Hearing Loss: Come introduce yourself and connect with others

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?

Interested in more discussions like this? Go to the Hearing Loss group.

Hi, I am new to all of this. I lost much of the hearing in my left ear after a Cerebellar stroke. I had undergone fusion surgery on my neck and as a result of damage to my left vertebral artery had a stroke. This was not diagnosed. The medical staff at the time said all the trouble I was having (and it was extensive) was the result of ether the surgery or just a bad reaction to the drugs post surgery.

Flash forward a year. My husband was due to see his audiologist for his yearly check up. He has been wearing hearing aids for a number of years. I also made an appointment to go with him to get my hearing checked. I noticed that my left ear was remarkably different in what I could hear. After the hearing tests, the audiologist suggested I see an ENT since my right ear was normal but my left ear had significant loss. The ENT sent me for an MRI. He was concerned that the hearing loss could have been the result of a neuroma on my left side.

He called with the results and said while I did not have a neuroma, I had sometime in the past a cerebellar stroke. I will not go into all the various problems this caused, but he was confident the hearing loss was due to that.

I was fitted with a Widex Evoke hearing aid on my left ear. I have really liked the results. We attend many performances of symphonies, plays and other live performances. What I have found is the hearing aid gives me much greater fidelity. Nuances are heard that I had lost.

The hearing aid itself is small and fits behind the ear and in the canal. My hair is very short, but none of my friends recognized I was wearing it. I had to tell them.

I am a very happy I received the aid and recommend it to anyone who is sitting on the fence about getting one.

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I was directed to the site by my CI rep. I am a bilateral CI user, patient at Mayo in Rochester. I had sudden loss in my late 20's, wore HA's for about 18 years until they just no longer gave me much benefit. A friend recommended CI's and I was implanted in 2013 and second ear in 2014. CI's have been amazing and I just can't speak highly enough of what they have done for me! I'm happy to answer any questions, I am a volunteer mentor for my manufacturer and am an active CI advocate!

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I have sever to profound high frequency hearing loss due to Tinnitus, hearing aids is not helpful my question is does CI treat the tinnitus too?

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@gulzar

I have sever to profound high frequency hearing loss due to Tinnitus, hearing aids is not helpful my question is does CI treat the tinnitus too?

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Many people report an improvement of their tinnitus after getting CI's but not all. I have mild tinnitus and it is the same as it was pre-CI's but I don't notice it during the day when I have my CI's on.

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One more question my Hearing aids dispenser told me the CI is only for deaf not for sever high frequency hearing loss I only can't hear in the crowed or have background noises and restaurants.

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@gulzar

One more question my Hearing aids dispenser told me the CI is only for deaf not for sever high frequency hearing loss I only can't hear in the crowed or have background noises and restaurants.

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Your HA dispenser is wrong. You do have to medically qualify and in the US that means your speech scores in the standard sentence tests need to below 50% (40% if you are on Medicare). It isn't based so much on where your loss lies, although most people with hearing loss have high frequency loss. I had a ski slope loss with near normal hearing in the low frequencies and no hearing in the high. I was able to hear things like flutes, birds, the timer on my oven, etc. with my CI's that I could never hear with my HA's. Make an appointment with the CI team near you to get accurate information about cochlear implants. They are simply life changing!

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@christinahaire

Hello, my name is Christina. I began losing my hearing in my late 50’s. Now am 74. It got progressively worse and I believe it may have a hereditary component. My paternal grandparents were deaf, only one congenitally, and my father began losing his hearing in his 40s. And deaf by my age. I had about 10% hearing and have felt truly handicapped. Then decided to explore Cochlear Implant. I had the CI surgery 3 weeks ago in my right ear. Now “deafer” since only left eat with HA. But I will be connected to the CI next week. And can let you know my progress if interested.

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So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

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@dstell

@colleenyoung, thanks for the invitation to join. My hearing loss began at age 27 when I was diagnosed with Meniere's disease. I went deaf in my left ear within 3 years of diagnosis. I went deaf in my right ear at age 48, also from Meniere's. At that point I was implanted with a cochlear implant in my left ear, and my right ear was implanted 1 1/2 years later.

With this being tinnitus awareness week, I would like to add that, although I am deaf, I have not experienced silence in 27 years.

Feel free to ask me anything about Meniere's or cochlear implants. I'm pretty much an open book on those subjects.

Dennis

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@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

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@babarker

So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

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Yes, the CI is like a BTE HA, but bigger. It is bigger because there is a lot more computing power housed in those processors. I don't care if people see it and in many ways, it's easier if they do so they know you have hearing loss, but everyone is different with how they feel about showing off their CI's. The processor comes off and you shower and wash your hair like you normally do. At first the sounds are strange, robotic, but that gets better with time. Everything sounds like it did before I lost my hearing but at first, everyone sounded like Minnie Mouse. It was actually pretty funny to listen to.

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@contentandwell

@dstell I had no idea what Meniere's was so I just googled it. Does it always result eventually in a permanent hearing loss? Are CIs appropriate for all types of hearing loss? My daughter had a friend who had always been deaf and he got them. He basically had to learn to speak then.

@salledell Does your water instructor teach from in the pool or on the edge? I have one who teaches from in the pool but she has a deep and booming voice so I can hear her pretty well. I do wear my aids in the pool, my head never goes under. Another of the instructors teaches from the side and wears a little microphone called the "Connect Clip" so I can hear her. That is an accessory for the Oticon Opn hearing aids. Prior to her using it I had to really follow her movements and what others in the class was doing. She is young and has sort of a high voice. I could wear my prior hearing aids in the pool also. A brief submersion did not hurt them. They were Phonaks.

@gulzar I hate being in crowded, noisy places. It can be very depressing to just hear a din and not be able to distinguish much. Even when my family is gathered in our family room, I have trouble distinguishing sounds and hearing what is being said. Sometimes I just drop out.

@babarker I really understand your frustration. I hate continually asking people to repeat themselves. You are fortunate to have an understanding family.

JK

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I have tried to help those with good hearing understand what I hear compared to them. The closest I can come is to have them cup the palms of their hands over their ears. This is what I hear with hearing aids. Pressing their index fingers into the ear canal is what I hear without hearing aids.

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@babarker

So the CI is the large thing on the back side of your head with a giant BTE. Are you self conscious of the look of it? What precautions are necessary. How do you wash your hair. Is dirt an issue? Are the sounds the same as acoustic natural sounds?

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@babarker, I don't notice the CI coils anymore and have had some great teaching moments when others have said something. Since I never wore aids, getting used to the processor on my ear was different.

As for the sound, it has become like I remember hearing. Many speak of it being their new normal. Brain plasticity is an amazing thing.

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@contentandwell, when I went deaf, I was convinced that I could not be helped. I was shocked when my Dr suggested cochlear implants.

Cochlear implants are suitable for people with sensory-nueral hearing loss. This is when the hairs inside the cochlea are damaged. A CI will not be the best option for conductive hearing loss, which is when sounds can't get to the cochlea. It also will not be the option if the hearing nerve going from the cochlea to your brain is damaged.

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