By Michael Miles
I was first diagnosed with mild hearing loss around 1999, when I was in my early 40s. At the time I was the CFO of a publicly held company and was attending a lot of board meetings. As the youngest officer of the company, I typically sat at the far end of the board table, away from where the CEO and chairman sat. However, I started noticing that I was missing a few words here and there, including one time when they were directed at me. So I gradually started moving toward the middle of the table at future meetings. But I didn’t think it was serious enough to get hearing aids.
I went back to school in 2004 to become a math teacher and noticed I was not hearing a lot of the lectures clearly unless I was near the front of the class. My wife also had noticed a change in my hearing. So I went to an audiologist, and after reviewing my audiogram results she sent me to the ENT (ear, nose, and throat specialist) at her practice. The ENT requested a CT scan, and it turned out I had otosclerosis in both ears.
Otosclerosis is a bony overgrowth in the middle ear that prevents the ear from hearing properly. Thought to have a genetic component, this cause of hearing loss is not that common and I next saw an otolaryngologist experienced in treating otosclerosis, Thomas Willcox, M.D., at Jefferson University Hospital in Philadelphia.
The stapes bone in my left ear collapsed first, and I had a successful stapedectomy on that ear in June 2006 performed by Dr. Willcox. The stapes in the right ear collapsed in 2015 and another stapedectomy was done. I had to go back in a few months because I was hearing a clicking in the ear, but the surgeon corrected it and I was fine afterward.
As a result of the otosclerosis, I have a mixed hearing loss, a combination of conductive (middle ear) and sensorineural (inner ear) hearing loss. The conductive loss has been handled pretty well by hearing aids. But the sensorineural loss has gotten worse and I have progressed to wearing the most powerful aids I can find to handle soft voices and noisy environments.
When I was diagnosed, I knew no one personally with a hearing loss, so I was pretty much on my own for a few years. Then I learned about the Hearing Loss Association of America (HLAA) in my internet searches for hearing support or education groups. That was when my hearing loss world really changed.
I started attending the HLAA’s annual convention, meeting others with hearing loss and products to help me. I joined a local chapter and the Pennsylvania office, so I now had support groups where I could ask questions and get advice. Little by little I learned more about my condition and the assistive technology to help me (my current favorite are the speech-to-text apps on smartphones). I became more involved with the HLAA, conducting outreach at senior events as well as giving presentations at senior centers.
It was at an HLAA convention where I first heard someone from Hearing Health Foundation talk about the Hearing Restoration Project (HRP). I was hooked. I love learning about new technology and research and the potential for something to help us in the future.
This past October I watched the inaugural Hearing Health Hour webinar on age-related hearing loss, and in October 2019 I came to New York City to attend the New York Academy of Sciences conference on the topic of hair cell regeneration, where Peter G. Barr-Gillespie, Ph.D., the head of the HRP, was the keynote speaker. I promote HHF’s funded research in my presentations as they are topics of interest and I believe it gives our community hope for new treatments.
If I had found a hearing loss community earlier on, I would have been more open with the students at the all-girls high school where I taught instead of trying to hide my hearing aids like I did for eight years. I wore in-the-canal models when I probably should have been using more powerful over-the-ear models due to the severity of my loss. Eventually because of my declining hearing, I decided to stop teaching, but my volunteer work with the HLAA and on hearing loss-related blogs allows me to continue to give back to the community. I am very happy trying to educate others who are in the same situation I was in, when I had no one to turn to for information or support.
Like others with hearing loss I still sometimes have to fake being able to fully hear, but I have gained much more confidence and do not hesitate to ask people to recognize my hearing loss and make accommodations. I stay current on the newest technology for hearing loss and look forward to receiving this magazine to catch up on the HRP’s research efforts and each year’s new Emerging Research Grants scientists.
I am lucky that after my initial diagnosis I didn’t ignore my hearing loss for too long and was able to treat it. It pains me to hear of those who have had hearing problems for years yet procrastinate about getting treated using hearing aids, or who cannot afford it. Cost is a big stumbling block and I hope that Congress wakes up to the needs of such a large part of our society, especially seniors, whose everyday lives are affected by this hidden disability.
With the research being funded by HHF and the new technology being made available to those with hearing loss, I am confident that the quality of life for people with all levels of hearing loss will continue to improve.
Michael Miles lives in Pennsylvania.
