Sensorineural hearing loss is frustrating. It is hard to diagnose and the cause is often difficult to determine. There are few, if any, biological treatment options. There is no cure and most of the time, what you hear from doctors, even some of the best doctors, is, “I’m sorry, there is nothing I can do.” With an eye toward patient-centered care, I think we should be able to expect more.
I have an adult onset genetic hearing loss that started in my mid-20s. When I first noticed it, I was not surprised, since my father and grandmother had trouble hearing, but I was also not happy. In fact, I was in denial and did my very best to ignore it and blame others for my inability to hear. This one mumbles, or that one always talks with food in his mouth, for example.
My family told me that we had “nerve hearing loss” and there was nothing that could be done about it, so when I finally decided to get a hearing test, I skipped the doctor and went right to an audiologist. This was in 1994. Five years later, I broke down and got my first pair of hearing aids. I still had not visited a doctor to evaluate my hearing loss.
Fast-forward eleven years to 2010. I was now a parent of two young children and a board member of Hearing Health Foundation (called Deafness Research Foundation at the time). I decided it was time to learn more about my hearing loss, especially since it was genetic. Had I passed it onto my own children? Perhaps after all this time, there was something that could be done for this type of hearing loss.
Unfortunately, things had not changed very much. The outstanding and highly recommended ENT that I visited confirmed that I had a sensorineural hearing loss (at least it was a fancier word!) and that there was nothing she could do. I was advised to continue seeing my audiologist to treat my condition with hearing aids. End of story, but not a satisfying one.
Recently, I decided to try again. I had shared my audiogram with a prominent scientist involved in hearing research, and he suggested a possible diagnosis. I made an appointment with a doctor to confirm or deny the scientist’s hunch. Once again, I hope things have changed, that progress has been made, and there might be something that can be done to help me with my hearing loss, which has now progressed to a 50 dB loss in the mid-range frequencies.
I share my story with you, not to complain, and not to belittle the great work that is being done by the doctors in this field, but to provide the patient’s perspective. From the patient’s point of view, it is often a very big step coming to see the doctor in the first place. Stigma and denial are so common with hearing loss that making the first appointment can take awhile. In fact, according to Hearing Loss Association of American (HLAA), on average, it takes people seven years from the time they think they might have a hearing loss to the time they seek treatment.
Once we have mustered up the courage to get there, we are hoping for information, not more uncertainty. While the science may still be inconclusive and there is nothing that can be done medically, there are many other things that CAN be done to help someone with hearing loss and to keep him or her motivated and engaged in seeking treatment.
What can a doctor do to be more patient-centered from the patient’s point of view?
- Improve The Entry Experience: I realize a doctor’s office is very busy, with appointments often not available for several weeks, but the receptionist needs to treat new patients with respect and empathy. Hearing loss so often goes untreated and a rude receptionist can be off-putting to someone who may have been building up the courage to call for this appointment for some time – sometimes years! Speaking slowly and clearly is also very much appreciated by people with hearing issues.
- Provide Additional Resources for Information and Support: While there may not be much medical information available, providing brochures or links to leading advocacy organizations for those with hearing loss would be very helpful. Is there an HLAA chapter or the equivalent in your area? Find out and point patients in that direction.
- Put It In Writing: It is very difficult for someone with hearing loss to process information rapidly, particularly if unfamiliar or scientific words are used. Providing a written report of his or her visit (this can be a simple checklist you fill out real time) can help the patient take more away from the appointment. This will also help the patient better communicate the doctor’s recommendations to an audiologist or family member.
- Stay Current On Scientific Research: While there may not be a cure today, providing links or information on scientific research that is underway can provide hope and support to someone suffering from hearing loss. Who knows – one of your patients may be a big potential funder of research.
- Explain The Risks Of Untreated Hearing Loss: While there may not be a biological solution for your patient, encourage them to seek treatment with technology. Explaining the risks of untreated hearing loss, particularly its link to dementia, can be highly motivating to someone to continue with or to start treatment.
This article was originally published in ENT and Audiology News, Vol 24 No 6, January/February 2016; pp 48-49. Reproduced with kind permission of Pinpoint Scotland Ltd.
The last sentence in this blog particularly hits home for me. I knew my husband had a hearing loss although he could “live with it.” By the time he was evaluated and prescribed hearing aids the dementia was apparent. He is now being treated as successfully as is possible although the memory loss is permanent. I am in process of starting a chapter of HLAA in our area to get the word out and make folks aware of the peripheral effects of untreated hearing loss as well as encourage others to at least look into any suspicions about their or a loved one’s hearing loss. As funny as the comments that come as a result of not hearing well may seem, hearing loss is no joke.
Thank you for sharing your experience. Good luck getting the HLAA chapter off the ground. They can be a great support network!
I think the article is interesting and useful. But it should be emphasized that the statement “there is nothing I can do” applies only to the medical profession. That is to say, at present, there is no cure for sensorineural hearing loss. There are, however, things that can and should be done — by the person experiencing hearing loss in consultation with an audiologist, speech pathologist, psychologist and/or other professionals, and support groups. I am curious about the relationship between untreated hearing loss and dementia. Which way does the causation go? I can well understand that people who ignore their hearing loss may well become socially isolated, sometimes leading to depression . But dementia is a brain thing. As such, it could be that dementia results in reduced ability of the brain to process auditory information. That’s a form of hearing loss. So, does untreated hearing loss cause dementia? Or does dementia result in hearing loss? Or do we know?
