Cholesteatoma: Anyone else want to talk?

Anyone dealing with cholesteatoma?

Hi @twgonzales, I moved your post about cholesteatoma to this existing discussion that @genuinekim started to help people connect:
- Cholesteatoma: Anyone else want to talk? https://connect.mayoclinic.org/discussion/cholesteatoma-1/

I did this so that you can connect with fellow members like @angiee @judysmayo @melrod1030 @lkaton9 @dserro @ranchomonk @joanne58 and others, who can share their experiences and thoughts.

@twgonzales, have you been diagnosed recently with cholesteatoma?

Thank you very much. I have a surgery scheduled for November 14. This will be helpful.

I guess it’s been about 8 months now since your surgery. I hope everything went well and you are doing well.

I just had my fourth surgery on my left ear two days ago. I had a tympanoplasty and mastoidectomy with ossicular chain reconstruction canal wall down. Every surgery seems to be a worse experience than the last. I took the cup off this morning, it was 48 hours, and the post op paperwork said there would be a cotton ball and to change it. So I grabbed ahold of what I thought was the cotton ball and gently pulled, it did not seem to want to come out so I gently twisted it as I gently pulled and I felt something move further back in my ear canal. I’m pretty sure it was the packing and not a cotton ball. I feel fine, nothing happened, I just left it alone. But now there is a bulge of something, packing, gauze, I’m not sure what it is hanging out of my ear. I’m not sure if I should be concerned about it or not. It’s a Saturday so I can’t get ahold of anyone at the office until Monday and I will be lucky if they call me back on Monday. Anybody else ever dislodged the packing and if so was it okay?

My son had that surgery years ago in Boston, and I don’t remember an issue like that. If I were you I would call the office as they must have an answering service. Someone should get back to you I would think. At least you will have piece of mind. I would think the packing should be removed by the doctor and not you. Their directions should be crystal clear with that kind of delicate surgery. Best of luck. ( irene5)

Thank you for the reply Irene. It is all still intact but still bulging out of my ear canal and that does concern me a little as far as infection. The instructions were very clear that there is dissolvable packing and it should not be removed but it also says there is a cotton ball and it should be changed. There was no cotton ball when I took the cup off 48 hours post op just this bulging piece of something. I start ear drops one week post op which I’m sure is to keep that packing moist as it continues to dissolve my post op appointment isn’t for six weeks. I don’t know how I’m even supposed to get ear drops in there with this big bulge outside the ear canal. I’m going to call the office in the morning and hopefully they will get back to me sooner rather than later. It’s got me so anxious. The last thing I want is any kind of infection.

Gee whiz I’m trying to figure out why you aren’t on an antibiotic post op. And shame on somebody for neglecting to put cotton wherever. Do you have someone who can do the drops for you? There is no way on God’s green earth our son could have done any of this himself- and he was a responsible teen. I am so sorry you are dealing with this. Maybe you should call the office tomorrow or go there and tactfully tell the nurse all this. ( Irene)

My son is 15, and has had 14 ear surgeries. Ear tubes and infections left him without an eardrum on the right side, and a hole in the left. His second tympanoplasty on the right (the first failed) resulted in cholesteatoma. It ate away two the the three middle ear bones, and they basically had to remove his ear to get it cleaned out. They just left the eardrum out since then. He's had six maintenance surgeries since, and it is still recurring. Now they're saying that he's developing one on his "good" side. Basically, his eustacian tubes don't work, and I'm losing hope that we'll ever stabilize this.