Hearing Loss: Come introduce yourself and connect with others

The telephone can be a problem, but technology available can remedy that. Get a captioned telephone. CapTel and CaptionCall are the two prime providers. They require landline connections, so work everywhere. There's a cell phone app called Innocaption that works with cell phones. You're hearing healthcare providers should be sharing this information with you IF you tell them about the issues you have that are problematic. There's a heck of a lot more to helping hard of hearing people than simply putting a hearing aid in their ear! They must also do some counseling, which means asking about your life, your lifestyle, the things you enjoy, and perhaps miss doing, etc. By the way, those captioned phones are free in most instances when you have a diagnosed hearing loss. Your state office or commission for deaf and hard of hearing will have information. Each state is a bit different, but they all have departments of health and human services that cover disability issues.

Scott, I've sent you a personal message so that we can "talk" about Portland-area services off line.

Thank you, Julie! Yes, I know about captioned phones but haven't tried to get one...yet. First, we live on acreage and I'm often outside working while my husband, who can't walk a distance or without his damned walker, is in the house. Because we have zero cell phone reception here, we have a special extended-range phone system which we purchased when he got on the waiting list for a kidney years ago. The system allows me to carry a handset while I'm outside so that he can intercom me if he needs help. In addition, we can only have Charter/Spectrum here, and they are downright hopeless. When we moved here full time six years ago, it took three months and four different numbers to get stable phone service, much longer to get internet, and over a year before we could watch TV. We learned not to call Charter after one of the servicemen tried to turn the Charter one-ton van around right at the creek culvert and got it high-centered with the front wheels hanging over the water...meaning we had no access until a special tow truck arrived to get it out. So, messing with our phone service requires true grit...and being able to hear! We have no closed captions on TV, either. Yes, I know that they're mandated due to ADA, but Charter apparently didn't get the message. I've learned to rely on the internet to get news.

FYI: I just checked the national HLAA website. http://www.hearingloss.org There are 3 HLAA chapters in Oregon, plus a state association. There are only 13 states that have state associations, so that's a very positive thing for Oregonians. HLAA held a national convention in Portland 6 years ago. The key to receiving help from HLAA is to get involved and meet the people. I have learned more from HLAA people than from all the hearing healthcare professionals I've seen over the last 40 years. Not meaning to diss the pros, but pointing out that self help and peer support is extremely helpful. AND, a lot of the technology that's available to use today is the result of HLAA folks pushing research and development. I go back to the days when we were creating our own induction loops out of telephone wire, amplifiers and microphones from Radio Shack. We saw what worked and pushed it. We let the research bodies know there was a huge difference between being hard of hearing and wanting to remain in the hearing mainstream, than identifying as culturally Deaf with a preference for sign language. It took millions of people from all over the USA, coming out of their hard of hearing closets to start making hearing loss an issue of concern. Until 1988, the National Institutes of Health didn't even have a division to address communication disorders. HLAA was founded in 1979. Yes, I admit to being an HLAA advocate. I give this organization, which was originally called Self Help for Hard of Hearing People, Inc. credit for giving me back my life!

I do not use the voice to text app often, but know others who use it all the time. The ones most heralded are Live Transcribe for Android phones, and Otter ai for iPhones. Both apps are free. I've experimented with Otter ai, and am amazed at how well it picks up speech. Like anything with a microphone, in an environment with background noise, or others talking besides the one you want to hear, you will see some confusion. The trick is to get your device as close to the desired speaker as possible. Not exactly easy when you also have to read it. I use Otter ai on ZOOM conferencing by putting it right near the computer speaker. It works welle

There are other assistive technologies that can be used in conversational settings. I've been using an 'extension' microphone for decades in 'cocktail party atmospheres', which includes everything from parties to church coffee socials! The hearing aids have to have telecoils to connect to most technology, although BlueTooth will also do the job. Your provider should be able to tell you more about that.

@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!

@lindleys, You mentioned that you are going to go forward with hyperbaric oxygen treatments. These treatments mean that you are in a chamber and the air pressure increased. The drawback is that the pressure WILL affect the eardrum. You may experience pain. You may want to suggest that they start with a lower pressure. If the pain in your ears persists, your ENT can insert a drain tube, similar to what they do for people with blocked estachian tubes. Will it be worth it? I don't know. I wish there was more data on the effectiveness of hyperbaric oxygen for people with hearing loss. My hearing loss is genetic so hyperbaric oxygen will not help me.
Tony in Michigan

Scott Lindley and I have been "talking" via e-mail since we both need to see specialists or get CIs in Portland, OR. He committed a typo in that Dr. Kim is a neurotologist, not a cancer specialist. Dr. Kim sounds more realistic than Dr. Hodgson, whom I saw last July; he brushed off my questions about CIs for those of us with Meniere's, but promised great wonders. Too slick! Both Scott and I will be anxious to hear any recommendations any of you have about which brand of CI may be best. I plan to go back for another test once I get Meniere's into remission...right now, I'm afraid to drive any distance for fear of spending hours vomiting in a hot, uncomfortable car. My last two trips to the metro area resulted in just that, and it's not something I'd want to repeat. It would be the same if someone else drove me, and even worse if they insisted on continuing the trip while I was at the worst of being sick. I just spent three hours lying flat, eyes closed, praying it wouldn't get any worse. I'm going to temporarily increase the hormones I take in the hopes of achieving a remission.

Lindleys, check out a posting in this group called, "speech-to-text app".