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Canal wall up/down Cholesteatoma

Posted , 6 users are following.

stevem
stevem

I was diagnosed with Cholesteatoma 5 years ago. The diagnosis tooks so long, I lost hearing and balance in my left ear. The process was quite gruilling, the worst part spin attacks and vomiting which prompted a CT scan that led do diagnosis.

After three operations my Specialist (an outstanding one) managed to remove all traces of CToma.

I was left with the canal wall up hoping my life would be (almost) back to normal (and has been for the last two years).

Unfortunately I have been told the cartilage above the ear drum has collapsed and it looks ominous I will have yet another operation, but this time be left with the canal wall down.

My question is; Has anyone else been left with the canal wall down and what are their experiences of getting life back to normal. Is the ear left unsightly?

Also, I take my daughter swimming occasionaly, will I still be able to as I will probably have to keep my ear dry all the time?

My sympathies are with all others on this site.

SteveM (38 years).

0 likes, 5 replies

5 Replies

  • bbreezy
    bbreezy stevem

    Posted

    I had the ear canal wall down surgery years ago. I believe i was 14. Im 25 now. I was advised to keep my ear dry to prevent further possible infections. Due to that, i cant swim, i have to be very careful while showering, washing hair ect. Its all minor things really. My ear hole looks funny (bigger then normal) but noone seems to notice unless i bring it up. Good luck!
  • Hope6767
    Hope6767 stevem

    Posted

    My has this done on left ear but not because of this reason. She has recurrenting cholesteatoma in both ears and the dr did it purposely to avoid so much surgury. I dont want to lie to you, it is not the prettiest of things. It looks like the biggest ear canal ever. It it like 4x the size of a normal ear canal opening. She has no problems specificly with the wall canal down. But she is also female with long hair which covers it up. Unfortunaly she cant swim because the dr worry that the disease worsen with it.
  • guest1
    guest1 stevem

    Posted

    bbreezy & Hope6767, thank you for your replies they are really appreciated.

    I actually went for a mastoid obliteration in the end which I had done almost two years ago.  My specialist recommended it as the hearing had already gone in the affected ear and I would be able to go swimming and not worry about keeping my ear dry any more.

    The process involved removing parts of my inner ear and replacing it with tummy fat and sealing my ear canal & eustachian tube.  Was given the option of an anchor hearing aid to conduct sounds to my good ear which I am considering as I've recently taken up teaching and it's a pain trying to hear my students when I'm looking in the wrong direction.

    Thanks again & best of luck to you both!

    (stevem - using a different login account) 

  • JENniferWright2
    JENniferWright2 stevem

    Posted

    I had the radical Mastoidectomy with canal wall down.. I am doing ok with it 4 years later, but I have had serious issues with my ear rejecting the tube, there is some pain and not all the symptoms go away. However, it has been talked about that the canal wall down is less risky then the canal wall up. You do have to continue visits annually for cleaning and if you have to have a tube *which is a great step to take if your eustation tube doesn't drain properly* do not try to touch it even if you are itchy use a little warm baby oil instead. It is definitely a process and there is a healing period that is less than desirable, but well worth it. Also.. it is a lot easier to keep an eye on it to watch for any signs of cholesteatoma trying to come back. I'm not a fan of windy days or weather changes, but otherwise leading a much better life with lot less infections.
  • carol02333
    carol02333 stevem

    Posted

    My now 11 year old had a radical mastoidectomy cwd. We are 10 months post op, and his ear looks fine. The hole is quite a bit larger, but it's nothing disfiguring.

    We live in FL, about 30 minutes from the Gulf of Mexico, so summer kind of sucks for him. We've been advised that he should not swim. When he showers, we put a cotton ball covered in Vaseline into the ear to keep the water out.

    My husband has had 3 ctoma surgeries. If there's any chance of him getting his ear wet, he uses silicon earplugs.

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