r/cholesteatoma

I thought that cholesteatomas were behind me, i had surgery, tympanoplasty, prosthetic hearing bones and all that fun done on my left ear in 2020 (bad year to be accessing health services...)

My left ear is "perfect" now, although I still have some hearing loss and tinnitus on that side that I've learned to live with.

But my ENT spotted early signs of a cholesteatoma in my right ear :( and given my history, wants to act asap before it progresses. It makes sense to me and I'm on board with the plan but I'm feeling really low at the idea of going through it all again.

I currently don't actually have any hearing loss in my right ear, so I'm scared about losing my "good" ear, and especially scared of getting tinnitus on that side too. I know this has to be done, and best to deal with it before it destroys my hearing.

I already had tinnitus and hearing loss on my left before i had surgery. Can I expect to lose hearing and get tinnitus on my right if it hasn't destroyed my hearing bones yet? And anyone else who has had it bilaterally have any words of comfort or advice? Thanks you!

Hi everyone,

I’m 24 years old and feeling very anxious about my current situation. I’ve had chronic ear disease for many years and have already undergone two radical mastoidectomy surgeries one at age 17 and another at age 22.

During my second surgery, I experienced facial nerve paralysis for a few minutes during the operation, but fortunately it recovered on its own before the surgery was completed. Because of that experience, I’m especially scared about having another operation.

Unfortunately, the infection has come back, and doctors are now recommending a third surgery. I’ve consulted two ENT specialists, but they have suggested different surgical approaches:

• One recommends a Modified Radical Mastoidectomy (MRM)

• The other recommends Tympanoplasty with Mastoidectomy

I understand that every case is different and no one can give medical advice over the internet, but I would really appreciate hearing from anyone who has been through revision mastoid surgery. As I have no idea what's best for me with low risk.

History - I used to get ear infections and strep throat every 28 days like clockwork as a kid.

Had tonsils removed as an adult, turns out one of them had gone rogue and decided to grow into my throat. Had to be cut away with a cautery tool.

January 3rd, woke up with a massive ear ache. When I feel the ear ache, it means I have had an infection for a while.

Doc sends me home with penicillin, 14 days.

18 days later, left ear still killing me and I can no longer hear in that ear.

Augmentin this time, 14 days.

18 days later, back at doc, still can't hear, eardrum is clouded.

Moxifloxacin this time, 7 days worth and it works. However, on day 7, I suffered one of the black box side effects and to this day, I still have sensory nerve damage in my left hand and arm.

Ear still feels blocked, there is still some swelling.

Doc throws me on some steroids and gets me an ENT and Audiology referral.

Steroids help, but I somehow lost most of my sense of taste.

Audiology confirms I am functionally deaf in my left ear.

CT scan shows probable Cholesteatoma, with near total erosion of middle ear bones and significant damage to chorda tympani which explains loss of taste.

Subsequent MRI shows a growth consistent with Cholesteatoma roughly 32mm in diameter, along with total opacification of the right maxillary sinus.

Basically a 2 for 1 in the ENT world.

Surgery is set for August.

What sort of fun do I have to look forward to? How is recovery? I fly for work nearly weekly. Does the tinnitus go away? Can you ever taste food again?

I had a canal wall down about 6 years ago and I’ve been seeing my surgeon yearly every since without issue. I recently moved and need to go for my annual cleaning, is this something any ENT can do? Or do I have to go find another specialist near me I can see?

My son just had surgery to remove his cholesteatoma; he is 10. It had destroyed or eroded the three middle ear bones. His ear kind of looks like Frankenstein in the back. Doctor said he ca n go back to school but I’m so nervous about any remarks he might get about what his ear looks like right now, or also about anyone potentially bumping into if. What did you all do post-surgery?

What are the odds that this is a new cholesteatoma brewing? I have an appointment with the ent at the hospital in a month's time. I've had a cyst removed from this ear twice already. The last time was only three years ago 😩

what types of headphones donyou use ? my daughter has had two surgeries . 17 yr old. heading to college . she has had hearing loss and may need another surgery. my question is do you prefer over the head headphones or do you still continue to use AirPods style . I worry about infections and such and taking care of her ears now.