other people cope and their symptoms and any advice they have as so far I am realising not many doctors know much about the disease...
    vs1991 vs1991 22-25, F 1 Response Jan 29

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    Long Given Up - Hi my name is Bryan, I have cholesteatomas. I've had problems with this as long as I can remember I've had at least 4 surgeries throughout my childhood and problems...
    2 Responses Jan 7, 2013

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    Four Surgeries In My Lifetime Now Need A Fifth..Very Depressed - I have had chronic ear infections all my life. Gour surgies, now need a fifth one. Did not now till now they never...
    navymom91 navymom91 36-40, F Feb 13, 2013

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    I am a female aged 18. At the age of 6, my hearing went downhill very quickly, my first ear infection caused me to pass out and scream in pain because I couldn't lift my head up it...
    Alexandra159 Alexandra159 18-21, F 2 Responses Feb 9

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    What To Expect Any Advise Appreciated - ive had an ear infection for the last year horrible smelling and coloured discharge hearing loss facial paralysis the list is endless after...
    samij13 samij13 22-25, F 5 Responses Oct 30, 2012

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    I Have Cholesteatoma - I am only 12 years old and I have been living with cholesteatoma ever since I was born. I have about 18 surgeries already and 5 sets of tubes. Thankfully I'm...
    Carlock44 Carlock44 13-15, F 1 Response Nov 10, 2013

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    Chronic Otitis Media With Cholesteatoma - Hey everyone, I'm new here to this forum. Just going to share my story with you. It started as earaches and mild infections from childhood...
    dbyer78 dbyer78 18-21, M 2 Responses Oct 8, 2013

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    So Scard Dont Know What To Do. -   I have an  Cholesterol granuloma of the left  petrous apex .   Can someone please tell me about this  ,  I'm...
    Sue313 Sue313 36-40, F 3 Responses Mar 6, 2010

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    Husband Diagnosed With Cholesteatoma - Hi, my husband is 27 and was just diagnosed with Cholesteatoma. After 2 years of not knowing what was wrong with him, we FINALLY found a Dr...
    tysyd20 tysyd20 26-30, F 2 Responses Jul 21, 2012

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    Advice Please, Cholesteatoma 9 Months After Surgery - hi everyone, I had surgery to my right ear 9 months ago, all has healed well and had a prosthetic hearing bone put in place at...
    loopylou86 loopylou86 26-30 2 Responses Oct 6, 2012

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    My Story - Hi I was diagnosed with cholestiatoma nearly 5 years ago. After a bad ear infection which didn't clear up for ages. I had a ct scan which confirmed it to cut a long...
    Val120747 Val120747 66-70, F 2 Responses Jun 12, 2013

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    Confused - I think my son has Cholesteatoma, He just had his 3rd set of tubes put in on Friday and we seen a new ent right out of school just got his liscense and he had said he...
    momtoanangel momtoanangel 31-35 2 Responses Mar 1, 2009

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    My daughter has fetal anti convulsant syndrome, she is not the only child I know with FACs that has cholestetoma. She was dianosed wih chronic bi-lateral cholesteatoma with...
    Trelissa Trelissa 18-21, F Mar 19

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    Coping With Cholestetoma - was diagnosed with this condition 12 yrs ago,untreated chldhood ear infection. i manage my condition quite well. but there are many things i cant do...
    trembler trembler 66-70 10 Responses Jan 23, 2009

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    Surgical Options For Cholesteatoma - Our son was diagnosed 3years ago. He had 3 canal wall up procedures but each time it came back. Canal wall down is less invasive and you have...
    Ammon44 Ammon44 36-40 1 Response Aug 29, 2012

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    Recent Diagnosis But Not A Surprise - Hello All, So, I came across this site on one of my internet search binges and I thought I should contribute as well after reading all of...
    gspence08 gspence08 26-30, F Aug 8, 2013

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    Defective Ear - I have had problems with my right ear since I was a little kid doctors thought I needed tubes put in 4 times until they realized I had a cholesteatoma. Got that...
    Blakecarter227 Blakecarter227 22-25, M 2 Responses Oct 31, 2013

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    Mastoid Obliteration Surgery - Hi I have suffered with this disease for 10 years now and have had two surgeries in the past ,, was ok for nearly a year , then the horrible smell...
    Kelb79 Kelb79 31-35, F 4 Responses Sep 6, 2013

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    Cholesteatoma - Hi all I'm in my 30s and have cholesteatoma only just found out in feb after 2years Off ear infections, I only found out after I got fed up with the pain and the...
    Jessejames69 Jessejames69 31-35, M 3 Responses May 10, 2012

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    My Boy Friend Has A Cholesteatoma - My boy friend has a Cholesteatoma. He is getting bad and the Dr keep messing around and we still aren't sher when he will get it taken care of...
    LiveingOnedayAtATime LiveingOnedayAtATime 18-21, F 4 Responses Jan 5, 2010

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    Any Advice? - Hello everyone! I had Cholesteatoma surgery in 2005 for about a year now ive had pain and my ear smells.....anyone know anything that will take the smell away? OTC...
    JessicaSalvato JessicaSalvato 22-25 6 Responses Feb 2, 2011

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    Thank Goodness The Internet Has Cholesteatoma Info - I have had a "bad" ear for nearly 60 years. Started in childhood with what was diagnosed as a boil in my ear canal. The "doctor...
    Macneanie Macneanie 61-65 2 Responses Jan 12, 2013

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    Cholesteatoma - My Story From Pre To Post Op - 37, Male and live in the UK. Suffered ear related problems entire childhood and adult life. Severity ranged from glue ear, ear...
    leeandoona leeandoona 36-40 3 Responses Feb 19, 2013

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    I Have A Cholesteatoma - after severe headaches that were brushed off i had a scan to check my putuitary gland and they accidently found the cholesteatoma the doctor where i live...
    sarahdg sarahdg 18-21, F 1 Response Oct 8, 2009

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    Long Term Cholesteotoma - I am 60 and have had cholesteotoma since I was age 18. I had 9 mastoidectomies total, 8 on the left and 1 on the right. My last mastoidectomy was 5 months...
    billycoder billycoder 61-65 1 Response Jul 10, 2013

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    My Story - I started with ear infections at age 3. I am now 57. Cholesteoma had been my life. Two years ago I started having ear infection in rt ear. What wad suppose to be a...
    debbee debbee 56-60, F 1 Response Feb 24, 2013

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    Cholesteatoma Long Process Or Short? Doctor's Decide! - Hi, I am a 17 year old teenager and was recently diagnosed with a Cholesteatoma. I have gone through 3 different ENT doctors...
    cstanisloo cstanisloo 16-17 2 Responses Nov 16, 2012

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