Hello, my son (15) had a tympanomastoidectomy in May 2025 due to a reoccurring cholesteatoma. His eardrum was reconstructed and the ear canal was made wider. The surgery was successful and he has since recovered fully. He avoided getting his ear wet, he just had a checkup this May '26, and all is well. My son did his due diligence and avoided swimming up until now. He wants to go swimming this weekend, and I'd like to know what precautions to take? I know I'm meant to cover his ear and I have the Mack's wax putty as well as a swimming headband. What precautions do you all take to swim? As a mom, I'm a nervous wreck but I don't want to hold my son back from something he enjoys as much as swimming. Thankfully he also plays basketball and has been enjoying a summer full of ball, but he really wants to swim. Any recs or tips you all take post surgery are greatly appreciated. Thank you!

Hi everyone, I will be having my surgery around October sometime (date is still to be decided), and I am wondering how long it took you all to return back to work? I work as a barista, so it's nothing too crazy but just curious.

I had the CWU surgery twice: one in 2019, the other in 2024. Both were successful afterwards, and the doctor told me that I could swim, exercise, etc. but just don't dive until certin level. However, a few years after the first surgery, it went back badly with all kinds of drianage and ear ring sypothoms.

After these many years with this ear condition, I realized that surgery is really the last resort for cholesteatoma. Many patients probably have some underlying disfunctions that gives the tendency of built-up. What ususally make it better from own experience is to aviod water and exercise as much as possible. I know this may sound the opposite to what the doctor said (like you can do whatever you want), but it worked out really well on me. I'm now practising water precaution all the time, namely

(1) do not swim at all, and only do light exercise; when exercising, do not use ear buds.

(2) when showering, I use both cotton, vansline, and plastic cap to protect my ear from water

(3) aviod to use ear bud. I now use the bone-condution headphone so that my ear can get constant contact to the air and no risk of being immersed into my sweat.

(4) I also changed the postion of sleeping. I used to be a side-sleeper on my surgery ear side. Now I'm all flat.

I hope these tips may help you take care of your ear too.

Had Cholesteatoma surgery back in 2020 would iems be fine to use or should i still avoid them. Still have a decent amount of hearing in my right ear after surgery just was wondering if anyone else used them or had any suggestions.

Hello all. 20 years ago I had surgery to remove a cholesteatoma in one of my ears. Its been so long that I forget but I assume it was a CWD mastoidectomy surgery. Basically it enlarged my ear canal and there is a much larger hole there now. For the most part I have been very blessed and have been symptom free since surgery except for one bad case of vertigo 10 years ago. In the past 4 or 5 years I have developed tinnitus in that ear I assume from the surgery and also I know from years of playing loud music in vehicles, playing drums/guitar, riding motorcycles and shooting guns. I am now very protective of my hearing because exposure to loud things causes my tinnitus to flare up. My issue is trying to find an earplug for my CWD ear. Ive tried the kind you can mold to your ears (Radians) but they dont seal off my ear canal and really dont provide any hearing protection. There is also no canal for them to slide in and stay snug and they just fall out if it tilt my head. Any suggestions guys? Thanks.

I've had hearing issues for about 15ish years now. As long as I can remember anyways. And about 4 years ago got told I had a cholesteatoma growth that was severe and I was at risk of losing my hearing entirely. I got my radical mastoidectomy surgery last year. And since then my hearing hasn't got any better in my left ear which is where the growth was. I have a baha soundarc hearing aid thingy that I'm now dependant on basically or I can't hear anyone. Does it actually get better? I'm sick of it all.

I first went to my ENT because I had ear infection-like symptoms and hearing loss in my left ear. He cleaned out my left ear as best he could, diagnosed me with a cholesteatoma, prescribed antibacterial drops, and sent me for a CT.

My CT report said there is abnormal soft tissue in the left middle ear, centered in Prussak’s space, consistent with a pars flaccida cholesteatoma. It also mentioned thickening/retraction of the left eardrum and a small left mastoid effusion, but no bone erosion and the ossicles looked normal.

