Hi all,
Just curious about your story. Being that I’m 42 and went from 30 decibel loss to 65 decibel in 5years(each year dropping)……I know we are all different but love to hear of anyone has had anything similar and reading their story? I’m finally ok with my loss and so glad that the aids can help me so much. My ENT says they can’t give any timeline, or know for sure but best guess is that “in time I will probably need more then hearing aids” as she suspects my hearing loss to progress but at what rate can not be sure. Good news is; all MRI’s and scans show no major medical condition to be alarmed about.
Looking forward to reading your stories!!!
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Diagnosed with a high frequency loss in the third grade. Got my first aids in my mid 20s. Have a profound loss in my mid 60s and still fading. It’s called a genetic loss although no one else in my family has a loss.
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Inherited cinderblock ears from my dad, who had sensorineural loss (his made much worse in sub’s engine room during WWII). My loss was at 30dB from my first hearing test done (annually for all kids in my elementary school). I somehow managed okay till I hit my 30s, at which time the loss was 45 to 50dB or more and I got my first pair of Starkey aids.
Somehow, I managed to drop a LOT more to my current loss (see audiogram) that I have now. It seems to have plateaued, and I hang on to every SHRED of that hearing that I can. Gave up shotgun shooting, rock concerts and loud gatherings. At least with my aids I can turn the volume down, down, down … and even OFF if the ambient noise requires it.
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My hearing loss was diagnosed when I was about 30. I don’t recall the severity/dB level specifically but I remember the audiologist saying I must be lip reading given the extent of my HL yet communication ability. At first they assumed I’d blown out my ears with rock music. So I was amused when they found out no, it’s genetic.
Anyway, I’ve worn hearing aids for about 30 years and my low and mid-range loss hasn’t changed much if at all I don’t think. I know it hasn’t in the last 15 because I have a few audiograms for that time period. In the last 5-6 years, I’d guesstimate, I’ve lost some high frequency hearing (so my reverse slope isn’t as steep). In 2014, my 3-8k range was between 25-40 dB. Now it’s about 45-55 dB. I have no idea how that compares to loss patterns but would be interested to hear from any professionals on the list who have that info.
I hope our sharing stories helps you. I’m interested in hearing this from others too. So thanks for asking.
Looks like you are on top of things. I started with hearing aids at 47 but i could have benefited sooner. Both ears were similar shape as my good/right ear when diagnosed, but at moderate loss not severe. About two years ago my left ear tanked for an unknown reason. I took an early plunge into a cochlear implant for my left ear, and I’ve been doing very well with my new Advanced Bionics CI. I was activated about 5 weeks ago and doing much better than before. There are options and they get better all the time.
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Sorry but what age are you now? (Curious about timeframe!!)
Glad you asked because I meant to include that. I will be 61 in two weeks. There is no predicting where your hearing will go. It may not get a ton worse! I have a brother with a similar audiogram as mine was before I tanked in one ear and he is almost 72 and would do great with new HAs if he would wear them.
I’ve always lived with a genetic hearing loss, experiencing tinnitus as a child, and testing at school evidently picked up I had an issue since I was recalled every year…but no-one thought sharing this with my family doctor was a good idea. I might’ve been fitted with HAs much much earlier. When tested in my mid 20s, I was found to be about 45dB down, right in the speech banana. I was given one aid…which lived in a drawer for 5 years.
Fast forward five years and I’m back being tested and surprise surprise my loss was over 50dB loss due to non use of said single HA. I’ve been on two aids since then.
Currently sitting at around 65dB loss and it’s stayed constant for the last five years or so. This includes two tests in Costco (most thorough I’ve had in 20 years and on par with the very best NHS testing I’ve been through).
Not sure where in Virginia you are located. Where did you go for your CI? When I looked around regionally I only found Duke as having the ENT sub specialists best for medical evaluation and surgery.
Based on their hearing test which showed much higher Word Recognition Scores the otologist thought hearing aids would still work for me. I have ordered Oticon More 1 from their audiology department since they could not adjust my Costco aids.
