Losing hearing because of brain tumor

Posted by bigmqama @bigmqama, Apr 9 2:51pm

I had a brain tumer when I was a child. I am now 57. Because of the tumer I have nerve damage and over the years have been slowly losing my hearing. Does anyone know how I can be ready for someday being deaf? I don’t know sign language and am not able to get a cochlear implant. What do I do if one day I wake up deaf?

Liked by Leonard

@bigmqama
Good afternoon,
do you know what percentage of your hearing you have lost or how quickly over the years you have been losing it or has anybody been tracking that? Do you know what percentage hearing you have remaining in your your right ear versus your left? What’s your doctors opinion of totally losing your hearing?
I am assuming hearing aids aren’t an option.
Jake

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Hello @bigmqama and welcome to Mayo Connect

I'm sorry to hear of your concerns about total deafness, that must be frightening for you. Have you discussed this possibility with your doctor? If not, please do so.

Like @jakedduck1 posted, it is important to know much of your hearing has been lost and over how long of a time period. Do you have copies of your previous hearing tests done by an audiologist?

I would encourage you to talk with an ENT specialist or perhaps a neurologist. Will you do that?

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Hi @bigmqama, welcome to Mayo Clinic Connect. You'll notice that I moved your question to the Brain Tumor group and the Hearing Loss group. Here you will meet several members who are living with gradual and some with sudden hearing loss, like @kayjaylauren @joangela @imallears @mikepa @nurseheadakes @maryjax and others, who can help you understand what you can expect and how to prepare for hearing loss.

I agree with @jakedduck1 and @hopeful33250 that you should talk about your hearing loss with a specialist. Have you been to an audiologist?

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@bigmqama I agree you should see a specialist, but would want to know additional info. Were you told what type of tumor it was, maybe an acoustic neuroma (AN)? My wife woke up deaf in one ear 3 years ago and was diagnosed with an AN, but she acted quickly and steroids helped it relieve pressure on her hearing nerve and her hearing came back. Her AN tumor was small and the specialist told her they grow slowly. But we have to watch it to make sure it doesn't start pressing on the hearing nerve again or the brain stem. She went to an otolaryngologist at Jefferson in Philly. I would think you would need a current MRI if you haven't had one in awhile.

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There are several unknowns in your story. Needless to say, hearing loss is challenging to deal with. I'm happy for you that the tumor you experienced years ago was taken care of. I wonder why you do not qualify for a cochlear implant? I was told decades ago that hearing aids would not help me. I trusted that advice and didn't seek help. A decade later when I was desperate about the progressive bilateral hearing loss that was consuming my life, I had further testing done and was encouraged to try hearing aids. I did, and they helped. Not perfect, but they helped. A couple more decades passed and the hearing aids were not doing what they had done, so I graduated to a cochlear implant. It has been miraculous, and works in tandem with the hearing aid I use in the other ear. Not perfect, but wow! Not sure where I'd be without my bionic ears! Like others, I encourage you to seek further help. Go to a reputable cochlear implant center for testing. You definitely want to do all you can, while you can. You may be surprised at your options.

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@bigmqama
Hi,
Please heed the advice here and of @julieo4 . Don't worry about sign language at this point. You will need lessons and have to be around other people who sign in order to perfect and practice. So that's the last thing to worry about at this stage. And don't wait any longer to pursue the options.

FL Mary

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@jakedduck1

@bigmqama
Good afternoon,
do you know what percentage of your hearing you have lost or how quickly over the years you have been losing it or has anybody been tracking that? Do you know what percentage hearing you have remaining in your your right ear versus your left? What’s your doctors opinion of totally losing your hearing?
I am assuming hearing aids aren’t an option.
Jake

Jump to this post

Hi thanks for answering. The nerve damage that is cauaing the problem with my hearing is from the radiation that I had. Yes I spoke to my doctor but I will talk with him more because I need help and support that is why I am here. He doesn’t know what to do next.
I have some of my hearing tests I will find them. The test from last year was the worst. That was in Oct. and the doctor said that if it continues at that rate I can be deaf by this Oct. I have lost 45 percent hearing in my left ear and am consitered deaf in the riight. I wear 2 hearing aids a signia I have been losing hearing since I was about ten. Tumors were at ages 3 and 7. My hearing has gotten worse with age. My doctor is with the department of Otolaryngoloy a division of ontology and neurotoology at Mass eye and ear. I just saw a neroncologist who lust said that it will get worse.

