Recovery and long term results

Hello Sandra

I'm very sorry to hear your little one has colesteatoma in both ears bless her little heart.

My son has had very extensive colesteatoma in his right ear since the age of 6. He has had 7 operations on his ear to date to remove the horrible disease. If they have caught it fairly early then there is every chance that she will have some remaining hearing. Unfortunately for my son it wasn't and it destroyed everything in it's path including the ossicles and tissues surrounding. It became very clear very early after first operation that he had lost the majority of his hearing in that ear.

He then unfortunately has gone on to have many more operations to remove the disease and infected tissue and is now profoundly deaf on that ear. He recently went under the knife again to have a blind sac closure with totally obliteration and closed the whole ear canal up so he now does not have a hole to the ear at all it's closes up. This wasn't made lightly as it's a very very big op but he was suffering horribly with the constant infections etc.

My son has now been diagnosed with it also in lef ear so will be having further investigations and operations an that too.

He is only hearing at 40db in left ear but he copes amazingly.

He has had the bone anchor hearing aid on a soft band and coped well but he found it very frustrating. He also had cross aids which worked for a while but he started getting infection due to the moisture they created so he then learnt quickly on lip reading and facial expressions.

It's a very lonely world to b in when something life changing happens and as a whole family we struggled. Our son is no trialling a bone anchor hearing aid on a sound arc and it's amazing. He does not want to make that final decision yet of more operations for the pertinent bone anchored hearing aid and the consultants have said that there is no hurry to make that decision.

I hope I have not scared u but I am a very upfront honest person and I don't want to spin u some information that is false.

All I say is know u r not alone and that there are others going through the same hun. The operations are big and she may be away from u some time but these doctors that spot the colesteatoma are specialised in there area of expertise and will do their best to remove the colesteatoma keeping the important structures of the ear.

Also national deaf children's society have a lot of information you may find helpful.

My son is now 13 he is in mainstream secondary school, copes well with extra support and is doing ok. You will be amazed by the strength and resilience your little one has.

I look at our boy every day thinking how lucky we are to have an amazing son He does not let his problems stand in his way.

Good luck with everything keep us posted on your little ones operation ect.

Also the hearing aid that are mostly used or recommended are the bone anchored hearing aids but as I say that does not mean another operation because there are the Softbands and the sound arc.

What are in UK r u if you don't mind me asking

Hi Sandra, 

I have had the same as your daughter. I am 27 now. First diagnosed as a child after being told it was glue ear and infections due to swimming. 3 lots of grommets in both ears (I think this was the start of my problems). After my diagnosis of cholesteatoma at age 11, I think,  I had my first mastoidectomy but the cholesteatoma had done damage to the ossicles so my hearing was compromised. I have since had numerous mastoidectomies and tympanoplasties and ultimately had to have a mastoid obliteration (age 23) which has rendered me deaf in my left ear. 

If the surgeon is careful, your daughter should have normal(ish) hearing but if the cholesteatoma has damaged the ossicles then she may find her hearing is muffled. 

My advice would be to ask the surgeon to widen the ear canals if possible as this enables the canal to airate and dry out the wet ear post op. I had this done several times but unfortunately I scar badly so they just shrunk back down to normal so my ear was constantly wet and warm and therefore was always infected and leaking.

I really hope your daughter's op is successful and it's nipped in the bud. Do your best alongside the surgeon to keep that ear dry!! 

Best of luck x

Just thought I'd update this.  My daughter had her operation on Monday (it's now Thursday).  Because of her other problems she had to have a pre-med, which was some medicine they gave about 45 minutes or so before she went to theatre.  It basically made her stoned, she was very relaxed and found things quite funny, especially when she got hiccups!  It meant we were able to get her to accept the face mask for the anaesthetic easily, which had been a major problem before.  She needed quite a bit of time in recovery afterwards due to the pre-med.  In total it took about 5 and a half hours from going to theatre at 8.30am or so to being back on the ward at about 2.00pm.  She came back with a large bandage around her head, they told us they'd given her some fairly strong pain relief before she woke up.  She was woozy and quite dizzy, we had to help her to the toilet as she would have fallen.  They did warn us to be prepared for dizziness after the operation.  Her surgeon says she will need hearing aids, as the op they have done was for the smaller cholesteatoma and it has already caused damage to the ossicles.  He wants her to have external, behind-the-ear aids, as when she gets older and her hearing deteriorates due to old age they will be able to be adjusted to account for that.  They thought initially she might go home the same day, but it wasn't possible and we stayed in overnight.  Before bed time they removed her head bandage, she'd bled quite a bit through it but they said that was expected.  Her surgeon used glue on the incision in front of her ear, so no stitches to be taken out next week, which I'm relieved about.  They put cotton wool covered with vaseline into her ear to soak up any discharge.  We were told a blood stained discharge is expected, but that if it turns into actual blood we need to take her to A&E.  We have continued with paracetamol and ibuprofen, she complains of pain occasionally but only when she's due another dose of pain relief.  Her ear is still discharging, so I'm going to go through lots of pillowcases, but cotton wool with vaseline is doing a good job during the day.  She will need to go back in 3 weeks to have the packing in her ear removed, again, under general anaesthetic, and they'll then monitor her regularly until she's fully recovered.  At that point, we start again with the other ear!

Hi Sandra, 

So pleased to hear your daughter's op went well! 

I hope her hearing isn't too affected post op. I always found it took a few months to stop being muffled anyway! 

Wishing your daughter all the best for the future and fingers crossed no more operations!! Xx