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Does anyone have a severe nerve deafness that has happened over the years?

Member Posts: 2 Join Date : 13 Mar 2013
I am struggling with a sever neurosensory hearing loss (I believe it is called). My digital hearing aids are fairly new. They are behind the ear but very sleek, and small. While they help a lot , they do not even come close to helping me perform in a way that I need to be successful in communicating and living. I am completely deaf to some peoples voices. I do not know how to respond to them when this happens, especially when they are my patient. When you tell someone very seriously that you are honestly hard of hearing when your are 24 and look 18, they don't believe you. When they do think your serious, they still do not know how to project their voice or speak more clearly. I need help finding a positive outlook on the situation. I do believe everything happens for a reason and all things make us stronger. I also feel like I am missing out on some really good technology and kind of torn between making peace with the way things are and searching for a little more help.I am no where in need of applying for disability. I am healthy, smart, and ready to do whatever it takes. Why does this sometimes feel like cancer? I am perfectly healthy trying to adapt to a world that is not expected to adapt to me.
Anyone feel me, or have any suggestions?

Posted on : 13 Mar @ 4:39am

Comments

  • Member Posts: 2 Join Date : 14 Mar 2013
    Sarah,

    What type of hearing instruments do you have? Also, what is the results of your last hearing test? Often, people make snap decisions to upgrade their instruments. While there is nothing wrong with upgrading, there is usually adjustments that can be made to your current instruments. Especially if they are pretty new (less that 5 years old). I would definitely recommend seeing what adjustments can be made. Also if you haven't had your hearing tested in the last year DO IT.. if you feel that the instruments aren't preforming to where they should be request another test. Believe it or not, due to the fact that we are all human test / retest reliability is +/- 10 db.. Which is huge! It is completely plausible that you had a bad hearing day, which resulted in a bad test, which resulted in poor programming.

    Feel free to ask any questions. I work with people with hearing loss and hearing aids every day. If there is anything I can do to help, I would be more than happy to.
    Posted on : 14 Mar @ 8:35pm
  • Member Posts: 4 Join Date : 22 Mar 2014
    "Sarah, I have had what you now have for 74 years. My hearing is now close to profound.

    The hearing aids can only improve on the amount of hearing you have left, they will not make your hearing anywhere close to normal.

    Have you tried to see if a Cochlear Implant is available to you. This would certainly be the time to get one, while you are still young, is your hearing loss is severe enough.

    As the message above indicates, have your hearing tested again & ask if you are a candidate for a Cochlear Implant.

    No matter how many times you tell people you are HOH, they will forget & turn away when talking or something of that nature. If something unheard involves your work - do go to the person who said it and ask for a repeat. Only u can decide which comments may or may not be important. Always watch a person's mouth when they are speaking - a little lipreading usually helps a lot. Learn to be upfront about your hearing loss. It's better to have people know you're hard of hearing rather than thinking you're stupid.

    Good luck to you. I know how hard it can be.
    Posted on : 27 Mar @ 11:55pm
  • Member Posts: 4 Join Date : 28 Mar 2014
    moltenled wrote:
    "Sarah, I have had what you now have for 74 years. My hearing is now close to profound.

    The hearing aids can only improve on the amount of hearing you have left, they will not make your hearing anywhere close to normal.

    Have you tried to see if a Cochlear Implant is available to you. This would certainly be the time to get one, while you are still young, is your hearing loss is severe enough.

    As the message above indicates, have your hearing tested again & ask if you are a candidate for a Cochlear Implant.

    No matter how many times you tell people you are HOH, they will forget & turn away when talking or something of that nature. If something unheard involves your work - do go to the person who said it and ask for a repeat. Only u can decide which comments may or may not be important. Always watch a person's mouth when they are speaking - a little lipreading usually helps a lot. Learn to be upfront about your hearing loss. It's better to have people know you're hard of hearing rather than thinking you're stupid.

    Good luck to you. I know how hard it can be.

    i dont seem to have the same problems you all are facing. my left ear felt like it was full of water, but wasnt. five years later my right ear started doing the same thing. my ears are never the same from minute to minute. I was recently told i have Lyme Disease and when i went on antibiotics, the ear i couldnt hear out of came back. Im still new to this so dont know what the outcome will be yet. I wish you answers.
    Posted on : 28 Mar @ 3:41am
  • Member Posts: 4 Join Date : 28 Mar 2014
    moltenled wrote:
    "Sarah, I have had what you now have for 74 years. My hearing is now close to profound.

    The hearing aids can only improve on the amount of hearing you have left, they will not make your hearing anywhere close to normal.