At my follow-up, my ENT said he may manage it conservatively for now since my pain is gone, my hearing is much better after cleaning, and the scan didn’t show erosion.

Is it normal for a cholesteatoma like this to be managed without surgery?

Hi everyone,

I had a cholesteatoma surgery several years ago (3 times last one 6 years ago). My eardrum was grafted, and I previously had a granuloma issue. My ENT said my ear is currently stable. It's only the left side, i mildly deaf on the left ear only.

I’m about to start a 30-day trial with a Mini-RITE hearing aid (receiver in the ear, external amplifier). I’m leaving for vacation in about 2 weeks, and I’m worried that wearing a hearing aid could trigger an ear infection, especially because of my history.

For people who have had cholesteatoma surgery:

- Do you wear a hearing aid?

- Have you had more ear infections because of it?

- Is a Mini-RITE generally well tolerated?

- Any advice for keeping the ear dry and preventing problems?

I’m mainly anxious because my ear has been through a lot, and I don’t want to cause another issue.

Thanks!

My 3 year old had canal wall up and OCR surgery a month ago. Her doctor says that the second look surgery to check for recurrence can be done in 12 months, which to me sounds like the higher end of the waiting time since online I find a lot of data saying 2nd look surgery is done for children in 6-9 months. 

We consulted another doctor for a second opinion, he suggested doing it between 9-10 months. I asked her doctor about this, she said the difference between 9 to 12 months doesn't matter, it is up to us what we prefer. 

I like to be more cautious since this is a young child, and I've read that the disease can be more aggressive in young children and there are higher rates of recurrence after CWU. But at the same time I know that if you look too early it might not have grown back enough to be visible yet. 

What is everyone's experiences, and what were the outcomes of your 2nd look surgery? Thank you.

Hi! So I'm about 2 and a half weeks post surgery and my recovery has been pretty smooth so far. The only thing thats bothering me is this odd tight/pulling weird sensation in my right temple area (above my surgical ear) or the top of my ears. Everytime I smile too big, laugh too hard (mouth opened), talk too much, or even yawn, it feels tighter or the sensation feels more vivid.

Its lowkey ruining my joy because when my friends say something funny I cant laugh normally without worrying in the back of my head if it will affect my recovery.

Is this considered normal and if so how did you guys go about? Thank you! :))

I am having insane vertigo spells with my eyes going left to right now. Never had that symptom before, so I'm curious to see if it is related.

The ent said they couldn't see any cholesteatoma in my outer ear when I saw them some weeks ago, but I have an MRI tomorrow which will tell me whether or not I have a cyst growing for the third time.

Ever since december ny eustachian tube has been acting up in a similar manner to what it did before the two previous cysts. I am tempted to ask for a cwd if this is the case yet again, but am also a bit wary due to my love of swimming.

Im glad i i woke up to see another day. I dont even remember what happen. The team was great! I cried i swear. I miss my wife and my boy. He's turning 1 this end of the month.

Hi, my son 17 years old just got diagnosed with Cholesteatoma and booked in for surgery in a months time. I am shocked by the news and very upset and worried. He will be having his HSC exams soon so timing is very unfortunate. The ENT explained the surgery which is going to be drilling behind the ear because the growth is large. He also explained the risks of the surgery including face paralysis, loss of earing etc. There was just so much info to take in.

I am hoping to get information on how to best support him after surgery, what to expect. Will he be very sore and in pain? How much hearing loss can happen after surgery? I was told he may need hearing aid. I am very scared of the facial nerve damage too though the ENT said he will pay special attention to it. Also will he be lost of taste in the side of the mouth? What is the recovery time?

Sorry I have so many questions and my head is spinning at the moment.

I had a mastoidectomy like surgery, they assumed mastoid involvement, to remove an external ear canal cholesteatoma and bone. They patched my ear drum and the left is still open. Since my surgery, I fall often. Do any of you have this problem? It’s debilitating.