I thought you never ask a woman her age LOL
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Wow! That emphasizes the importance of the hearing professional. My Costco tests over a 10 year span were not as thorough as the test I had last month from Duke University.
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He chose a safe woman to ask that question. I’m happy to have some age! It beats the alternative. . That’s how I view age.
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My loss happened almost overnight. In retrospect I probably have had tinnitus over 40 yrs. I always thought it was cicadas or power lines only to now know it was tinnitus. Had many test over the years but no dramatic loss at all. Then one day I was or king in my garage with a propane heater going. Felt nautilus and disorientation. Called 911 and ended up in the hospital. My Co2 was fine and after the symptoms settled I was released. After reading up on my symptoms and realizing I had some major hearing loss I decided to make an appt with an ear specialist. He diagnosed me with Menieres.
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I live in Abingdon- far southwest VA almost to TN. I went to East TN State (ETSU) for my CI Eval and was considered quite borderline. My AuD there, the brand reps and my ENT were hesitant to commit to a recommendation for me toward CI. But I figured it was only a matter of a year or two and I was struggling to hear at work. I was ready for new HAs to upgrade my Oticon OPN. CI surgery with the AB Link Phonak HA for my other ear was covered by insurance. New HAs were not. I also worried that I would be cooked work wise if my better ear changes suddenly.
I considered Johns Hopkins, UVA, UNC and Vanderbilt. Many consider Vanderbilt to be a leading center so I went there for surgery, activation and first one month mapping appt. It is a five hour drive so I will now do my follow up at ETSU about 45 minutes away.
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I agree. I am slightly older than you but have to keep reminding myself that old age issues are better than the alternative.
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Exactly. My father was proud of every year and shared it readily til his death at 92. That’s my plan. Of source I also share readily that I wear HAs and now a CI. It helps normalize it for others who may struggle.
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I (& those around me) have been suffering due to my word recognition. My understanding of WRS was that it was the best expectation from hearing aids. I exhausted all reasonable options here so I decided to get checked medically and the WRS especially was 30% higher than my recent historical tests.
Thanks for sharing your experience. I still have high hopes for Duke when I go next month for my new aids. It is a 2 hour drive each way, so not very convenient. Apparently they will not do remote sessions across state lines.
For what it’s worth, below are my word and sentence percentages before and one month after CI activation in my left ear. I admittedly am having excellent early results. AuD said reasonable word understanding rates are about 85 so I have a bit of practice to do on words with my CI.
Jan 18 2923: First mapping at one month percentages without CI and now:
Words both ears aided 76 - 92
Words left ear only: 40 - 72
Sentences in quiet both: 98 - 98
Sentences left only: 55 - 89
Sentences in noise both: 61 - 94
Sentences noise left only: 37 - 88
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Keep in mind that everyone’s loss is different and just because someone’s history may seem similar, that doesn’t mean your future will be the same. The most frustrating thing about hearing loss is that it’s unique for each person. Which is why someone says they love their aids and someone with a similar loss says they hate the same aids
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@Johnmurphy I was born with profound loss in my left ear. My R ear had mild to moderate loss until I was in my 60’s. I consider myself lucky that I managed for so long without aids. 10-12 yrs ago I branched out into hearing aids. Phonak Audeo followed by Phonak Bolero’s. Late 2016 my Right ear suffered a severe SSHL, dropping this ear to profound loss overnight. I struggled to talk on the phone, constantly asking people to look at me when they spoke, and asking them to repeat what they said. In a noisy situation it was impossible to hear anything, so I sit in the corner and read a book.
In 2017 I booked in for a Cochlear evaluation, the evaluation found my L ear WRS was 22% my R ear was 26%. For the next 18 months I sat on the fence do I or don’t I proceed with a CI. By the end of that 18 months my life was one of isolation from family and friends. So I bit the bullet and moved forward with getting a CI. I wanted my L ear done but my surgeon said no, as that ear had been profound for 69yrs. So he did my R ear instead. It’s truly the best thing I’ve ever done getting a CI and going bimodal, my R ear WRS is now 96%. I’m now struggling with the decision to go bilateral so far it s resounding no. But I will at sometime in the future have to say yes, let’s move on.
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