Thanks debbiea2010,
I appreciate the thoughts. My situation isn’t nearly as bad as your patient. I haven’t completely given up, but no longer expect aids to be of much help. I actually thought at the outset that with aids being so sophisticated these days, it would be simple. But it hasn’t turned out that way.
I think affordability is a huge factor why people put it off. My case I should have had them about 3 years sooner. I don’t qualify for any type of assistance but I live paycheck to paycheck. My husband and I are very frugal and we hardly ever buy anything new. We repurpose things and we’ve redone our home room by room. I don’t know many people who can pop down $3000 to 5000 for hearing aids.
I finally had no choice but to finance them because it was affecting my job and my quality of life.
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So I was born with a progressive genetic loss, going deaf from the highest frequencies first, keeping some mid range hearing and having normal low frequency hearing. So that ski loss is really hard to fit. I knew I was hard of hearing in high school, friends told me I was by grad school. But I waited until my 30s–gave up and tried again in my 50s–to get hearing aids: I’m running a company and deal with people who are Hearing, in contrast to when I did scientific work that is primarily visual. That’s the background.
I was very determined. The adjustment was hell. I needed the aids turned very far down and that didn’t help much. I also didn’t notice I was hearing better–the first thing I noticed was that my shoulders relaxed and I wasn’t so nervous about going to meetings where I needed to hear. Slowly, I experimented with what worked for me and found I was getting more used to amplification. For example, when I first got aids for the second try (20 years after the first failed try), I heard some static. I wondered why two new aids could be broken. So I kept them and found a few weeks later that the static was gone: I was hearing the letter “s.” That was part of the adaptation.
What I learned was that I needed to accept an incomplete correction until I got used to the amplification. I also needed to close up the earmolds because background sound prevented me from hearing well–counter to usual recommendations for relatively OK low frequency hearing. I wish I could tell you why I was so determined. I think the first part of it was feeling OK with hearing loss–I grew up around hearing aids, I know a little sign language and admire the Deaf community–so I was OK with being partially deaf. That helped. I didn’t feel bad about hearing loss. The second part was not becoming exhausted listening to people. That was a bigger help.
I don’t know how you bottle and sell persistence in powering through a rough ramp up. But if there is anything I can do to be helpful, please let me know. I don’t know for any individual what is best, that is very personal to each individual. But I’m happy to keep up a dialog. I apologize for the long post, it has been a hell of a long and at times miserable journey.
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Thank you for your really great post. So very well described.
Your words of experience will help others move forward with hearing loss.
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Thank you so much for sharing your determined attitude and experience.
Debbie, here is my experience. Adapting myself to wearing hearing aids (HAs) was very difficult. I had to get HAs about 12 years ago because the hearing loss was increasingly affecting my capabilities to effectively communicate, specially at work as a senior project manger of large projects. I got a pair of OTICON. It took almost a year to be fully adapted to wearing them. I had no other choice and forced myself to use them all day long, and not like at the beginning taking them off whenever I could. Unfortunately, after 7 years my hearing deteriorated to the point that adjustments were not helping any longer. In 2015 I decided to get a pair of Phonac Brio R-312T at Costco because of the very good price. My patience was tested to the limit because the dispensing techs were not trained properly enough by Phonac. After a year I went back to my original audiologist to adjust them decently. I am only now replacing them with a pair of Oticon S1 -MINIRITE 312 because my hearing deteriorated to the border between medium to severe. This was an expensive decision! I believe that the key to getting used to wearing HAs is to understand that it is actually our brain that needs to adjust itself to the different way of processing sound signals. That requires our conscious help.
Thank you so much! Yes, this is what we say and teach. The brain must get used to it. It’s not a conductive loss so it takes time. I liken it to learning speech as a baby: we could hear when we were born, but we didn’t understand speech. That is a process that takes time. Thank you for sharing your experience!
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Yes, stuff like that. I’m new to aids (but not to high-gain sound systems). The first days with an OTC Bean, I heard “a lot of 6kHz” in everyday squeaks. Almost painful. But a few weeks later, I hardly notice.
I have not heard much 6kHz in decades. When I finally boosted treble a dozen dB, my brain freaked-out at the forgotten sound, and registered “6kHz WOW! I have not heard that in SO long!!” By a week later it was not as exciting on my brain.
I’ve also learned that what I remembered as 6kHz may really be anywhere in a couple octaves, 2kHz or 8kHz. They are all now poorly remembered and tend to sound all alike. (I used to know them well, to adjust PA systems for tone or howl.)
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I can relate to your post sooo much!!! I have degenerative hearing loss myself with a similar audigram to you. I first started wearing hearing aids at 18yrs of age. I’m currently awaiting approval from NDIS (in Australia) for funding for new hearing aids as my current ones are 5 or so years old. I HATE the whole new HA trial experiences as it takes soooo long to get the settings to something I am happy with. Can I ask which hearing aids you have found you like???
I have been aware of hearing loss in one ear for probably 50 years or so. I damaged it in my teen years by shooting large center fire rifles with no hearing protection. When I went to work my employer tested my hearing and I had a big cookie bite loss mainly in my left ear, which would be the closer one to the muzzle of the gun. I went to see a specialist about it to make sure the problem was not something else besides loss due to noise exposure. It wasn’t and I basically ignored it, as I felt I could hear quite well. Other frequencies and the other ear seemed to compensate quite well.
