Hearing after cholesteatoma surgery

Hi had 3 surgeries 1998- 2001 my ent dr told me i would not lose maybe 5% of hearing well here 2014 still ear infections vertigo and deaf in that ear,,,

kk123 - I hope your surgery ended up going well.  I had a surgery to remove my cholesteatoma 20 years ago, when I was about 7.  The cholesteatoma had removed 2.5 of the 3 bones.  The surgery went fine, BUT the surgeon replaced the missing bones with plastic prosthetic bones...in order to complete the surgery they inserted a tube to help with draining.  To do all this they obviously have to cut a hole in the eardrum, the problem was that they replaced the skin from the ear drum hole with skin that came from behind my ear (near my scalp).  When the tube fell out (through the eardrum), the eardrum never healed itself properly.  To this day I still have a hole in my eardrum that continues to get bigger, the hole now covers about 80% of the eardrum and I have approximately that much hearing loss in that ear.  I have had surgeries to try and fix the eardrum, but it keeps opening back up.  I am familiar with not being able to hear in that ear and it isn't a major problem since I am so used to it now.  But I can also not get water in my ear, which is annoying showering etc.  

Has anyone else had a similar experience with cholesteatoma surgery leading to the loss of an ear drum and therefore loss of hearing?  I am wondering if it is possible to get a hearing aid that helps offset this loss?  (if such an aid exists that functions without an eardrum) as the surgeries to replace the ear drum have not worked.

I have just had a mastoid cavity obliteration operation. Whereby they filled the cavity left by the c'toma with muscle. They have created an eardrum using the cartledge from inside my ear. It is still early days to see whether I can hear again or not (not heard in that ear for 35years). I have looked into a BAHA hearing aid which is bone anchored but the doctor has told me to wait to see if this is a success. I will keep you posted 

My daughter was finally diagnosed at 16 with a C-Tomato.  As an infant/child she had ear infections, but not a whole lot. I brought her to an ENT specialist at around 9/10 years old and she was dismissed as having allergies.  It was finally at just before her 16 birthday when she started having blood draining from her ear that we realized that something was very wrong.  MRI revealed a golf ball sized C-Toma in her left ear...hearing tests showed about a 25% hearing loss.  ENT specialist believes based on size of C-Toma, that she was born with it.  Surgery was scheduled for 4 weeks later.  After 3 hour surgery, she had ear drum reconstructed using skin from under her arm and C-Toma removed.  She was lucky as it was growing downwards towards corrotted artery.  Ear bones were almost removed but determined to be okay.  A year later at 17, a second surgery to make sure there was no more C-Toma growing was performed.  Now at 18 she recently saw doctor and had hearing test...hearing is only a mild loss...about 10%.  We consider ourselves very lucky and are optimistic that it will not return.  Follow-up in a year.  Best of luck to all dealing with this. 

My heart goes out to any parent having their child go through this. I really could not imagine if it were mine. In fact I would prefer another 10 operations myself than that.

Hope it all goes well.

Hi sorry to hear of your diagnosis.  My son was diagnosed at 11 after old of infections.  He is now 15 and having further surgery at GOSH on Thursday.  He has had operations to reconstruct the ossicles but they haven't been successful.  He doesn't wear a hearing aid and cope fine.  Top set student so doesn't affect him massively.  We just find if eating out etc he's best positioned with best ear nearer us.  Hope all goes well, it was a massive shock to us too when he was diagnosed 😟 a big worry but all going well.

Hi there, my son was diagnosed with Cholestetatoma 3 years ago. Most of the bones had eroded and after a lengthy op they removed the griwth and replaced the bones with prosthetic ones. Hearing tests afterwards showed his hearing had improved but my son doesnt notice the difference. He manages and copes with his left ear but what is finding hard is that he is left spacially  deaf which he finds it hard to make out what someone is saying if there is too many people talking at the same time or there is background noise. He says what he hears is just a jumbled up noise. He can hear ok when he is talking one to one with someone. Is there anyone else effected this way and do the have any hearing devices that would help him hear clearer in class when everyone is talking

Hi

I have had both my ears done. My right ear was the worst and I lost approx. 30% of hearing. Before I had the left ear done I got a hearing aid and managed to cope until my left ear healed. Unfortunately I suffer constant problems with my left ear with infection but you do survive and there isn't much to be worried about.

I have been going through this for 6 years now and the specialist and I are buddies.

I was diagnosednosed with cholesteotoma when I was 5 in my left ear. I got a hearing aid when I was 9 because the cholesteotoma has eaten away at bones in my ear so I lost 60% of hearing in the left ear.

Hi there. .... would anyone know if flying affects cholestiatoma patients please. ....

I’ve had 3 operations for this disease. Mine was pretty bad as I was discharging black fluid and it STANK.. . All my bones were just eaten away . They decided to put in prosthetic hearing bones and drill away the whole canal wall. I have one ear hole bigger than the other from them shaving it away. First attempt failed because it dislodged to base of skull. Second operation was 5 years ago and haven’t had a problem since..... So I’m just wondering if my ear would be an issue flying international with my prosthetic situation. I’m concerned it will cause me pain from the pressure of the plane. Input is greatly appreciated ...