1. < Ear, Nose & Throat (ENT)

Cholesteatoma: Anyone else want to talk?

Posted by genuinekim @genuinekim, Feb 8, 2019

Hello I thought I would add a discussion about cholesteatoma. I posted a bit about my story under introductions, but I wanted to know if there are others with cholesteatoma here.

Interested in more discussions like this? Go to the Ear, Nose & Throat (ENT) Support Group.

dserro | @dserro | Nov 30, 2022
In reply to @melrod1030 "I have had cholesteatoma in the same ear twice. I had ear issues my entire life...." + (show)
@melrod1030

I have had cholesteatoma in the same ear twice. I had ear issues my entire life. Infections, burst eardrums, hearing loss. It wasn’t until I was 23 years old and I worked at a medical facility, that I first saw an ENT Dr. I had an ear infection for a month, saw 3 different primary care Dr’s, and all of them said I had a terrible infection. One even said, “It looks like you’ve had this infection for years” and yet, they never referred me to the see an ENT.
Fortunately, a good friend of mine was over that department and got me in. The first Dr. I saw said the cholesteatoma was too extensive so he referred me to the chief of the department. Long story short, after several hours of surgery, it was discovered that the cholesteatoma had deteriorated everything in my ear. A mastoidectomy was done with a CWD. I lost all of my hearing in that ear and can only use a baha implant if I want to regain hearing. My balance has never been the same, I experience nausea on a daily basis, and struggle with communication since having this additional hearing loss. I had a reoccurrence in 2016 and the recovery from that surgery took me almost a year. However, we only get a handful of weeks off and then it’s back to life we go. So that was a major struggle that caused major depression. I am currently dealing with a double ear infection in that same ear. I’ve been on oral antibiotics 3 times in two months and am on two different sets of drops. I’ve been seeing my ENT every week so she can vacuum out the puss and fungus that grew on top of that infection. A culture was done and I’m now waiting on results. I am trying to get in to see my Otolaryngologist who did my last surgery so that I can get scans. However, it is so difficult these days to get through to speciality Doctors so I’m also waiting on a return call from his office. To top it off, they found a retraction in my son’s ear yesterday and suggested he also get scanned for cholesteatoma. So we will see where we go from here.

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I am so sorry you are going through this. Ear disease is the worst. I am 53 years old and have struggled with ear infections my entire life, but only in my left ear. I finally had surgery to correct it 7 years ago and have been lucky that so far it has not recurred. I am assuming that your surgeon was a Neurotologist- not just an ENT. If not, then please get yourself in to see a Neurotologist as they are the only ones qualified to do such complex surgery. Best of luck to you, and I would agree to get your son treated asap, as it is definitely genetic. My mother and grandfather both had ear disease. Good luck.

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lkaton9 | @lkaton9 | Jan 2, 2023

Hello. I’m new here and am looking for others who have experienced recurring cholesteatoma.

I had removal, left ear and then ossicular reconstruction (titanium implant) in 2010/2011. I had tubes placed in both in ears in 2015.

I have for the last 18 months had recurrent infections mainly in left ear, tube is still in place in left side but right ear expelled about 12 months ago.

I am awaiting an appt for MRI scan to check for recurrent cholesteatoma and on wait list for the left tube to be removed. I have recently been fitted with hearing aids that I cannot wear due to the infections.

I am totally beside myself with worry that I will have to endure further cholesteatoma surgeries and my medium hearing loss will become even more severe.

Can anyone else share their experiences of recurrence symptoms etc. Due to the titanium implant, I do not expect to have the same symptoms as the first time.

Would be very grateful for any help or advice ?

Many thanks 😊

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1 reply
charlie4 | @charlie4 | Jan 14, 2023

Is this what they call a possible tumor made up of dead skin cells and dead tissue in the inner ear?

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charlie4 | @charlie4 | Jan 14, 2023

If so, I possibly have it. I had meningitis from a bad ear infection and almost died a year ago. I am completely deaf in that ear and doc wants to remove all inner ear dead structures by cutting out a piece of skull, removing the debris, and sewing ear shut. Sounds barbaric. I am dizzy as hell every day now for a year. Haven't had a second opinion on a treatment. No new infections in that torn eardrum with exposed inner ear parts. Any ideas from docs at Mayo clinic to resolve my problem? Really need medical advice from experts. Can't go on this way. Charlie4

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jan 14, 2023
In reply to @lkaton9 "Hello. I’m new here and am looking for others who have experienced recurring cholesteatoma. I had..." + (show)
@lkaton9

Hello. I’m new here and am looking for others who have experienced recurring cholesteatoma.

I had removal, left ear and then ossicular reconstruction (titanium implant) in 2010/2011. I had tubes placed in both in ears in 2015.

