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Cholesteatoma

Can you help? Discussions needing a reply

  • Headaches

    My daughter, Jordan, is 8.5 years old. In 2014 I was concerned about her hearing because her speech wasn't maturing as it needed to. In 2015 we found a cholesteatoma. In May 2017 we had it surgically removed, along with damaged bone, and she had a prosthetic bone placed last month. The Dr went in...

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  • Recovery and long term results

    Hi, my daughter has various problems which have caused eustacian tube dysfunction.  She's had glue ear all her life (she's 8) and constant 'wet' ears and infection after infection, to the point where they're immune to most antibiotics.   She's been diagnosed with cholesteatoma...

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  • My experience with Cholesteatoma

    Hi everyone i just want too share my experience with cholesteatoma, due to the fact when i was diagnosed with it, i really couldn't find much on the internet about it. It was a very confusing thing for me to mentally deal with. My name is ben and throughout my whole child hood life, i had continuos...

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  • More info on cholesteatoma

    Hi, I thought I'd share this website, I found it really helpful, more extensive info than I've seen elsewhere and reasonably easy to understand:   http://entkent.com/cholesteatoma-and-mastoid-surgery/  

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  • Concerned parent

    My son was diagnosed with hearing loss at birth he has ears that fold over his left ear has been diagnosed with cholesteatoma the dr. Wants to do a third scan this time mri because of his ear shape he has a higher chance of hitting the facial nerve. We have no choices but to go threw with surgery risking...

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  • Headaches

    My daughter, Jordan, is 8.5 years old. In 2014 I was concerned about her hearing because her speech wasn't maturing as it needed to. In 2015 we found a cholesteatoma. In May 2017 we had it surgically removed, along with damaged bone, and she had a prosthetic bone placed last month. The Dr went in...

    Posted
  • Is this a cholesteatoma in my ear? (PHOTO IN THIS POST)

    Hello everyone! I was diagnosed with Eustachian Tube Dysfunction a little less than two months ago. Started with a severe cold, flew to Jamaica and back for my anniversary, came home and realized something was wrong. My symptoms are ongoing pressure in my ears, mild ringing/pain/discomfort in both ears....

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  • 3 Surgeries later...

    I joined this group to offer my story as a resource for others currently dealing with this disease. I remember how much research I did prior to my first operation and am thankful others have shared their experiences. It provided me a level of comfort knowing I was not alone in dealing with this issue,...

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  • Nerve pain in ear

    Hi there,  I've had numerous ear surgeries, my last being a mastoid obliteration back in 2013. I have unfortunely had so much done to the ear that the nerves have been damaged. I can't seem to find a pain relief that suits me. I work as a nurse so any of the neuralgia tablets (gabapentin,...

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  • Diagnosed very young

    I'm writing in regards to my son. He was diagnosed when he was 7. He has had multiple surgeries on both ears but the left is the worst. We have always been told he should and probably would grow out of cholesteatoma. Well he is now 26 and still has ongoing symptoms and or issues. The number 1 issue...

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  • Cholesteatoma research

    There is frustratingly little research into cholesteatoma. Anyone can suggest ideas for research for the NHS, NIHR ‘research for patient benefit’ scheme here: https://www.nihr.ac.uk/research-and-impact/research/suggest-an-idea-for-research/#form Does anybody know of any other ways we get cholesteatoma...

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  • Hearing after cholesteatoma surgery

    I am 22 and was told I have cholesteatoma yesterday. Even after getting recurrent infections in my right ear once every year for the last 6 years I did not think a condition of this nature would exist. So it came as a major shock to me! I know it is rare but if not treated can cause many complications....

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  • Clostoma needs more research

     Hi iam 22 my names kirsty  I have problems with my ears every day since I was 3 years old  started off as a pulp in the ear but then had constant infections up until a year ago and got the devastating new I had a clostoma in my right ear along with mastoid surgery .  Then I whent...

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  • Just Diagnosed

    Hi, I have just been diagnosed with a Cholesteatoma. I have complained about a full feeling in my ear for "years" but never really checked into it.  I have complained off and on of the feeling of water in my ear and the Doctor just would give me antibiotics to clear it up and this process...

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  • Popping and muffled sounds in ear after chelesteotoma surgery

    I had a chelesteotoma surgery and repaired eardrum about 5 weeks ago and I just went back to working out and when I was doing exercises that raised my heart rate my ear starting popping and sound felt muffled and I could hear my breathing out of that ear. Should I be worried. I'm calling the doctor...

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  • Continuous wet ear

    Had 1st mastoidectomy in 2011 which went well, then the Cholesteatoma returned in 2014 and had a 2nd mastoidectomy. During the 2nd surgery they removed a portion of my ear canal so they could look into the Mastoid with a scope rather than having to wait for weeks at a time for a CT Scan. I...

