Cholesteatoma

[Annasut85]

So my son has always had ear problems since birth and it wasn’t till 2012 when his ear perforated then constantly getting ear infections and because he was almost on antibiotics he ended up having allergic reactions to them which he was hospitalised with every time. They then discovered he had something called a cholesteatoma and to this day 2018 he’s had numerous operations one after another it has caused him to loose his hearing in his ear he’s already had an operation in spring this yr now they telling me he needs another big operation and put down as urgent. This affects his everyday life
Has anyone been through a similar situation or have they done anything els a part from surgery to stop this condition surely this carnt be good for him he’s constantly suffering with smelly bloody discharge from his ear and pain every single day because it just keeps coming back. I’m just wondering has anyone els gone through the same thing was there anything els they did was different. My son is only 10 and this has been going on years and it’s awful that I carnt take this away from him

My 13 yr old son has had exact same .
Although he has partial hearing loss .
We are waiting his 3rd operation.
The smell from his ear is causing him embarrassment at School .

It's a dreadful think to deal with and very worrying

I had this when i was 12/13 (am now mid 40’s) and since I was late teens it hasn’t hugely impacted my life. I do have hearing loss in the ear affected and still have regular check ups with ENT specialist. I now don’t have any ear pain on the side affected (including when I ruptured an eardrum 5 years ago) but occasionally still have smelly discharge and have to get an antibiotic to help it clear.
No water in my ear at all has helped hugely.

It was at the time though the worst pain I have ever experienced (including subsequent childbirth) and really affected my teen years. I have also interestingly never met anyone else who had this and I find if I see a new doctor for any reason they are already hugely interested in my medical history.

Also another thing that has helped is regularly cleaning with suction (done by doctor)

Thankyou for posting.
My some has no pain at all!!
But a dreadful discharge which has become worse, he has it sucked out every 6 months of so by the consultant.
We are very vigilant with cleaning morning and night . His head of year at school has a set of antibacterial wipes cleanser and tissues he goes during pm registration and cleans it out himself, as well as after P.E. (sweating makes it worse ) not sure if is so much cleaning is wise but , as well.as drops twice a day . But it was the only way we can keep him going to school as fellow pupils were talking about him and making fun

Some = son

Hoping so much that it won't be like this for ever , he s 13 and it really gets him down