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

@julieo4

Thank you for that suggestion Colleen. I didn't know that could be done. Still not sure how to find the private message function, but will look for it. Julie

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I don’t know either

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@colleenyoung

No problem. It's explained in the Get Started on Connect guide here: https://connect.mayoclinic.org/get-started-on-connect/
Simply put, click a member's @username to go to their profile page. Then click "Send Private Message."

@bigmqama, you'll find many (very knowledgeable) HLAA members here on Mayo Clinic Connect. A couple of years ago, Hearing Loss Association of America (HLAA), the Ida Institute and Mayo Clinic collaborated to create this support group for the benefit of all.

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It seems like a terrific group. I have gotten a lot lot of valuable information. Thank you very much and Julie thanks very very much, let’s try to connect

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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?

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Hi! I have gotten behind in keeping up with email so sorry to be responding only now. My bilateral ANs appeared only much later in life but I went through a period of great fear of losing my hearing, like you. Thank heavens for HLAA with its information and support where I have been an active member in the NYC Chapter. It has been incredibly helpful for me and many others. I enthusiastically endorse any recommendations here for connecting with HLAA and note there are chapters in PA and Mass which you may want to connect with. I would urge you to google Katherine Bouton of HLAA and just scroll down to enjoy taking in all the helpful information about her and hearing loss. I think her email is posted there so you could email her as well. She has written 3 books on hearing loss which tend to be very readable and often with humor. I hope you can clarify what is meant when you you can't have a MRI because there is a "map" in your head.???

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@barbb

Hi! I have gotten behind in keeping up with email so sorry to be responding only now. My bilateral ANs appeared only much later in life but I went through a period of great fear of losing my hearing, like you. Thank heavens for HLAA with its information and support where I have been an active member in the NYC Chapter. It has been incredibly helpful for me and many others. I enthusiastically endorse any recommendations here for connecting with HLAA and note there are chapters in PA and Mass which you may want to connect with. I would urge you to google Katherine Bouton of HLAA and just scroll down to enjoy taking in all the helpful information about her and hearing loss. I think her email is posted there so you could email her as well. She has written 3 books on hearing loss which tend to be very readable and often with humor. I hope you can clarify what is meant when you you can't have a MRI because there is a "map" in your head.???

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I will read about her. Thank you. I think that the map is metal clips.

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@bigmqama

I will read about her. Thank you. I think that the map is metal clips.

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I bought one of Katherine boutons books. Thank you very much for telling me about her. Good book. I have a problem. I live with my sister. We are having trouble communicating. At times I will not hear something that she says and she really gets frustrated. I want to live with her. Sh3 wants me to ask my doctor for suupport. I have an appt with him in sept. She will not wait that long. Iam going to call tomorrow to get a phone app. To ask if he can help. I don’t really know what she means by support, I guess help. Any ideas. Anything would help. I am very upset. I would like things to work with her. I am not ready for an institution.

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@bigmqama

I bought one of Katherine boutons books. Thank you very much for telling me about her. Good book. I have a problem. I live with my sister. We are having trouble communicating. At times I will not hear something that she says and she really gets frustrated. I want to live with her. Sh3 wants me to ask my doctor for suupport. I have an appt with him in sept. She will not wait that long. Iam going to call tomorrow to get a phone app. To ask if he can help. I don’t really know what she means by support, I guess help. Any ideas. Anything would help. I am very upset. I would like things to work with her. I am not ready for an institution.

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You probably pretty much know what you need in order to be able to hear, but your sister doesn't. You have to educate her. First, you have to educate yourself. You both have to learn that she has to get your attention before she speaks to you. And, you have to see her face to understand her when she speaks to you. That alone can resolve a lot of issues. If the TV or any other audio device is on in the room where you want to communicate, it has to be turned down or off. Background noise is devastating to a person with hearing loss. You have to explain that to her.

If you watch TV together, work out an agreement…no talk when it's on unless whomever has the remote control mutes the TV. We all know that commercials are generally louder than regular programs, and it's during commercials when we try to talk. There is always going to be a problem with spontaneity. People are used to expecting an immediate response when they speak to someone.

Research into hearing loss behaviors shows that the average time it takes for a hard of hearing person to respond to a simple question is 5 seconds. That feels a lot longer to someone who is expecting a quick yes or no response. This is especially true when the person with hearing loss is not expecting a question. But, it also happens in the midst of conversations sometimes when we have to put several thoughts together to respond. This has nothing to do with intellect or cognitive decline. It's because it takes us a bit more time to process what we've heard, and we want to respond correctly.

Never try to communicate across barriers. If your sister is in one room and you are in another, you may hear her say something but you will not understand her. Just learn to NOT do that. Even something so simple as water running creates the barrier of background noise that distorts speech. It's always best for couples, friends or family members, to set aside a time and quiet space to sit down and talk. That takes some planning, but it sure helps.

