Sudden Hearing Loss: Want to connect with others

Hearing loss is an issue that deserves far more attention than it gets. Only those who have it understand the frustration, the fear and the fatigue it brings. It's disheartening to hear stories about medical professionals who disregard all this, but it's very common.

It's frustrating to hear stories about sudden hearing loss that treatment hasn't helped, often because treatment wasn't given on time. It's impossible to get in to see an appropriate medical professional within hours of this happening. And, people who experience SSHL don't know that time is of the essence. Who would tell them?

Do you ever hear about this on the news? Probably not. Does any advertising on TV or in periodicals ever discuss this? Rarely. People in general don't understand much about hearing loss. We are bombarded with false advertising on TV about magic hearing aids 'so small no one will know you're wearing them', etc. Let's market denial so people are hesitant to get help. Doesn't that give the message that we shouldn't even talk about it?

Glad this discussion is going on right now. The good news is that cochlear implants can usually bring back hearing when SSHL happens. The reality is that hearing will probably never be quite the same. But, the human brain is capable of learning to hear differently through these implants. And, the implanted technology is getting better all the time.

Nevertheless, people who go through the CI route are still pioneers in the process. That's why it keeps getting better. Although my hearing loss was of the progressive variety, it is sensorineural. Without my cochlear implant, which was done in 2005, I am deaf. I am extremely thankful for the 'pioneers' who went before me.

People need to talk more about hearing loss. Be open about it and share experiences like you are doing here on Mayo Clinic Connect. I always recommend HLAA because active participation in in HLAA chapters provides the opportunity to meet and share experiences with people who understand. Having your feelings and frustrations validated is extremely helpful.

Back to the beginning....it is simply inexcusable for an ENT or an audiologist to treat hearing loss with a shrug. The least they can do if their kind of medical intervention isn't an option is to share information that may be. And to do some counseling. The stress that comes with hearing loss is real and can be extremely damaging.

Well being matters. Do any of the pros spend time counseling their patients? Coping strategies? Couples Counseling? Stress Management?

Thank you so much for your words! I first felt failed because no one told me or acted like sudden hearing loss was a medical emergency as it clearly is. Even I didn't realize it. I was concerned but everyone around me either thought it was allergies or that it would clear up in a few days like a cold. Then once I made it to the ENT he offered zero information or help outside of prescribing the steroids or performing the injections. He should be aware of the difference between gradual hearing loss and sudden hearing loss, as well as tinnitus and loudness hyperacusis. If he's not willing to spend time counseling and educating and offering options (should be) he should at least have info handouts to share. ALL the info I received was thru my own research on the internet. It's so much more than suddenly not hearing thru 1 ear. It's the changes your brain makes in response. The tinnitus that often occurs, the sensitivity to sound that springs up in your good ear, the loss of directionality which breeds fear. The shock, disbelief and grief. Also because the info just isn't out there I had friends & family saying "no worries, just get a hearing aid, my husband-brother-friend have one, works great, I'll get you the name of it. Lots of people I know wear hearing aids and they are so small you can't even see them. Get over it. Want to meet for lunch?" Hearing loss is hearing loss but I keep having to explain that when it happens suddenly there are differences, at least initially. Without the internet and forums like these I don't know what I would have done. It takes time. It has been almost 3 months since it happened to me and while I've given up on treatments I am aggressively pursuing info, acceptance, options to help me hear as well as possible, and the courage to get back out there among the living. I thank you all for sharing. It helps a lot.

It sounds as if you are dealing with it. You're seeking information and are willing to talk about it. Keep that up.

There are hearing aids that are called bi-cross hearing instruments. Bi-cross transfers sound from the 'bad' side to the 'good' side via BlueTooth technology. That provides bilateral hearing so minimizes the issue of not knowing where sound is coming from. It also helps socially because you don't have to constantly be turning your 'good' ear to the person you want to hear.

If your 'good' ear is truly GOOD, this may be of possible help to you. Did anyone tell you about bi-cross hearing instruments?

Here is an interesting article on the nee to recognize hearing loss as a major health issue.
https://jamanetwork.com/journals/jama/articlepdf/2789772/jama_tonelli_2022_vp_220021_1647557320.94833.pdf

The first ENT that I went to after my SSHL treated me the same way. Kind of like, your hearing is gone, I don't know why, have a nice day. I was crushed. I knew I had to take control of the situation and started exploring technology solutions and I made an appointment with a better doctor in the large city that's about two hours from where I live. While I waited for my appointment, I kept exploring options and had decided that I wanted the BoneBridge bone-conduction device, if it was an appropriate option for me. When I went to the new doctor, I learned that they didn't carry that particular device, but they did carry the Osia 2, which was very similar but made by a different company. So I was pretty happy with things from that point on. (thankfully!!)

Hi Stephanie. I'm sorry you were also treated that way. A little compassion, understanding, and info sharing would go a long way. It does help to find others who have experienced same. It helped me to find your posts. I see the audiologist again tomorrow and I'm hoping that I'm a good candidate for the Osia. Have you been pleased with yours? Any warnings or suggestions in regards to the Osia?

Thank you Julie. I did ask the ENT Dr about the Bi-cros and he just said "people don't usually like them because you have to wear 2 hearing aids, and put something in your good ear" but I will talk to the audiologist tomorrow.

I'm just chuckling a bit because most people with sensorineural hearing loss do wear 2 hearing aids. So what's the big deal? That's kind of an attitude thing from the ENT that creates all that denial junk. IMHO.

My first hearing aid was a bicross because I didn't want to buy 2 hearing aids! I went with the 'bi'. It was OK, but over time the unaided ear started to deteriorate. That ear was unaided for years. It was like atrophy in an unused muscle. That ear wasn't hearing so it stopped trying to hear.

Fortunately, a few years prior to considering a cochlear implant, an audiologist advised me to rehab that ear with a hearing aid I could use to listen to audio books. I used a hearing aid with a telecoil to do that. Over a 2 year time span it rehabbed and caught up to the ear that had been aided. It was pretty remarkable. I will be ever grateful to audiologist, Mark Ross, who gave me that advice. Dr. Ross was on the national board of HLAA with me at that time. He was a well known researcher and writer. Again, I was lucky. My CI was done on that rehabbed ear and has worked remarkably well working together with the long time aided ear. I did start out with the bi-cross though.

So many hearing loss stories out there. It's good to discuss them openly.

Yes well he is the ENT who volunteered pretty much no info. He only offered that response when I asked about the bi-cross specifically when I was asking about options other than his "see you in 6 months for check up". His answer could be biased as I found out he does perform Baha surgery (the one with the abutment). I'm a little confused. So does the bi cross always require 2 hearing aids or not always?

A bi-cross is one hearing aid, but it has pieces that fit on both ears, so looks like 2 hearing aids. The side on the deaf ear is a transmitter that sends sound to the hearing aid that is fit on the good side. Years ago, the 2 pieces were attached by a cord that ran behind a person's head. Today they are wireless.

It's interesting. A lot of people who fit hearing aids should recommend cochlear implants to their patients who have profound hearing loss. Unfortunately, many don't do that. Sometimes the 'it's a business decision' can interfere with what's best for the patient/customer.

I don't mean to be negative about providers. Most have their patient's best interest in mind. But, the landscape is changing for the hearing aid industry. Lots of changes coming when 'over the counter' hearing aids enter the market sometime later this year.