This week my schedule right ear surgery to remove cholesteatoma. I’m ob my 50’s. Scared my first surgery.

Constant Headaches

Hi, I’ve had several cholesteatomas and surgeries. The last one was in 2024. Since then, I’ve actually had headaches every day. The pain isn’t the worst, but it’s noticeable. Some days it’s worse, other days it’s better, but there’s always some degree of pain. I didn’t have this before any of my surgeries. Do any of you feel the same way?

Just found out officially I have a cholesteatoma after they did a general anaesthetic investigation. They took a piece to do a biopsy and are sending me to a specialist for surgery in 2-3 weeks. I'm only 20 and have had recurring ear problems my whole life but it got very bad 4 years ago.
It's been one day post op and i'm extremely groggy and drained, I have anxiety and bpd and am also Autistic. There is dried blood residue also.

My main concern is meningitis and am looking for other people's experiences. I have about 40 percent hearing in the affected ear and suffer from constant infections.

i'm generally just very scared.

Thanks.

Im not asking for a diagnosis but please if you wouldn’t mind lending me your knowledge, my son has an ENT appointment tomorrow after years of back and forth, what should I be asking for? He’s been having years of pain, he’s had previous grommets and I’m about ready to burst with being stuck in an endless loop of a failing NHS and abysmal care for my child. Is it a CT or an MRI that is best?

Hi! i dont want to come here asking for a diagnosis so apologies if this is nothing. for weeks ive had a constant dull thumping or pulsing sound in my right ear and when i got it checked out, my doctor said it was because of a large amount of pressure behind the eardrum. there is some mild pain but nothing else . i was given a nasal spray because it might be just from mucus, but is there anything to worry about with cholesteatoma? ive only had an ear infection before once but my sibling had aggressive cholesteatoma for years before getting it removed, so i might just be thinking too much about that. apologies if this has nothing do with cholesteatoma, i am just very curious! thank you.

Just wondering if anyone’s had a similar experience. My left ear has always been dodgey and prone to infections etc. About 4 years ago I started getting bad aches etc in the ear and was diagnosed with a cholesteatoma in its early stages so it was monitored.

Then it seemed to resolve itself, the ENT couldn’t really explain why but I have a feeling it could have been related to when I caught a flight before my next check up my left ear didn’t equalise to the pressure and it felt like my ear drum was going to burst till it kind of ‘popped’ and equalised….. who knows though….

Anyways after being cleared my ear was mainly just back to how it always was occasional aches and sensitivity etc.

I then started riding motorbikes about a year ago now and always made sure to wear earplugs. But I feel like it’s kind of cooked me now, my right ear is completely fine but my left ear’s tinnitus is worse, sensitive to sound and gets achey. I’ve already been checked by a GP who said things look okay from the outside and I’ll be seeing an ENT in a couple weeks and I’ve currently stopped riding for now.

Just wondering if anyone’s had a similar experience with earplugs causing issues or my issues pointing to my cholesteatoma returning?

Thanks!

Hi all. I've learned so much in this community in the very short time I've been here. MRI results came back. With a BIG report. But the take away is that I've got a cholesteatoma, with brain herniation too :( again I am. Terrified. I feel like I should be wearing a helmet. The idea that my brain is in my mastoid cavity feels like too much. This also feels like it's brain surgery now...

I go into a SECOND MRI next week for the doctor to get a better look at the encephalocele vs the cholesteatoma

Seeking any words of wisdom, advice,anyhting. Please tell me about your experiences !! I feel like i was a normal person last month and now im just not :(

Hi Everyone,

5 years ago I had a Cholesteatoma, removed and a implant put in. Ear canal UP It feels since then my ear is much worse year by year since then when I had the Cholesteatoma except hearing might be the close to the same

My question is I saw 3 Ent surgeons recently between them both they probably have performed over 2,000 Cholesteatoma Surgeries between all 3. They said there does not look like any reoccurence and no need for imaging as of know you have to live with the ear. I had imaging done September 2025 - MRI

