Newly diagnosed with cholesteatoma and don’t know how I feel

Posted , 7 users are following.

hi everyone,

im new to this forum, so thank you for listening to my story. ive always had ear troubles, i had grommets as a child and then years ago my hearing in my left ear got worse, and i was told i had a massive hole in my eardrum, i was told with surgery they could get my hearing back, so 2 days ago i went in for a tympanoplasty with an ossiculoplasty to repair the hole and also put in a prosthetic earbone to replace mine that had eroded. however when i woke from the surgery, my surgeon told me that he could only repair the hole as he found that i had cholesteatoma in my ear and he couldnt complete the full procedure. he told me i will have to have another surgery in 9 months to remove the cholesteatoma growth and then simply walked off before i could ask questions. im only 21 years old and now im left with 2 weeks off work to worry and recover from my ear surgery whilst trying not to worry about the complications from this disease. ive read online that it can spread to my brain and kill me, and im just getting more and more depressed. my follow up appointment isnt for another 3 weeks so i cant even ask my surgeon anything until then. any advice would be greatly appreciated, i feel so scared and alone with this.

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6 Replies

  • Posted

    Where do you live Amy?

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  • Posted

    First thing is not to panic. you've read about the worst possible case, it can happen, but it's incredibly rare. The fact that your surgeon has said it's not urgent means it must not be worrying him too much. They do grow, but very slowly, so there's plenty of time. Spend the time between now and your appointment writing down any questions you have for your surgeon, and take it with you to your next appointment. He won't mind, it's part of his job to make sure you understand your condition and the treatment that you're going to have. Ask for copies of clinic letters to look at at home and discuss with your GP if you need anything explained. Good luck, hope the surgery goes smoothly.

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  • Posted

    Amy it can be scary and yes it can travel to your brain, However i was born with an undiagnosed cholesteatoma and it was found right before my 10th birthday at which time it was entering my brain area. I was told 6 months longer and I would have been dead. Resulting in surgeries every 3-5 months for about 5 1/2 years then more as i have been aging. So as you can see you have time as I had about 10 1/2 years before it would have killed me.

    My battle was not fun and to this day i still have surgeries. i am over 48 years old now and other than hearing lost and daily bats with dizzyness my live has gone on.

    Make sure the doctor orders a CT scan to assure your mastoid is not effected no matter how small he thinks it is there is a chance and you want all areas checked before you are opened up.

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  • Posted

    This cholesteatoma cyst if spread towards the brain could be worrying. I was diagnosed with cholesteatoma myself a month ago. Mine is the result of a non functional Eustachian Tube due to 3 unsusscessful sinus surgeries which clogged my sinuses. The most important thing you should know from your surgeon is what technique he is using to employ. Canal wall up (postauricular) which preserves the wall between the middle ear and the mastoid bone provided there is no mastoid bone infection happening. ( no smelly discharge from the ear).Canal wall down which is most radical when the mastoid bone is involved. The easiest one is Endoscopic or Transcanal Ear surgery which allows for a quicker recovery and preservetion of the inner ear. So, your surgeon needs to explain you where the cholesteatoma is actually located and if it started "eating" some of the hearing oscicles. Very, very rare and only in cases where the cholesteatoma was late discovered so it started entering into the brain the situation could be worrisome for either the patient and surgeon. If your surgeon doesn't have at least 90% success rate in performing this particular kind of surgery I would suggest to find another ENT surgeon who's specialized in removing the cyst. Usually if not congenital cholesteatoma formation is the rezult of poor ventilation of the middle ear-ET dysfunction. I am personally very fortunate to have surgery with the most skilled ENT in the field who's success rate is near 100%. Don't get desperate I've seen full recovery after this kind of surgery.

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  • Posted

    Hi Amy, welcome to the forum 😊

    I was 16 when the gp discovered the cholesteatoma inside my ear, I had 3 seperate operations which took place around a year after. The first was to remove the growth, the second was to repair the bone behind my ear drum and the third was a check up operation (to make sure there was no growth left)

    I wouldn't worry about complications. I've read through many forums online and not once have I come across anyone who's had complications with the surgery or the growth itself. You're not going to die!!

    Try not to stress. It's not the greatest thing but at least it's been spotted and it's going to get sorted.

    Hope everything goes smoothly for you and make a trip to ENT if you're unsure about anything.

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  • Posted

    Hiya,

    So sorry that you have been diagnosed with cholesteatoma but don't panic, the internet will give you horror stories.

    My cholesteatoma was found when I was 12 (am now 29) and I was in a similar situation to you after having grommets and losing hearing in my left ear.

    The surgery is ok, recovery time about a week in my experience but hearing can take a little bit of time to sort itself out again, it can be quite muffled for a while. Yes, in bad cases it can spread to the brain but that's extreme and uncommon so don't worry. If it was an immediate concern and you were at imminent risk then your surgeon would have done something sooner.

    Just focus on getting better from this surgery and enjoy yourself before the next one. Hopefully your surgeon will get it out in one go and that will be it! Good luck with everything and try to relax x

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