Quinn - ear issues

Not sure if I have mentioned it here before...? But Quinn has had a chronic ear condition for years, which is worsening, and it is degenerative. He has been to the GP and ENT several times - in fact it is the only reason he has been to the doctor at all in the past 8 years or so. He has had creams, anti-biotic drops, and in June 2008 he had his ears cleaned out in theatre by the ENT to try to alleviate the issue, but it did not actually resolve the problem which has returned. We clean out his ear all the time using an antiseptic solution. The problem keeps coming and going through and never totally goes away. At time he is in pain from it, and other times it smells - a lot. The rest of the time he is fine.


When Quinn had that op 20 months ago - just when my life was at max insane and hectic with divorce etc etc etc - the original ENT found a much worse problem while he was in there. Basically his ear drum and hearing bones have been damaged and compromised, by this condition he has developed. He probably needs to have invasive surgery, where they will cut behind his ear and flap his ears forward and drill into his skull to get right into his internal ear to try to stop what's happening, but the damage can not be reversed and depending on how bad it is he may need hearing aid(s).

Since then life intervened in a big way and we have been treating his ear symptomatically as described. He went back to the ENT once or twice again, but the Dr could never explain the issue to me understandably, although he did make it sound bad and scary (but also chronic, unsolvable & degenerative) and I really thought it was 'just' an outer ear bacterial infection.

I recently met another ENT who explained the underlying issue to me properly and seems to be able to help. (I HOPE) He is one of the cubs kid's dad. He noticed Quinn's destinctive smell one night at cubs and immediately recognized the problem. We got talking on the recent hike and he totally explained the issue to me and I GET it now. It IS serious and bad but is treatable - although the op is NOT trivial.

I took Quinn for a hearing yesterday. His left ear is normal (hears in the 10dB range) but his right ear has mild hearing loss (35-30dB). Thankfully his right ear was fine on the conductive (through the mastoid bone) test, so the issue is in the middle ear and not inner ear. I.e the nerve and hearing bones are still ok. Which mean it IS treatable and probably fixable. AND he will probably not have to lose any more hearing. He is still functional at this level and may regain hearing if they can fix his eardrum.

The problem is quite complex but I just found THIS ARTICLE that explains it well. He has the worse condition called cholesteatoma - which is very smelly at times.

It's pretty flippen hectic!

Anyway we have an appointment with this new ENT on Monday and I am hoping we can get him in for the surgery these holidays.

This doc does most of his work in the public sector - at Red Cross & Groote Schuur Hospitals and doesn't really take private clients. He says this op is not easy and not many people will try it because it is a such a sensitive area and is risky. (Facial paralysis from nerve damage, hearing damage, brain issues etc) But it is something he has dealt with before. So please hold thumbs that he can help us!!!

(and that it doesn't bankrupt me - although that's the lest of my worries, I'll sell my house if I have to!!!)

Previously Quinn was reluctant to getting any ear treatments because it is sensitive and he doesn't like it when the Drs want to swab it etc. So he has been scared and a little resistant about needing the op previously, but now he wants it, because he does get teased and questioned when he has a discharge flare-up and when it smells. (it comes and goes). He gets called 'Quinn stink ear' etc and he was very upset on Tues when a teacher accused him of not bathing. When he tried to explain she told him he was speaking nonsense, and that she 'has grommets and doesn't smell so that's rubbish'. So he is getting self-conscious about it now and says he wants it done. He said he 'can't wait'. Poor boy!