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Losing hearing because of brain tumor

Posted by bigmqama @bigmqama, Apr 9, 2020

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?

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Mentor
John, Volunteer Mentor | @johnbishop | May 22, 2020
In reply to @bigmqama "I just had a telephone appointment with my doctor. He told me about something round tha..." + (show)
@bigmqama

<p>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.?</p>

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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?

REPLY
tonyinmi | @tonyinmi | May 22, 2020
In reply to @bigmqama "I just had a telephone appointment with my doctor. He told me about something round tha..." + (show)
@bigmqama

<p>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.?</p>

Jump to this post

@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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tonyinmi | @tonyinmi | May 22, 2020
In reply to @bigmqama "I just had a telephone appointment with my doctor. He told me about something round tha..." + (show)
@bigmqama

<p>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.?</p>

Jump to this post

@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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1 reply
bigmqama | @bigmqama | May 24, 2020
In reply to @tonyinmi "@bigmqama, a thought just occurred to me. Maybe your doctor was referring to the Ditto? It's..." + (show)
@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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sarasally2 | @sarasally2 | May 28, 2020
In reply to @bigmqama "Hi thanks for answering. The nerve damage that is cauaing the problem with my hearing is..." + (show)
@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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2 replies
bigmqama | @bigmqama | May 31, 2020

I did. Fifty years ago. Boy that makes me sound old. Yes that unfortually caused my hearing loss. I m trying to learn to deal with it because I am almost deaf now.

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bigmqama | @bigmqama | May 31, 2020
In reply to @sarasally2 "I was scheduled for radiation from an AN but canceled because of the virus. Does radiation..." + (show)
@sarasally2

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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I. Posted a reply in the wrong place. I. Had radiation fifty yrs ago. Now I am almost deaf and trying to learn to handle it. This group has helped.

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1 reply
bigmqama | @bigmqama | Jun 3, 2020
In reply to @bigmqama "I. Posted a reply in the wrong place. I. Had radiation fifty yrs ago. Now I..." + (show)
@bigmqama

I. Posted a reply in the wrong place. I. Had radiation fifty yrs ago. Now I am almost deaf and trying to learn to handle it. This group has helped.

Jump to this post

My parents oked tthe radiation but it saved my life so loss hearing or life.. turned out well

REPLY
bigmqama | @bigmqama | Jun 29, 2020

Does anyone have Tinnitus? I think that I do. Ever hear of Sonus Complete? Ever try it? It is a pill made of vitamins and herb, wondered what you thought.

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1 reply
rosez | @rosez | Jun 30, 2020

I use lipo flavonoid pills. It helps me

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