Hi

I haven't been through the implant route because of ear infection, but I can offer my experienc. so my 2 year old is bilaterally implanted as is profoundly deaf. My eldest, who is now 12, and fully hearing, did have glue ear and reduced hearing due to this when he was younger. it was only ever a major problem in one ear so I was advised grommets and decided on only the one ear. The grommet lasted 3 months and came out. the perforation in his ear drum did not close. He had the surgery when he was around 5 or 6 and the Hope was not healing. This meant that for all those years he was getting infections no matter how we tried to keep his ear dry. As you can imagine, amost 6 years of plugging an ear at bath/shower/swimming/swimming lessons etc... is a massiVE pain and was never fully effective. It was no doubt, and I have been told by the consultants that he has seen over the years, that it was the water that gets in. It got to a point where we thought it was fine, it was still perforated but there wasn't any signs of infection so we weren't as bothered about plugging. However, the truth is that there was almost always an infection there as at a check up we thought all was fine and he was told he had an infec and given antibiotics. Now here's the problem.... Ben ended up with a cholestiatoma which was caused by the repeated ear infection, this can lead to permanent deafness if untreated. He had to have surgery to remove it, which was 2 months before my toddlers cochlear implants surgery and it is pretty similar surgery that carry the same risks. So I was going through the same thing with both my hearing child, AND my deaf child! 
May eldest now has the same scar as his little brother! but during the surgery they closed the hole up. It's called tympanoplasty. Basically, grafting something over the hole and closing it up. so surely this would be the first port of call, as opposed to implanting when it isn't necessary?? Just because of infection!!! that's blown my mind. they Don't do the tympanoplasty on kids of a certain age UNLESS there's a good reason for it, as it is surgety at the end of the day. But cochlear implants are an extreme cure!! 
Maybe speak to your consultant and ask aboit that. He has had no more infections and no issues whatsoever since and the years of torturous ear plugging and trips to the docs and pharmacy and antibiotics and ENT are over!

hope this helps a little 

Thank you mmbn11. Sounds like you have really been through it.

At the last ENT appointment we were told they wouldn't repair holes until her head was fully grown (?!)

The reason she had the grommets is because her eardrums were laying over the hearing bones which meant that they couldn't move and transfer the sounds. (Stop me if I get too technical!!) So closing the drums would get us back to square one again.

I wish ENT and Audiology would get together in the same room it's like ping pong back and forth between the two.

Thanks for sharing your experience. Really appreciated.

My son had repeated ear infections from the age of 8, which led to repeated holes in the eardrum and these days mild-moderate hearing loss in both ears and bilateral bone conducting hearing aids (BAHAs in his case because his hearing fluctuates so regular hearing aids are not suitable).

We were puzzled by the ear infections which started out the blue, were very bad each time and seemed to be unrelated to any specific incident. He would swim underwater and immediately get burst ear drums and an infection but equally could get them completely out of nowhere. The consultant said that it’s not possible to know the cause and made the very good point that “We are where we are” and so it’s really about dealing with the impact, rather than worrying about why, as you can’t really stop them happening.

Generally speaking a lot of holes in the eardrums will repair themselves but at one point where we began to notice an impact on hearing we saw a consultant/ surgeon and they discovered that he now had 50% holes both sides. They did not operate for at least 6 months because they have found that myringoplasty operations are  more successful the bigger a child is so it was important - even though he struggled with hearing for that period - to try to eke out a little bit more time before they operated. 

He has since had to have myringoplastys on a number of occasions, one ear once (successful as a repair but with hearing loss as the eardrum is of course scarred from the ear infections/ holes/ operating) and the other ear three times thus far due to the hole reappearing.

We have learned that it is important to try to repair the hole if at all possible (even though in his case it has not yet been fully successful) because with a hole present there can be cholesteotomas, where epithelial cells grow through where they shouldn’t (eg under the ear drum), which they have found every time he has had a hole repaired. Cholesteotoma is benign but can do a great deal of damage as it grows and sticks to structures, so in his case he has ended up with some of the hearing bones being replaced with metal hearing bones as the hearing bones themselves were damaged by the cholesteotoma growths.

A key issue in my son’s case is that we have had repeated failure of the operation thus far and it has finally come to light that this is a faulty eustaschian tube; incorrect pressures can cause a graft over a hole in the eardrum to suck inwards and pull away, hence the hole does not stay repaired... and so the cycle begins again.

For his latest repair of the eardrum a tube has been inserted to try to sort out the pressure issues in the hope that the graft will work this time.

Having been operated on so many times, this latest recent operation is the last chance for the ear before moving to the BAHAs being implanted.

I would recommend investigating (1) the idea of eardrum repair if holes are an issue, even if they feel that your child is a little young and may need to wait a little longer, (2) being more prudent about avoiding water in the ears (eg avoiding swimming if possible) because a child who is really prone to infections is likely to get them quite easily in that environment and (3) asking whether BAHA hearing aids might be an option. The beauty of BAHAs if your child is prone to infection is that there is nothing in the ear at all as they go on the bone that runs behind the ear, not on/ in the ear itself. My son currently wears his on an elasticated band but there is an implant version that we will explore next if this latest op doesn’t work. You can get bands of different colours that blend with the hair. They are given for lots of different reasons, for some because their external parts of their ears are not fully formed, for some because their hearing fluctuates (as per my son), for some I believe because they get too much infection in the ear so can’t wear something in the ear. We were lucky to hear about them from one consultant who pointed us in that direction and had never heard about them beforehand. The great thing about them is that one can wear them on the band to try them out to see if the wearer likes them and gets benefit from them without any commitment to having to have them implanted, but still having the option to implant too after having tried them for a while.

Operations are annoying and a bit scary when your child hasn’t had them before but having the seen the damage infections and cholesteotomas can do, it is certainly worth doing... and I say that even with us not quite being sorted yet because I can see what they have had to remove/ repair when they’ve gone in  and had a look at it. 

I’ve never posted on here before and I know that some elements of my experience are not quite the same as your own but enough bits chimed here that I hope there’s something useful here amongst sharing my son’s experience and advice.

Hi @platespinner

Ah I see, yeah, but if it stops the infections and cholestiatomas forming then it may be worth a shot. However, with her age, she needs her hearing NOW 😕 It's a difficult one. But I have read @melon85's story and oh my days!!! What a awful long period of operations and things! What a nightmare the poor little lad has been through. But sounds like that BAHA device (which I never fully knew what it was until now) may be an option. 

I do hope something gets sorted soon as the impotence of hearing at this stage is massive for the development of speech, as you will know. I hope you find some good advice on here that you can take to the professionals. Then you can all decide the best way to proceed. I guess a lot of it is putting faith in their knowledge and experience too. 

Good luck with it all x

Sorry @platespinner 

I got mixed up with another thread and thought you said your daughter was under 2!! I don't even know how old she is as you havent specified so speech isn't necessarily a problem. 

Thank you melon85. Wow - You certainly have a lot of experience of ENT!! That's really helpful and I will have another go at getting a clearer picture from ENT before we get too far down the implant route and I will be asking these sorts of questions at the impant centre too. Thank you for taking time to share your experience. It's good to hear from other parents, it's a confusing and lonely experience without knowing that other parents share similar anxieties/frustrations.

Thanks mmbn11 - no she's 11! But you are right she needs her hearing now. So much of her social devleopment is impacted by not being able to properly hear other children at school. Thanks again for your help.