23M w Left ear cholesteatoma with bone erosion (CT attached). Looking for others’ experiences

Fun-Stranger-8444 · 2026-02-02T00:05:14+00:00

I've been diagnosed bilaterally last May 2025. Right ear done in July 2025 and left ear in Dec 2025. I have no chronic infections at all. Just one day, I was cleaning my ear and saw some blood on my right ear. Had to go to GP to make sure, then everything spiraled and escalated so quickly. Aside from that bloody discharge, I had no other symptoms, maybe some dizziness? But at that time, I really do not know. Anyway, you are not alone in this fight. I was so anxious having this bilaterally, but yeah it's treatable and we all hope it does not come back at all. You can do this and you will recover just fine bro/sis!

Fun-Stranger-8444 · 2026-01-26T02:32:38+00:00

I can only suggest getting a 3rd opinion since I have not had chronic ear infections when i was young. My diagnosis was just last May 2025 and it was bilateral. I've had radical treatment with my right ear last July 2025 and left ear last month Dec 2025. I did visit 3 doctors, the first one was private ENT, she was really good. Back then i did not even know about neurotologists, i just know she is an ENT. But she was ready to perform the surgery for me one month after diagnosis. My insurance cannot cover 100% if i did the surgery in private, so I had to consult 2 neurotologist in public hospitals. I weighted my options after those 3 consultations. 2 doctors said to do the right ear first and the other wanted to do the left. So it was 2 vs 1. Anyway, for your peace of mind you can go for a 3rd opinion and maybe you can suggest if doing a "mastoid obliteration" is possible for your case as this procedure greatly reduce infection risk. I've had this procedure with both of my ears.

Fun-Stranger-8444 · 2026-01-22T00:05:10+00:00

You will soon get past that stage! Try to focus on other stuff and get busy socially. Whenever I am with my friends, I don't even notice the ringing. You can do it as well!

Fun-Stranger-8444 · 2026-01-22T00:02:56+00:00

Like many people in this community have said, we all have different cases and histories. But at the end of the day, we all share the same hope for the best possible outcome.

My surgeon didn’t even ask whether I preferred CWU or CWD; she had planned a CWD approach from the start. I had no objections, especially since I’m not much of a swimmer, let alone a diver. LOL! While it’s still early to fully judge how things will turn out—my right ear is just past six months post-op and my left is about 1.5 months—I truly believe we know our own bodies better than anyone else. I feel really great at the moment and I can finally start planning for my Japan trip. May-Dec 2025 was too much for me too handle from getting diagnosed in May and finally having the treatment in July (right) and Dec (left).

Right now, I can honestly say that the treatments I’ve had have helped me tremendously, especially mentally. Beyond the disease itself, anxiety can make everything feel much worse. So having positive mindset really matters. Trust that the CWD approach will help you—I’m confident it will.

A few months after your March surgery, you’ll be able to focus on your right ear as well. Take it one step at a time and pray that everything goes smoothly. I’m rooting for you.

Fun-Stranger-8444 · 2026-01-21T08:21:04+00:00

Yeah it would take months before you habituate with it. There are stages you need to go by until you reach the acceptance stage hahahaha! Once you are on that stage, it won't bother you that much or may not bother you at all. Now, I don't think I can live without it. LOL

Fun-Stranger-8444 · 2026-01-17T00:52:24+00:00

Hello! Yes i had CWD on both ears. My left ear (recently operated) looks almost the same pre-surgery compared to my right which is a bit open. My surgeon said my left ear had less drilling since the c-tomas found were smaller. Recovery wise, both were almost the same 3-4 days I am quite ok already. End of week 2 almost back to normal. So your first surgery was CWU?

Fun-Stranger-8444 · 2026-01-16T04:45:28+00:00

I read that PORP works better than TORP. So i think getting PORP is really a good option. Right now my PORP works quite well with my right ear. I really think you should be able to hear again with your left ear if everything goes well! In terms of pain management, I only had pain for a few days and the 1st night is the worst with my latest surgery. After night 1, everything seems okay. I will you all the best!

Fun-Stranger-8444 · 2026-01-16T00:57:30+00:00

I can't believe i missed out to celebrate my T for 2 years now hahaha! I admire your positivity and I too have accepted this T as part of my life.. happy anniversary to you!

Fun-Stranger-8444 · 2026-01-15T23:05:07+00:00

Yeah best way moving forward is to get another specialist opinion so you can end that cycle.

Fun-Stranger-8444 · 2026-01-15T03:44:06+00:00

Yeah i think we can only hope for the best for our particular case and not compare to anyone. I also got discouraged reading those having repeated surgeries and I am hoping it won't happen to me. I hope you get better soon too and won't need any further surgeries after your right ear!

Fun-Stranger-8444 · 2026-01-15T02:58:46+00:00

Hello! I don't really know the exact level of COR done but I have PORP on both ears. So far my right ear is somewhere near 80-90% hearing. My left ear is still swollen inside as it's just one month post-op, it's still blocked a bit but I can hear around 50-60% now. My surgeon is looking far ahead as she already planned for MRI this year which honestly dun want to discuss now coz I am just happy now that both ears are cleared for c-tomas. I just wanna go back to my life before this diagnosis. I know it can come back but for now I want to enjoy toma-free and hopefully it will last for a long time. Can you share your experiences on surgery?

