Post

I Have Cholesteatoma

Personal Stories, Advice, and Support 60 People

    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

    Your Response

    Cancel

    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 22-25, M 2 Responses Oct 31, 2013

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 3 Responses Jun 12, 2013

    Your Response

    Cancel

    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 16-17 2 Responses Nov 16, 2012

    Your Response

    Cancel

    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 61-65 1 Response Jul 10, 2013

    Your Response

    Cancel

    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 22-25, F 2 Responses Jan 29

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 26-30, F Aug 8, 2013

    Your Response

    Cancel

    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 22-25 6 Responses Feb 2, 2011

    Your Response

    Cancel

    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 16-17, F May 31

    Your Response

    Cancel

    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 36-40 1 Response Aug 29, 2012

    Your Response

    Cancel

    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 18-21, F Mar 19

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 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

    Your Response

    Cancel

    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 56-60, F 1 Response Feb 24, 2013

    Your Response

    Cancel

    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 2 Responses Feb 9

    Your Response

    Cancel

    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 36-40 3 Responses Feb 19, 2013

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 26-30 2 Responses Oct 6, 2012

    Your Response

    Cancel

    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 2 Responses Mar 27, 2013

    Your Response

    Cancel

    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 18-21, M 2 Responses Oct 8, 2013

    Your Response

    Cancel

    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 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 31-35 2 Responses Mar 1, 2009

    Your Response

    Cancel

    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 61-65 2 Responses Jan 12, 2013

    Your Response

    Cancel

    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 13-15, F 2 Responses Nov 10, 2013

    Your Response

    Cancel

    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 66-70 10 Responses Jan 23, 2009

    Your Response

    Cancel

    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

    Your Response

    Cancel

    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 31-35, F 4 Responses Sep 6, 2013

    Your Response

    Cancel

    Related Experiences

    I have recently been diagnosed with Vestibular Migraines. I have had trouble with my ears since puberty, cholesteatomas, Eustachian tube dysfunction, multiple surgeries, etc. In...
    Outriggers Outriggers 36-40, F Aug 8

    Your Response

    Cancel
    So I've been having this bed bug problem in my room for a while. Since the beginning of June to be exact. My dad hasn't put out ANY effort to fix the problem the past month and a...
    TheMasterMan1 TheMasterMan1 16-17, M 7 hrs ago

    Your Response

    Cancel
    I have one year left at my community college and I don't even know what I want to major in after I continue. I'm currently majoring in Liberal Arts and Sciences/General Studies...
    jahein137 jahein137 18-21, F 6 hrs ago

    Your Response

    Cancel
    I am obsessed with curly hair. I make it a point to try to compliment almost everyone that I see with great curly hair! People really appreciate it, too! I have naturally curly...
    NYX78 NYX78 36-40, F 1 Response 4 hrs ago

    Your Response

    Cancel
    When I was a kid, i used to have a ton of friends, then i moved.... Everyone i knew was gone. After that i never really had any friends. I would always just get through school...
    Snsndmdmam Snsndmdmam 26-30, F 1 Response 7 hrs ago

    Your Response

    Cancel
    Look at the girls in the group and what Each individual lady might be most inclined to accomplish. Once you understand your pals’ Choices and budgets, you have to be...
    Wendolynce106 Wendolynce106 31-35, M 1 Response 33 mins ago

    Your Response

    Cancel
    Money or No Money Having been sitting down for over 2 hours, I decided to hide myself in the conference room. For once, it was all silence. The only sound I could hear was the...
    cedicoin cedicoin 26-30, M 1 Response 15 mins ago

    Your Response

    Cancel
    ( will have google translate to help me to) I don't know why, I have been using someone's laptop and the internet has been messing up so if it keeps messing up a lot he told me...
    Blazingdragon Blazingdragon 13-15, M 8 hrs ago

    Your Response

    Cancel
    After thinking hard about past events in my life, i came across the many times i have gotten the mail nude. Only until recently have i felt some sort of remorse for the many men...
    AnonR AnonR 70+, T 1 Response 8 hrs ago

    Your Response

    Cancel
    I have been very busy this last few weeks. i work a lot as it is! These last few weeks have taken me to some pretty strange hours of the day. I have been getting up at 2AM and...
    johnlament19 johnlament19 18-21, M 5 hrs ago

    Your Response

    Cancel
    for the first time ever i got a beauty salon to agree to put makeup on me as i have always wanted the whole girly experience of sitting down and a female makeup artist doing my...
    andrew1987 andrew1987 26-30, M 30 mins ago

    Your Response

    Cancel
    I've probably had it for as long as I can remember, but I didn't discover it until my middle school/early high school years; I randomly started looking up pregnant women on the...
    therapeuticmindfuckery therapeuticmindfuckery 22-25, M 8 hrs ago

    Your Response

    Cancel
    I wake up. Can't breathe. Feel like I'm going to die. Why does this happen to me? Despite some horrible things that have happened in my past, my life is great right now. I have...
    beautifullybrokengirl beautifullybrokengirl 18-21, F 3 Responses 8 hrs ago

    Your Response

    Cancel
    I have known that this was an actual thing for a couple years now. My parents still don't believe that it's an actual form of OCD and they keep telling me to "just stop". I have...
    cyrn97 cyrn97 16-17, F 8 hrs ago

    Your Response

    Cancel
    I have this weird thing I do with my father and it starting off high 5ing each other web we said something funny or were being smart *****, and now it's like distant elbow high...
    emzeymoore emzeymoore 16-17, F 4 hrs ago

    Your Response

    Cancel
    I don't know what it is but making friends is so difficult I'm so terrible at making eye contact and have been friendless all my life and I'm in my 11th year of school and I still...
    brodeejade brodeejade 16-17, F 1 Response 3 hrs ago

    Your Response

    Cancel
    I don't even know when I'm supposed to sleep anymore. I work 7 pm-7am three to four times a week. It sucks because I miss out on so much and then when I get a day off I can't do...
    Tigerlily53 Tigerlily53 18-21, F 1 Response 2 hrs ago

    Your Response

    Cancel
    So..I was suddenly awaken this morning by hearing my nickname being whispered in my ear..then he said it urgently again in my ear, as if to wake me up. I jumped up and looked...
    LOOKN4NSIGHT43 LOOKN4NSIGHT43 41-45, F 1 hr ago

    Your Response

    Cancel
    I have a very complex sense of humor. Not saying it would take a genius to understand my jokes, not at all.. Only people who I have more of a connection with seem to get my humor...
    StoneColdNipZz StoneColdNipZz 18-21, M 3 Responses 1 hr ago

    Your Response

    Cancel
    Indeed I do have glasses and if I don't wear them I hope I have the ability to see like a bat because I'm blind...
    thatniceguy101 thatniceguy101 18-21, M 15 mins ago

    Your Response

    Cancel
    I have a major crush on my female boss and it's driving me so crazy!! I've been working at my job for a little over a month now, and I can't help but to think about her all day...