I Have Cholesteatoma

Personal Stories, Advice, and Support 66 People

    Hey my names Alex, I'm 20 years old.

    I found out I have had Cholesteatoma in my right ear for YEARS now, I noticed this lump behind my ear Years ago I'm thinking maybe 6-8 years ago :( and I was way too scared to tell anyone! I just tried to forget about it because I thought it was cancer!! And I didn't want to...
    alex123098 alex123098
    22-25, M
    2 Responses Nov 27, 2014

    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 your stories. I am currently a 27 year old female living abroad in Germany. As far back as I can remember, I have had ear issues. I started...
    gspence08 gspence08
    31-35, F
    Aug 8, 2013

    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 consist even today. If you have this disease my heart goes out to you cause I have delt with the draining, the...
    2 Responses Jan 7, 2013

    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  to have a operation on March 29 , 2010 but I'am so afraid to the point I'am getting very depress and over come with fear .
    Sue313 Sue313
    36-40, F
    3 Responses Mar 6, 2010

    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 cool I thought ill be able to hear after this sack of fluid is out. Or tumor as doctor s day. Not knowing any risks or issues...
    renea30 renea30
    31-35, F
    3 Responses Mar 27, 2013

    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 said it needed to come out soon i had an inner ear fistulization so that the cyst will constantly drain and he went under my...
    sarahdg sarahdg
    18-21, F
    1 Response Oct 8, 2009

    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 infections both outer and inner. Hearing loss, tinnitus/ringing & buzzing/whooshing. Got to age 21 and had my first bout of serious Vertigo (acute...
    leeandoona leeandoona
    3 Responses Feb 19, 2013

    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 go away..:/ this time I have had headaches, sinus infections for four months misdiagnosed now I have facial preasure on my left side and weird feelings in my head. I...
    navymom91 navymom91
    36-40, F
    Feb 13, 2013

    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 came back and sum pain ... Vogt made to stay in hospital after they said I just had a nasty severe infection , now after going...
    Kelb79 Kelb79
    36-40, F
    4 Responses Sep 6, 2013

    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 any don't understand the impact it has on peoples lives. My story........ As a young child I had ear problems and...
    vs1991 vs1991
    26-30, F
    2 Responses Jan 29, 2014

    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.  He is taking pain medication but we arent getting aknofe to last between apointments so he drinks so he wont feel the pain. At...
    LiveingOnedayAtATime LiveingOnedayAtATime
    18-21, F
    4 Responses Jan 5, 2010

    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 ago. After 25 years the cholesteotoma came back and caused complete facial nerve paralysis on the left. I was diagnosed first...
    billycoder billycoder
    2 Responses Jul 10, 2013

    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 ENT knew what I had but did nothing. I finally saw a wonderful doctor who explained everything to me right away, needles...
    sparrow18 sparrow18
    36-40, F
    1 Response Nov 30, 2013

    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 a year of being on antibiotics almost permanently my gp referred me to an ent clinic who said my ear drum looked like it had collasped and i...
    samij13 samij13
    22-25, F
    5 Responses Oct 30, 2012

    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? or home remedy? i dont have insurance and cant get checked out by a doc. Also surgery is out since when i had it in...
    JessicaSalvato JessicaSalvato
    6 Responses Feb 2, 2011

    Hey my names Alex, I'm 20 years old.

    I found out I have had Cholesteatoma in my right ear for YEARS now, I noticed this lump behind my ear Years ago I'm thinking maybe 6-8 years ago :( and I was way too scared to tell anyone! I just tried to forget about it because I thought it was cancer!! And I didn't want to...
    alex123098 alex123098
    22-25, M
    2 Responses Nov 27, 2014

    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 the same time. Only now I'm finding the ear very sensitive to cold and touch, it keeps disturbing me at night. Also the scarring at the top of the ear is...
    loopylou86 loopylou86
    2 Responses Oct 6, 2012

    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. The first one I really liked, Dr. Gambrell, and unlike the other two doctor's was actually taking next steps towards my recovery. He then left the...
    cstanisloo cstanisloo
    2 Responses Nov 16, 2012

    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 finally getting better and it's not as bad. Still I have those really bad days where my ears hart so much I just want to...
    Carlock44 Carlock44
    16-17, F
    2 Responses Nov 10, 2013

    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 routine cleaning became my nightmare. The ENT wasnot prepared for what he would see a large cholesteatoma. It was...
    debbee debbee
    61-65, F
    1 Response Feb 24, 2013

    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 to now. Born with group B strep I believe this is how I contributed to this disease. I had my first set of tubes at 2 months of age. From...
    dbyer78 dbyer78
    22-25, M
    2 Responses Oct 8, 2013

    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 less long term affects but it has a high rate of failure. Another option is canal wall down. They are left with a much larger ear...
    Ammon44 Ammon44
    1 Response Aug 29, 2012


    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 infections So changed my doctors too refur me too the E.N.T ward at the hospital Had the C.T scan and was confremed...
    Jessejames69 Jessejames69
    31-35, M
    3 Responses May 10, 2012

    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 felt so heavy, so it all started, endless appointments at Tameside Hospital (Greater Manchester, UK) and my consultant...
    Alexandra159 Alexandra159
    18-21, F
    1 Response Feb 9, 2014


    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 wanted to perform a ct on the bones behind my son's ears so we said ok.  After surgery he came to us and...
    momtoanangel momtoanangel
    2 Responses Mar 1, 2009

    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" lanced it and perforated the eardrum. I have had tubes inserted numerous times and of course lots of pain. In September 2012 I began with a copious...
    Macneanie Macneanie
    2 Responses Jan 12, 2013

    hiya! I'm 16, and I have congenital

    cholesteatoma. I've had them since I was born (duh) and I was actually that one kid who was the youngest to have one removed, go me! Articles galore! My first surgery was when I was barely 2. My parents found out what it was because my behaviour changed and I complained that my...
    janelisbet janelisbet
    18-21, F
    Sep 21, 2014

    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 that knew what he was talking about. He has already had a CT scan and now we are waiting on the results of his MRI. They want to see if...
    tysyd20 tysyd20
    26-30, F
    2 Responses Jul 21, 2012

    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. please contact me if you have this problem. we may be able to help each other trembler
    trembler trembler
    10 Responses Jan 23, 2009

    I am currently 16, I have had a re-occurring

    Cholesteatoma in my left ear. When I was younger I used to get lots of ear infections. When I was 7, I had an ear infection that did not go away so my mother took me to the doctors. From there I went to the hospital and during 2005 - 2008 I had 2 polyp removals, a grommet placed...
    liliennex liliennex
    18-21, F
    May 31, 2014

    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 story short I decided not to have surgery the surgeon wasn't that pleased but agreed as I was so terrified of the...
    Val120747 Val120747
    66-70, F
    4 Responses Jun 12, 2013

    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 removed and then still had ear issues so I started going too the ear house Clinique in orange. Had reconstructive...
    Blakecarter227 Blakecarter227
    26-30, M
    2 Responses Oct 31, 2013

    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 complications. Her eustachian tube is blocked and was born with a malformed middle ear. She is just about to have her fourth operation. She has an MRI...
    Trelissa Trelissa
    22-25, F
    Mar 19, 2014
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