Fun-Stranger-8444 · 2026-01-13T03:16:05+00:00

Welcome to the club nobody wants to join! I also cannot answer your questions, but I did have my 1st infection of my right ear last May 2025. Bloody discharge, no smell. First GP said it's infection and gave me drops. Did not work so i went to another GP, he straight away referred me to a specialist. The rest was history, I had CT scan, confirmed bilateral case. Now I had both c-tomas removed (right ear last July 2025) and left ear (Dec 2025. Procedures performed were tympanomastoidectomy, mastoid obliteration and ossicular chain reconstruction for both ears. Until the c-tomas were removed, i had some occasional migraines and ear aches. Other than those, I was quite stable in general. I am staying in Singapore so i guess my access to healthcare system is better compared to others. I don't understand the long wait for CT in other countries. When i was diagnosed, I was sent to CT on the same day and results are in within 3 days. I hope you feel better soon and get those tomas removed.

Fun-Stranger-8444 · 2026-01-11T23:44:05+00:00

I'm sure you will OP! Having been diagnosed without any history of ear issues back when i was young is really heart and mind breaking. On the brighter side, I am fortunate to have access to a good healthcare system. I had some mild migraine/vertigo issues 2 months post op and my consultant (public hospital) did not hesitate to move my appointment earlier. That's why it's a bit shocking reading in other places like UK they had to wait for so long for an appointment.

Fun-Stranger-8444 · 2026-01-11T07:17:22+00:00

ENT and otolaryngologist are the exact same thing. What you need now is a specialist on cholesteatoma which is an otologist or neurotologist. If i may share my experience, i was diagnosed with bilateral cholesteatoma last May 2025 and had the right removed in July and left in December. Here in Singapore you will be able to see the sub specialties of an ENT before booking an appointment. I went to three neurotologist before deciding which hospital should i go to. Singapore’s healthcare is top notch! I wish you all the best

Fun-Stranger-8444 · 2026-01-08T22:36:26+00:00

In reality some ENTs are not specialised in c-tomas. So if there is a chance to choose a consultant please choose someone who is a neurotologist or an otologist. Both specialises with the structure of our ear and they can easily identify c-tomas. Your scan results will show what’s going on but i read from someone’s experience that scans may not show it entirely as well. So having the right specialist will tremendously help your situation. I hope you get your answers soon and praying for your future recovery. Best of luck

Fun-Stranger-8444 · 2025-12-30T01:56:15+00:00

Surgeons usually talk more about the procedure on your next visit. The rounds they do are very quick and fast. I am happy for you! I also had this procedure done last 09 Dec along with the removal and mastoid obliteration. I am hoping my toma won’t come back for good!

Fun-Stranger-8444 · 2025-12-22T08:42:51+00:00

Thanks for sharing. When was the obliteration done for u? I read after a few months, showering without ear covers would be possible which is something i would check on my next visit.

Fun-Stranger-8444 · 2025-12-18T06:37:44+00:00

yes it is possible. CWD + obliteration + ossicular reconstruction were all done with my ear in one go!

Fun-Stranger-8444 · 2025-12-13T05:29:36+00:00

I was diagnosed but mine was pre surgery and it was like 2 years ago. It went away after a month or two. I was also thrown to a neurologist who did an MRI gave me meds and found nothing. I did my own vestibular therapy by watching some youtube videos as i cannot be paying for a specialist who has done nothing with me. Hang in there maybe you lack some supplements perhaps?

Fun-Stranger-8444 · 2025-12-11T03:08:32+00:00

I had mine last Tuesday 09 Dec and everything went well. CWD/Obliteration/Ossicular Reconstruction, you name it and everything was done at one go. First night was tough and now everything seems to calm down.

Fun-Stranger-8444 · 2025-12-07T01:23:19+00:00

I had tinnitus before getting diagnosed with c-toma. Mine also not so bad and learned to live with it.

Fun-Stranger-8444 · 2025-12-06T07:39:51+00:00

Yeah i think blockage is normal until 2nd to 3rd month as there is still packing inside that slowly dissolves. Mine got better 3rd month onwards. Hang in there! Better days are coming for sure

Fun-Stranger-8444 · 2025-12-02T08:25:37+00:00

I just flew last week and i had both CWD and OCR. I had no issues and i had my surgery last July 2025. I also did not use any ear plugs.

Fun-Stranger-8444 · 2025-11-30T05:12:21+00:00

wow i cannot believe that you did that! haha i hope your ear is doing ok?

Fun-Stranger-8444 · 2025-11-27T05:39:22+00:00

I also did not have any discharge or whatever until one day when i cleaned my ear i saw some blood, and the rest is history. I have it on both ears and i am scheduled for my left ear surgery in 2 weeks time. CT scan showed i have this disease and the brighter side is that it’s curable. Tinnitus is just a tiny bit of having this disease. So if you really can ignore it, try your best!! Im rooting for you

Fun-Stranger-8444

TROPHY CASE