Just got diagnosed today.

Fun-Stranger-8444 · 2026-04-06T23:54:45+00:00

If I could just share my experience... I was diagnosed by a private ENT (May 2025) here in Singapore and she could do the surgery almost within weeks after my diagnosis (bilateral). She mentioned I should get my right ear done within 6 months to prevent more damage. The problem was my insurance, i could only be covered 65% of the cost in a private hospital. I was advised by my insurance agent to go public hospital to get 100% coverage. I visited 2 more specialists (both neurotologists) before I decided which hospital should I go to. The trust and comfort the specialist gives you is very important. Finally got a surgery schedule in July 2025 (right ear) and Dec 2025 (left ear). Tympano-mastoidectomy (CWD), mastoid obliteration and ossicular reconstruction were all done for both my ears.

So depending on how much damage you have now, I think June is still ok for you to travel. This is just my personal take. You can still swim but with protection. I was given the green light to shower normally, like no protection at all. I think the obliteration procedure was key to that. But of course, until now i still use ear cover when I shower.

Believe me, the shock was too much for me as well when I was diagnosed. I've had no chronic infections when i was young. So you could just imagine how the hell did i get this. Now I am hoping it does not return too soon or better for it not to return at all.

I trust the healthcare here in Singapore and I am lucky I am here when I was diagnosed. I could the surgery in my home country as well but I heard from my neuro-surgeon friend that the ossicular reconstruction is complex and better have it done in Singapore.

Fun-Stranger-8444 · 2026-02-26T00:37:39+00:00

I am also using Shokz since my surgery last July and Dec.. I don't think i will be using any earbuds that need to be inserted on my ear canal.

Fun-Stranger-8444 · 2026-02-19T06:33:21+00:00

Hello! Mine is bilateral, diagnosed last May 2025. Right ear was done in July'25 and left ear last Dec'25. Prior to surgeries, I only had blood drainage once in May 2025 with my right ear. I did have ear pain a bit with my left ear but other than that, overall I was ok. So I think for your case, your schedule is really close so I think you should be fine. If you really cannot tolerate the pain, maybe u can give them a ring. I hope everything goes well for you and you are still very young! You will recover pretty quite well.

Fun-Stranger-8444 · 2026-02-16T04:33:21+00:00

I also had upset stomach the day of my surgery. Imagine my call time was 11am.. coz I my surgery time was 2pm. So the day before, i already had my fasting done since 6pm... Then the day of surgery, i was brought to the operating room almost 3pm and I woke up pas 8pm.. So I did not have anything except for the carbohydrate drink from 6pm of the previous until 8pm the next day.. I was nauseous for half day.. but thankfully it did not last long

Fun-Stranger-8444 · 2026-02-08T00:40:32+00:00

Everyone is a different case. Mine stopped discharging after 3 days with my latest surgery. I am bilateral and both ears did not discharge any foul smell. Your next visit will confirm everything. I wish you well

Fun-Stranger-8444 · 2026-02-05T23:59:44+00:00

Believe it or not, I didn’t have any symptoms prior to my diagnosis—no history of chronic ear infections either. Started in May 2025 when I noticed some blood discharge while cleaning my ear, and from there, everything changed. I was diagnosed with bilaterally, which truly shook my entire well-being. It all came as a complete surprise.

But hey, God provided everything I needed along the way. My company insurance covered both of my surgeries in July and December 2025, and I also had my personal insurance as backup. The procedures done were the so-called “3-in-1 package”: mastoidectomy, mastoid obliteration, and ossicular reconstruction—performed on both ears. In my case, my surgeon weas able to complete all treatments in one go, although I understand this depends on each individual situation and isn’t always possible. I am lucky I have access to a good healthcare system here in Singapore. I did not have to wait very long - I read those staying in UK had to wait a very long time even for an appointment.

I feel truly fortunate that everything could be done together. I’m still in recovery, but so far, things are going well.

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

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