Sudden Hearing Loss: Want to connect with others
Hello, I am new to this group. At age 56, I recently suddenly lost all hearing in my right ear, and I am trying to process this significant impact and find support from others who have experienced the same sudden hearing loss. I welcome your feedback. I am in good hands with very experienced doctors at Mass Eye and Ear in Boston, but my treatment plan has not worked to date (oral steroids and ear injections). I have profound loss in right ear, and above average hearing in my left ear. Thanks for your insight and support. Eileen
Interested in more discussions like this? Go to the Hearing Loss Support Group.
@wendymb Welcome to Mayo Clinic Connect. You woke up one day and felt as if you were hearing under water. You said that you grieved your hearing loss. Would you care telling me a little bit more about your grief process?
I lost the hearing in my left ear in 1987 from having an acoustic neuroma removed at Mayo in Rochester. It was a miracle at the time that the team of an ear doctor and neurosurgeon could remove it without damaging my facial nerve. Evidently today doctors can remove acoustic neuromas and save the ability of the person to hear if the nerve isn't too badly damaged to begin with. I'm sure I grieved the loss of hearing in that ear, but more I think I still grieve the loss of not being able to do things socially and professionally I had always done, like attend conferences because it was impossible to hear in crowded rooms with background noise, chair meetings because I couldn't follow side conversations, go out to noisy restaurants, etc. I've really become very good at compensating; but often rather than dealing with the frustrations of not being able to hear well, I tend to avoid problematic situations and am less social. I am also much more wary about being in crowds where I can't tell where people are around me. Every five years or so I get my hearing in my good ear checked and ask if there is a hearing aid that will help me; but so far all the audiologist has offered is a transmitter that will send sound from my dead ear over to my good one with annoying static, etc. I have faith someone will come up with something better than that — it's too hard to imagine engineers can design rockets to go into space but not develop a decent hearing aid for my condition. Fortunately, being deaf in one ear hasn't kept me from doing the things I love most like traveling in rural areas in Africa, South America and Asia, although not being able to hear properly has made learning and speaking foreign languages really hard. Nancy – nla4625 member of lung group on Mayo Connect
Thank you for asking. It has been a process and it’s ongoing, some four years later. I went from hearing relatively well with a tinge of tinnitus, to hearing nothing in my left hear, overwhelmingly loud tinnitus and that directional confusion – having no idea where a sound was coming from as I only heard out of the one ear. I grieved the loss of normal hearing, and mostly, the loss of absolute silence in my head. I’ll never “hear” silence again.
So well put, thank you. That is a huge issue, the social aspect. I will avoid crowds, loud restaurants, movie theaters, most group settings. I forgot about that, having been home for the last 10 Covid months!
I'm curious to know what device you were given to transfer sound from your deaf side to the hearing side? I think that may be a bicross hearing aid, but not sure. A BAHA can also do that. Regardless, it should be possible to get clear sound that way. Using a hearing loop, personal neckloop, etc. can enhance it further. I know several people through HLAA who have dealt with acoustic neuromas. Some more successful than others. It sounds like you get a lot of joy through travel. Good for you! PS: No question, binaural hearing is best but some of us just don't have that luxury.
After talking with the audiologist about options, I decided not to use anything. The hearing in my good ear is quite good, and I have learned to compensate well. The option presented at the time, ie several years ago, was to put a transmitter in my deaf ear and run a wire around the back of my head under my hair to transfer collected sound to my good ear. I know from listening to people with hearing aids talk about them that the technology has really improved to filter out background noise and reduce static; and I will ask about new technologies at my next hearing test. I had to laugh because at my last hearing test I mentioned that I wasn't hearing as well. The test results indicated otherwise (showed no change), and the audiologist said she noticed people were really mumbling more. Someone from a recent post said something that has been so important for me in getting along with being deaf in one ear, ie telling people I have a problem, asking for help and letting them know what they can do to help me. For example, in a meeting where you go around the table and introduce yourselves, I always include something about being deaf in my left ear and tell people if I don't respond when they talk to me it is because I don't hear them, ie I'm not being rude. Co-workers, friends, and family automatically walk with me on my right side so I can hear them, make sure I'm looking at them when they are talking, repeat something if they sense I haven't heard it properly, and wait for me to sit where I need to at a table or in a room to hear most effectively before they sit down. Their thoughtfulness really enables me to get along pretty well. As a result, after my acoustic neuroma surgery and the loss of hearing in my left ear, I went to graduate school, worked in my chosen profession, volunteered, and traveled…all the things I would have done with two functioning ears with needed adjustments. At age 74 looking back I feel pretty lucky actually.
Yup. That transmitter thing you mention is exactly what I ended up with back in around 1973. The wire behind my hair at the back of my head. I waited for my hair to grow long enough to cover it up. It did help. Those devices are all wireless BlueTooth devices now. In all my work and social life I have tried very hard to gently explain my unique needs to others. Most people are helpful; some are not. We are dealing with an invisible disability so people forget. Educating others and advocating for ourselves without being nasty about it is the way to go. You are very fortunate to have one 'good ear'. 🙂
What a good point re having one good ear! I hadn't even thought about that and what a blessing it is and has been. Thank you for reminding me and thanks for mentoring on this site. I didn't know about Mayo Connect all the years I lived in southern MN and received medical treatment at the Mayo Clinic but found it recently when doing an internet search for a lung problem I'm having (paralyzed left diaphragm). What a wonderful resource! I have really learned a lot of valuable information from various discussion groups. Thanks again! Nancy
if I am not to forward here, I think you should explore the B-Cros option. I too am deaf in my right ear (since 4 years of age- almost 60 years and have profound loss in the other – related to aging / perhaps overuse) and got my first pair of Phonax Bi-Cros 6 years ago. That did not work out well and I was going to give up. However, I did op, as a trial, for the next generation of Phoinax Bi-Cros (upgraded technology) and the difference is night and day. Although I still cannot echo locate, I can hear in the vehicle while driving (good ear was always to window), no longer search for "seating" that gave me the best chance to hear and other benefits. I am kind of bewildered that your audiologist would recommend nothing – my audiologist was insistent that my quality of life would improve and she was right. I am fortunate that my wife's health insurer pays for hearing aids (every four years).
Thanks a million for this information. I'll definitely check it out and other interesting things I'm learning from these posts about technologies that might help me. I'd never heard about many of the things Julie has mentioned in several of her posts. I've moved from southern MN to PA so will have to find a new audiologist to visit this summer. I'll go armed with good information. Thanks again! Nancy