Cholesteatoma and ear surgery: experiences?

I’m starting this thread for anyone who has dealt with—or is currently dealing with—cholesteatoma. From my own experience, there seems to be such a massive lack of awareness surrounding this condition. You’ll find it missing from most health websites, doctors often look visibly unsettled when you bring it up, and honestly, just finding solid information or advice regarding surgery is an uphill battle. If you’ve been through this, you know exactly how overwhelming it feels. I’d love for us to share our stories, tips, and any guidance we can offer.
Growing up, I suffered from constant, severe ear infections that eventually led to the development of cholesteatomas. When my doctors first dropped the diagnosis and told me I’d need surgery, I was completely blindsided—I didn't even know what the term meant. I ended up spiraling down a Google rabbit hole, which only made things worse because I finally realized just how serious the situation and the surgical risks actually were. I’ve had the surgery behind me now, but since there’s always that lingering possibility of it coming back, I’m reaching out to those who have faced this mess before. Could you tell me what symptoms of a recurrence to look for, where you had your procedure, and how you ultimately managed everything?

So, when's your surgery scheduled? Honestly, I could send over some links if you want to do a little digging beforehand. I actually went through something pretty similar myself—after ten years of dealing with treatment, things flared up and I ended up needing surgery. Now, my doctors think I might have a tiny cholesteatoma in the attic of my middle ear.

Here are those links I mentioned...
http://www.earsurgery.org/site/pages/site-map.php
http://www.entusa.com/ear_tubes.htm
http://www.health.gov.au/internet/main/publishing.nsf/Content/B8016E8B0E94B870CA25743C00081FC8/$File/odiag.pdf
http://emedicine.medscape.com/article/858990-overview

Thanks for those links—I’ve come across a few of them already, but these are actually quite helpful.
I've already had my surgery. Even though the recurrence rate is lower for my specific type, I still find myself feeling a bit anxious😲. No symptoms at the moment, though....
I dealt with frequent ear infections as a kid too, and from what I've gathered, most people dealing with cholesteatoma have struggled with chronic ear issues either then or even now.
How did you end up getting diagnosed? Did you experience any symptoms, and did you go through with a CT or an MRI to confirm things? In my experience, this isn't really something you can just let sit in your ear😠.

I have a question for all the ENT specialists out there—and honestly, anyone who isn't a pro but might know more from sheer lived experience. I need to know: if a cholesteatoma isn't showing any classic red flags (like ear drainage or anything obvious) and it’s relatively small, can its mere presence still cause damage to the surrounding bone and structures? Or is it the case that a cholesteatoma only starts doing real damage once it grows large enough to cause discharge? Because, look, I’ve been reading up on this, and apparently, a cholesteatoma destroys surrounding tissue through enzymatic processes. So, logically, it feels like even when it's tiny—even if it’s basically invisible to doctors through an otoscope because of a perforated eardrum—it could still be causing damage and potentially leading to complications like headaches, abscesses, or even death... even at a small size. Or am I totally off base here??? Please, I really need someone to explain this to me; I’ve been spiraling trying to make sense of it, and it’s weighing heavily on me. Lately, I’ve been getting these headaches right above my operated ear, and I just *feel* like something is wrong in there. My hearing has also dropped, yet my doctor looks at me through the otoscope every two months during follow-ups and insists everything is perfectly fine. But I just don't buy it...

Seriously, just when I think I’m the only idiot in the world with this kind of rotten luck... I honestly feel for anyone dealing with this garbage. I had surgery for it about a year and a half ago, and now my ear is leaking again in PMMMMMMMMMMMMMMMMMMMMMMMMMMMMMMM, ugh.. I'm heading in for a checkup to see if it's back, if I need another surgery, or if I should just shoot myself in the head...

Even if I was born with this thing (supposedly), I’ve been dealing with it for as long as I can remember. I finally went under the knife after 21 years, so yeah, it spread quite a bit and ate up several inches of bone—which honestly doesn't seem like much for over two decades, but whatever. Everyone kept telling me it was dangerous, but I just kept ignoring them because the doctors are absolute MORONS—if I don't get banned for saying that, fine—they couldn't give me a straight diagnosis to save their lives; they just kept prescribing endless little pills. FUCKING DOCTORS. It wasn't until I dropped $83 on a private consultation once I finished high school and actually had some free time that we saw what was really going on... This guy tells me I have a tumor and need surgery immediately before it wrecks half my skull. Holy shit. I almost burst into tears right then and there. Like, seriously? And in the end, I'm stuck with an illness that has two obvious symptoms—constant yellowish, stinky discharge and sudden hearing loss—and the idiots at the American healthcare system couldn't figure it out, despite all those expensive degrees they love to brag about. Ugh, it's too late now and I'm just pissed off. I'm going to bed and heading back for more tests tomorrow. Good luck everyone, peace

wanderingrider3 said:It’s moments like this where I start feeling like I might be the only idiot out there with this much bad luck... I truly feel for anyone dealing with this mess. I had surgery for it about a year and a half ago, and now my ear is leaking again, and let me tell you, it is just UGHHHHHHHHHHHHHHHHHHHHHHHHHHHH, gross. I’m heading in for an exam soon to see if things have actually regressed, if I need to go under the knife again, or if I should just shoot myself in the head instead...

Hey there—I dealt with the exact same thing when I was younger. You’re describing a situation that was practically a mirror image of my own experience. It was constant dripping, rounds of antibiotics, until I eventually ended up at the Mayo Clinic where they finally gave me a proper diagnosis. That was roughly 13 or 14 years ago; I’m 24 now and everything is fine. I haven't had a full recurrence, though I did suffer from an ear infection—specifically that nasty purulent discharge—at least once a year. Don't let the anxiety get to you, because honestly, it doesn't necessarily have to be a sign of a relapse. In fact, for the last two years, I’ve been clear, mostly because I’ve become quite meticulous about it (keeping water out of the ear canal, wearing a hat in the winter, and so on). One of the top specialists in the field actually told me that a true recurrence most commonly manifests within a one or two-year window. Anyway, good luck with the appointment, and try not to stress too much; it really might not mean the illness has returned...