    Have you tried to see if a Cochlear Implant is available to you. This would certainly be the time to get one, while you are still young, is your hearing loss is severe enough.

    As the message above indicates, have your hearing tested again & ask if you are a candidate for a Cochlear Implant.

    No matter how many times you tell people you are HOH, they will forget & turn away when talking or something of that nature. If something unheard involves your work - do go to the person who said it and ask for a repeat. Only u can decide which comments may or may not be important. Always watch a person's mouth when they are speaking - a little lipreading usually helps a lot. Learn to be upfront about your hearing loss. It's better to have people know you're hard of hearing rather than thinking you're stupid.

    Good luck to you. I know how hard it can be.

    i dont seem to have the same problems you all are facing. my left ear felt like it was full of water, but wasnt. five years later my right ear started doing the same thing. my ears are never the same from minute to minute. I was recently told i have Lyme Disease and when i went on antibiotics, the ear i couldnt hear out of came back. Im still new to this so dont know what the outcome will be yet. I wish you answers.
    Posted on : 28 Mar @ 3:41am
  • Member Posts: 4 Join Date : 28 Mar 2014
    moltenled wrote:
    "Sarah, I have had what you now have for 74 years. My hearing is now close to profound.

    The hearing aids can only improve on the amount of hearing you have left, they will not make your hearing anywhere close to normal.

    Have you tried to see if a Cochlear Implant is available to you. This would certainly be the time to get one, while you are still young, is your hearing loss is severe enough.

    As the message above indicates, have your hearing tested again & ask if you are a candidate for a Cochlear Implant.

    No matter how many times you tell people you are HOH, they will forget & turn away when talking or something of that nature. If something unheard involves your work - do go to the person who said it and ask for a repeat. Only u can decide which comments may or may not be important. Always watch a person's mouth when they are speaking - a little lipreading usually helps a lot. Learn to be upfront about your hearing loss. It's better to have people know you're hard of hearing rather than thinking you're stupid.

    Good luck to you. I know how hard it can be.

    i dont seem to have the same problems you all are facing. my left ear felt like it was full of water, but wasnt. five years later my right ear started doing the same thing. my ears are never the same from minute to minute. I was recently told i have Lyme Disease and when i went on antibiotics, the ear i couldnt hear out of came back. Im still new to this so dont know what the outcome will be yet. I wish you answers.
    Posted on : 28 Mar @ 3:41am
  • Member Posts: 4 Join Date : 28 Mar 2014
    moltenled wrote:
    "Sarah, I have had what you now have for 74 years. My hearing is now close to profound.

    The hearing aids can only improve on the amount of hearing you have left, they will not make your hearing anywhere close to normal.

    Have you tried to see if a Cochlear Implant is available to you. This would certainly be the time to get one, while you are still young, is your hearing loss is severe enough.

    As the message above indicates, have your hearing tested again & ask if you are a candidate for a Cochlear Implant.

    No matter how many times you tell people you are HOH, they will forget & turn away when talking or something of that nature. If something unheard involves your work - do go to the person who said it and ask for a repeat. Only u can decide which comments may or may not be important. Always watch a person's mouth when they are speaking - a little lipreading usually helps a lot. Learn to be upfront about your hearing loss. It's better to have people know you're hard of hearing rather than thinking you're stupid.

    Good luck to you. I know how hard it can be.

    i dont seem to have the same problems you all are facing. my left ear felt like it was full of water, but wasnt. five years later my right ear started doing the same thing. my ears are never the same from minute to minute. I was recently told i have Lyme Disease and when i went on antibiotics, the ear i couldnt hear out of came back. Im still new to this so dont know what the outcome will be yet. I wish you answers.
    Posted on : 28 Mar @ 3:41am
  • Member Posts: 12 Join Date : 04 Nov 2017
    edited November 2017
    Hi Sarah! Thanks for sharing your story. There can be awkward times if you rely on lipreading or guessing what people are saying and they ask you a question but respond with a way off-topic answer, so they become confused or awkward. My father is deaf so I grew up seeing some people's reactions when he misunderstands what they said after lipreading (only 30% accurate). You asked for technology recommendations, and a product my dad and I worked on might be helpful to you! We created an iPhone app that converts voice-to-text at 95% accuracy and my dad doesn't have to rely on lipreading anymore. I've noticed that when my dad has the app out, people are actually very accommodating because they can immediately see the value - it was hard for him to explain that lipreading is only 30% accurate with people he is used to talking with. Here's the link to the app if you're interested: link
    Posted on : 04 Nov @ 4:28am
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