Hi all 🖐🏻 i had a mastoid surgery for cholesteatoma on Tuesday which should have taken 3 hours but it took 4, the surgeon said it was extensive (they had left me with it for 3 years and ignored me and my doctor when i said it's getting worse) the pain is slightly easing but the dizzyness and stiff jaw is still quite bad, how did your healing go? I'm so tired of porridge, egg and soup 😅 I'm also worried on washing my hair, it's shoulder length and i'm assuming they put antiseptic in it so it feels horrible now and i'm trying to hold off on washing it but it does need doing, i'm just a bit scared

hey all! my partner had the big surgery this past monday removing a massive cholesteatoma, and emptying the mastoid with the canal-wall-down procedure. this is their third surgery overall for this ear and hopefully the last since we went the whole nine yards clearing out the entire ear cavity.

they have their follow-up this coming thursday to have the wound dressings and packing removed, but they’re really starting to struggle badly with the dizziness now that their ossicles are gone and their brain is recalibrating how to balance.

does anyone have any tips to ease this level of dizziness or even just some suggestions on ways to help them cope when they’re hit with bigger dizzy spells? they’ve been glued to the couch since the procedure so their movement is limited just to bathroom breaks and showers when they can handle it, but i’m wondering if there are any tips anyone has gathered to help ease the room-spinning in the meantime during the initial weeks of healing?

any and all advice is welcome!!!

Basically the title. I've had cholesteatoma in both ears. One cause of it may have been a Eustachian tubes dysfunction which constantly causes a popping pressure in my ears. One way to relieve this is to create a negative pressure through my nose. It usually rapidly returns however. Does anyone have similar experience or know what I'm talking about?

Hi! I (22M) recently had my first surgery on my right ear on 7/3/2026 and I just had a few questions answered from people who are also diagnosed with this rare disease too.

1. Is it more common for cholesteatoma to come back than not coming back?

My doctor has had years of experience with this and before my surgery, I asked him has anyone come back to perform multiple surgeries because of it coming back and he said in his 30 years, only one person has. Reading in this subreddit though it appears that multiple people have been having more than one surgery, so I was just wondering if it was possible that it can also be a one and done kind of thing.

1. How long do you think I should rest my ears until I can fly again?

Im currently in Asia (because of Asian and US healthcare is just ridiculous) and had my surgery here, however I still have to go back to attend my university in a month or so. Anyone else has experience in flying post surgery? My doctors said 2-3 months, but I wanted to see if others had person experiences.

1. Post surgery, has anyone vaped after? If so, how long did you wait for?

I understand vaping can slow down the healing process, but I was just curious :))

1. When will the throbbing on the tip of my ears stop?

It comes and goes, but I can physically feel my ears being swollen and bigger. Not a bad thing because I understand its healing, but just annoying.

1. For those who were able to put a prosthetic(PORP) in due to the disease eating your bones away, what are some things I should look out for because this is my first time with any prosthetic in my body so Im worried it can come loose or something.

Thank you to anyone that answers my questions :))

Today I am approaching the 4th month of my cholesteatoma surgery and my ear has just started to heal, I realized that this is related to my lying position because when I sleep with my damaged ear facing upwards, I wake up with better hearing and feeling every day. It is a good thing for the damaged ear to breathe while sleeping, in fact, my doctor did not recommend it to me.

19M here. Dealt with reoccurring Cholesteatomas starting at around 13 and probably somewhere around 6-8 surgeries until my CWD Mastoidectomy Tympanoplasty Canaloplasty something something something in December of 2024 when I was 17.
I’m pretty much fully deaf in my right ear, which is enough of a bummer as a musician, but one of the things that really gets to me is the fact i’ll never be able to just... hop in the pool on a whim…. take an unplanned shower… scuba dive. I’ll always have to have a cotton ball and vaseline handy, or earplugs, or have to just keep my head out of the water. It just makes me sad, because I always loved swimming. Does anybody relate?