Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Tue, Feb 5 12:02pm

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

@capausz

@contentandwell, the ENT did not have my hearing records. He looked in my ears, said my hearing loss was serious, and that I had had hearing loss for several years….claimed he could tell by my speech. He had a technician do a very brief hearing test and then sent me right down the hall to his Starkey hearing aid salesperson. I was very disappointed. I expected more from a specialist.

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@capausz That is really disappointing and strange! I would find a good audiologist to go to.
JK

@capausz

@contentandwell, the ENT did not have my hearing records. He looked in my ears, said my hearing loss was serious, and that I had had hearing loss for several years….claimed he could tell by my speech. He had a technician do a very brief hearing test and then sent me right down the hall to his Starkey hearing aid salesperson. I was very disappointed. I expected more from a specialist.

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You have every right to expect more from a specialist. If I were you, I'd get to a cochlear implant center and have real tests done. It doesn't make sense to purchase new hearing aids if a CI is in your near future. In fact, even if you have one CI, rather than 2, you will want to hearing aid in the opposite ear to be compatible with the CI brand you choose. Get in touch with the nearest HLAA chapter in your area and find out where others are receiving appropriate evaluations. If there isn't a chapter near you, connect with The Hearing Loss Assn. of America. I cannot post their website on this reply, due to rules and regulations on this site, but you can find it by googling it. You deserve better.

The HLAA website is hearing loss.org

@mikepa

The HLAA website is hearing loss.org

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Sorry, hearingloss.org ,no space.

@contentandwell

@mahnrut If you think you may get new hearing aids, wait just a tiny bit longer. I have Oticon Opn1 hearing aids that were a fairly new model when I got them, a bit over two years ago. They were supposed to be a big improvement on clarity for people who had problems with that, and I am one of them. They were better than my previous hearing aids for that function.
They are coming out with a new one though, Opn S, which is supposed to be a 15% improvement on clarity. Since these are not yet even two and half years old, and the cost of hearing aids is so high, I won't be getting new ones yet. I sure wish I could though. If you can wait more than just a tiny bit, I would wait even longer until the audiologists get some experience with this new model. I was one of the first people who my audiologist prescribed the Opn1 for and it was a learning curve for both of us.

I am part of a group on Facebook that is for people with Oticon hearing aids. It's a private group but you can request to be in it, and I don't think they turn anyone down unless they feel it is someone trying to sell something. It is run by people who wear these hearing aids, not professionals, but I guess Oticon is allowed to post there which is how I discovered that they were coming out with a new HA.
JK

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Thanks @contentandwell for the info on the new Oticon coming to market. My audiologist is very keen on Oticon so I imagine he will know about it. It is good to think that there may be some improvement in word recognition which must be the goal of hearing aid manufacturers. But isn’t that difficulty due to damage to the auditory nerve (through aging in my case) so it would be interesting to know technically how they address that if when you say clarity you mean word recognition.

Hi! My name is Gerid. I am bi-modal. I've been severe/profound deaf since I was 2 years old from pneumonia. I am currenlt 39 years old. Either the high fever ruined my hearing or the antibiotics did it. Doctors aren't sure but they are leaning towards antibiotics probably being the cause. I have worn HAs all my life up until about 3 years ago when I got my first Cochlear Implant. My word recognition was 24% combined with both hearing aids in. 0% in my right ear. 24% in my left. 6 months after getting an implant, my right ear went from 0% to 66% percent. I am now at a combined 96% word recognition! I am getting my 2nd implant done in July 2019. I wish I had gotten my implants done 5 years sooner but unfortunately I was sucked into a vortex of nasty and untrue rumors/perceptions about Cochlear Implants. I am now a Cochlear Implant volunteer. I am also President of Hearing Loss Association of America, OAK Chapter in Grand Rapids, MI. I work for CaptionCall as well, talking with providers about captioning telephone services. My life is an open book and I love to talk with others about my experiences and connect them with resources to help them seek answers to their own questions.

This infornation will help me with my decision to get CI. I will know more in a few weeks

Thank you for sharing

Liked by Jamie Olson

@wired4sound

Hi! My name is Gerid. I am bi-modal. I've been severe/profound deaf since I was 2 years old from pneumonia. I am currenlt 39 years old. Either the high fever ruined my hearing or the antibiotics did it. Doctors aren't sure but they are leaning towards antibiotics probably being the cause. I have worn HAs all my life up until about 3 years ago when I got my first Cochlear Implant. My word recognition was 24% combined with both hearing aids in. 0% in my right ear. 24% in my left. 6 months after getting an implant, my right ear went from 0% to 66% percent. I am now at a combined 96% word recognition! I am getting my 2nd implant done in July 2019. I wish I had gotten my implants done 5 years sooner but unfortunately I was sucked into a vortex of nasty and untrue rumors/perceptions about Cochlear Implants. I am now a Cochlear Implant volunteer. I am also President of Hearing Loss Association of America, OAK Chapter in Grand Rapids, MI. I work for CaptionCall as well, talking with providers about captioning telephone services. My life is an open book and I love to talk with others about my experiences and connect them with resources to help them seek answers to their own questions.