Yes, I agree, it is only medical. There are many things that can be done as I discuss in the article. A good link to learn more about the relationship between dementia and hearing loss is http://www.hopkinsmedicine.org/news/media/releases/hearing_loss_and_dementia_linked_in_study. The causation is not yet known for sure.
Hi I am really struggling with my ears. Saw an audiologist some time ago and was told I don’t need hearing aids. I am now suffering so badly with tinnitus that I am struggling to sleep at night, some nights fall into exhausted sleep in the early hours of the morning. It is driving me mad.
Thanks for sharing your experience. I am sorry to hear that you are suffering. Maybe you should try a different audiologist. My hearing aids help me quite a bit with my tinnitus. That doesn’t work for everyone, but it is worth trying again.
This is a great article, thank you. As someone who also lives with hearing loss, I would love to see health providers pay more attention to this issue. I work in public health, and have often worked with providers on integration projects where new areas are being addressed–right now I am working with a community where the primary care practice is integrating children’s oral health into its education, prevention and treatment (mandated under the Affordable Care Act). The same has happened with mental health concerns. I really hope (and think it’s starting to happen) hearing loss comes to the fore in federal policy/providers’ offices, because that’s where the tsunami of boomer patients will look for help–as you infer. I hope someday we have real education and care coordination for this issue in doctors’ offices–as is provided for chronic diseases of every kind. Love your blog!
I agree! I hope the tide is changing as you say. It really needs to given the demographic trends. Thank you for sharing your thoughts.
Thank you for this excellent article. I have lived with hearing loss most of my life, and only recently decided I should become an activist!
Good for you! The cause needs all the help it can get. Thanks for reading.
Thanks for outlining the issues with hearing loss. Like many of your readers, my hearing is okay but my husband’s is in decline. We’ve gone from accusations that I’m mumbling to, finally, his use of a hearing aid. It’s a help but even with it, the loss of hearing has meant a lot of adjustments and changes in our lives.
Thanks for sharing your experience. It changes things for everyone involved.
I think what you say about a more patient-friendly approach, especially at the point of entry into the system, is something which could do with being taken on board with regard to all manner of conditions and disorders. I work with people who have diabetes, screening their eyes to try to safeguard against sight threatening retinopathy, and the proliferation of ignorance which is out there, is astonishing. It seems that upon diagnosis, not enough is done to engage people in really taking their condition on board, and paying heed to it.
Great point. I agree!
Having a good audiologist is key. The first one that ever fitted me for hearing aids, at a hospital-based establishment with a good reputation, missed the mark completely. When I kept hearing high pitched hisses that were driving me crazy in every setting, she insisted it was the sound of things like fans and motors that I had lost the capacity to hear anymore and to “stop being a baby and just get over it”. When I insisted there was a problem, she became angry and rude to me and tried to intimidate me. I gave them back and did not return again for years. I can only imagine how many patients this has happened to and how many give up in frustration and never return.
It turns out I was hearing the hiss of the circuits in the oversized, uncomfortable full shell analog hearing aid she had mis-fitted me with.
Years later I did return (thankfully she had been “let go”) and met an audiologist who has continued to listen to the patient, readjust and go the extra mile to make sure I am hearing as well as I can with given technology. My motto since – Question Authority….. always.
Great advice. Thanks for sharing it.
My son had a water accident that resulted in a ruptured (shattered, really) ear drum a few years ago.
The docs patched as they could. He’s 19 now and has tinnitus and hearing loss in that ear. He’s frustrated by this and the docs are just waiting to see if it will heal itself.
I am sorry to hear that. Is there anything surgical they can do to help repair the eardrum?
Wondering if anyone can comment/assist on this: There are many products claiming to assist those with HL but I find wading through them all very overwhelming.
For instance, I had been hoping to find headphones for my landline phone (which has captions–which isn’t so perfect either) whereby the sound would be fully directed into my ears. I searched a well known company that had myriad number of items for various HL needs and ordered an item. Surprisingly this headphone set sat too loosely over my head to firmly direct sound. Adjusting wasn’t helpful.
I couldn’t understand how anyone with HL could use this.
So here’s my bottom line question/problem: There are so many products that have the potential of being effective but it’s ridiculously tedious and inconvenient to order, try and return over and over again.
I’d LOVE there to be some sort of HL conference with TABLE with sample products that people can TRY OUT right then and there with professionals at hand.
I haven’t heard of such a fair but I’d venture to say the interest would be high. Any powers that be interested in organizing such an event?
This is such a good suggestion. The thing that may come closest that I have seen is the Exhibit Hall at the HLAA annual convention. This year it is in June in DC. http://www.hearingloss.org/sites/default/files/docs/Schedule-at-a-glance_preliminary.pdf
We need this in the NY area! ASAP!
Anyone up for doing this?
Also, those conferences are usually for the professional. I think it’s time for a fair specifically geared toward the HL consumer/client. With proper marketing, the event can hold audiology screenings, support workshops, employment strategies, agency contacts and perhaps employers who understand our needs and are ready to become further involved.
Just brain storming here…
Great ideas. Thanks for adding them to the dialogue. I only went to the HLAA convention once, but it was very consumer oriented. Check out the workshop schedule. http://www.hearingloss.org/sites/default/files/docs/Workshop%20Schedule-Educational%20workshops_1.pdf
An up-date: HLAA convention is in Minneapolis in 2018. Sign-ups are cheaper before March for tickets/rooms etc.
Thanks for sharing the information Barbara.