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Cholesteatoma in 8 yo with moderate hearing loss - can hearing recover after surgery

(42 Posts)
PacificDogwod Wed 11-May-16 21:40:03

DS3(8) was diagnosed today - I did not see this coming.

So, now we are waiting for a CT scan and then surgery.

Any knowledgable people about? Professionals or parents/patients with experience?


Wanderingwondering Wed 11-May-16 21:45:58

Sorry to hear that-they are nasty. My only experience is my husbands who had one removed last year. His hearing improved a lot after the surgery but that wasn't guaranteed. It wasn't a nice procedure and he felt rough for a good week afterwards but hasn't had any ear infections since.
He was warned about nerve damage but only has slight numbness on the scar.
Hope all goes well.

PacificDogwod Wed 11-May-16 22:15:17

Oh, thank you for posting.

I did not see this one coming tbh sadshockblush

He had micro suction today and the initial diagnosis. Now has to keep his ear dry - no more swimming!

It's good to hear that your DH's hearing did improve after surgery.

Wanderingwondering Wed 11-May-16 22:46:11

Did he have a lot of ear infections? DH would get at least 2 a year and they would make his whole face swell up-it's a big relief for it to be over.

The hearing was a relief too-we noticed fairly quickly that it was better and it was confirmed by the test a few months later.

Wanderingwondering Wed 11-May-16 22:48:59

DH still has a strict Vaseline + cotton wool routine for every bath and shower and wears ear plugs if we take the kids swimming. He won't swim properly himself any more which is a shame-I'd be interested to hear any feedback you get on after care

PacificDogwod Wed 11-May-16 23:22:59

No, he's not had many ear infections - one that I remember when he was 1 yo, was ill with fever and pain over night after an eventless flight abroad. Ear drum popped at 5am, absolutely poured pus and he fine afterwards. He's been fine since until this ear started discharging on and off for over the last year and did not really settle with various treatments.

I was sure he'd have something in that ear, like a pea or summat….

I'll let you know what they say, but apparently we will 'have a journey in front of us' according to the consultant today. <wibble>
He had his first shower with cotton wool and Vaseline to protect his ear.

He is NOT happy and not shy of letting us all know about it. Wee grump. I feel sorry for him.

Wanderingwondering Wed 11-May-16 23:54:19

Ah-poor thing-I do feel for him, and you! It must have been a shock.
Hope everything is straightforward and it gets sorted asap

Tillysmum99 Thu 12-May-16 00:08:05

Hi sorry to hear that your DS has to go through this. My DD now 15 has been struggling with a cholesteotoma since 7yrs old, hers started with glue ear although she never had ear infections when she was younger. It was a major shock for us too as we had never heard of it before. We were lucky that she had a wonderful surgeon who explained every procedure to us but it has not been as easy road, however I was told hers was a particularly difficult case. On the up side she bounced backed from her operations very well and the hearing loss did not affect her too much, she had a hearing aid for her "bad" ear for a little while but decided it was not for her. Hoping all goes well for you and your DS

Tillysmum99 Thu 12-May-16 00:09:05

Oh and get plenty of Swim plugs for baths/showers and swimming smile

PacificDogwod Thu 12-May-16 16:50:09

Thank you, both thanks

He's told everybody at school today that he will be 'off for a year to have an ear transplant' grin

The shock (for me) has worn off. Now awaiting the CT scan appointment and then we'll see.
Dr. Google suggests that most paediatric cases are done in 2 sets of surgery a few months apart which gives a better chance of being able to swim and allow water near the ear longterm. Deep joy.

PacificDogwod Sun 15-May-16 15:15:16

It has now occurred to us that we cannot book a holiday until we know CT/surgery dates - I was so ready for somewhere hot, but no way am I driving!

Oh, gah!
He's had pain the last couple of days in his bad ear, now on antibiotics.

Wanderingwondering Sun 15-May-16 19:40:25

Oh no-that's a bugger as well. I'm not sure how long he wouldn't be able to fly for after the surgery either-it's certainly a good few weeks. sad

PacificDogwod Sun 15-May-16 20:58:48

We were told 2 weeks from the date of surgery, but who knows when that is going to be.

Ah well.
We holidayed here last summer, it was nice, just not very hot and I was ready for 'hot'.

PacificDogwod Tue 31-May-16 20:40:12

I am reviving my own thread as we have seen the consultant today.

He seems v nice (important to me grin) and experienced (even more important) AND appears to be one of a handful of ENT surgeons in the country who will attempt an endoscopic approach which, if successful, would avoid surgery via a cut behind DS's ear.

