6 year old daughter recently diagnosed

I have a very similar experience. I've had 2 operations to remove cholesteatoma and am due my next operation next Monday. The hearing won't get worse but I've also been told it won't get better. It is possible I may have to have a hearing aid so this may be a similar scenario with your daughter. I was actually referred to a specialist doctor who would perform laser surgery but he advised me it isn't a good technique to use as you can't get rid of it properly.

Hopefully your daughter recovers quickly.

Hey so i had exactly what your daughter has but i had it when i was 8 so a long time ago now as i am now 21 but after my surgery i had the hearing test done and he told me i had 20% less hearing in that ear, he also asked if i wanted to have a hearing aid but i said no as i was only in like grade 3 or 4 or something like that at the time so basically i have lived without one and my hearings been pretty good i just find it hard to hear when theres lots of background noise. i had the mastoid cholesteatoma surgery which was close to my brain and i'll never forget the pain i was in when they diagnosed it honestly the worst pain i have experienced in my life so far! the surgery was no where near as painful as it was before that and being kids they bounce back fast i did anyway haha.

i hope your daughters surgery goes well my fingers are crossed for you  

So sorry to hear your daughter has this. I have had 18 ear surgeries and 10 of the surgeries have been to remove cholesteatoma because mine kept coming back. I eventually ended up having a Canal Wall Down Surgery (imo this should be a very last resort) with this surgery I am now able to see my Dr once a year and have the cholesteatoma cleaned out in his office completely pain free. The cholesteatoma in my case, did "eat away" most of my hearing bones, but I have a BAHA (bone anchored hearing aid) now that makes up for much of what I lost. I would recommend having annual MRI's done to make sure it doesn't grow back. Cholesteatoma should be caught very early on for best results...unfortunately for me, mine wasn't caught early for any of my surgeries. Hopefully your daughter will have this surgery & will be completely well for the rest of her life! I'm so sorry you & your daughter are going through this & I pray all goes well!

Hope your daughters op went well. I have come across your post whilst searching for info about my 10 year old daughters ear problems and have signed up especially to reply to you as her symptoms sound similar to your daughters.

11 weeks ago my 10 year old daughter came home from school saying her ear had started bleeding during class.I thought it was just one of those things but it happened again a few times that day.

Up until then she had been fine, the only thing I noticed the previous day was that she complained of a bad headache and led quietly mid afternoon(very unlike her) and I had also asked her to turn music down with headphones on and she said its because she couldnt hear it properly.

I took her to the drs next morning who said no infection, eardrum fine and it could be a burst boil and probably wouldnt happen again. It did as soon as we got home and has done over 150 times since. Before it bleeds she complains of it feeling like its getting bigger inside, she screams in pain then it feels like popping then bleeds. It isnt just blood it looks like its mixed with something and is runnier. It also has a terrible smell like your daughters did. What were your daughters symptoms? My daughters is worse at night.

Over the last 11 weeks I have been to the drs 7 times with her,111 once plus out of hrs drs. She has had oral antibiotics, 2 sets of eardrops and a steroid cream none of which has helped and there has never been any sign of infection or a burst eardrum. After seeing a different dr at out of hrs she has said she needs an urgent referral to ent by her gp to rule out mastoid problems. I am currently still waiting for the appointment to come through.

All the research I have done about bleeding ears worryingly seems to point to mastoid issues or a cholesteatoma.

Hope your daughter is recovering well.

Hi Julie

I have only just come across this post as I would have replied sooner. I'm sorry to her your daughter has b3en diagnosed with colesteatoma. It can take a very long time for colesteatoma to be found and sadly by the time it is diagnosed it has become quite severe and causing pain and discharge really smelly discharge.

My son was first diagnosed in year 3 so 6 years old but suffered very bad for 18months prior to diagnoses. He has since had 5 operations to remove colesteatoma, his first operation was 9 hours long it was very complicate and very aggressive as the colesteatoma was chronic and was at the base of the brain and has eaten a2ay all the small bones tissue ear drum and inner ear so it was an obliteration he had as well as a radical mastoidectomy.

He lost ALL hearing in that ear and has now a complete dead ear. I would prepare your self and your daughter for a hearing loss.

Jake then has gone on to having another 4 more revised mastoidectomys his last operation was preformed in London evelina children's hospital by professor Jiang.

He has been told because of the severity of the disease and because of how badly the colesteatoma ate away most tissues surrounding and and now has severe nerve damage he won't find a baha effectable.

Jake has had laser surgery I believe it was the second operation to remove more colesteatoma but the laser surgery was not great and ended up having another operation only 8 months after to remove and clear out more.

He has now been refered to Ipswich hospital to see another specialist to see if they can perform another operation called a blind sac closure but he will b the youngest to have it done and it goes without saying the complications are very big. But Jake has suffered very badly with his ear, his balance is very bad he suffers with calorific effects, he has severe tinnitus which drives him crazy and he gets very frustrated.

My advice to you is join national deaf child's service ndcs they are brilliant with help and sources of information. And depending on where u live there may also be a local deaf charity u can join ours in the south east it kent deaf child service.

I haven't wanted to scare you but when I was going through this with Jake all I wanted was someone to be completely honest with us of what to expect and I didn't have that so after his first operation we was in a state of utter shock.

I do hope your lo gets her operation as soon as. Please feel free to ask any questions sadly I have had to become very knolagible of this horrible disease.

Michelle.x