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@colleenyoung

Hi @bigmqama, welcome to Mayo Clinic Connect. You'll notice that I moved your question to the Brain Tumor group and the Hearing Loss group. Here you will meet several members who are living with gradual and some with sudden hearing loss, like @kayjaylauren @joangela @imallears @mikepa @nurseheadakes @maryjax and others, who can help you understand what you can expect and how to prepare for hearing loss.

I agree with @jakedduck1 and @hopeful33250 that you should talk about your hearing loss with a specialist. Have you been to an audiologist?

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I see an audiologist every year before I see the doctor. Is he who I should discuss this with and not the doctor?

Liked by Leonard

REPLY
@mikepa

@bigmqama I agree you should see a specialist, but would want to know additional info. Were you told what type of tumor it was, maybe an acoustic neuroma (AN)? My wife woke up deaf in one ear 3 years ago and was diagnosed with an AN, but she acted quickly and steroids helped it relieve pressure on her hearing nerve and her hearing came back. Her AN tumor was small and the specialist told her they grow slowly. But we have to watch it to make sure it doesn't start pressing on the hearing nerve again or the brain stem. She went to an otolaryngologist at Jefferson in Philly. I would think you would need a current MRI if you haven't had one in awhile.

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I had an Astro ssytoma ans had a ct scan in March.

Liked by Leonard

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@bigmqama

I had an Astro ssytoma ans had a ct scan in March.

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Everyone's situation is unique to them. Sometimes doctors tell patients that nothing can be done to help sensorineural hearing loss.That isn't always true. None of us on this discussion group are physicians or audiologists. We share some very different experiences. Those of us who have had cochlear implants had to have an MRI prior to becoming a candidate for surgery. While a CT scan will tell a lot, An MRI is more diagnostic. It seems that your auditory nerve has some degree of function or you would not be able to hear at all. It also sounds like your hearing is not the same in both ears. Before accepting a dire diagnosis on any health issue, it seems wise to seek a second opinion. Another question: Is your audiologist sharing any information about speech to text apps that might help you? There's a lot of amazing technologies available. We all deserve to be told about them. Far too many people who sell hearing aids don't share that information.

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@julieo4

Everyone's situation is unique to them. Sometimes doctors tell patients that nothing can be done to help sensorineural hearing loss.That isn't always true. None of us on this discussion group are physicians or audiologists. We share some very different experiences. Those of us who have had cochlear implants had to have an MRI prior to becoming a candidate for surgery. While a CT scan will tell a lot, An MRI is more diagnostic. It seems that your auditory nerve has some degree of function or you would not be able to hear at all. It also sounds like your hearing is not the same in both ears. Before accepting a dire diagnosis on any health issue, it seems wise to seek a second opinion. Another question: Is your audiologist sharing any information about speech to text apps that might help you? There's a lot of amazing technologies available. We all deserve to be told about them. Far too many people who sell hearing aids don't share that information.

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Funny that you say that. My doctor said that nothing can be done. That is depressing. I can not have an mri because there is a map in my head from the surgery. Boy, I am so glad that you answered you seem very knowledgable. I have not gotten any help. Now that I know who to ask, I will ask for sure. Thank you! I live in pa and bought my hearing aid in pa and have not gotten info. My doctor in Boston last yr said that they could recamend an aid but I Had just gotton a new One so he dropped the subject? .this yr I am Going to ask what they think. Have you ever heard of an app called Ava? It was developed at mass eye and ear. No one told me about it but I started to get their news letter and read about it. It Basicly Is you or the speaker talks and it types. Is that what you mean?

Liked by Leonard

REPLY

I hear you and I feel your frustration and your fear. I'm wondering if the doctors or hearing aid fitters (audiologist I assume), have shared any information with you about hearing assistive technology that goes beyond hearing aids? How to use the telecoils in your hearing aids with unique technologies, like hearing loops, etc. ? I managed for years with failing hearing because I used every bit of technology I could get my hands on. Who told me about this and how to use it; how to get it? Not the doctors or the hearing healthcare pros. I learned nearly everything I know from other people like me. I learned how many of us there are and that I was not alone. That helped more than I can say. How did I meet those people? Through the organization called The Hearing Loss Association of America. (HLAA). It was called Self Help for Hard of Hearing People, Inc. (SHHH) then, founded in 1979. It's still the same organization but the new name makes it easier to find online, thus the name change in 2006.