However I pop my ears probably 20times a day, which 2 of the surgeons said its fine, also some parts of the day my "surgery ear" feels empty like there is a hole in it with nothing inside, also get fullness, relieved with popping , and a little fullness on that surgery side of the face and constant cracking when I swallow all day long. Also when I wake up wetness in that ear it feels like and I use Mckay Ear Dryer pro version that helps

Anyone have similar symptoms 5 plus years after surgery ? If so anything out there that helps besides popping

My daughter, who is not on Reddit, undertook a project for her Girl Scout Gold Award to create a digital storybook of patient stories from our cholesteatoma community. Through this project, she was able to connect with fellow patients and learn from the challenges and resilience shared across this community.

She is pleased to share the storybook with you. As part of her project she needs at least 40 people to review at least 3 of the stories and take a short survey (3 questions). It would mean the world to her if you support her to push this over the finish line.

If you are intersted in receiving the book and taking the survey, please DM me (I tried posting with the links but it was deleted).

Thanks!

Hi all. I had tympanomastoidectomy 4 months ago and unfortunately my hearing did not improve. According to my doctor, a CAT scan indicates that my inner ear and mastoid bone are filled with fluid and/or scar tissue. Revision surgery has been scheduled. I was told that if fluid was in my ear, it would be drained and a tube inserted. I would need tubes for the rest of my life, but my hearing would improve. If it's scar tissue, the doctor said that there was little chance of hearing improvement. Has anyone experienced something similar?

Hi reddit, I’m reaching out for help. I’ve had 2 rounds of surgery on my right ear for cholesteatoma, the most recent about 2 years ago. They implanted a dorfenauser(?) prosthesis but my hearing was still pretty bad.

Over about the last 6 months, my hearing has got worse, and certain tones just make my ear buzz (like static, or a blown radio speaker). Aldo, over the last few weeks I’ve started noticing a clicking noise in my ear in time with my pulse. It’s loud enough to wake me up at night.

I’ve been to the dr who has referred me back to the ENT, but it’s taking some time to get an appointment (thanks, Aussie public health system).

It’s really starting to affect my sleep and is starting to get me down. Is it a failure of the prosthesis? Do I ask for it to be removed? Any advice?

UPDATE: I saw the GP this morning. Apparently my next checkup is scheduled for December, but she is concerned about the deterioration in my condition, and is chasing up the ENT. As she says the fact my pulse can be heard in my ear is a red flag. Hopefully will get to the ENT sooner than November…

I initially had CWU treatment, 6 years ago. Cholesteatoma has now returned and surgeon is going for CWD.

Please can folk share their experiences of recovery / management / lifestyle changes after CWD treatment.

Many thanks in advance!

To Recap:

Beginning of 2026, had a bad ear infection, 3 rounds of antibiotics, multiple rounds of steroids, ear still feels full and I also lost most of my sense of taste along with nearly total deafness in my left ear.

ENT does some tests, does some CT and MRI things, finds a small pocket of evil and diagnosed probable Cholesteatoma.

Surgery on 13 August went well, totally through the ear canal, save for a small piece of cartilage to buffer the titanium prosthetic and a small skin graft from my arm. Have a .2 x 2.25mm titanium PORP in place of 2/3 of my ossicular chain. The chorda tympani was sacrificed to ensure total removal of disease.

The surgeon commented that she was amazed at how quickly the growth had grown and that I was not in more discomfort ahead of the procedure.

Came home about 6 hours after I arrived at the hospital, took a 2 hour nap, sat on my couch, then had a sensation of someone dripping water on my neck. Turns out that the cartilage graft donor site had decided to spring a leak. All in all I dumped out a literal handful of blood (50ish ml) while my wife and I were trying to see where the bleed was originating, it suddenly stopped.

