Your hearing loss history

Hearing Loss
#1

Let’s write about our hearing loss history here.
My turn.

My elementary school years were quite normal. I remember having chats like normal hearing people.
I started to have significant communication problems when I was around 13-14. My mom says I didnt use to respond when called from back when younger than that.
I was diagnosed with a 60 db moderate hearing loss at 14 in 1989 and got my analog hearing aid - Unitron E1 P.
I changed my hearing aid to oticon e 26 p in 1996, I was probably in severe loss range then.
I used the oticon aid for 10 years since I couldnt afford a new one…
In 2006, I finally got my first digital hearing aids and started to wear bilateral hearing aids. They were Bernafon win 112 sp with a 76 db gain. I was in severe - profound range.
In 2011 I started to wear phonak naida core sp hearing aids.
In 2018 I started to use phonak sky v 70 sp hearing aids.
In 2022 I’ve changed my aids to naida paradise UP , ultra power aids.
In future, I’ll probably wear a cochlear implant.

My hearing loss is likely genetic and comes from my dad’s family.
My father was also hearing impaired. He had been using a phonak naida q 30 up hearing aid before his death in February 2023. He had little speech perception. I miss him dearly

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#2

My father was hearing impaired, had a series of different hearing aids over the years, and otosclerosis surgery in probably the late 1960s. His mother (my grandmother) was very hard of hearing and used a body aid - a little box like a transistor radio with wire to a single ear piece. I can’t imagine how distressing it would be to hear the little box shuffling around in one’s pocket and all the other background noise!

In 1973 (@~24 years old) I began to notice people bitching at me that I “wasn’t listening” and heard echos of my father’s experience, Went for checkup, same diagnosis, wore a Beltone aid in one ear for a few years, then stapedectomy on right side, successful! A year or two later, same surgery on left side, worked for about a year and quit suddenly. Doc said the prosthesis had ‘slipped’ and stabbed the cochlea, nothing for it. I do not know if a cochlear implant would do anything, but 1) not if the cochlea is dead, and 2) am shy of more surgery.

What I did not understand is that hearing in the surgically-repaired ear degrades over time. Now my fixed 'good" ear is between severe and profound, my left ear is still at zero, and I’m just grateful to hear anything at all. Without the aid, if someone threw a steel trash-can lid on the pavement, I might hear it - I’d certainly be aware there had been a sound, anyway. Still, I’m grateful - half the people in my ‘contacts’ list are dead, I’m still alive, both eyes work, so I’m ahead of the game.

Over the years I’ve had various aids, the very best being a wired analog BICROS Starkey that allowed me to talk ‘normally’ on a landline phone using my deaf left side - no feedback! Able to keep my job because of that.

First non-analog was a Bernafon 505 Verite in 2010, from Costco, a consequence of reading this Forum. Worked well, sounded good, too much feedback, but got it fixed when it quit - by a guy in CA who I read about here, who did very good work while it lasted.

Had a Phonak BICROSS rig in 2018 that was one of the most unsatisfactory instruments I’ve ever had, and it was my fault for not rejecting it during the trial period; they would have had to take it back and I would have been no worse off, but more informed.

Alas, I wanted so badly for it to work that I kept it - and finally went back to Costco in 2021 and got a Phillips 9030 that is pretty darned good! And the hearing aid person there is the very best - I’m convinced that much, much more depends on the person programming the aid than on the make and model of aid.

Anyway this is too long, but you asked.

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#3

Thank you for sharing. Every one of us has something to say

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#4

I was an insurance agent in a call center for many years; for most of those years I avoided music and tv because I was always in a loud environment at work; also our daughter and her boys live with us and they are plenty noisy. I got laid off just as covid hit, and watched some tv. Hubs would come home from work and tell me he could hear the tv out in the garage, but I was struggling to hear the dialog just five feet away. I blamed it on crappy speakers and the grandkids being home for the summer and making a bunch of noise. When I went back to work the sound sensitivity came back after being on the phone all day, and I continued to struggle with some men’s voices; that’s what the volume button is for right? I just turned it up and went about my work. My teenage grandson has a voice that is very difficult for me to hear and we would argue all the time about him not responding to me when I talked to him. He got really upset one day and it turned into a huge fight. Then I had a terrible vertigo attack and finally decided to look into those and went to an ENT. Also saw an audiologist and was confronted with the fact that I have hearing loss. Now it all makes sense.

