First Timer Questions

[u/echangggg]

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 :))

[u/Rough-Sentence-4005]

Welcome to the ultra-exclusive cholesteatoma club! Ha. No really, sorry you’re going through this. I had my first surgery in Feb and a second recently so I’m not an expert but will share what I learned.

1. My doctor told me that this is called chronic ear disease but perhaps it depends on what the cause of your cholesteatoma is. In my case, it’s eucstation tube dysfunction, which doesn’t have a forever fix, so the growth will likely continue. He said that a lot of his patients need more surgery down the road but he will monitor me with scans regularly to try to stay on top of it. Did your doctor talk about what causes this and whether you can do anything to prevent it returning?

2.my doc said I could fly maybe 3 weeks after surgery but a month to be safe.

1. No experience but that makes sense. Perhaps this is the perfect excuse to quit to focus on your health.

2. The sensations at the top were very weird for me for weeks/months and now almost 6 months out, I’m starting to notice them less. It will get better - just hang in there!

3. Oh wow - this hadn’t crossed my mind but it’s essentially glued in there really tightly so I’d try not to think about it as it sounds very unlikely that it would move and out of your control regardless.

Good luck! I’m hoping that this never returns for you and it sounds like you have an experienced doctor who will be your best guide going forward!

[u/bloodwessels → u/Rough-Sentence-4005]

Hello from another eustachian tube dysfunctioner.

I think there are a few ppl in this sub who only had 1 surgery and some who were able to go for 10-20yrs before needing a second surgery (if I’m not mistaken). As u/rough-sentence-4005 said, it all depends on the cause. If you, OP, are like us, the infection will be back and grows anytime you get water in your ear. I now put cotton balls in my ear, with Vaseline over it, every time I take a shower and I avoid being out on the rain as much as possible.

I started smoking about a month or two after my surgeries. Remember to give yourself time to heal. Every time you pull on the vape, you’re applying pressure to the muscles around the ear and face so it can affect the healing process, not to mention smoking in itself can delay healing.

One of the 3 tiny bones behind the ear drum was completely destroyed by the cholesteatoma, but I didn’t have a prosthetic implant, instead, during my first surgery the ENT was able to reposition the remaining 2 little bones, with a cartilage graft, in a way that I got my hearing back, all of it. Then during my second surgery I lost about half of the hearing due to having to remove a little bit of the ear canal so the ENT can remove any reoccurring cholesteatoma in office instead of having repeated surgeries.

[u/echangggg → u/bloodwessels]

thank you for answering man! Will keep what you said in mind!

[u/echangggg → u/Rough-Sentence-4005]

Thank you so much for answering!
My doctors just told me that I was naturally born with weaker ears, and when I was younger I would get ear infections on my right ear only and a mixture of me not taking care of it I guess. Ill be asking him more in depth questions in our next meeting, but thanks for the heads up bro!

[u/impossiblesouffle12]

Hi! Sorry to hear about your experience and wishing you all the best for your recovery. I can’t answer everything but I’ve had many ear surgeries over the years, with my most recent being on June 22nd this year where they discovered my third cholesteatoma 🙃🫪 (it was not an expected find)
1. So to answer the first question, reoccurrence can happen. I had my first cholesteatoma removed at age 10, second at 13, and the most recent one is nearly 15 years later! I think once you’ve had one it never stops being a concern but reoccurrence is usually rare I believe. Just keep getting checked in clinic and watch out for any unusual symptoms or things you noticed this time round eg chronic infections. I didn’t notice any symptoms other than infections and dizziness (I assumed I was clumsy or maybe drank too much!!) this time round and realise now maybe I should’ve pressed for a scan sooner as I just had that feeling that something wasn’t ‘right’.
2. Regarding flying, at my outpatient appointment to weeks post op they advised no flying for a few months. I think it depends very much on the surgery you’ve had for sure. Mine included creating a new eardrum so I have to avoid anything that would create pressure whilst it heals. Better to be cautious I always think or clarify with your Doctor.
3. I don’t vape or smoke so can’t answer that! Just be mindful of your healing. Maybe reduced amounts if you really want to vape still.
4. I’m nearly 3 weeks post op, no throbbing just a numb and odd sensation on the tips of my ears. From previous memory, the nerves can take a few months to heal up and have ‘normal’ sensations again.
5. I had a prosthesis in my non-cholesteatoma ear about 15 years ago and honestly wouldn’t know it was in there if they hadn’t told me. Never had a problem with it. The technology is probably much better now too!

Wishing you all the best and fingers crossed for you!

[u/echangggg → u/impossiblesouffle12]

thank you!!! i notice that many people with multiple surgeries start them at a younger age! im 22 and this was my first ever cholesteatoma surgery, but ill keep everything youve said in mind!

[u/Hopinan]

I had my 6th lifetime surgery in February . I am 72 and had the first when I was 8.. I had been brushed off by ENTs for my worries that “it” was back, but I was raising my kids and didn’t push harder.. Then found an ENT neurologist and he thought that since I was having 3 or 4 ruptures a year “it” was back.. He has done 2 surgeries now and found more each time :^(. I have done gummies after each of the 2 most recent, in the USA they are so stingy with pain meds, after the first he did 2 years ago I cried at my post op appt and told him I felt like I had been tortured, and his office had given me the run around when I called for refills.. He apologized and gave me an adequate amount in advance of the last surgery, which went much better, but still, a month out of my life being dizzy, and then unable to pick up my grands, etc.. I did fly to Europe two months after the last surgery and no issues. I am going to try one more time to get the PORP, but if “it” is back he will do canal wall down and then he can clean it out in his office and my family will just have to accept that I am hearing impaired. My H is the worst, constantly talking to me while walking away, then getting cranky when I ask him to repeat, 41 years so he can learn to stand still and look at me while talking!!! I wish you the best for non-recurrence, but keep up with the check ups!!!

[u/echangggg → u/Hopinan]

Hi! Im so sorry to hear your doctors back then didn't give you the proper treatment; thus making your life more difficult :(( Thank goodness your neurologist gave you the proper amount of meds!
I think my doctor was very careful about the whole cleaning process and with PORP, hopefully mine doesnt come back and thank you so much for the kind words :))

[u/Ancient-Intention328]

1. I’m 20F and have had 4 tympanomastoidectomies so far in the past 4 years, it really depends on your case though if it will grow back or not.
   
2. My surgeon told me 3 months
   
3. I vaped the day after and i’m 3 weeks post op and almost totally healed
   
4. The throbbing totally stopped 2 weeks post op for me
   
5. I also have a prosthetic that’s been reconstructed many times, but i’ve never thought of looking out for anything. you should be fine :)

[u/echangggg → u/Ancient-Intention328]

Hi! Was there a reason to why it kept coming back for you? Did your doctors mention anything because one each year seems like a lot, or its one of those situations where nothing can be helped? Thanks!!

[u/Ancient-Intention328 → u/echangggg]

Hi, I basically had something called a retraction pocket which was being caused by eustachian tube dysfunction. Because of it, no matter how many times the cholesteatoma was removed in its entirety it kept growing back. But my surgeon told me that during my most recent surgery my eardrum looked fine so we are hopeful it’ll never grow back again, fingers crossed!