6 year old daughter recently diagnosed

Posted , 10 users are following.

Hi there,

My daughter has been having chronic blood and smelly discharge from her ear for over a year.  She has recently had a CT scan which shows a cholesteatoma.  She is scheduled for surgery in March. 

Her hearing is below average in the affected ear and I was wondering if her hearing will be damaged further during surgery?

Also, I have read about a surgeon in Gloucester that does laser surgery.  Has anyone ever had this done?

This seems such a horrible disease sad


0 likes, 20 replies

20 Replies

  • Posted

    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.

    • Posted

      Thank you so much for replying.

      That's really interesting to know about the laser surgery.

      Her consultant told me that her hearing would be much worse after her surgery than it is now.  Hopefully that won't be the case but I guess it's just a waiting game.

      Thanks again for your reply.

  • Posted

    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 smile 

  • Posted

    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!

    • Posted

      Thank you so much for replying. I am just so confused just now with all of the information I have been given and have read.

      Hopefully the condition was caught early enough with her. It's been hard going with all of the infections and drainage and she just really isn't her happy self.

      It's good to know that the hearing loss won't necessarily stop her from doing well at school etc.

      I just want the surgery done now!

      Thanks again x

    • Posted

      Hi Julie

      ?I'm a newbie.  My son has bilateral cholestatoma and has had previous canal wall down surgery in one ear and canal wall up in the other.  It has returned in both ears.  We have been advised to have canal wall down in both with regular surgery but at the expense of his ramaining hearing.  From the research I have done I believe Laser surgery and canal wall up is the best solution for retaining as much if of his hearing as possible and enabling future reconstruction and swimming possibilities.  I am meeting with  John Hamilton the laser guy in Cirencester this afternoon with my 9 year old.  I'll let you know what he says about laser.  His website is good.  An ENT consultant friend of mine has also recommended a Peter Valentine in Guildford who also does laser and focuses on canal wall inact surgery.  Its all so daunting isn't it! 

    • Posted


      Apologies for not replying sooner!  How did your appointment go with Dr Hamilton?  I have asked my local NHS if they would fund a referral to Dr Hamilton for laser surgery.  I have just had a phone call from them to say that they do not believe that the laser surgery is any better than the conventional way and that there is a higher possibility of facial nerve damage when using the laser??  I disagree and will be taking it further.

      Anyway, I hope your son is ok.  It's such a minefield.  I feel completely lost x


    • Posted

      Just worked out how to reply on here!  I've PM'd you though.

  • Posted

    Hi julie,

    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.

    • Posted

      Hi Sarah, my 8 yr old has had 4 c'tomas out - that awful smell is always associated with them for him so DEF worth getting an ENT check up asap. FYI we went with laser - hearing still intact & 18mths all clear ...Also, if it is c'toma, get it out swiftly - they are usually slow growing in adults but can be much faster in kids. Fingers crossed it's something else though.

    • Posted

      Hi macs, thanks for replying. Glad to hear your son is all clear now. That must have been awful to have 4 in total. Can I ask what his symptoms were and how long it took to get a diagnosis please?

      The ent should be this week as she was put on urgent referral 10 days ago and its usually a 2 wk turnaround. I am glad I have finally got a referral as no dr I saw seemed to be taking ear bleeding seriously as her ear always looks fine inside plus it was never freshly bled when we saw anyone as it is worse at night so they could never experience that smell and the pain associated with the bleeding. Fingers crossed they find something to explain it.

    • Posted

      Symptoms - many ear infections that we couldn't clear, permanently burst ear drums, stuff running out of ears, smell, old blood in ear discharge etc etc. no ct scan as symptoms alone clear enough for our ent consultant (Mr Hamilton, mentioned in previous posts on original discussion). But sounds like you're heading in the right direction and hopefully will get diagnosed very soon.

    • Posted

      Hi there,

      I'm sorry to hear that your daughter is having problems with her ear.

      My daughters ear started bleeding last year.  She had a few ear infections in that time and the doctors always just put it down to that.  She had terrible, smelly discharge from the ear too.  We were referred to the hospital and it took months for them to eventually suspect a cholesteatoma.  She had a CT scan which confirmed it.  She then had exploratory ear surgery and they removed a polyp.  We are now waiting on the big surgery to remove the cholesteatoma.

      Hope that helps x


  • Posted

    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.


    • Posted

      Hi Michelle,

      Thank you for taking the time to get in touch.

      It sounds like your son has been through a lot.  The advice to join NDCS is a great idea.  I will look into that.

      We have her date through for her operation.  The surgeon wants to go ahead and do a canal wall down straight away.  I'm not sure if this is the right thing to do and I'm finding it hard to make the decsion.

      Her ear is oozing and very smelly just now.  It just seems like our kids never get a break from this horrible thing.

      Julie x


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