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#5

Your response is perfect! “I’m convinced that much, much more depends on the person programming the aid than on the make and model of aid”

You are so right!

I read a book recommended on this forum. I truly needed to read it, and it changed my life.

HEAR & BEYOND
Live skillfully with Hearing Loss

Shari Eberts
Gael Hannan?

I hope this helps someone.

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#6

Way back.

After comments when I asked too many times for help understanding, I decided to check out hearing aids.
I looked in the yellow pages. I found a wonderful practitioner. I ordered one Widex hearing aid because it was the cheapest and I couldn’t afford two. Just after I got it, the practitioner left the firm. They remade the hearing aid because it squealed when I chewed. It hurt! So I would take it out when I was stressed. 10 years…
Along the way a good friend at work said that he had issues with balance because he had 1 cochlear implant. I had fallen skiing; my foot went backwards and I ended up with 2 plates/14 screws in my leg. I still have them more than 20 years later.
Nowadays I have wonderful hearing aids. They were not set up right. At my audiologists request I’m searching for a practitioner who can set them up properly.

DaveL
Toronto

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#7

Hi,

I feel I always had a mild loss. About 4/5 yrs ago I went to finally get checked and had a mild loss in 30 decibel range. Tried hearing aids for a while but didn’t ring too much help. After another 18 months or so I went back for another hearing evaluation only to be told had gotten worse. Dr pretty much told me I needed to be wearing aids full time. Vanity was a big part as I was only in late 30’s but I started wearing them and just got to like hearing better.

Unfortunately, I’ve had several onset hearing losses that have reduced my hearing drastically for short periods of time. Luckily after each episode (within a month or less) my hearing has come back to within 5decibels of where it was.

My scenario at the moment is every annual exam the last 3 years I have lost 5-10 d of hearing EACH and EVERY year. The Dr for obvious reasons can’t predict if this will continue or plateau but for me it’s a scary position to be in. If it were to stay even at present annual losses then I will be profound within the next three years. All scans etc have come up clear so I guess it’s just a waiting game. Has anyone had anything similar?

I haven’t even updated my recent audiogram but the left ear has pretty much level out with right and right has dropped 5decibels in almost all frequencies and even a little more in the lows.

Other then in noise, I hear quiet well so not panicking just yet. However it’s not a nice thing to be hanging over your head especially when only 42 years old. Any feedback would be greatly appreciated and looking forward to reading your stories.

John.

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#8

Your post is excellent. I lose 5-10 dB every year too.

Yet the very last audiogram my hearing improved. I think the test was flawed…

the last go around…the last couple of years…I have found that the darn domes are terrible. Ihave used open then closed domes. Closed domes have two tiny holes in them…Power domes are very uncomfortable for me.

A test that has worked well for me, I put a finger in each ear. If the volume goes up I have the wrong domes. I have reached out to my audiologist. That’s how i transitioned from open to closed domes.

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#9

DaveL, thanks for the book recommendation! It looks very much worth reading.

But I am sitting here at the screen giggling / cackling because on Amazon, the Kindle version is $9.95, the Paperback is $13.99, and the Audiobook is $0.00 - only the fine print explains, “Free with your Audible trial”.

At first I thought Amazon was giving an audio book about hearing impairment away free, because it could be close to worthless to a hearing impaired person. My bad, I guess…

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#10

I have a genetic hearing loss (cookie bite), undiagnosed-but-sort-of-on-the-radar throughout my school career as I was regularly recalled for hearing tests. Crucially no one had the wit to a) write to my parents or b) communicate with my family doctor.