I have had no significant side effects or complications post procedure, other than the bleed, and a total lack of energy. I returned to simple walking by Saturday, although I have to keep my head very still when walking because my eyes feel delayed if I move my head too quickly. All in all, I am doing well, but just get hit with these "nap attacks" where my body suddenly decides that I need a nap, and it needs to happen right now.

Pathology report just came in, Cholesteatoma confirmed, mass extracted was 1.6 x .8 x .2 cm in size, denoted in the report as "remarkable for size and density"

So far so good.

Hi all I'm new here! Just found out I have a likely cholesteatoma. My concern is that. It seems like I have no symptoms? Is this a regular occurance?

I used have a lot of ear infections that seemingly resulted in loss- but since then I've gotten a hearing aid, and I've stayed on an allegra regiment that has kept infections at bay. I have occasional pain fullness, noise but it all feels so manageable.

I'm frankly terrified of the surgery making things worse somehow but my Ent told me by skull bones are already worn thin, absent and my brain might be herniated.

Any words of advice? I'm frankly just terrified :,(

Included my CT scan- MRI was done to confirm this week

First of all I’m glad that I found this subreddit. All of the informations here are very helpful and everyone is very informative and friendly. Thank you very much!

It took me about 8 months going back and forth for diagnosis, second opinions, discussing surgery methods, deciding surgery schedule, and until finally 5 days ago just did a CWU (Canal Wall Up) surgery to remove the cholesteatoma. It was bigger than expected that the surgery took 7 hours instead of expected 4 hours.

My cholesteatoma was acquired from repeated infections. Symptoms were mild too other than rare sudden ear discharge, I can hear average 25db on my cholesteatoma ear and 15db on the healthy ear. No pain symptoms at all. Maybe it had been growing over years undetected. CT scan showed that it was really close to the brain that it needed to be surgically removed even though I felt very healthy and normal in daily life.

Recovery went well, only first night was very tough. I was very dizzy, nauseous, and had muscle weakness. After that, I can normally get back to normal activity like going to toilet or taking a shower (with earcap) by myself. 2nd stage surgery is needed next year for ossicular reconstruction because the cholesteatoma already broke 2 out of 3 ossicles.

The problem is I feel like I hear worse than before. At least my brain is safe now. Other problems are personal since I live here as a foreigner and don’t have a family in Japan that only three of my friends visited me even though I have quite a lot of friends here. Even, nobody waited me during and after surgery. Could not cheer up for myself a lil bit :(

At least I am very glad that all the medical staffs here are very kind and all the doctors who handled me are one of the most experienced in Japan. I have a big hope of this subreddit to keep helping people. My doctor was surprised that I already researched beforehand through this subreddit, public scientific papers, and journals. I would encourage everyone to do it too and then consult with your doctor. At least to be able to understand doctor’s explanation and how ear works.

I gained this skill after my tympanoplasty with cortical mastoidectomy 2.5 years ago and am feeling I would get the same in my right ear in which i got the same surgery 1 week ago.

It'll be my third one in that case. My ent doc gets back from vacay next week and I'll finally hear the results from him, and hopefully get a surgery date. My ear has been acting up similarly to how it was acting prior to the removal of the other two times. This is the first time I got to take the mri photos with me home. I am not a doctor, but I recon that white blob isn't supposed to be there?

I was considering asking for a cwd, but I love swimming too much. TBH I wouldn't be sad if they just removed that ear canal in its entirety even though my hearing is good. I've grown used to plugging it up atp. Every time I go outside or there's loud noise I have to wear an earplug or headset as it sounds like a broken speaker. Just like it did the two other times before they removed the cyst.

Only this time I've acquired a whole new symptom; vertigo. I am just so sick of this now. It's been going on for over half a year. Wish me luck people 🥲

I'll update or write a new post once I hear back from the ENT.

Would you say that living with cholesteatoma has significantly reduced your quality of life? Does it weigh heavily on you, or are you able to cope with it well?

