Hello, sounds pretty much like my daughter, she had 2x grommets and then hearing aid at aged 4. She has now at aged 20 had 4 operations after finding cholesteatoma in both ears, and collapsedear drum in one. They tend to go in aprox a year later to make sure it's all gone. She was offered bone anchored hearing aids to stop the risk of ear infections, and more issues, cholesteatoma in my understanding, is a by product caused by ear wax etc not being able to escape out due to the in ear hearing aids. She declined them but she was 17 at the time. She has just had another cat scan to see if it has returned (not had results yet). If there is anything you would like to know feel free to ask

Hi, my 8 yr old son had his first stage surgery 6 weeks ago. His next op is early next year. I also found the whole thing completely overwhelming. The worst part being the wait for surgery. My son has bounced back incredibly well though even though it is major surgery. Please feel free to ask any questions. I can also highly recommend the 'Parents of children with Cholesteatoma' Facebook page for support from others who have been through / going through something similar. X

Hello, my son is 2 years into his cholesteatoma journey. He was first diagnosed with glue ear at age 4,  when school were concerned about his delayed speech development. He was never offered grommets as it was only affecting his left ear. We were told he would eventually grow out of it, but that didn't happen. 3 years ago a foul smelling discharge started and we were referred back to ENT. After 6 months of treating the infection, he had a CT scan and was finally diagnosed with a cholesteatoma, aged 9.  3 months later he had an examination under anaesthetic, and the cholesteatoma was removed 4 months after that. He ended up having a 5 hour surgery and an unplanned canal wall down as it was much larger than he could see on both the CT and the previous surgery. He lost 2 hearing bones and there was erosion into the skull in 2 places. He stayed in overnight and the first couple of days were quite hard, but he quickly bounced back. The worse part was not being able to run around when he went back to school. 
We were told he would have to be checked for life, but due to Covid, we haven't seen his surgeon since his packing was removed 19 months ago. His hearing test showed that after surgery his hearing loss went from mild to moderate. Apart from knowing he will have to have his ear microsuctioned every few months (my son finds no this extremely distressing, especially as he was left for over a year without it being done), we are still in the dark over what happens next in terms of checking for reoccurrence or if they will try to reconstruct the hearing bones. 

This is very much an invisible disease as my son has never suffered any pain from it, neither does he get infections. The only thing he is really affected by is he hasn't been able to swim for 3 years, but we're hoping they give him the go ahead at his next appointment.
The Facebook page for parents that Chrissycc recommended is fantastic for suppprt and advice.

Thank you for your responses, I feel humbled by what you've all gone through with your children. I also already feel less alone, thank you.

I asked the surgeon about a second surgery a year later, but she was very dismissive. Everything I've read suggested it was common for that to happen.

It's useful to get an idea of what to expect immediately post surgery, thank you - so a few days of not being very settled? The not running around - is that longer term? My son plays in a football team...

Also the suctioning, is that a common regular aftercare?

So many unknowns!

I shall join the facebook group too, thanks for the suggestion!

Hi Everyone,

My daughter who is three has recently been diagnosed with Cholesteatoma in her left ear.  She was born with a cleft palate and we knew about the glue ear potentially being an issue in the future but we were never ever told about this disease. 

She has had frequent ear infections since her grommets fell out about a year and a half ago and GPs just kept giving antibiotics. Due to covid her ear appontment with the ENT were cancelled so many times, and when we did eventually get the appointment we received this shocking diagnosis.

Now we are waiting for the scan and the operation.  My anxiety is so high, we feel very alone and scared for the operation (apparently minimum of 4-hours we were advised) and the outcome of this all.  The risks that were mentioned but told were rare are also playing on my mind. The ENT is also very matter of fact about things, and it just isnt reassuring.  We have been told that they will only know for certain the damage once they operate and that we will be at the ENT regularly for at least the next 5 years.  It all sounds so overwhelming and frankly sad that my poor baby has to go through this.

Thanks for sharing. your stories on here.  I think having other people that are going/ gone through this helps.  

@birdy33

I know how you feel! Have you met with the surgeon yet or is that the next step for you? Our surgeon was very (pardon the pun) cut and dry over it - not really open to discussing what-ifs.

There does seem to be a lot of matter-of-factness around dealing with cholesteatoma from the medical teams. I wonder why this is, but imagine they have to believe in the process fully in order to be able to confidently and decisively act? Given that surgery is the only route for this, there isn't room for them to be uncertain. That said, it is difficult when as a parent any research we do seems to bring up all the uncertainties around whether one set of surgery will actually be enough.

It is heartbreaking to think of putting our little ones through any kind of surgery (you'll know this already from having the grommets) and I guess our role as their parents is to have the worries on their behalf, shielding them from the concerns so that they can get on with the messy job of being kids and bouncing back. 

The facebook group @chrissycc mentioned is a good space to visit, and I've also now found my local branch of the deaf children's society, which has enabled me to talk to some more local people to me who have experience with the exact surgeon we have.

I'm happy to talk more - I think it's so important we support each other ☺️

@emkaydeebee

Thanks so much for your post. 

Sorry to hear about your son, its just so awful.  I know all about the dreaded glue ear that just never goes away. I see that you posted early June so is your son on the waiting list for surgery, or do you have the date yet?  Did the CT scan reveal the extent of the damage?  I hope its very minimal.  

We are  on the waiting list now for a scan and the surgery.  Because of my daughters age we are not having a CT but more of an xray. The ENT said it would either be them or someone from their team to operate but that it will be a specialised surgeon. I agree that they do not seem to go into much discussion, i have just had to do loads of research myself.  Her hearing in that ear is affected already so all we can do is hope that it improves after the surgery.

My daughter had her cleft and the grommets done in one surgery at 9 months, so this will be her second one. I feel more worried about this one due to the fact its so near the brain.  

Please may you let me know how you connect with your local deaf society?  Thanks i will check out the facebook group also.

I agree that we definately have to support each other, so please also feel free to reach out :) i know this disease is quite rare so there isnt much support out there from my research. Please let me know how things go with your son.

We've just this week been given the date of 6th August (I had to ring up and chase). With the disruption of the last few years, we were keen to try to have it in the summer holidays so as not to miss yet more school.

The local groups can be found here: 

https://www.ndcs.org.uk/our-services/local-support-groups/find-your-nearest-local-group/

I think I've just spotted you on the Choeslteatoma Facebook page, so I'll respond on there too!