Lifelong tinnitus, dismissed as ‘it’s just wax moving’.

2001 - finally saw a NHS audiologist and an ENT. I was 26 and told I had the hearing of a 50 year old and equipped with a ‘semi digital’ hearing aid. Just one.

About 2006 - back to see an audiologist. I’m really quite hard of hearing! A pair of Starkey Radius hearing aids.

(The Radius series prove to be made of the electronic equivalent of cheese as they fail every 6-9 months. As in just die. Seems these are HAs for highly sedentary people not active folks with hobbies, jobs etc).

About 2009 - yup, still can’t hear. NHS repair tech notes I’ve killed a lot of Starkey HAs and I gain an upgrade to Phonak.

2011 - Phonak Nathos upgrade. These are finally good HAs.

2014 - newer Nathos.

2015 - lip reading classes turn out to be one of the best things I’ve ever done. A group of people who immediately understand my experience of life.

2017 - my employers buy me the Roger Pen. Upgrade to Nathos S+ at my NHS appointment.

2021 - the loss of a hearing aid. Calamity. Disaster. That pandemic thing. After a long wait for a new mould, I resign myself to buying HAs for the first time. I’m almost ordering P90s when I discover this site and the existence of KS10s, a cheaper but as good equivalent. I use KS10s.

December 2022 - join a 32 week wait list for my NHS clinic for my overdue 3 yearly recall. Still waiting….

2023 - Roger On iN purchased by my employers. Game changing. 1st year review with Costco. Hearing loss seems stable at -65dB.

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#11

I’m 18 started loosing my hearing two years ago at 16 . Was already a moderate loss when I finally gave in to my friends telling me I wasn’t hearing right. I have a progressive loss like the rest of my family as 3 out of 4 of us in my household are deaf. I am losing between 5 and 10db every 6 months so at this rate expected to be profound within the next few years. Fun fun.

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#12

Thanks for the stories

#13

Your realistic attitude and good humor are admirable and will stand you in good stead in the coming years.

A bit of advice from an old guy: listen to music now, while you can still hear it. Bank it now, and later, you can play it back in your head. Not the same as listening to it ‘for real’ but lots better than nothing.

If you can laugh, you can survive.

Best wishes.

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#14

I’m not alone all of my family are deaf so I fit in :joy:. Musics already a struggle, I don’t understand lyrics unless I search em up, even then I just don’t understand, but it doesn’t really bother me I’m not a big music fan.
There’s no point getting down about being deaf because it won’t make anything better😆.

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#15

I was born 7 weeks prematurely, consequently I have profound congenital loss in only my L ear. I managed reasonably well until I was in my 50’s. I then wore Phonak hearing aids until they didn’t help me very much.

My AuD then suggested I fit the criteria for a CI after suffering a SSHL in my R ear. This left me profoundly deaf in both ears. In 2019 I did indeed move foreword and had a CI, and the rest is history. It’s the best thing I have ever done for myself, and my hearing.

#16

Born in 2004 with my left ear being completely deaf, leaving me hearing with only my right ear for the first 11 years of my life. I can hear fine despite being half deaf on my left ear.

Come July 2015, after finished watching one of the Pink Panther movies, I went to sleep with my right ear on my pillow and woke up literally not hearing anything. I admit I was nearly went on a panic attack when I realized I cannot hear anything, not even on my right ear. Got a hearing aid in somewhere summer of 2016 and I later broke it in January 2018 and then got a cochlear implant surgery few days later. I’m still have a Nucleus 7 since January 2018 but I hadn’t wore it in three months because the little cable is torn apart and I’m still waiting for my new one. Really frustrating and aggravating if I’m being honest, especially since my family literally doesn’t understand the concept of deafness. I’m not afraid to admit I actually hate wearing cochlear implant :confused:

To this day, I still have no clue how my then-only hearing ear, my right ear, became deaf. I still don’t know what exactly happened to it.

