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  • Otosclerosis

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    Old 09-01-2016, 10:10 AM   #1
    cja6335
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    Otosclerosis

    I am 34 years old have been diagnosed with Otosclerosis. I lost my hearing in my right ear only apx. 2 months ago rather suddenly which is why this diagnosis is so odd. I have been to 2 different ENT's. The first diagnosed me with a dead ear and just said the hearing will never come back. He did a full MRI and everything came back clear. I went to a second ENT or did additional testing and discovered I did have some hearing in my right ear so it was not dead but rather a conductive hearing loss. This doctor sent me for a CT Scan and that came back clear as well. Therefore, his only diagnosis left is Otosclerosis. He is recommending that I just get fitted for a hearing aid and move on with my life. He feels there are significant risks with a stapedectomy and based on the fact that I have some hearing in the right ear and full hearing in the left, I should just go with the hearing aid. At my age, I would obviously prefer not to have a hearing aid and, if surgery will likely bring my hearing back, I would like to try it. I am wanting and willing to pay what I need to in order to have the very best ENT in the country evaluate me and advise me on surgery. I was wondering if anyone had recommendations for the best ENT and/or experience with the stapedectomy vs. hearing aid.

     
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    Old 12-31-2016, 07:21 PM   #2
    Msweisfort
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    Re: Otosclerosis

    Hello! have you figured out any additional info since this post? I am 38 and was diagnosed on 9/14/16 with Otosclerosis and my cat scan did show the disease was pretty advanced but I was told that is not the case for everyone with the disease.i elected to get the surgery and researched the top doctors in the U.S. and I'm in the East Coast and I found Dr. Matthew Stewart at John's Hopkins Hospital was 3rd ranked physician in the country for the surgery. I saw Dr. Stewart in November and loved him right away! I felt very confident in him, the hospital and the procedure! I had surgery on 12/19/16 in my left ear and the first week was rough recovery, lots of dizziness no pain. I'm now in 2nd week and things are much better but it's steal healing so I won't know how well this works until a few months go by. I. And say as soon as I woke up from surgery my hearing was significantly better to the point of tears. I didn't realize how bad my hearing was until that moment. I'm excited to see how well the procedure went and getting my right ear done. They may not do that for another year.
    Quote:
    Originally Posted by cja6335 View Post
    I am 34 years old have been diagnosed with Otosclerosis. I lost my hearing in my right ear only apx. 2 months ago rather suddenly which is why this diagnosis is so odd. I have been to 2 different ENT's. The first diagnosed me with a dead ear and just said the hearing will never come back. He did a full MRI and everything came back clear. I went to a second ENT or did additional testing and discovered I did have some hearing in my right ear so it was not dead but rather a conductive hearing loss. This doctor sent me for a CT Scan and that came back clear as well. Therefore, his only diagnosis left is Otosclerosis. He is recommending that I just get fitted for a hearing aid and move on with my life. He feels there are significant risks with a stapedectomy and based on the fact that I have some hearing in the right ear and full hearing in the left, I should just go with the hearing aid. At my age, I would obviously prefer not to have a hearing aid and, if surgery will likely bring my hearing back, I would like to try it. I am wanting and willing to pay what I need to in order to have the very best ENT in the country evaluate me and advise me on surgery. I was wondering if anyone had recommendations for the best ENT and/or experience with the stapedectomy vs. hearing aid.

     
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    Old 03-28-2017, 07:56 AM   #3
    Rickw262
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    Re: Otosclerosis

    How are things currently?

     
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    Old 03-28-2017, 08:30 AM   #4
    Msweisfort
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    Re: Otosclerosis

    Quote:
    Originally Posted by cja6335 View Post
    I am 34 years old have been diagnosed with Otosclerosis. I lost my hearing in my right ear only apx. 2 months ago rather suddenly which is why this diagnosis is so odd. I have been to 2 different ENT's. The first diagnosed me with a dead ear and just said the hearing will never come back. He did a full MRI and everything came back clear. I went to a second ENT or did additional testing and discovered I did have some hearing in my right ear so it was not dead but rather a conductive hearing loss. This doctor sent me for a CT Scan and that came back clear as well. Therefore, his only diagnosis left is Otosclerosis. He is recommending that I just get fitted for a hearing aid and move on with my life. He feels there are significant risks with a stapedectomy and based on the fact that I have some hearing in the right ear and full hearing in the left, I should just go with the hearing aid. At my age, I would obviously prefer not to have a hearing aid and, if surgery will likely bring my hearing back, I would like to try it. I am wanting and willing to pay what I need to in order to have the very best ENT in the country evaluate me and advise me on surgery. I was wondering if anyone had recommendations for the best ENT and/or experience with the stapedectomy vs. hearing aid.

