Hearing Loss: Come introduce yourself and connect with others

Thanks for suggestion. Yes, an audiologist to help me adjust the blue tooth

@lyndakr You say you have gone back to your old Phonak BTE hearing aids. Are they working OK for you? Do they have the telecoil option? Most Phonak models have had that feature. They also had assistive technology that worked with them. Phonak, I believe, was one of the first to create and promote hand held microphones. Phonak's Roger Pen worked very well. Worship centers and many public venues have hearing assistive technology installed that those telecoil equipped aids can work with. An audiologist should be able to help you with this. It doesn't require a lot of dexterity so might work for you.

I have MAC pulmonary disease
Taking azithromycin, ethambutol and rifampin.
I already have a moderate sensory neural hearing loss and it is getting worse from the drug drugs.
They want me to start inhaled amikacin next week.
Anyone know where I can get a rapid MT-RNR1 test soon.
I have not had success, but I do have a script from ENT. I live in New Jersey.

Hello, I’m Amy and am new to the forum! I have single sided deafness, which came on suddenly in June of 2025 due to a Vestibular Schwannoma (acoustic neuroma). I went through Gamma Knife last September, at the Mayo Clinic in Rochester.
I have zero word recognition in my right ear, but can hear tones. If it gets too loud, it sounds like a kazoo in my ear.
Has anyone had luck with a hearing aid for this type of hearing loss?

@ajhiller I don't know the answer to your question but I do recommend an excellent source of information: Hearing Tracker Forum. There are many knowledgeable contributors to that forum who may be able to offer you and answer. I wish you the best.

Not new to hearing loss as have had single sided deafness for most of my life.

I just had a surgery the other week for a BAHA Ponto system.

I am interested in hearing others experiences regarding bone anchored hearing aides.

Also want to hear from others who have severe hearing loss.

I have experienced people who do not take hearing loss seriously and past jobs that have not been supportive and refused to make reasonable accommodations even with MD notes to allow these minimal accommodations.

Hearing loss is an ‘unseen disability’ unlike obvious signs of physical disabilities.

I could get on my ‘soapbox’ or ‘speaker’s corner’ to advocate fairness for people with hearing disorders and disabilities of various types of hearing loss or deafness.

It is time for all of us to be heard and unite.

Like hearing loss, there are digestive disorders that are also "unseen disabilities". I have a family member who has a legitimate disability who tried with multiple physician letters to obtain a reasonable accommodation and was asked to sign a release of medical records. Totally unnecessary. That was the end of that job.
It is disheartening how some companies treat people with "unseen disabilities ".

@marem60 I fully understand your thoughts and comments. Hearing loss is invisible. It also creates difficulties with communication. Communication is key to relationships.

I learned more from involvement in the Hearing Loss Assn. of America (HLAA) than anywhere else. That learning came from meeting other people who fully understood what it was like to deal with this invisible disability; on the job, in relationships, and in life in general. It helps greatly to have your feelings of fear, frustration and fatigue validated.

You might want to see if there is a chapter of HLAA in your area. They start because people with hearing loss come together to talk and learn. http://www.hearingloss.org/chapters I have met so many people through HLAA involvement. Many have been research subjects in medicine and technology development. I hope you will share your experience with the bone anchored hearing aid. I know they have been extremely helpful to many. Also that some have not had such positive results.

The same goes for cochlear implants. The large majority of recipients have had positive life changing results. Cochlear implants are now being done for many people with single sided deafness. Should your BAHA not so as well as you hope it will, a CI may be another option down the road.

The best news is that research on hearing loss is being done now, when only a few decades ago very little was being done. HLAA was founded in 1979 and has pushed for research and development. Hearing aids have come a long way since advocacy started. Implantable devices were unheard of then. Many of the test subjects in early trials were encouraged to participate by HLAA.

As someone with bilateral progressive sensorineural hearing loss, I feel fortunate to benefit from things I was told would never happen in my lifetime. I use both a hearing aid and a cochlear implant. It has been a remarkable positive change from earlier days.

Good luck with the BAHA.

Julieo4, Hearing Loss Mentor

@dollyh Try Phonak I90 Sphere Ultra hearing aids. There is no perfect hearing aid but in my experience they are best hearing aids on the market.
Good luck.

@julieo4 Thanks to you and all the members of the hearing aid group, I am very happy with my new hearing aids. I first found this group several months ago when I was down to one outgrown OTC hearing aid (had 2 but lost one). I started with an audiologist at the major hospital where all my doctors are. My suspicions were verified that I had outgrown the OTCs and needed to satisfy my severe hearing loss. That didn't help me dole out a big chunk of my SS income. I first wrote to the group asking about non-profits that contribute refurbished hearing aids. That mainly verified some of the non-profits I had already found. I voice mailed a few
but only heard back from one. With my granddaughter's wedding coming up that didn't help my patience level. I turned to family and my daughter loaned me enough to go to Costco. A local audiologist had recommended the Philips Hearlink 9050 MiniRite at Costco. My research indicated these were almost identical to Intent by Opticon. Same manufacturer, same features. $1595 plus Costco membership. I have had them for more than a month and am thrilled!
Thanks again to Connect.Mayoclinic.org. @jutkele