In a perfect scenario, how many surgeries should one have?

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I was diagnosed a year ago with congenital cholesteatomas in both ears. When the doctor informed me of this, he said I was looking at four surgeries. I have already had two tympanomastoidectomys (I believe this is what it is called-Incision behind ear, drilling, extraction of cyst?), one on each ear thus far. My third surgery is scheduled for January 8th, and my doctor said it was to inspect whether or not the cyst has started growing once again. We have waited 12 months to open up the ear again because he said it can take time to grow, and starts off microscopic. I guess my question is, upon further research: Is it normal to have a second follow-up surgery, or "Phase 2?" Both surgeries have been pretty successful and fairly pain-free, so I guess I wonder if it is necessary because these surgeries are so expensive, and financially a burden. Not sure if this question is silly, and I highly respect my doctor, but I haven't really read of people have a follow-up when things are normal and functioning well. Thanks!

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  • Posted

    Hi here in the UK my doctor told me I would need a second surgery, I'm still newly post op as of 11 days but however when I woke from the op he said I wouldn't need second surgery as he is certain every last bit has gone. I did a lot of research into cholesteatoma as I only found out 2 weeks before my op, and I had been suffering 4 years so they thought it would only be a little op and little bit of disease to which it turned out to be very extensive toma and turned into a major op and my loosing all hearing bones and my taste nerve.. But anyway my doctor went in from the front (canal wall down) and I have read so many articles that doctors who perform canal wall down surgery get better results and never need a second look in but when I doctor goes in behind the ear (because they have to get to the disease) then they end up needing a second surgery, so maybe have a chat with your doctor about trying the one approach. If I can find the article I will attach the link.
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    • Posted

      Thank you for your response, Katie. I'm so sorry to hear about the severity of your cholesteatoma. It's crazy how quickly things happen after diagnosis. Are they able to help you regain hearing in some way by artificial hearing bones, or anything like that? Is that possible? The cysts ate through the incus bone in each of my ears, and they replaced those with artificial bone. If those fail, they use titanium in the second surgery. I hope your recovery is going quickly and well. Thank you for the helpful information, and best wishes to you!!
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    • Posted

      Yes I only went in to have a polyp removed and the surgeon found the toma so rescheduled for 2 weeks time it was all crazy I didn't have time to process it all lol! Yes my bone had to be shaved and have a lovely dint above my ear! He said he did something to help me hear but it is damaged so there is nothing he can do, Thank you I have my follow up Thursday, I cannot wait to get this packing out!! It's so itchy! Are u in the U.S. is that why you have to pay?
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    • Posted

      Yeah, it is a lot to process! It's okay if you are still processing, haha! Luckily, they caught it so it couldn't do further damage to your mastoid. I read that if not caught, you can develop meningitis, which wouldn't be good. Yeah, I have a little crater-like spot towards the top of my ear too. I didn't notice it until months later because it was swollen for a while, but it's kind of creepy and cool at the same time. It definitely comes in handy when you want to gross people out. smile Aw, man-that would be hard. sad Subtitles are a great thing and have definitely come in handy. I hope your follow-up goes smoothly. Yeah, it's crazy how much they can stick in there. It's funny how many cotton balls you have to keep handy.. I am in the U.S. I actually had some schoolmates from the U.K. They were really awesome. Here, each surgery is about $30,000. Insurance covers a lot, but then you have to pay a deductible, and that amount depends on how good your insurance is. They can range from really low, to high. Ours is a bit high at the moment, but it will all work out. How does it work there? What is healthcare like?
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    • Posted

      It was all in my mastoid and had to have it all drilled but not removed except the little empty bit above my ear! I can't stop touching it lol🙈 I no I'm just hoping I can hear abit better when the packing is out but a lot of people said its not different! Gutted 22 and probably be wearing a hearing aid lol! .. I can't believe how much it is over there and how it all works! We have the NHS here so basically it's free, we don't have to pay for anything here doctors hospital ambulance everything is free, we do have taxes which pay into the NHS but we don't pay unless we go private, which I'm thinking about doing because my normal doctor never found thing cholesteatoma and he always had it under the microscope and the surgeon found it in seconds! I don't want it to come back and me be ignored for 4 years that something wrong is going on lol but suppose with free healthcare they don't care lol! Healthcare is pretty good but also really shit too u just get moved from one person to another alllllll the time until it's too late! Yes if the toma gets so far it can cause meningitis or a brain abcess and is life threatening so it is important to get rid! I don't get how in the U.S. U all afford surgery it's crazy!
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    • Posted

