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Cholesteatoma

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  • Cholosteotoma post surgery

    I had a cholesteatoma operation a week ago and have had shooting pains from my temple up around two inches in my head, I wondered if anyone can tell me if this is normal please? Thanks

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  • Laser surgery for cholesteatoma

    Hi, I am wondering if I can connect with a few Irish people here and ask has anyone tried the laser surgery for cholesteatoma and if so, what are their thoughts. I can’t seem to find a hospital that does it in Ireland.

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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 …

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  • Recovery

    Hi all, just seeking some advice. I’m 1 week into recovery following a wall down surgery: currently my ear is weeping quite a bit, like bloody watery discharge and is still swollen & stuck out. It’s tight and numb to the touch, causing a lot of discomfort when laughing/moving. The tightness is …

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  • Cholesteatoma after surgery...

    Hi I had surgery in March, after 30 years of glue ear I had my first op to remove Cholesteatoma 11 years ago.  I suffered badly with dizziness and went to the doctors so many times eventually referred back to ENT and CT scan later told them it had returned.  I waited a YEAR for the op …

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  • Story about Chlosteatoma

    I decided to make a completely different discussion board because there were so many forums about Chlosteatomas I wanted to reply to and I felt the need to do a general discussion for anyone needing advice/wanting to read. It started with ear infections! it was like they never ended and all the ENT …

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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 …

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  • Consultant recomendation for my daughter - 9 years old

    Hi, I have just found this site.  I was wondering if anyone could possibly recommend a good paediatric ENT surgeon/consultant for my 9 year old daughter.  She had cholesteatoma in both ears, has had 3 operations (2 to remove in ears and 1 to try to improve her hearing which didn't …

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  • Advice on Questions to ask.

    I am looking to learn from your experiences. This Tuesday I go in for more tests, additional MRI and a CAT scan as well as follow up with my Otolaryngologist. I want to make sure I am asking all of the right questions. He thinks this is congenital and I have just now been diagnosed at age 50 so I …

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  • Packing Removal

    I've had my mastoid surgery and everything went okay, I'm due to have the packing removed and the Dr said he used 3 gauzes, I'm feeling very nervous about it and wanted to hear about other people's experiences.

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  • Laser treatment for cholesteatoma

    My 5yr old son has been diagnosed with cogenital cholesteatoma and we are considering laser surgery as an alternative. Does any one here have any experiences with this type of surgery that they can share here? Does anyone know what the reasons are why the laser method is not more widely adopted …

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  • Can a cholesteatoma re-occur?

    So, around 6 years ago I was told I had a cholesteatoma quite deep inside my left ear. I underwent 3 operations, the first was to look at the severity of it,  the second was to remove it and to reconstruct one of the bones that had been eaten away and the third was a double check to make sure …

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  • ear issues

    Has someone heard about lenticular process of incus erosion ? How serious this diagnosis is and if it comes to a surgery, does anyone knows how complex the surgery would be? Thank you so much in advance to any reply.  

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  • Problems with titanium ear implant

    I was diagnosed with a chorlsteatoma in May,2016. July 26,2017 I had a 4 hour surgery. It was wrapped around my facial nerve and ate away 2 of 3 hearing bones. January 13,2017, I had a 2nd surgery for my titanium implant. I was good for a while. March 6, 2018 I had tubes in both of my ears(1st time …

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  • My experience of laser surgery for Cholesteatoma removal

    I am at week 7 after having my cholesteatoma removed by laser in mid March this year.  To be totally honest it was quite a shock back in February to be told that I had something called a cholesteatoma and that it would need to be removed ASAP. I then made the fatal mistake of coming home and …

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  • Cholesteatoma 3rd surgery for my child in few days

    My 8 year old daughter was diagnosed with cholesteatoma in March/2017. That's when the first surgery was performed. Over 3 hours -and many bones had to be removed  including the support around the facial nerve. She was left unable to hear out of her right ear.  We thought the 2nd …

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  • Care for the canal after Mastoidectomy

    Hi all.  I am 47 and have had many ear issues since I was a child.  (tubes, infections, ect)  I have had 3 different surgeries to remove a cholesteatoma.  The last one in 2011 removed my tympanic bone as it was mostly destroyed.  I have titanium prosthetic and actually have …

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  • Cholesteatoma incurable

    Hello! I had a mastoidectomy at 20 years old, 14 years later and 9 operations later I am still suffering from a cholesteatoma, the last operation I had was a tympanoplasty, but because of the scarring in my ear, the skin graft didn't take, I have been going to hospital for regular clear outs …

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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 …

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  • Cholesteatoma without symptoms?

    Hi, my ENT recently referred me to a specialist because of a suspected cholesteatoma. As a baby and young child, I had many ear infections that resulted in a number of tubes. My hearing loss went undiagnosed for a while until a teacher noticed I wasn’t responding. I was 95% deaf in my right ear and …

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  • I had a successful mastoid surgery, can I help anyone?

    In March I made a post on this talking of how fearful I was for I had been diagnosed with Cholesteatoma, reading over it brought back alot of memories of how scared I really was and how at the age of 14 I was left uneducated on my diagnosis dismissed as being merely a kid who was likely to not …

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  • Recently diagnosed with Cholesteatoma

    I just received a diagnosis of large Cholesteatoma in the right ear. I have had bad ear infections off and on for years. Also, issues with balance for many years. The hearing test confirms total hearing loss in right ear. Some high-frequency hearing loss in left ear. I will be getting …

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  • Sweet taste.

    About 4 years ago I had a chlosteatoma removed it was extremely large erouded away all the inner ear parts and the bone separating the ear canal from the brain and it had started growing into my brain. I did have bone conduction hearing aid installed. Recently I've been experiencing an …

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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 …

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  • Laser surgery for Cholesteatoma in North Eest US (NY,NJ)

    Can anyone recommend a good doctor in the NYC / NJ area, preferable that does laser surgery?  My son has had 2 surgeries and we fear the Cholesteatoma has returned. I can only find the doctor in the UK that does KTP laser surgery recommended on this board. Thank you, Bill

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  • Shirley Evans

    Had Tympanoplasty soon Friday. Came home Saturday dinner time. All Friday night was wide awake with excrutiating pain. No pain medication touched the pain (liquid morphine given) and then 30mg of Codeine administered due to severity of pain. Helped slightly but Saturday morning more …

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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 …

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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 …

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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 …

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  • 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 …

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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 …

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