I started a chapter in my home town 35 years ago. By so doing I came out of my personal hearing loss hiding place and went public so I could meet those other people who were all hiding just as I was. We were all amazed how much it helped to share our experiences. Together we learned, we educated and we advocated once we knew what to advocate for. There are chapters of HLAA in Pennsylvania. I hope there is one near you. Maybe you've been told about HLAA from the medical professionals you have seen. Maybe not. You can get a lot of information on the HLAA website. http://www.hearingloss.org

I would be happy to communicate with you personally, but I cannot provide my e-mail address on this site. If you go to http://www.hlaawi.org you will find the newsletter I edit and can track me down. Yes, AVA is one of the apps that convert speech to text. There are several of them. Live transcribe is one of the favorites, but is only available on android phones. There are others. These technologies are emerging because the people who have been members of SHHH/HLAA have pushed for them. Prior to SHHH/HLAA, hard of hearing people didn't even have an identity.

You can live well with hearing loss, but you have to learn how. While sign language is a solution for a handful of people, few people who lose hearing as adults use it. Why? Because they live, work and socialize in the hearing world and want to remain in it. Something can be done to help you, but you have to find that help. You know, even if you were to become totally deaf, you would still be able to communicate with those speech to text apps. Meetings and lectures can also be captioned. You can remain in the hearing mainstream with technology if you know how to access it and use it. I wish you well.

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@julieo4

I hear you and I feel your frustration and your fear. I'm wondering if the doctors or hearing aid fitters (audiologist I assume), have shared any information with you about hearing assistive technology that goes beyond hearing aids? How to use the telecoils in your hearing aids with unique technologies, like hearing loops, etc. ? I managed for years with failing hearing because I used every bit of technology I could get my hands on. Who told me about this and how to use it; how to get it? Not the doctors or the hearing healthcare pros. I learned nearly everything I know from other people like me. I learned how many of us there are and that I was not alone. That helped more than I can say. How did I meet those people? Through the organization called The Hearing Loss Association of America. (HLAA). It was called Self Help for Hard of Hearing People, Inc. (SHHH) then, founded in 1979. It's still the same organization but the new name makes it easier to find online, thus the name change in 2006.

I started a chapter in my home town 35 years ago. By so doing I came out of my personal hearing loss hiding place and went public so I could meet those other people who were all hiding just as I was. We were all amazed how much it helped to share our experiences. Together we learned, we educated and we advocated once we knew what to advocate for. There are chapters of HLAA in Pennsylvania. I hope there is one near you. Maybe you've been told about HLAA from the medical professionals you have seen. Maybe not. You can get a lot of information on the HLAA website. http://www.hearingloss.org

I would be happy to communicate with you personally, but I cannot provide my e-mail address on this site. If you go to http://www.hlaawi.org you will find the newsletter I edit and can track me down. Yes, AVA is one of the apps that convert speech to text. There are several of them. Live transcribe is one of the favorites, but is only available on android phones. There are others. These technologies are emerging because the people who have been members of SHHH/HLAA have pushed for them. Prior to SHHH/HLAA, hard of hearing people didn't even have an identity.

You can live well with hearing loss, but you have to learn how. While sign language is a solution for a handful of people, few people who lose hearing as adults use it. Why? Because they live, work and socialize in the hearing world and want to remain in it. Something can be done to help you, but you have to find that help. You know, even if you were to become totally deaf, you would still be able to communicate with those speech to text apps. Meetings and lectures can also be captioned. You can remain in the hearing mainstream with technology if you know how to access it and use it. I wish you well.

Jump to this post

@julieo4
Hi,
I’ve been a member of HHLA for years and go to a local chapter’s monthly meetings. It’s an invaluable resource. I couldn’t have said it better about reaching out to these organizations and participating in online forums like the SayWhat club and also researching on your own. The only assisted devices the audiologists or hearing aid dispensers know about are the proprietary ones that come with the hearing aids or CIs. It is up to the individual who usually does not know where to start. That’s why I constantly talk to others who wear hearing aids about what is available.

