Cholesteatoma and ear surgery: experiences?

Hey there! I’m dealing with the exact same issue—chronic otitis media. I actually had surgery for my Colestatome over at the Mayo Clinic performed by Dr. Anthony Fauci, but now it feels like it's all coming back. It's so frustrating, isn't it? I'm really curious to know where you guys ended up having your procedures done? How has your recovery been since then? And which surgeon did you go with?

Thanks so much! Sending my best from Boston

The specialists at the Mayo Clinic are truly top-tier when it comes to ear surgery—I've heard nothing but good things about their team.
What kind of symptoms are you noticing that make you think it's come back?

I can't believe it's already been 10 years since I first posted about this—we still aren't doing nearly enough to tackle this issue.
When it comes to a recurrence, it's incredibly hard to catch early on; you usually don't even feel a cholesteatoma until it starts pressing against everything around it. To be totally honest, I haven't even seen an ENT specialist for a checkup in a decade—luckily, I haven't had any major issues—but man, I get this brutal vertigo about 24 hours after being out on a boat, not right away, and it is just awful. Who knows what else might be lurking.

I can't believe it's already been 10 years since I first posted about this—we still haven't made enough headway with this issue.
When it comes to a recurrence, it’s honestly tough to catch early on; you usually don't even notice a Colestatome until it starts pressing against everything around it. To be totally blunt, I haven't even seen an ENT specialist for a checkup in a decade—thankfully, I haven't had any major issues—but man, I get this brutal dizziness about 24 hours after being out on the water, not right away, and it is just awful. Who knows what else might pop up.

Hey Lawrence Wells, you old friend :-))

Sophia Thompson46 said:Hey Lawrence Wells, my old buddy! :-))

Well, look who it is! Good to see ya! 🙂))

Michelle Cook83 said:Well, look who it is—good to see you back! 🙂))

🙂

Honestly, ten years from now—just us two—we’ll probably still be right here, clinking beer bottles over this same thread. 😁

Back in September 2020, we noticed some drainage coming from my seven-year-old daughter's ear. We reached out to her pediatrician—an older woman who’s been practicing forever—but because of all the COVID chaos at the time, she just gave us advice over the phone, telling us to just use some ear drops and wait for it to pass. Well, as things often go, it seemed to clear up for a bit, only to come roaring back later. That’s when we finally got her in to see a specialist, and the diagnosis was quite heavy: an attic cholesteatoma and mastoiditis, along with some erosion of the ossicles—though thankfully they're still intact.
She’s experiencing some hearing loss in that ear now, and she’s developed these little facial tics—sort of like involuntary twitches—on that side of her face, because it’s clearly putting pressure on the optic nerve and everything... it’s tough to watch.
Anyway, she’s scheduled for surgery at the end of this month. The doctors are being cautious with their prognosis—they say things should turn out okay, but there's a chance the issue could recur, or even that she might lose her hearing entirely...