Cholesteatoma- experiences?

[user1471471539]

Does anyone have experience of themselves or their D.C. being diagnosed with this and the subsequent treatment/ op?

My DD9 has just been diagnosed after years of ear infections, it would be good to hear the outcome others have had.

Thanks

No personal expereience but there is a poster on here whose son has had this treated surgically. My daughter has a problem with her eardrum and is regularly monitored but is at risk from a cholesteatoma developing.

Thanks for your reply. My DD is most likely looking at an op. I went on the patient.co.uk forum which had some pretty horrifying experiences (all a bit old though). Just want an idea of what to prepare her for... 🙁

[[https://www.mumsnet.com/Talk/childrens_health/2635165-Cholesteatoma-in-8-yo-with-moderate-hearing-loss-can-hearing-recover-after-surgery?pg=2 this is the one]]

Thanks for this x

Yes I have experience of this, but you not be thrilled to hear about it. DS (now 14) had an op to remove his cholesteotoma when he was 11 after about 5 years of being referred for hearing tests, grommets etc. He hadn't been having ear infections, which may actually have delayed things moving a fair bit, as they kept on saying he may well grow out of it and come back in 6 months.

Finally they suggested a CT scan which obviously immediately showed a large growth and he had the op. Dr said it had most likely been there since birth and in these cases it is not uncommon for it to reappear. After obv and another CT scan we found out 14 months ago it had reappeared and therefore he had another op last March.

We are currently waiting for another CT scan to see if has grown back AGAIN!! Eek.

On the negative side, obviously our growth came back.
Also on the negative side we were told - and this may just be in our case because it has been there so long - that there was no chance that hearing would improve and an operation would merely halt the decline in hearing. The growth has destroyed the small conductive bones in his middle ear that transfer the sound around (layman's explanation!) Hearing tests done since both ops have confirmed this and DS has about 50% hearing in his left ear. Has been offered a hearing aid but will not have one.

On the plus side:

• although the op requires a GA we were in and out the same day both times - although do take a bag in to prepare if an overnight stay is required.
• apart from a couple of hours of feeling sick and being in pain DS recovered very very quickly and was his normal self within a day
• the scarring is right along the 'back join' of his ear ifyswim and even in my DS with a number 1/2 is not noticable at all (although the ear did protrude with swelling for a few weeks)
• stitches dissolved both times perfectly and healed v well.

Be aware no sport or getting it wet for up to 4-6 weeks and at least a week off school.

Sorry, had to rush off there.

In terms of preparing your DD for the actual op I think keep it as low key as possible - portray it as routine. Maybe tell her she may feel a bit sick and have some pain immediately afterwards but the nurses will definitely have medication which will sort that and they won't release her until they're sure she is ok, which she will be.

The actual op was longer than I expected - Dr said a couple of hours - although in reality I didn't get to see DS until around 4.5 hours after GA went in. Nurse said to me that the Dr we had usually states time as in time of him being active in the theatre and didn't factor in all the other people doing stuff with GA, opening ear up for him, stitching up etc. So prepare yourself for a wait!

ALso, another possible plus. My DS has been told if he so wishes once he's an adult (and therefore fully grown) he may well be able to have surgery to artificially reconstruct the inner structure of his ear which would improve the hearing to at least some degree. Im assuming this would be private.

Anyway, my DS has just adjusted to having one ear worse than the other, and has that disease known as teenagers selective hearing anyway! Most of his mates probably aren't aware of the problem.

Hope all goes well for you and DD.

Thank you so much tactum, that's exactly the kind of info I needed to put on my big girl pants and help her deal with this. We are definitely keeping it low key as far as she is concerned- your info will be really helpful in preparing her (and me!)

She's got pretty significant hearing loss in the effected ear and copes well, so any gain would be great. I have to admit it's helping her deal with the op that is looming largest now.

Thanks again

Just a quick note to say thanks again. DD has her op yesterday and, it appears, is in a similar boat to your DS (bones of hearing dissolved, quite an extensive area involved etc). Your info was invaluable- especially re the length of the op- we were told 3 hours and it was 4.5 too. It certainly helped me cope a little better.

She is ok as can be expected today and came home last night. Fingers crossed for a swift recovery and NO recurrence, eh?

Ok, so I have had this several times - my situation though is slightly different as I have L-sided microtia and the condition was caused by repeated infections due to inner ear surgery. I'm a lot older now and since a final surgery 5 years ago, my inner ear has been fine. Hoping that thigs work out ok - it's not a particularly pleasant thing to have but it can be sorted out.

Thank you both - it's so good to see the bigger picture when I'm dealing with a very upset and in pain 9 year old who sort of understands why this has had to interrupt her life but sort of doesn't. So pleased things have sorted out in both your cases.

I'm pretty sure we ll be here again in the not too distant future so any ideas for helping her (or me!) through would be gratefully received if there are any.

Just to add, I have had single sided hearing loss all my life and actually, it's not that bad! Don't panic if her hearing on one side isn't as good as the other :)