     
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    Old 03-28-2017, 08:33 AM   #5
    Msweisfort
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    Re: Otosclerosis

    Good Morning where are you located? Number 3 ranked doctor and hospital for otosclerosis is Johns Hopkins Hospital in Baltimore MD. I had stapedectomy there 12/19/16 my hearing is restored in left ear!!

    Let me know if you have other questions, also University of Penn is highly ranked

    Michelle


    Quote:
    Originally Posted by cja6335 View Post
    I am 34 years old have been diagnosed with Otosclerosis. I lost my hearing in my right ear only apx. 2 months ago rather suddenly which is why this diagnosis is so odd. I have been to 2 different ENT's. The first diagnosed me with a dead ear and just said the hearing will never come back. He did a full MRI and everything came back clear. I went to a second ENT or did additional testing and discovered I did have some hearing in my right ear so it was not dead but rather a conductive hearing loss. This doctor sent me for a CT Scan and that came back clear as well. Therefore, his only diagnosis left is Otosclerosis. He is recommending that I just get fitted for a hearing aid and move on with my life. He feels there are significant risks with a stapedectomy and based on the fact that I have some hearing in the right ear and full hearing in the left, I should just go with the hearing aid. At my age, I would obviously prefer not to have a hearing aid and, if surgery will likely bring my hearing back, I would like to try it. I am wanting and willing to pay what I need to in order to have the very best ENT in the country evaluate me and advise me on surgery. I was wondering if anyone had recommendations for the best ENT and/or experience with the stapedectomy vs. hearing aid.

     
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    Old 05-30-2017, 03:58 PM   #6
    verdinada
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    Join Date: Nov 2010
    Location: Buenos Aires, Argentina
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    Re: Otosclerosis

    Hello - In Mar 2016 I had a stapedectomy on left ear with great success. After surgery, no dizziness, nothing. Two weeks later I was hearing great. The audiology test indicated moderate hearing loss and it was hurting my ability to communicate. After this operation, my right ear started going bad but not nearly as bad as the left. I went to the surgeon and they did a hearing test but it showed somewhat worse than before on the right but not nearly as bad as the left. The doctor recommended stape surgery. Because the first on the left ear went so well I figured what do I have to lose.

    I have never regretted anything so much in my life. Upon waking after the operation, I was very dizzy. I went home and experienced moderate dizziness but when getting in and out of bed I felt a thump in the operated area simultaneously accompanied by a intense wave of vertigo that lasted a second or so. This continued for three days. On the fourth night, I got out of bed and had the same occurrence but this time I noted somthing very different. I lost the hearing in the ear, tinnitus was intense and everytime I talked or cleared my throat my right side would vibrate and it made me dizzy. I contacted the doctor and it took him three days to tell me to come in. I drove 200 miles to the hospital (wife driving) and he said he needed to do the operation again because he said I likely had a granuloma. Imagine that. A 1% chance to get this and I got it. He told me he wanted to operate that night but I had eaten so I could not. He said it was extremely necessary to get this operation immediately or risk 100 hearing loss. He told me with this revision I had a 25% chance of getting my hearing or some of it back. I was terrified because I have a prosthesis in my left and if that goes bad I am a deaf mute. I had the operation on 26 May 17 and I am feeling somewhat better and I have hearing in my ear. But I am terrified that the granuloma will come back. He went back in and did a fiscia graft, used a different prsothesis, cleaned out the granuloma and closed me back up. Has anyone had any experience with this lousy luck?

    My biggest regret is having this operation when in reality I could have easily lived with my right ear the way it was and got a hearing aid when/if it got any worse. I am furious with the surgeon because in light of the state of hearing on the right ear should have caused him to advise me against it. I quesitoned him on this and I requested my medical records. He slipped in a statement in thei record saying that he recommended hearing aid over the surgery which is a LIE but I have no way of proving it. Neverthe less, water under the bridge. He is considered one of the best ear surgeons in Miami and I trusted his judgement.

    Does anyone know the success rate after revision surgery due to granuloma syndrome and what follow-on symptoms I could expect if this condition returns south?

    My advice to everyone. If you do not have a major hearing loss DO NOT get this surgery. It is not worth it. A hearing aid is much better than being deaf for life.
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