I have an Audi who is so interested in what I know and passes it along to her patients….my ENT doctor wears hearing aids and I have showed him a few apps he can use on his phone. They are rare among the providers.
Kudos to you for starting a chapter so long ago. It’s not easy to start and run one.

Being pro active depends on the type of individual you are and we have to get out of our comfort zone and push for things. It’s gets easier to do so and makes you feel more powerful and on control.

FL Mary

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@bigmqama

Funny that you say that. My doctor said that nothing can be done. That is depressing. I can not have an mri because there is a map in my head from the surgery. Boy, I am so glad that you answered you seem very knowledgable. I have not gotten any help. Now that I know who to ask, I will ask for sure. Thank you! I live in pa and bought my hearing aid in pa and have not gotten info. My doctor in Boston last yr said that they could recamend an aid but I Had just gotton a new One so he dropped the subject? .this yr I am Going to ask what they think. Have you ever heard of an app called Ava? It was developed at mass eye and ear. No one told me about it but I started to get their news letter and read about it. It Basicly Is you or the speaker talks and it types. Is that what you mean?

Jump to this post

@julieo4
Hi,

I have tried AVA but didn’t care for it. Other speakers have to have it loaded onto their phone. There is an app for android phones called live transcribe and it’s free. If you have an iPhone or an android there’s another app called OTTER . Google the place store on your phone and browse through what they have. TextHear is another I have loaded when LiveTransctibe fails me (it’s WiFi dependent).
I use Live Transcribe on my Samsung all the time especially now with people wearing masks. I also use Innocaption+ for phone calls on my cell phone that allow me to hear and read what the caller is saying and has visual voice mail. I have a Captel phone for my landline .
We need a landline here because of the fax machine.

If you research and come across any apps you like or have questions please ask away. Some people have better experiences with these apps than others and I think it depends on how good the mic is on a particular phone. Don’t pay for any as there are too many free ones available.

FL Mary

REPLY
@julieo4

I hear you and I feel your frustration and your fear. I'm wondering if the doctors or hearing aid fitters (audiologist I assume), have shared any information with you about hearing assistive technology that goes beyond hearing aids? How to use the telecoils in your hearing aids with unique technologies, like hearing loops, etc. ? I managed for years with failing hearing because I used every bit of technology I could get my hands on. Who told me about this and how to use it; how to get it? Not the doctors or the hearing healthcare pros. I learned nearly everything I know from other people like me. I learned how many of us there are and that I was not alone. That helped more than I can say. How did I meet those people? Through the organization called The Hearing Loss Association of America. (HLAA). It was called Self Help for Hard of Hearing People, Inc. (SHHH) then, founded in 1979. It's still the same organization but the new name makes it easier to find online, thus the name change in 2006.

I started a chapter in my home town 35 years ago. By so doing I came out of my personal hearing loss hiding place and went public so I could meet those other people who were all hiding just as I was. We were all amazed how much it helped to share our experiences. Together we learned, we educated and we advocated once we knew what to advocate for. There are chapters of HLAA in Pennsylvania. I hope there is one near you. Maybe you've been told about HLAA from the medical professionals you have seen. Maybe not. You can get a lot of information on the HLAA website. http://www.hearingloss.org

I would be happy to communicate with you personally, but I cannot provide my e-mail address on this site. If you go to http://www.hlaawi.org you will find the newsletter I edit and can track me down. Yes, AVA is one of the apps that convert speech to text. There are several of them. Live transcribe is one of the favorites, but is only available on android phones. There are others. These technologies are emerging because the people who have been members of SHHH/HLAA have pushed for them. Prior to SHHH/HLAA, hard of hearing people didn't even have an identity.

You can live well with hearing loss, but you have to learn how. While sign language is a solution for a handful of people, few people who lose hearing as adults use it. Why? Because they live, work and socialize in the hearing world and want to remain in it. Something can be done to help you, but you have to find that help. You know, even if you were to become totally deaf, you would still be able to communicate with those speech to text apps. Meetings and lectures can also be captioned. You can remain in the hearing mainstream with technology if you know how to access it and use it. I wish you well.

Jump to this post

I have not gotten any help from anyone but I will ask. I Iive in a very royal area. That is why I
Relay on the Internet. I also do not drive. Which makes it worse. I Have been to the associations web site but just found it and need to study it. Do they have any online help?

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