It was only when I was nearing 70 and all the age related and cumulative noise exposure losses got to the point where it impacted my ability to hear. It was mainly understanding group conversation in noisy environments. When I got my hearing tested, I was somewhat surprised. I expected it to still be the left ear cookie bite loss but worse. It wasn’t. That loss had changed to a ski slope or more of the ski jump loss, and the ear I though was just fine, had a similar but less severe loss.
If I had it to do all over again, would I have done it differently? Probably not. What I have found is that the hearing aids do much more for my “good” right ear than my bad left ear. I naively thought I only needed an aid for the bad ear. So would I have “saved” my left ear if I had started wearing a hearing aid in my 20’s? Don’t know, but I suspect not. I also suspect I would not have enjoyed wearing a hearing aid in one ear for 50 years or so.
Bottom line is that it is a hard decision as to when the right time is to start using aids.
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Thank you, Stacyelwatt, Paulrreid and Raudrive for your kind comments, which I wanted to address here.
Raudrive, at least what I said is an honest report from someone with what my Australian hearing rehab friend, Geoff Plant, termed “a bastard of a loss.” I don’t expect everyone to have my trouble. One of my friends, who I referred to mu audiologist, absolutely loved his hearing aids from the first time he wore them.
I was astonished and also happy for him.
Paulrried, I have to tell you a funny story that may be relatable by folks here. I got hearing aids in my 30s, wore them out of the audi’s office and figured I’d stop in the bathroom before heading home. That flushing sound! I literally leaped up into the air, it was such a shock! To this day I hear things I didn’t know made such noises. But I’m more used to it now, and have better aid adjustments. Those first aids I wore were when Oticon reasoned, “if you have high frequency loss, we’ll crank up the highs.” Yeah, they don’t say that now, they talk about fitting the lower frequency range that is less lossy. My audi said for me, nothing above 4k. But with SoundRecover, I hear more stuff.
Stacyelwatt, remember I’m probably cranky about hearing because I have never had one single normal hair cell in either cochlea, so what works for me is based on weird ears. That said, I have Phonak Bolero V70s, and a backup pair of Q70s I bought on ebay–I do DIY programming. I really need the SoundRecover, otherwise if there is any background noise I lose too much speech intelligence. I hear but don’t understand. I am not sure what I said is as helpful as it could be to answer your question, so please let me know!
I’m glad I can share this kind of thing on the forum, it’s a tough journey made easier and more fun with others who get it.
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Yes, and the tinkle! (TMI- I’ve also had poor pee for years which is now improving with treatment, so a double whammy.)
Yes, with your HL curve my sound-guy experience says 4kHz is as much as you can reasonably hope for. If it can be well corrected that gets fine articulation on male speech but leaves female fricatives weak. If SoundRecover is a frequency-shift to put 4k-6k down in your <4kHz useful range, it must sound funny but sure should help. (And I am realizing that pitch-shifting does not bother many of us the way it would when we were younger and better attuned to pitch.)
Agreed.
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The turn signal on the car has a sound!
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Pretty cool.
Have you noticed other new sounds?
The coffee pot makes a chime when the brewing is done. Never heard it before my hearing aids. 
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My dog makes so many more sounds than I ever thought. He taps my leg to get my attention, but he actually makes a chuffing grunt before he does it. He grumbles when I tell him it’s time for bed. I never hear him do that before the hearing aids.
I can hear the traffic on our road before I pull out of the driveway now. It’s a blind spot… so, you know.
Birds at a distance! They sound like they are next to me.
The TV doesn’t need to be at 63, I can hear it perfectly at 38 now. Of course everyone else in the house wants it at 45.
An ugh is that I can now hear all the noises people make while eating. It’s disconcerting.
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This is the way I see it too.
It was almost a year ago after many tries at different hearing aid settings and different aids over the years that I learned my high frequency hearing was gone, flat gone. The Phonak Sound Recover 2 is a blessing for those with profound high frequency hearing loss.
All the new sounds are overwhelming and exciting at the same time. Just a bunch of noise sometimes but things are slowly clearing.
Waiting to get hearing aids then getting them can be an absolute challenge. Lots of people quit. It ain’t for sissies.
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The dishwasher beeps when it’s finished washing.
The induction hob beeps when I change the temperature
The fridge beeps when the door is open for 20 seconds
The coffee machine beeps when I turn it on and when the water is hot
Until I got my hearing aids, I thought my kitchen was quiet!!
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It gives me joy to know y’all can hear those alert tones. They are there for a reason. This new apartment I’m in has little alarms everywhere. I left the fridge door open a few days ago but didn’t realize I had. I started hearing a little alert. I checked the doors. I checked the windows. No problems there. As I walked back into kitchen I realized it was the fridge door. I thought “Thus must be what it’s lije for new hearing aid users!” Beeps and alert tones everywhere! Thank you fir responding!
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I think you hit the nail on the head when you said “stuck it out”. That’s the hardest part but it is an important part. Thank you for sharing!