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?

@johnsonbarbara

Looking to join an online focus group today? 2/7 1pm ET. Thanks. Barbara Johnson

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@johnsonbarbara Hi Barbara.
Are you looking for somethings specific or a group about hearing aids and hearing loss in general. This group has just started and we welcome you.
I have had a hearing loss for about 14 years, cause possibly aging but undetermined. In the last few years my clarity has suffered.
My daughter also has a hearing loss but hers was from infancy and whereas my loss is worse in high frequencies, hers is low frequencies.
I’m sure as this group gains momentum we will be able to answer questions you may have, if we can’t yet.
JK

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hearing aids mostly

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@salledell

Hi. This is Sylvia. I experienced hearing loss in my left ear in my 50’s. Shortly after, I developed Ménière’s disease and have very little hearing in that ear.
I wear hearing aids in both ears and am fine with face to face conversation, but have trouble distinguishing words in a large room like a gym or swimming pool. This makes it difficult to follow instructions in exercise classes. I’m thinking possibly cochlear implants might help. Does anyone have experience with a cochlear implant?

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@salledell , I lost my hearing to Meniere's and have bilateral cochlear implants. They have given me back my life. Ask me any questions.

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Hi, I'm a bi-lateral CI user since 1994 (and 2006 for 2nd); I've been profoundly deaf since age 4 but wasn't diagnosed until I was 10. I have many friends and colleagues within the d\Deaf communities and work and have connections with all.

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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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Welcome all to the Hearing Loss group.
@casper15 @dstell @salledell I'd like to invite you to join the discussion thread about Meniere's Disease. Your experiences would be most welcome to people new to Meniere's.
> Meniere's Disease https://connect.mayoclinic.org/discussion/menieres-disease-2/

Likewise, there is a discussion thread about Cochlear implants @christinahaire @dstell @salledell
> Cochlear Implants https://connect.mayoclinic.org/discussion/cochlear-implants-2e44a5/

Some of you may be wondering why @linkeellis wrote d/Deaf with d/D. No, it's not a typo. She explains why in this discussion.
> Hearing loss: How do you identify yourself to others? https://connect.mayoclinic.org/discussion/how-do-you-identify-yourself-to-others/

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I had Tinnitus from Gun shot (sound) in 1969 and my hearing loss started gradually for now I am hard hearing with High Frequency hearing loss sever to profound and can't hear at all in crowded place or having back ground noise hearing aids is not helping me.

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I have been wearing hearing aids for over 30 years. My mother thought that I was born with a hearing loss but why she never had my hearing checked when I was younger is beyond me.
When I was a young adult I started working as a mechanic and was subjected to a lot of loud noise for many years. Back then no one thought about using hearing protection. My hearing became damaged during that time but what really caused the most damage was when I attended a rock concert. For three days afterwards I was completely deaf. It slowly came back but not to the level of before.
My latest hearing test showed I had severe loss in frequencies found in human speech. I now work in a position where communication is an important part of my job. Due to my severe hearing loss I become very frustrated and sometimes angry with myself.
I am very good at what I do in my profession which helped me get promoted to a management position but now I wish I had my old job back which did not require so much communication.
I wear phonak amplified bte Bluetooth heating aids which help somewhat but they amplify a lot of unwanted noise as well. I do lip read somewhat which helps if I am facing someone.
Due to my skills, I have been asked many times to teach classes but for the most part have declined because difficulty hearing questions and the embarrassment I get when I cannot hear repeated attempts.
I also have tinnitus.
In my private’s life my wife and family are very patient but I tend to be introverted and quiet.
You would think with technology of today there would be a way to repair nerve damage.

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Hello I was diagnosed at the age of 5 with cholesteatoma in my left ear. I had two surgeries at 6 and 8 yrs. I had minor hearing loss due to the damage, but continued to function and grow up with very minimal knowledge of the disease. I suffered with some minor ear infections and maybe more than normal, but no real effects on my daily life. Fast forward to age 52 I get what I thought was a minor ear infection and a terrible migraine that turned out to be a reoccurrence of cholesteatoma. I had surgery in May 2018 to remove the cholesteatoma which was considerable size. I was at Mayo getting a follow up audiology exam and saw a flyer about Mayo Connect.

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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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