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@wired4sound how wonderful for you! I had been told for years there was nothing that could be done with my hearing. At age 60, in 2011, I saw an ENT who told me my hearing could most definitely be improved with aids. I was fitted with a pair of Widex Clear. I can’t put into words how thrilling it was to hear a bird chirp and hear my footsteps on the sidewalk. My first memory of not hearing goes back to probably age 3 or 4. I had many ear infections and high fevers. School bullies had a field day with me. What they thought was being stuck up was simply not hearing them. My hearing loss is not as great as yours, but I can just imagine how thrilled you must have been when first you heard sound. I’ve learned from this that we all have to be our own advocates. Don’t take no for an answer. See as many doctors as you can and never give up!

Hello! My name is Michele and I have been born with a hearing loss. It is hereditary in my family. I had started wearing hearing aids when I was around 18 years old. Pretty much right out of high school. I probably could have used them before then. It is so frustrating to not be able to hear everything that is being said in a conversation. It's especially frustrating when I struggle to hear my 7 year old son. I always want to hear everything he says but a lot of the times that is not possible.

@mickey5909

Hello! My name is Michele and I have been born with a hearing loss. It is hereditary in my family. I had started wearing hearing aids when I was around 18 years old. Pretty much right out of high school. I probably could have used them before then. It is so frustrating to not be able to hear everything that is being said in a conversation. It's especially frustrating when I struggle to hear my 7 year old son. I always want to hear everything he says but a lot of the times that is not possible.

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@mickey5909 it is especially frustrating for me when multiple people are in a room. There were six of us for dinner last night and it was extremely difficult for me because often there was more than one person speaking. They are all patient and understanding people though, so that did help.
I did not a hearing problem until my son and daughter were adults, so I did not experience your problem. I am sure the experience will contribute to your son being a patient and understanding person too.
JK

It has only been since 2006 that my hearing puzzle pieces have taken shape. With a better picture of the root problem I have been blessed with some answers. I was born with spinal fluid leaks in my right ear and as a child up until a few months before I graduated with a degree in music ed, I had low right hearing. For many years I have experienced +40 myringotomies with tubes plus an inner ear nerve section that my spinal fluid rebelled against, a CSF Shunt to get the sf out of my head including a mastoid debridement of the fluid and in 2006 the closing of 12-13 more right ear leaks and closing of my right Eustachian tube. Over the years I developed Meniere's, glaucoma of the ear, with it's intolerable symptoms. I have not experienced a major 'drop and spin' for 12 years. I am assuming that my Meniere's has burned out as the ATA labels it. My hearing without my Phonaks is at 24%, . I was recommended for CI last summer but by Medicare's standards I did not qualify because with my new technology Phonaks I have word recognition, discrimination over 90%. Yes, the blessings of hearing birds singing, water running into my coffee pot in the mornings, and answering someone who is talking to me behind my back is immeasurable. I have developed opinions about hearing aid dispensers with monthly quotas and poor, poor repair service, and little knowledge, and audiologists who make frowning faces. My big unanswered question is why after seeing at least 16 different ENTs couldn't one of them tell me it was spinal fluid. No, my hearing will never be at 100% but I always wish there was something more.

This has been lengthy but it's been a long journey. I am learning to advocate for myself and others who hear of my recent victories with my new aids are contacting me. Sharing with them is very satisfying. I am so glad I found you last week!

@contentandwell

@mickey5909 it is especially frustrating for me when multiple people are in a room. There were six of us for dinner last night and it was extremely difficult for me because often there was more than one person speaking. They are all patient and understanding people though, so that did help.
I did not a hearing problem until my son and daughter were adults, so I did not experience your problem. I am sure the experience will contribute to your son being a patient and understanding person too.
JK

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@mickey5909, @wellandhappy

Lots of us think we have to tough it out in social situations — not give in to our hearing loss. But working to hear can be exhausting. Take a bathroom break, go sit outside for a while, or just make your polite excuses and leave. Be kind to yourself. Its a hard thing for many of us to learn. But taking a breakneck gives us the energy to go back and try again.

@katherinebouton

Lots of us think we have to tough it out in social situations — not give in to our hearing loss. But working to hear can be exhausting. Take a bathroom break, go sit outside for a while, or just make your polite excuses and leave. Be kind to yourself. Its a hard thing for many of us to learn. But taking a breakneck gives us the energy to go back and try again.

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Taking a BREAK….. sorry.

@contentandwell

@mickey5909 it is especially frustrating for me when multiple people are in a room. There were six of us for dinner last night and it was extremely difficult for me because often there was more than one person speaking. They are all patient and understanding people though, so that did help.
I did not a hearing problem until my son and daughter were adults, so I did not experience your problem. I am sure the experience will contribute to your son being a patient and understanding person too.
JK

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I do sympathize with you. I keep thinking about Helen Keller's quote: "When you loose sight, you loose 'things', " When you loose hearing you loose 'people'." I can only testify to hearing loss. Don't you think that most of us are social beings, people persons? Interaction and communication are deeply interrupted or just plainly non-existent when others are talking at the same time. I have learned much from the e-weekly Hearing Health journals. In restaurants, sitting next to the wall or window helps a little. Don't sit at a table in the middle of the room which I now refuse to do. I am learning to become my own advocate If you can, sit in the middle not on the end that might help. Best to you.

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