Living well with hearing loss is a two way street. We have to understand that our hearing loss is a problem for others too. It's that spontaneity thing we are all so used to. We annoy them. If they understand what is going on with us it helps a lot. It helps even more if they know we are doing all we can to hear the best we can. I always tell people about the 3 F's related to hearing loss. Fear of not hearing or of making others upset…or of not being employable, etc. Frustration, not only ours but that of others and Fatigue. Fatigue is something that happens when you spend extra energy doing something you want to do…like concentrating on hearing. It's exhausting to concentrate for long periods of time. We get too tired to listen. That happens faster if we're trying to listen in a difficult environment. Research in education shows that children with hearing loss expend three times as much energy listening as kids with typical hearing do. That means that a single hour of listening for the HH child is like 3 hours for other kids. Big difference. Those who teach these children have to understand that. So do we as adults.

Many people I know have found comfort in participating in HLAA chapters where people can talk about these issues. It's amazing how much it helps to learn you are not alone with these issues. And, it's wonderful therapy for couples to get involved together. I hope there is an HLAA chapter in your area. If not, start one. http://www.hearingloss.org

Two of the most wonderful people I've met through my involvement in HLAA were sisters; one with hearing loss, the other with normal hearing. One was a widow, the other, who had the hearing loss, was a federal employee who worked for years in a foreign embassy. She had never married. They were both in their 70s when I met them. They had to learn coping strategies because they lived together. They shared a ton of information with others through the magazine HLAA produces. It was such a pleasure knowing them. Another perk of being involved in HLAA is meeting incredible people.

Liked by imallears, tonyinmi

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There is a way to bring back the hearing with auditory brainstem implant. Your doctor has to say about or whether it is useful for you. It is done for many children with brain tumour. I saw a post in bighumanbrain.com

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@adarsh

There is a way to bring back the hearing with auditory brainstem implant. Your doctor has to say about or whether it is useful for you. It is done for many children with brain tumour. I saw a post in bighumanbrain.com

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@adarsh, welcome to Mayo Clinic Connect. I noticed that you wished to post a URL to a web resource with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam.

Allow me to post the link you wished to share with the community:
– Auditory Brainstem Implant – Your Child a Candidate for Surgery? https://bighumanbrain.com/child-candidate-for-auditory-brainstem-implant-surgery

@adarsh, do you live with hearing loss or are you a parent of a child with hearing loss?

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@adarsh

There is a way to bring back the hearing with auditory brainstem implant. Your doctor has to say about or whether it is useful for you. It is done for many children with brain tumour. I saw a post in bighumanbrain.com

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Hat would be Wonderful! I will talk to my doctor. Thank youu!

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I just had a telephone appointment with my doctor. He told me about something round tha y ou wear around your neck that vibrates to remind you of something. Does anyone know what it is called? He also talked about deaf education. Any info.?

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@bigmqama

I just had a telephone appointment with my doctor. He told me about something round tha y ou wear around your neck that vibrates to remind you of something. Does anyone know what it is called? He also talked about deaf education. Any info.?

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Hi @bigmqama, We moved your post to the Losing hearing because of brain tumor discussion where you started your discussion so that the other members can offer some suggestions or help answer your questions. I'm not sure of the round device that you wear around your neck is but I did find some information that may explain different options that may be available to help.

Assistive Devices for People with Hearing, Voice, Speech, or Language Disorders:
https://www.nidcd.nih.gov/health/assistive-devices-people-hearing-voice-speech-or-language-disorders

You may also be interested in the discussions under the Hearing Loss group here:
https://connect.mayoclinic.org/group/hearing-loss/

Are you able to call your doctor back and ask more questions about the device he suggested or more about what type of deaf education he was referring to?

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@bigmqama

I just had a telephone appointment with my doctor. He told me about something round tha y ou wear around your neck that vibrates to remind you of something. Does anyone know what it is called? He also talked about deaf education. Any info.?

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@bigmqama, I don't know of a vibrating device that you wear around your neck but if you have a smartphone, you can set your phone to vibrate and set an alarm. You should do several tests to make sure it works as expected.
Tony in Michigan

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@bigmqama

I just had a telephone appointment with my doctor. He told me about something round tha y ou wear around your neck that vibrates to remind you of something. Does anyone know what it is called? He also talked about deaf education. Any info.?

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@bigmqama, a thought just occurred to me. Maybe your doctor was referring to the Ditto? It's a small vibrating device that comes with a wrist strap but could be placed around the neck somehow, I suppose. The Ditto requires a smartphone to set the alarms though.
Tony in Michigan

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@tonyinmi

@bigmqama, a thought just occurred to me. Maybe your doctor was referring to the Ditto? It's a small vibrating device that comes with a wrist strap but could be placed around the neck somehow, I suppose. The Ditto requires a smartphone to set the alarms though.
Tony in Michigan

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Thank you. I will check into it. 🙂

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@bigmqama

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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I was scheduled for radiation from an AN but canceled because of the virus. Does radiation cause hearing loss? I had sudden hearing loss a few years ago and went to the ER but it came back. My an was small and grew in a year and at my age radiation is my only option but no one said anything about side effects other then all it would do is try to stop the growth but not give my hearing back or help with vertigo.anyone had radiation?

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