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Hearing Loss: Come introduce yourself and connect with others

Hearing Loss | Last Active: 47 minutes ago | Replies (1450)

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@lindleys

I was diagnosed with Sudden Profound Hearing Loss in 2018 in my right ear - 95% loss. Two days ago I lost all hearing in my left ear. It's a little scary to say the least. Having gone through this two years ago, I went directly to an ENT for treatment, as opposed to my previous approach of the walk-in clinic and wasting time with the standard incorrect diagnosis and treatments. I'm receiving steroid treatment and scheduled for hyperbaric oxygen therapy, so I'm optimistic in at least partial recovery.

In the meantime, I have a million questions and concerns as to how to navigate this hearing world without hearing. I have been pouring through the internet hoping to find a how-to guide or something that outlines what I should do now, resources, technology, tips for getting around in public... There is just way too much information online, and i'm finding it difficult to weed through it all. Do any of you know of a getting started guide to being deaf?

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Replies to "I was diagnosed with Sudden Profound Hearing Loss in 2018 in my right ear - 95%..."

Hello,

Welcome to this discussion group. It's very difficult to go from the normal hearing world to being clinically deaf. Most of us who have adult onset hearing loss (AOHL) want to remain in the hearing mainstream, and will do whatever it takes to do that. While my AOHL has been progressive over many years, I did grow up with normal hearing and developed language skills accordingly. We are very different from those who were born deaf or who became deaf prior to the full acquisition of language. Language includes speaking, reading and writing. If the steroid treatments do not work for you, I encourage you to consider a cochlear implant. You would have to go to a cochlear implant center for evaluation. Chances are, there is such a place within a reasonable distance of where you live. It may be your best chance to remain in the hearing mainstream. American Sign Language (ASL) is a wonderful tool, but the reality is; few people use it. It's like any other foreign language. You have to learn it and find others who use it to share it with. Most of us have hearing families, spouses, friends, co-workers, etc. Expecting them all to learn ASL because you need it is not reality. Yes, it may help you in some situations, and yes, it's a beautiful language. But it is not universal, so it will only help you of others you associate with also learn it. Technology has evolved over the last few decades to a point where profound hearing loss can be helped in most cases. Life will never be the same, but it will be good. If there is an HLAA Chapter in your area, find time to attend a meeting. Many of the people who participate in HLAA share your experience. http://www.hearingloss.org I hope this is helpful. While my hearing loss was gradual over time, it ruled my life until I found ways to help myself. The cochlear implant was the frosting on the cake!

@lindleys, Seeing an ENT immediately is so important. I understand there is only a 5 day window of opportunity for treating sudden hearing loss with steroids. I hope the treatment helps. I have not heard of the success rate with hyperbaric oxygen therapy. I hope to hear back on how this all turns out for you. As others have mentioned, consider a cochlear implant (CI). Your hearing will never be what it once was, but a CI should help if a hearing aid is not an option.
The Hearing Loss Association of America (HLAA) was also mentioned. Consider joining a local chapter if one is available. Any specific questions about hearing loss can be asked here. There are a lot of people willing to help.

So, yesterday was a busy day. I was referred to a specialist, Dr Kim, an oncologist at the Northwest Ear Intitute, so I met with him. He confirmed the treatment course my ENT, Dr Liu has me on is conventional. He seemed to suggest maybe even a little more than needed. One of my ENT recommendations is a series of Hyperbaric Oxygen Chamber treatments, that could cost upwards of $80,000 if my insurance doesn't cover it. The Specialist didn't feel it was necessary or supported by enough research, but I'm going to do it anyway, providing we get pre-approval from my insurance (which from calls to insurance appears to be covered). It can't hurt.

Dr Kim also mentioned now that I have profound hearing loss in both ears, I'm a candidate for Cochlear Implants. But apparently if I wait to see what happens with my left ear and I get hearing back, then I may no longer qualify. So I'm going to setup the test to confirm I qualify for an implant on my right ear. He wants to wait to see what happens with the other. If I get some hearing back in my left ear, I'll wear a hearing aid. If I don't, I'll get an implant in the left as well. I have an MRI scheduled for Monday, along with the Hyperbaric O2 evaluation. Long day figuring out insurance benefits and getting proper authorizations.

Thanks to your replys I now have a text to speech app on my phone, that converts what people say to text in real time, and I have a new phone service that works over the phone to convert speech to text. It's clunky and will take getting used to, but it will work. It only works on wifi though, so it's not ideal. Nausea is gone finally, providing i don't move too fast.

I'm excited about the prospect of Cochlear Implants. It sounds exactly like what I need to continue on in my current job - maybe even better than having only one working ear with a hearing aid! Dr. Kim offers both Cochlear and Advanced Bionic. Any thoughts on either or links to previous posts? (I apologize if this is a played out question like what oil or tires are best on a motorcycle) I haven't had time yet to search the entire forum. - EDIT: nevermind about CI link. Joyce hooked me up with a link to the cochlear implant journal forum. Thank you!