I have for the last 18 months had recurrent infections mainly in left ear, tube is still in place in left side but right ear expelled about 12 months ago.

I am awaiting an appt for MRI scan to check for recurrent cholesteatoma and on wait list for the left tube to be removed. I have recently been fitted with hearing aids that I cannot wear due to the infections.

I am totally beside myself with worry that I will have to endure further cholesteatoma surgeries and my medium hearing loss will become even more severe.

Can anyone else share their experiences of recurrence symptoms etc. Due to the titanium implant, I do not expect to have the same symptoms as the first time.

Would be very grateful for any help or advice ?

Many thanks 😊

Jump to this post

Hello @lkaton9, Welcome to Connect. I don't have any experience to share with you but @judysmayo, @irene5, @melrod1030, and @dserro who have posted earlier in this discussion may have some experiences or information on recurring cholesteotoma.

When is your next appointment?

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Mentor
John, Volunteer Mentor | @johnbishop | Jan 14, 2023
In reply to @charlie4 "If so, I possibly have it. I had meningitis from a bad ear infection and almost..." + (show)
@charlie4

If so, I possibly have it. I had meningitis from a bad ear infection and almost died a year ago. I am completely deaf in that ear and doc wants to remove all inner ear dead structures by cutting out a piece of skull, removing the debris, and sewing ear shut. Sounds barbaric. I am dizzy as hell every day now for a year. Haven't had a second opinion on a treatment. No new infections in that torn eardrum with exposed inner ear parts. Any ideas from docs at Mayo clinic to resolve my problem? Really need medical advice from experts. Can't go on this way. Charlie4

Jump to this post

Welcome @charlie4. I'm sorry to hear that you have not been able to get any answers on your condition. Mayo Clinic medical professionals do not monitor these discussions. Connect is an online community where patients can connect with other patients and give and get support.

If you would like to seek medical advice from Mayo Clinic experts, please contact Mayo Clinic directly. You will find the phone numbers and an online form here: http://mayocl.in/1mtmR63

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dserro | @dserro | Jan 15, 2023
In reply to @charlie4 "If so, I possibly have it. I had meningitis from a bad ear infection and almost..." + (show)
@charlie4

If so, I possibly have it. I had meningitis from a bad ear infection and almost died a year ago. I am completely deaf in that ear and doc wants to remove all inner ear dead structures by cutting out a piece of skull, removing the debris, and sewing ear shut. Sounds barbaric. I am dizzy as hell every day now for a year. Haven't had a second opinion on a treatment. No new infections in that torn eardrum with exposed inner ear parts. Any ideas from docs at Mayo clinic to resolve my problem? Really need medical advice from experts. Can't go on this way. Charlie4

Jump to this post

Sorry you have gone through this. I had a similar situation but luckily was caught before it got as extreme as yours. I had ear infections my entire life, tubes, etc. They had somewhat subsided as an adult, but reared its ugly head when I was 46 years old. The doctors at Mayo Phoenix discovered that the cholesteatoma and infections had eaten through my middle ear, ear bones, and skull and my brain was exposed. They scheduled me for surgery immediately, but in the 3 weeks I had to wait they warned me about the signs of Meningitis. The Neurotologist at Mayo was able to rebuild my ear, plug up the hole in my skull, and gave me new hearing bones. My hearing loss is only at about 30%. It has been 7 years now I am forever grateful to the skilled surgeon who probably saved my life.

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charlie4 | @charlie4 | Jan 15, 2023

Thank you for your response. I am sorry for what you also endured, but at least you came out ahead. Hopefully there will be something some expert can help with my situation. At least a less barbaric solution for removing my inner ear damaged structures. Charlie4

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ranchomonk | @ranchomonk | Jun 11, 2023

Hello everybody I just joined this group. I’m 67. I’ve had four cholesteatoma surgeries and reconstruction’s. If anybody needs any help getting ready for one of them things, let me know. I’d be glad to talk. My outcome has been excellent at all times.

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joanne58 | @joanne58 | Sep 14, 2023

Hello, My son had a cholesteatoma removed from his left ear three years ago. It was so large that he had to have a reconstruction of his ear canal. Three years later it is growing again. His doctor would like to open up his ear canal completely this time so that if it grows back again he can go in endoscopically and remove. He says the only difference is he'd need to have it cleaned out professionally everythee months or so. We've been trying to get a second opinion but it's scheduled so far out and his doc says the sooner the better for surgery. Do any of you have thoughts/experience about simply removing the chlosteatoma and leaving canal in tact, or opening up to have an easier time with possible future removals? Also, he has some issues with balance but so far no change in hearing but has not done his hearing test yet. He is only 19 and I'm very worried about his quality of life.

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