      Oh man, yeah... It's hard. Before I knew what was wrong with my ears, that's the same thing the audiologist said and I was 18 at the time. It would be sad, but at least a hearing aid would help you. Wow, that is really nice. That's how healthcare here should be. sad Yeah, a lot of people can't afford healtcare and when you can, you just have to weed out and evaluate what's really worth going to the doctor to check on. I never went unless my mom believed I really, really needed it.. So I've been to the doctor very few times until all of this ear shenanigans. It's funny going from no procedures, to suddenly needing four. Needles scare me!! Hopefully, one day we work out a better plan for our country. sad
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  • Posted

    The follow up procedure is quite common, but it depends on case-to-case basis. That's especially true for patients who suffer hearing loss since it can be done while attempting a reconstructive surgery.

    I think that those follow-ups can be omitted, however that's taking quite a risk. It might not reoccur and everything will be a-okay. It might reoccur and by the time it's diagnosed with an otoscope, you could suffer permanent hearing loss.

    Definitely consult with your doctor beforehand. When dealing with cholesteatoma the first priority always is getting rid of it and retaining hearing is secondary. It could be that with follow up procedures in mind your doctor cut out less tissue that way increasing reoccurance chances, but minimising the damage to your hearing.

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    • Posted

      Thank you for your response! That makes sense and I feel better about it. I think I just got myself paranoid while googling late into the night. Yes, that would be a risk that may not be the smartest to take, especially considering I was on a music school while diagnosed. Thank you for the information and take care.
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  • Posted

    Hopefully all gets sorted for you. I did the same as you Googled lots got very worried before op I asked loads of questions on here which did help. I had my op 6weeks ago 4 hour operation hearing not back yet but been told by doctor has to heal very inflamed. Been seeing doctor every 3 weeks to remove and put new packing in. Last consultation he said should get hearing back about 6weeks from now so hopefully good news. I will have you go back in 12 months as well one I seen doctor for last time in January think this normal follow up for people who have had this operation check not come back.
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    • Posted

      Thank you, I believe it will all be okay. smile Oh wow, which ear did they operate on? That's scary not having your hearing in a whole ear for that long. It's hard to realize how thankful to be until something is lost. I hope you regain it soon! That must have been an intense surgery. Do you have a lot of pain? I didn't have much pain after my surgery, except for once when my friend hugged hugged me and we knocked heads on that ear. What kind of procedure did they do?
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    • Posted

      They operated on right cut around ear skin graft on eardrum apparently skin was growing upwards and had gone right around eardrum. They scrapped disease away as well. Surgeon said 6 weeks should get hearing back so hopefully fingers crossed. Didn't have much pain no. Surgeon who did op is leaving my hospital very gutted he very good 95% operations a success so if disease comes back will be travelling to see him but hopefully it won't. Have a good Christmas
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  • Posted

    Hi Taylor -

    In a perfect scenario one would only have enough surgeries to make sure that there is no more cholesteatoma ever again. :-)  Preferably one - of course - but many doctors advocate two planned surgeries (and in your case two for each ear).  What you were told is definitely not uncommon. What the second surgery will give you and your surgeon is peace of mind that it either wasn't there anymore - or if it was - they got it again before it can create any more "havoc" in your ear.

    I saw 11 otologists all over the US and even consulted by phone with doctors in Dubai, Canada and the UK - so I have a unique perspective of being able to be familiar with many different doctors' opinions and techniques first hand.  There are also doctors who try to do things 'single stage' whereby they have a technique that allows them to do everything in one surgery with different non-surgical methods of follow-up - and doctors where their "second look" can be a simple 'in-office' procedure, but again - the scenario you describe of two planned surgeries is one of the most common recommendations so please don't fret.  It sounds like you are in good hands. 

    Please keep in mind that everyone's cholesteatoma is different as well - and some are in different locations within the ear and are way more extensive than others. Some surgeons use the same methodology with cholesteatoma no matter what and others alter their techniques and recommendations for each case.

    I'm glad you're doing well after phase 1 - I'm confident phase 2 will go smoothly as well. Please keep us informed!

    J...

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    • Posted

      J,

      Thank you for your response! Wow, it sounds like you are well-informed. I appreciate your assurance. I believe Phase 2 should go well, and I appreciate your confidence. I have been experiencing a lot of congestion, plugged ears, and sickness.. So hopefully those are gone come surgery.yes, it is quite crazy just how different everyone's situation is. There is some common ground, but everyone has such unique situations as well. I hope all is going well with your ears. I will keep you all informed-thank you! Take care!

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