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  • C-Toma

    Hi all can anybody share there experiences please as i am now suffering with constant ear ache in my opposite ear after 16 months since i had my C-Toma removed.My consultant has said that the ear is clear? so why am i constantly in pain,has anybody experience this too? I am also still not 100% right...

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  • Granulation after CWD mastoidectomy

    I had a canal wall down mastoidectomy in 2013 to treat a rare (and very large/complicated) external ear canal cholesteatoma. Everything has gone well until a few months ago when we discovered granulation tissue that has formed in a part of the cavity, possibly caused or at least exacerbated by attempts...

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  • Mastoid Obliteration vs Ear Canal Enlargement

    I've had at least 3 mastoidectomies, 4 tympaniplasties, the ossicles in my right ear are gone, and I wear a BAHA. 2 weeks ago I met my newest Specialist, who told me that a combination of tiny ear canal and where the drainage sits in my mastoid cavity they are cleaning "blind". He gave...

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  • Mastoid cavity obliteration

    I am on the waiting list for one of these operations. I had a radical mastoid op when I was 11 am now 45 and having serious pain so after many oils ointments and sprays this seems like the last ditched attempt. Having had the op explained to me I was wondering if anyone else had had it done. 

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  • Bleeding out of ear....normal?

    Hi,  I was diagnosed with cholesteatoma about a month ago. My surgery is scheduled for September 27th. I was finally diagnosed after a very painful month long infection. The infection is gone now and I feel no pain. I have been getting discharge out of my ear; Mostly wax and some white cheese-like...

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  • Cholesteatoma - KTP Laser or Traditional Surgery

    Hi, My 8 year old son has been diagnosed with c-toma and is going through initial diagnostics. He has been diagnosed with it in his right ear and he has significant loss of hearing there. His left ear has a lot of wax and needs cleaning which the doctor could not remove in his surgery. The short we have...

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  • cholesteatoma worry

    Hi - our son of 6 has had ear infections on and off for the past 2 years. Initially a grommet was put in and since his hearing didn't improve they performed a recent operation to Investigate. we have now been told that he has cholesteatoma. When the doctor explained this to us he said that it...

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  • Experience with KTP Laser surgery ?

    I just got diagnosed this year with a Cholesteatoma, after a heavy mid ear inflammation in June, following a severe cold. Before that I had no problems with my ear. My hearing was virtually lost during the inflammation but recovered pretty well, I guess only a 30 % has gone in my right ear. I live in...

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  • Anyone only have one surgery?

    I keep reading these stories of everybody having multiple surgeries. Has anyone only had one surgery, and never had their cholesteatoma come back?  I've had two surgeries, one to clear the cholesteatoma when I was 10, and one to clear scar tissue on my rebuilt eardrum, and check if there was...

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  • worried about cholesteatoma op

    Hi, My name is Chris and in Oct of last year (2009) I had very bad pain in my right ear and started to get some foul smelling ooze from my ear. When I visited my docs I was told that I had a very small hole in my eardrum, but it was nothing to worry about as it would heal fine. After several visits...

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  • Chlosteatoma surgery, leaking stitches!! please help!

    Hi, My girlfriend had chlosteatoma surgery a week and three days ago, everything seems to be healing pretty well. Then about two nights ago she woke up in a little pool of blood/fuild leaking from her dissolvable stitches which smells like the disinfection pack in her ear. Is it normal the have a leak...

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  • scl scl

    cholesteatoma op & recovery

    When my 14 year old son was diagnosed with cholesteatoma last year, I rushed home & searched the internet for information. I found a very good site that explained in more detail what I had been told by his consultant & this one giving people's experiences (perfectly understandably...

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  • Please help cholsemetoma

    I have a cholsemetoma, and have been putting off surgery for 5 years as I'm petrified of hospitals and going under. The last few days I have been getting the worst dizziness and I'm really worried

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  • 6 year old daughter recently diagnosed

    Hi there, My daughter has been having chronic blood and smelly discharge from her ear for over a year.  She has recently had a CT scan which shows a cholesteatoma.  She is scheduled for surgery in March.  Her hearing is below average in the affected ear and I was wondering if her hearing...

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  • Cholesteatoma - Numbness

    Hi there,  I am 24 years old and have recently been diagnosed with "the monster". I have suffered with ear problems for as long as i can remember, I've had endless amounts of grommets inserted as a child and as an adult i have had 2 myringoplasty/tympanoplasty operations.  I...

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  • Something like mucus on my throat

    Hi everyone, Life was running all fine till the day I felt like there's something stuck on the back of my throat, and it has been exactly a month today. At first, I just ignored it, thinking it was phlegm and would go away within a day or two. After some days, as the problem persisted, I visited...

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  • PreOp symptoms and coping

    I have been dealing with ear pain, pressure and fullness since the beginning of may. After 3 antibiotics and 2 steroids I made my way to the ent who poked a hole in my drum and tried to drain and vacuum. Noticed something that wouldn't come out and put me on some drops and more steroids. 2 months...

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