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Need for advocating now for hearing loss

Hearing Loss | Last Active: Aug 30, 2020 | Replies (39)

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@sag

Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with depression because of the heating loss. My loss has been gradual, having started in my late twenties, I'm in my seventies now, but in about the last year it has gotten much worse. At my last hearing test, I was told that I'm not far from being profoundly impaired and told I might want to check with an ENT doctor. Thank heaven she told me that. I saw the ENT doctor and he sent me to a CI implant doctor. That made me think I need to learn more and there must be a lot of information on the internet that I haven't seen. I started spending time looking for and reading about hearing loss. I found and joined HLAA and found you. I'm not alone anymore.

From you I learned I should get a telecoil if I get a new aid, researched my aids and found out I don't have one. I also found out from you about Real Ear Measurement. I have gone to the same audiologist for over ten years and have never been told about an REM or about a telecoil. I have purchased two hearing aids two separate times from him. From reviews I thought this was a good audiologist and that I was getting the best treatment I could get.

This week I was tested for a CI and found out I don't quality. I was told 40 is the cutoff and my left ear measured 41. My right ear is in the 50's. Their recommendation was to stay with my current aids, Oticon, which are good aids and they programmed them with REM and and gave me new domes which seal my ears better. No more squealing when I put my hands close to my ears. They also put an additional program on my aids and made it so I can use my iPhone to adjust my aids. And one more thing they told me was that my aids are maxed out, but there are more powerful aids available now if these aids are no longer strong enough. When I was getting ready to leave my appointment, I realized that after the REM adjustment, for the first time, I'd been able to understand both audiologists even though they were wearing masks. A really good day.

All because of you. I can't thank you enough for being there and giving helpful, candid responses. @sag

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Replies to "Just reading the helpful banter and knowledgable responses has helped me so much. I struggle with..."

Good to hear a success story. (our success is measured differently). I had the same experience with REM. I got new (stronger) receivers in my hearing aids and the audiologist did not adjust them with REM until I asked him to. It made a huge difference. When I walked out of the audiologist's office I heard the "beepers" for pedestrians at traffic lights for the first time ever.

@sag, you mentioned that you are using domes for your hearing aids. You also say that these are "maxed out". I have to assume that they are maxed before squealing happens (feedback). For more profound losses, you may want to ask about custom molds. The volume should be able to be increased if you have an even better seal than what the domes are providing.
Tony in Michigan

Thank you for sharing with us @sag. Just learning you're not alone has made a different in the lives of many hard of hearing people. Those who are deaf, as in culturally Deaf, tend to socialize together and work in jobs where there are other Deaf people. They don't feel the isolation we feel, and are content to be deaf. My story is similar to yours. Diagnosed in my 20s, now in my 70s. Learning about HLAA when I was in my 40s probably saved my life…or at least the life I wanted to live. Stay tuned to new information. You are very close to being a CI candidate. I know others who were told they were not candidates, but learned they were less than a year later.

Oticon hearing aids are good quality, but not having telecoils is a shame. There is assisstive technology that can be used to remedy that, but it means having another device. If there are hearing loops installed in your area it would be worth learning more.

I wish we knew where people on 'Connect' lived so we could let them know if there are support groups in their area. Keep us posted on your hearing loss adventure and keep learning. It really matters!