The CT showed that the ossicles in his middle ear are likely eroded and he will need to have his mastoid cleared too sad. So any recovery of hearing in the affected ear would have to be via reconstruction surgery some time down the line.

We are on the waiting list now, will accept any short-term cancellation, so will holiday in the UK, I think. I've been investigating Tiree grin

PacificDogwod Sat 04-Jun-16 20:09:35

Oh holy crapola, we have just received an appointment for pre-op assessment <wibble>

Things are moving faster than I expected… <scared>
DS has come round to the idea that he needs surgery though, so that's good, I suppose.

MiniCooperLover Tue 07-Jun-16 19:30:51

Good luck Op. That's great it's come about so soon, honestly, no one has to wait around then. My DS (5) is having grommets put in, together with Tonsils out in a couple of weeks. I'm dreading it but am hopeful of a good recovery for his hearing.

LifeIsGoodish Tue 07-Jun-16 20:38:58

My friend's dd had this age 9-10. She ended up having three operations over the course of 6m, including one through the back of the ear. She had to have 2 or 3 of the ear bones removed, but they were replaced by prosthetic 'bones' and her hearing is now in fact better than before. This is probably because the growth was affecting the ear bones.

It was a stressful time for the family, but all came out well, and she is back to full activity.

Hope this reassures a bit.

PacificDogwod Wed 08-Jun-16 07:35:36

Thank you - any positive story much appreciated thanks

I am hopeful that they might be able to restore his hearing, but who knows?
One step at a time...

vjg13 Sat 11-Jun-16 09:26:59

My daughter is monitored by ENT as she has a retraction pocket which has the potential to develop into a cholesteatoma. She has learning difficulties so will not comply with micro suction and all examinations are under GA.

Good luck and please let us know how the surgery goes, do you have a date?

Thomasturtle74 Sat 11-Jun-16 10:04:23

My son has had three surgeries for cholesteatoma. The first couldn't remove it all and the eardrum graft also failed after six weeks; the second was completely successful - titanium implant to replace bones and cartilage from his ear was used to graft a new ear drum and that is still intact over two years later; the third look was to double check everything was gone, as CT scans had always shown nothing! The third surgery was done by going in over the top of the eardrum, rather than the cut behind the ear, nothing was found and he now has yearly check ups.

His hearing definitely improved once the titanium was in place, although the surgeon did say that his surgery had gone exceptionally well and he was surprised by how much hearing he gained. Good luck with the surgery - oh and just a note we weren't told how long it can take, which scared us silly when we were waiting. The first surgeries were both in the region of 4 hours!

PacificDogwod Sat 11-Jun-16 13:03:49

No surgery date yet - we are a waiting list (and will be on holiday first, so it can't really happen until mid/late July now anyway).

Pre-op assessment was fine - he's a healthy chap, so no particular concerns there smile

Thank you for more of your experiences thanks

vjg, that must be hard when you DD is unable to be cooperative.
I've had several GAs myself, so am not too worried about that (well, apart from that it's always scary when it's your precious child, isn't it? sad).

Good to know that it can be a long procedure, Thomas - will bear that in mind on the day. And great result for your DS!

PacificDogwod Mon 18-Jul-16 19:38:08

We have a date: end of August.

Just back from holiday, had a fab time, DS3 too: he had initially said he would NOT got in to the pool at all (he is quite an all or nothing kind a guy and having been told he cannot dive in and cannot swim under water he felt it was not worthwhile bothering at all) but 35 degrees and a lovely pool soon sorted that one out.
He was VERY conscientious with using ear plugs or cotton wool and only playing in the shallow end or swimming head up - he had a ball smile.

School goes back here mid August, he'll be at school for a week, then surgery and then we were told 2 weeks off school hmm - this is his favourite thing about the whole drama grin

PacificDogwod Sun 21-Aug-16 23:05:30

It's happening tomorrow.

He is now a bit scared (as are we!), but went to bed ok.

He is to be there for 8am, fasted, only him on the list as 'it could take several hours' shockhmm[wibble].

Fingers crossed please.

PacificDogwod Mon 22-Aug-16 20:03:14

It is done - he's home, huge bandage round his head, but tucked in to fish fingers and chips (did NOT rate the hospital dinner grin).

Was in theatre for 5 hours shock, 'extensive disease', will likely need further surgery a year from now.

He's just happy to be home (as are we!) smile

lurkerspeaks Mon 22-Aug-16 22:11:05

Glad it went well and I hope the next few days pass uneventfully.

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