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Reconstructive surgery.

Posted , 3 users are following.

emma98563
emma98563

Hi all

Throughout 2008/9 I experienced chronic and recurrent ear infections/dizziness and ear ache in my left ear. It took 2 years until I was referred to a specialist and a further 4 appointments at a specialist to finally identify and diagnose my cholesteatoma. In 2010 I had my first surgery, and a second in 2011.

Why I am writing is because back when I first learned about cholestetomas, there was not much on the internet about them. I've subsequently found forums like this, and it's great to see others who share similar frustrations regarding the lack of research/delayed diagnosis of cholesteatoma's. It's also just nice to read about other peoples experiences knowing that you are not alone, thank you all for sharing.

FInally I was wondering if anybody else has experienced serious discomfort with hearing aids. I ditched mine like, 4 years ago after wearing it for a few months, because it was too sore to wear (due to my now abnormal shaped ear canal after cholesteatoma removal). Also I have to see my ENT a few times a year to suction clear my ear because it can't clear itself.

Has anybody had a reconstructive surgery post cholsteatoma removal to fix ear canals/ hearing bones etc.?  Is it worth it? Does it work? Recovery time etc. 

All feedback greatly appreciated. 

0 likes, 4 replies

4 Replies

  • statebryan
    statebryan emma98563

    Posted

    Hi emma98563,

    It's nice to hear from you as well. I've had an Ossiculoplasty with prosthesis in my right ear after 3 tympanoplasties and 3 radical mastoidectomies in that ear to remove the cholesteatoma.

    Recovery time was about the same. Hearing is about 25%-35%. Anything outside a specific range of frequency becomes distorted. This happens if it's too loud or if sound is on the ear drum for too long..,my brain won't know how to interpret the sound. I almost wish we hadn't done the reconstruction of the hearing bones due to the lack of thorough function.

    The additional symptoms and side effects I endure on a daily basis are difficult and prevent me from fully working or living life like I used to...frustrating for sure. I would be curious if anyone has had to change their job or lifestyle due to this annoying disease...

    Anyway, without taking up too much more time, are you up for some sort of reconstruction surgery?

    All the best,

    Bryan

  • statebryan
    statebryan emma98563

    Posted

    Oh and hearing aids have not been discussed in my situation due to pain in the outer ear / on the skull.

    Almost forgot, I go in 11/13/15 for surgery on my OTHER ear now. Bilateral cholesteatoma. fun times....

    B

  • Hope6767
    Hope6767 emma98563

    Posted

    Hey there. Yep you are not alone in this. My daughter has what is called a wall canal down on her left ear, and cannot wear a hearing aid on that side due to the abnormal large ear canal. Not that it would help because all the hearing bones are gone. She almost got the wall canal down on the right side which meant she wold have been out of hearing aids all together. She does complain the mold all rubbing the outside of canal while wearing the hearing aid. There is a device called a BAHA which you could try. The device is placed on your skull bones usually on the mastoid bone. My daughter usually wears one after ear surgery because the doctor will not let her wear her hearing aid for six weeks. The audiology depth will loan us this after surgery or someone device broke. It is usually on a soft headband with a 2 inch box on it, I say usually because once in awhile she gets the metal headband (think receptionist phone headset). If your ent doctor will let you try it, give it a shot. If you like the BAHA device itself (don't solely base it on the headband ) , the device is implanted into your skull similar to the cochlear implant. My daughter hated the loaner baha. But willing to do a demo of the newest version at the audiology depth with a representative from the BAHA company and she really loved it. The newest versions are really something and can be connected with Bluetooth tech and download music and phone calls into the BAHA device.
    • statebryan
      statebryan Hope6767

      Posted

      Thanks for the information. I will definitely check into the baha device.

      I am glad to hear things are going better for your daughter

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