Wow, so you're saying it might not be a sign? Alright, fine, but I still feel weird about it. I've got my checkup coming up in two weeks, so I'll find out what's actually going on then. Honestly, you’ve calmed me down a bit, which helps because the last thing I want is to go under the knife again—that whole experience is still way too fresh in my mind. -.- And sorry to the admin for the outburst earlier, =S

Exactly—it doesn’t have to be. It's an option, sure, but it's certainly not the end of the world.
While a cholesteatoma is technically classified as a tumor, it's "benign" in the sense that it isn't cancerous. However, the danger lies in its ability to erode the ossicles (those tiny hearing bones), potentially damaging the facial nerve or even encroaching on the semicircular canals. But again, that usually only happens during a very prolonged course of the disease.

Another thing to consider: a chronically inflamed ear might leak due to a flare-up without it being a full relapse, though it still needs medical attention. That said, you don't necessarily need a surgeon for that; a standard ENT clinic can handle it. Once an ear has been operated on, you have to be extremely careful not to get water in it or try to rinse it out. Any drainage should just be gently suctioned using a "dry toilet" method. After that, a doctor would typically prescribe some antibiotic drops.
If you happen to be in New York City, I'd suggest heading over to the Vineyard hospital right away. They can quickly determine if what you're dealing with is just an acute flare-up of chronic inflammation or if it actually is a recurrence of the primary condition.

There's no need to take such radical measures as you did. The biggest issue with a cholesteatoma regarding ear function is that when it "eats" through those bone structures via enzymatic degradation, it breaks the connection. This causes conductive hearing loss because the sound impulse has no way to reach the inner ear and the hair cells, even if those cells themselves are perfectly healthy.
The good news is that we now have middle ear implants designed specifically to bridge that gap and fix this type of hearing loss.

Wow, you must’ve graduated from some top-tier med school to sound that much like an expert =) thanks for the heads-up though, really hoping this isn't just a relapse 🙂

Hey everyone... so, I was wondering if anyone here has gone through cholesteatoma ear surgery recently? If you have, could you please share some details? I'm trying to figure out how long the hospital stay usually is, if it's considered a routine procedure, and what actually happens during the surgery itself. I haven't been able to find much helpful info online, and my English isn't exactly great for searching through all the medical jargon 😢 I actually just had surgery for a deviated septum over at the Mayo Clinic, and during my follow-up appointment, they checked my ears and found the cholesteatoma. It's kind of weird because I haven't really dealt with many ear infections, though I did have one pretty bad one about two months ago... I'm honestly confused why they didn't catch this before the nose surgery, maybe I could have just gotten both done at once? :/ Anyway, if anyone knows anything about the surgery, the recovery process, etc., I'd really appreciate the help... thanks 🙂

Cholesteatomas aren't easy to spot—so many people have gone through the exact same uncertainty as wanderingrider3 and slyfalcon20 before finally getting a clear diagnosis. Slyfalcon20, I actually think I know which surgeon handled your case...
Charles Cox4, I’m fairly certain no one would attempt both of those surgeries at once. Given what's going on with your ear, dealing with a cholesteatoma can turn into quite an extensive procedure—though, honestly, you usually don't know the full extent until they actually open things up.

Hey everyone, so here I am after my third surgery... turns out it was a recurrence after all, and honestly, I’m telling you, the idiot doctor completely missed it... I can post the lab results if you want, where it says everything is fine and I just need to go back for a checkup in six months. Basically, the cholesteatoma was massive and spreading like crazy. I ended up heading over to the Vineyard hospital to see Dr. Reese (who is hands down the best doctor/human being/comedian in the entire medical field, by the way) and I had the procedure done two weeks ago. I’m really hoping this is the last time, just like I hope I never have to set foot in the San Francisco Mayo Clinic again—those people are absolute morons. Catch ya later

Hey there...
Does hearing actually return to normal after the surgery is over?

My hearing bounced back from 60% to 85%, which was a massive win, but then I went and had another perforation, so my hearing took a major hit again... on the bright side, the cholesteatoma and infections are gone; I’ve only dealt with one minor infection in the last two years, thank God.👍

Diana, would you mind sharing how the doctors confirmed the recurrence last time—did they go with a CT scan or an MRI?
Also, I was wondering about your procedure—was it done through the oral route, or did they make an incision behind the ear?
And how long were you stuck in the hospital?

Hey everyone, I’ve been dealing with ear infections since elementary school. Now things have spiraled into a chronic mess and I’ve got surgery scheduled for next month. It’s my middle ear. They didn't mention anything about tumors or anything scary like that, but still. I haven't really been worried about the procedure until now, but as the date gets closer, the anxiety is just hitting me harder. Last night, it totally got to me... is it actually possible to not make it through a surgery like this??
And of course, just last night, after only three weeks of peace, the other ear started leaking again. A few days ago it was the right one, then it settled down, and then suddenly last night it was the left. So yeah, another sleepless night for me... This is seriously driving me insane... 🤦

Hey there! I’m actually dealing with the exact same issue regarding my Otitits Media Cron. I had surgery for Colestatome back in Boston performed by dr. Adnan Kapidžić, but now it feels like it's all coming back. It makes you wonder, doesn't it? I'm really curious to know where you guys went in for your procedures, how the recovery turned out, and which doctor handled everything for you.

Thanks so much! Sending my best from Boston!