Cholesteatoma surgery type decision

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MY 14-year old son (who has special needs) has to have cholesteatoma surgery removal once again. Over the last 3 years, he's already had the surgery twice before. This will be our third attempt to get rid of this very annoying, very scary problem. Here's the question...what type of surgery do we go with? Our doctor has proposed the modified radical as an option to consider. He told us its our decision to do the same surgery we've done 2 times before or try this. So, I've been doing research and the result of that is that I'm more scared and more confused than ever. I've read about smells, and never able to get wet, and granulation tissue, and constant drainage...none of which sound good at all. But, how many time can I continue to put my poor son through this surgery only to have it recur? I would love to hear your thoughts, personal experiences, and advice. (Central Florida, USA)

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  • Posted

    I had the surgery when i was 10. Sure i have to wear earplugs forever, but im 38, and its been gone for 28 years with no reoccerance. It smells when there is drainage because your ear will not produce wax, and instead a smelly discharge. the way to combat this is to put ear drops in every night, 80% isoporic alcohol mixed with a tablespoon of boric acid in the bottle. Also, our disease stems from eustachian tube disfunction which is ran through our nose. So he'll have to use flonase every morning. Then there should be no smell and no reoccurance

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    • Posted

      Thank you Rob for your support and experience. Have you ever had any problems with granulation tissue? Also, if you don't mind me asking, what is the appearance of your ear canal and does your hearing aid (if you wear one ... my son does) fit? Thank you.

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  • Posted

    Hi I am so very sorry to learn about you son's problems., I know how incredible worrying this is. My son also had a cholesteatoma removed. This was 3 years ago at the Gloucester Hospital and the surgeon used a laser to remove the cholesteatoma and so far there seems to be NO regrowth. He has lost some hearing in that ear but has no discharge.. The operation was done on the NHS .Hope this information might be of some help.

    I wash you and your son all the very best.

    Dawn

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    • Posted

      I am not sure . They took away one of the hearing bones. A year later he went for the second look surgery at which time a titanium in- plant was also placed. Sadly the in-plant has done nothing to improve his hearing . Thankfully though the cholesteatoma had not returned .

      We live in Kent but I chose Gloucester NET as they used laser surgery which is reported as being good when removing cholesteatomas.

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  • Posted

    Hi Angela,

    My 9 year old daughter had the very same thing. She was diagnosed with a cholesteatoma and had a total of 3 surgeries. Her last one was this past May 1st. Her surgeries were every 6 months. It was a surprise to the dr and all of us that there was not much there the last time and the dr felt confident he removed it all. It has done a lot of damage. She had several bones removed, lost most of hearing and all bones and support around facial nerve had to be removed. It is a relief when it is finally over. We did not do anything different in her surgeries but the last one was ten times better than the previous ones. It is scary. It will end soon....I will pray for your child.

    Cindy

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    • Posted

      Thank you Cindy for your prayers. I am so happy for your daughter and you to finally be rid of this. I'm curious, did your surgeon ask you to consider the modified radical (canal wall down)? If so, how did you come to the decision to go with the same surgery you'd tried twice before?

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    • Posted

      Our surgeon did not tell us about that surgery. He thought after the first surgery that he removed it all. The second surgery was supposed to re-check then try a prosthesis to try and get her some hearing. When he went in, he found it was still there and directly wrapped around the facial nerve since the bones and support were removed at the 1st surgery. It was very disappointing. He only wanted to wait 6 months until the 3rd surgery so that it could not have much time to grow. He explained that we keep going in every 6 months till confident its completely gone. We researched different surgeries on our own but felt good with him. We do know another family that went with a different dr for their child that handled it differently and they were not as pleased. It was a lot every 6 months but he suggested that time frame for success.

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    • Posted

      Thank you. It's been almost 2 years since our son's last surgery. That's interesting with the 6 month approach...not giving it as much time to grow. Certainly gives me something to discuss with the doctor.

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  • Posted

    Not a fun spot to be in! Those decisions can be difficult to make!

    My husband dealt with cholesteatoma as a child, and then after intensive surgery 3yr in a row he was free for 10yr. Due to his eustachian tubes not functioning properly, the cholesteatoma was able to re-develop. The Dr performed a (canal wall down) and now a year and a half later my husband is doing great. He doesn't deal with any drainage, and his ear has healed very well. So far no granular tissue has developed. He does have hearing loss, but mostly from the extensive damage his ear suffered from the disease as a child. His doctor allows him to have prescription ear drops on hand, so if he has any type of cold or flu he can put drops in to ward off any infection. And he does get them cleaned by a specialist every 6 mo. Dr. is hoping to eventually only need cleanings every 9-12 mo., but each person's ear needs are different.

    I think the biggest thing with the canal wall down surgery for my husband is now they can tell if the cholesteatoma is growing back. He was disappointed that it needed to be done that way. But now he doesn't need to dread the big surgery like before. His Dr can remove any granular tissue/re-growth in the office.

    My husband loves to swim, so he got a custom fitted ear plug. He really likes it, it fits comfortably and even stays put in rough water (like at the ocean) it's great!

    Hopefully this helps! And we will be thinking of you and your son!

    (Eastern Pennsylvania, USA)

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    • Posted

      Hi Courtney, Thank you so much for all of the information and your kind words. You've given me more to consider and think about. It's nice to hear from you and all of the others who have replied. Real people living with the same situation is a lot different than just reading articles. Thank you.

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  • Posted

    Hi Angela,

    I reallly do sympathise with you and your son.

    I am 28 years old and had a mastoidectomy 4 times then went on to have a radical modified mastoidectomy (twice) as has been advised for your son. I ended up having a mastoid obliteration after numerous attempts at trying to get rid of my pesky cholesteatoma!!

    My personal opinion would be to weigh up your/his options and maybe discuss a mastoid obliteration with your doctor. It should (emphasis on should) irradicate the need for further surgeries and trauma for your son. His hearing would be affected but you/he won't need to worry about getting his ear wet etc. I am a nurse and function well on one hearing ear and no longer worry about smells and leakages!!!

    I was sceptical but after 12 cholesteatoma surgeries I had had enough. It seems like a drastic option but it was the best thing I ever did!

    Good luck with the decision! Let us know how you get on.

    Kathryn x

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    • Posted

      Hi Kathryn,

      Thank you for your input and advice. I'm glad to hear you finally have beaten your cholesteatoma. I'm sorry it took 12 surgeries to finally do it though. We're only on 3 and I hate it. Can the mastoid obliteration you're talking about be done with a canal wall up?

      Thanks.

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    • Posted

      Hi Angela,

      So, the idea of a mastoid obliteration is that everything from the canal to the mastoid cavity gets filled in with fat normally taken from the belly which means you no longer have a functioning ear. My ear canal wall remained up but was so scarred from previous surgeries it was extremely narrow (they'd tried over the years to open it up to airate which never helped). I am pretty sure they can do a partial obliteration where they keep the canal intact so the ear still looks normal but that would depend on the doctor.

      Another option could be laser treatment as its much less invasive and has high success rates in getting rid of recurring chloesteatoma. Maybe one to explore as obliteration is very final and cannot be reversed.

      Kathryn x

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