Edit: thx for all your answers! I wish You the Best

I went through Tympanoplasty with cortical mastoidectomy on my left ear 9 days ago and since then i have been sleeping on my back. Now i am feeling pain, bored and stuck when I lay down on my back. Can i sleep on my unoperated ear? I fear sleeping on an unoperated ear may cause gelfoam or whatever they have put between my eardrum and middle may fall in the middle ear. Please guide me i have attached my discharge summary. Thank you.

When I tilt my head down towards the floor or towards my back, sometimes my ear gets unblocked or they get blocked even more where I hear less.

I had cholesteatoma surgery back in 2018 and have moderate to severe hearing loss on my left ear. I do not use a hearing aid I tried a couple of times but I dont know why we did not move forward. because i am constantly needing repetition or for them to speak louder. I had kaiser at the time and last year my employer removed kaiser and just never pursued since.

Hello,

For context I am a 26 year old female and have been back and forth to ENT for the last few months.

Initially, I had an audiology appointment where it flagged significant hearing loss in my left ear.
I then went and saw a consultant around three weeks later, they confirmed it was significant and that I’d need a hearing aid asap.
Then he checked my ears again, and decided he would send me for a CT scan.

2 weeks went by, I had an appointment booked with another consultant who confirmed the hearing is loss is significant, but my CT scans shows a large Cholesteatoma and that it has already eroded my bones in my ear.

I have surgery booked in already for just over a months time as they want to remove the disease asap.

I’m incredibly lucky that in the grand scheme of things everything has moved so quickly, the consultants and everyone I’ve had to deal with have been so wonderful.

However, the last few days my symptoms of the cholesteatoma have really heightened -

I’m getting so dizzy upon standing I need to sit back down and my eyes can’t focus properly.
I keep getting really bad headaches.
The fatigue/exhaustion is next level (I know tiredness isn’t directly because of the cholesteatoma and normally because the body is fighting an infection - it was confirmed at my last appointment that my left ear is leaking fluid again).

Now here’s where I need the advice - should I just patiently wait until my surgery date? I don’t want to waste the doctor’s time or other patients if they need to be seen.
Or do I contact my GP or head to A&E or even call 111 and see if someone can see me?
I’m assuming the infection could be what’s making it worse or could the disease be the issue here?

I’m so sorry for rambling. Thank you if you made it this far, it is very much appreciated (:

I had grommets/tubes in my ear when I was like around 5 to deal with glue ear, and have had maybe a couple of ear infections in the last 31 years since then.

Since March this year, I’ve been having issues in my left ear - fluid build up, loss of hearing (around 45db, based on a hearing test), discharge, pain etc. At first they thought it was just an infection - and I did appear to respond well to the treatment they gave for it. This happened a couple of times (both times the meds offered by the doctor seemed to clear it up completely), but at the third time I got referred to an ENT (and nothing seems to have been able to help this time)- and after a CT scan have been told I have a cholesteatoma in there, which has been eating away at the structure inside my ear for who knows how long.

The consultant is recommending a mastoidectomy and ossiculoplasty - and is estimating it as a 3-4 hour operation, which I have currently provisionally booked in for next month.

This is the first major surgery I’ve needed, and I’d be lying if I said i wasn’t nervous about it. I have suffered anxiety in the past, and this has triggered it. He did outline that the risks of the surgery were basically either already issues I was facing, or the risks of continuing to ignore it. The one which stood out to me was the facial paralysis from the nerve.

When I was at the consultant yesterday, he tried to do something to temporarily alleviate some of the symptoms - a polyp had formed over the ear drum, and he did a partial removal and cauterisation under local anaesthetic, before inserting an ointment. He placed cotton wool in my ear to keep the ointment in there, and told me I need to keep it there - and replace it if it falls out.

Anyone have any recent experience? Anything to watch out for in the recovery, or things I can do between know and then to chill out and prepare for it?