#17

@BoCat

I know what you mean. I’ve had my Phonak Audeo P90R’s for almost 2 years.
Waxguards…I hate the

and the instruction drawing shows “click” when you put the old wax guard in the holder. Click? I can’t hear that! I’m hard of hearing, and need my hearing aids to hear it. I do both at once. Rants over.

#18

Always struggled with word recognition (lyrics etc) but enjoyed loud things, music, jet aircraft, loud engines, nagging (not the last one!).

Now 63 years old, played a loud guitar for 40+ years in the style of Angus Young! I used to refer to “my lead boost” pedal as The Afterburner! My new audiologist has seen me play and said it was “a little loud!” Anyway, my hearing loss is mostly self induced, but I now think it’s partly hereditary.

Around 25 years ago my weekly bout of whistling Tinnitus just didn’t go away, and became permanent. People no longer spoke clearly and mumbled. I just assumed the Tinnitus was blocking the words and I plodded on.

In 2009, my left ear “blocked” up and I virtually lost all hearing. A couple of weeks later, I bent down to plug a guitar lead, and the other side filled up (sounded like water getting in the ear canal). I bought a hearing amplifier, which was like a neckloop, with ear plugs attached. I sought medical advice. A specialist did a hearing test. My auditory test was slight ski slope at about -110 dB, and my conductive was slight ski slope at about -50 dB, from memory. He told me then that grommets would be fitted, but my hearing would only return to the conductive levels, and I needed hearing aids!!

This experience makes me feel very lucky, as I know how profound hearing loss is debilitating. In this thankfully short period I withdrew from most social actvities.

2009 UK NHS Oticon Spirit analogue HA’s with moulds - wow I could hear things I hadn’t heard for years.

2012 UK NHS Oticon digitals don’t know model as Audiologist took them off me when given next ones (they are technically on loan).

2016 UK NHS Phonak Nathos S+ Micro (Spice+) closed domes - I still have these, as the kind Audiologist let me keep them. :slight_smile:

2018 UK NHS Phonak Nathos Auto M (Venture) moulds again. One of my dogs loved these, and ate about 3. UK NHS aids are free, but the replacements cost £100 each. A small price to pay.

2022 UK NHS Nathos Nova M (Marvel M70) moulds. Luckily the dog developed a dislike for earwax, and hasn’t touched these. :slight_smile: When the audiologist left the room to get these, I put the Ventures in my pocket. She didn’t try and retrieve them.

2023 My speech recognition was still poor, and I returned 3 times for fine tuning, but without much success. After joining this forum and watching YouTube, I decided to sort this out. Private audiologist won’t touch NHS aids, so I decided to buy.

2023 Phonak Audeo Paradise 13T slimtip custom moulds. I bought these online at my audiologists request, as the online price was better than he could do. They arrived with closed domes, so I wore these until the moulds arrived (vast improvement on streamed music - the bass doesn’t leak out). The fitting was superb, and my speech recognition is better than I can remember. The audiologist is the most important factor in all of this.

Next - self programming

I still like loud things, but when getting nagged, I just take the hearing aids out!

Restect to all
Peter

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#19

Thank you all. Keep stories coming

#20

There is no history of deafness in my family, only my brother who had glue ear in one of his ear when he was young
I was born with normal hearing. Around 3 or 4, I was referred to the hospital as I had speech and language delay. Turns out I had glue ear in both ears and conductive hearing loss in my right. I had surgery in both ears to insert grommets as well as a tonsellectomy and adenoidectomy… I am not sure why all of them was done at the same time?

My audiogram was normal a few months later but I had several ear infections along the way. When I got to secondary school, my family noticed I was not hearing and my speech pronounciation was very poor and the school was also noticing I was reading lips and struggled if I was at the back of the class. So they referred me to the audiology and was diagnosed with sensorineural hearing loss in both ears.

It has gradually got worse as time gone on. Does not help the fact I refused to wearing my hearing aids… was a very, stubborn teenager. I am 30 now and currently what my audiogram shows.

No history at all. Purely down to bad luck I guess.

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