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Cholesteatoma

(4 Posts)
M00ninthesea Sat 06-Jun-15 21:47:46

Anyone with any knowledge?? My LB recently went to a hospital appointment for glue ear, only to be told that we have an urgent referral for surgery due to cholesteatoma!
Needless to say he panicked hearing the urgent referral, but have calmed him now!
We weren't really told what to expect, anyone know?? Will they go ahead put in the grommets & diagnose cholesteatoma or remove that in this surgery?? He hasn't had a CT scan yet, do they need to do this?

The actual removal appears to be quite major with a couple of weeks recovery, just trying to gain as much information as possible to prepare him!

Any advice would be appreciated!

DishPig Mon 08-Jun-15 02:45:02

Hi M00, yep cholesteatoma is a complication of otitis media (ear infections). A build up of debris (skin cells etc) occurs behind the eardrum due to a hole or retraction in the ear drum, this can damage the middle ear bones or in worse case can spread serious infection, but this is rare in Western countries. Sounds like it's been caught early which is good. Surgery is the cure, CT/MRI is needed to find the extend of the cholesteatoma, that will guide the need/extent of surgery.
I've seen plenty of kids do well after this surgery, often with no hearing loss or very mild.

Ps. I am a paediatric audiologist, not an ENT surgeon, so make sure you talk to the ENT treating your child and get them to explain it all to you so that you're satisfied. This is a pretty routine op for them, but definitely more complicated than grommets.

Best of luck!

M00ninthesea Mon 08-Jun-15 14:30:31

Thank you so much! So are they likely to put grommets in at the sametime? I have left messages with ENT & my GP asking question but haven't had a reply!
Hearing that's a pretty routine op puts me at ease some what.....I had to google to find out what it was & hearing horror stories....I know many are worse case scenarios! So thankyou

DishPig Mon 08-Jun-15 15:16:28

No worries. Happy to help. Often won't need the grommets if they are already doing the cholesteatoma surgery, although I have seen both done on occasions. But it's hard to say without the results to hand (i.e. depends if the cholest. is only in one ear but the other ear also has glue ear etc...).
Keep trying to get in contact with GP or ENT secretary, always good to have all the facts before going under the knife!

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