One Person’s Lifelong Experience with Hearing Loss

By Dr. Bruce L. Douglas

I am a 93-year-old healthy adult with hearing loss. Many parts of my body don’t work perfectly right anymore, but my hearing loss is my biggest physical difficulty.

When it comes to hearing loss, I’ve been there and done that. Despite the fact that I am legally deaf, I can hear. Why? Because I’ve stubbornly fought back every time a hearing pitfall appeared in my path.

The reason I can hear is because I refuse to give into my disability. I try out every kind of useful assistive hearing device I can lay my hands on or is given to me by my Department of Veterans Affairs (VA) audiologist. I’ve become a hearing loss activist and fight for coiling of public facilities whenever I have the chance to do so. And I recently had a cochlear implant installed about a year ago.

As a boy, I remember always taking a seat at the front of the room, when most other kids would vie for one in the back, so they could cheat on exams without being seen by the teacher. I didn’t realize how poor my hearing was until I was reprimanded for inconspicuously (I thought) using a nail clipper under my desk in my elementary school classroom. I had no idea because I couldn’t hear it!

I tried to come to terms with my hearing loss for many years. I refused to hide in corners of rooms and restaurants, and dealt with my problem largely by disclosing my hearing loss to people and asking for their cooperation in our verbal relationships. My early hearing aids only allowed me to hear sounds but not comprehend them, so I learned to lip read and stare at my companions, often to the point of distraction.  

I have presbycusis, I’m suffering from acoustic trauma from my time in the Korean War, I have sensorineural deprivation, and I’ve experienced every imaginable kind of sound and sensation in the form of tinnitus.

Call us what you will, but don’t ignore us; don’t make fun of us. Most importantly, respect us; and treat us as equals. Be patient with us and accept the reality that we have an invisible condition that wove its way into our nervous system, most often beyond our control, and we do all we can to listen to you and respond to the best of our ability.

Dr. Bruce Douglas is a Professor of Health and Aging at the University of Illinois at Chicago School of Public Health. He is a participant in HHF’s Faces of Hearing Loss campaign.

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Stenting to Relieve One Specific Cause of Pulsatile Tinnitus

By Jayne Wallace for the Weill Cornell Medicine Brain and Spine Center

The Centers for Disease Control and Prevention estimates that 15 percent of the U.S. population, or 48 million people, have some type of tinnitus, hearing a ringing or buzzing in the absence of an external sound source.

Pulsatile tinnitus, in contrast, usually has a sound source. In these cases, affecting fewer than 10 percent of tinnitus patients, sounds are caused by turbulence in the blood flow around the ear. And among these cases, intracranial hypertension comprises about 8 percent of cases. This is when narrowing in one of the large veins in the brain causes a disturbance in the blood flow, leading to the pulsatile tinnitus.

Dural arteriovenous fistula, MRA showed only subtle alterations as a result of atypical flows in the right transverse sinus (arrow). Photo courtesy of Deutsches Ärzteblatt International.

“Traditionally there has been no good treatment for many of these patients who are told to learn to live with it,” says Athos Patsalides, M.D., an interventional neuroradiologist at New York City’s Weill Cornell Medicine Brain and Spine Center, where he also serves as an associate professor of radiology in neurological surgery.

Till now, available treatments—medication or more complicated surgery—were either ineffective or produced side effects and other problems just as bad or worse. “That’s why we started the clinical trials for venous sinus stenting, a minimally invasive procedure that is very effective in alleviating the narrowing in the vein,” says Patsalides, who pioneered the use of VSS to treat patients with idiopathic intracranial hypertension (IIH), also known as pseudotumor cerebri because the symptoms tend to mirror those of a brain tumor.

“Many IIH patients suffer from vision loss, headaches, and pulsatile tinnitus, and I saw a pattern with patients experiencing resolution of the pulsatile tinnitus immediately after VSS,” Patsalides says.

This led to the possibility of using VSS for selected patients with pulsatile tinnitus. After the Food and Drug Administration approved the clinical trial, it began in May 2016 and has an estimated completion date of January 2021.

“In the stenting procedure, with the patient under general anesthesia, we insert a tiny, soft catheter into a vein located in the upper part of the leg and thread it up to the affected vein in the brain,” Patsalides says.

A self-expanding stent is deployed into the narrowed segment of the vein, relieving the stenosis, restoring normal blood flow, and reducing or eliminating the pulsatile tinnitus. “Happily, the patient is typically discharged from the hospital within 24 to 48 hours,” he says.

To learn more, see weillcornellbrainandspine.org. Hearing Health Foundation notes that the trial is ongoing, and that the procedure is potentially able to address only one specific cause of pulsatile tinnitus and should not be taken as a solution for other forms of tinnitus, which often has no known cause.

You can empower work toward better treatments and cures for hearing loss and tinnitus. If you are able, please make a contribution today.

Intern Awareness: Reflections from HHF

By Vicky Chan, Lauren McGrath, and C. Adrean Mejia

This spring, Hearing Health Foundation (HHF) has been fortunate to welcome two outstanding, dedicated young professionals to its office: Vicky Chan, Copywriting Intern and C. Adrean Mejia, Social Media and Digital Communications Intern. In honor of Intern Awareness Month, celebrated each April, Vicky and Adrean reflected on their experiences as members of the small yet mighty HHF team under the supervision of Lauren McGrath, Marketing Manager.

Vicky, a recent graduate from Brooklyn College with a Bachelor’s Degree in English, believes that interning at HHF has equipped her with invaluable, real-world experience to grow as both a professional and an individual. So far, Vicky has utilized her skills by editing, researching, and conducting interviews for HHF’s blog and magazine. A former writing tutor, Vicky acknowledges that writing for an official publication like Hearing Health magazine is markedly different than completing a college professor’s assignment. Unlike academic essays, Vicky’s articles at HHF must fit the voice of an established organization. And to effectively craft interview-style stories, Vicky has learned to put herself in the subject’s position to determine how they want their story to be portrayed.

Adrean Mejia (left) interned with HHF as a Social Media and Digital Communications Intern this semester. Vicky Chan is a current Copywriting Intern.

“Everyone at HHF has been open to my questions or suggestions to create an inviting learning environment,” Vicky notes. She’s pleased that HHF has given her purpose and the responsibility to produce written content about hearing health awareness. “Each time I complete an article or see my name on the byline, I feel a sense of satisfaction and pride because it shows that I am working towards my career goal—one step at a time.” Vicky plans to pursue a career in the book publishing field.

Adrean, who will soon complete his Bachelor’s Degree in Corporate Communications from Baruch College, recently ended his internship feeling inspired by HHF’s mission and enlightened by what he’s learned. Adrean, speaking honestly about the experience, admits, “At the beginning, adapting to the nonprofit sector and understanding the concepts related to hearing health were challenges for me.”

Fortunately, the role turned out to be enjoyable for Adrean thanks to the accommodating, communicative staff. He is grateful for the experience, which has opened up his eyes to new horizons and enabled him to contribute to an inspiring mission. Now ready to begin his postcollegiate career, Adrean’s long-term professional goal is to achieve a high position in the entertainment and beauty industry to showcase his vision as an artist.

HHF is grateful to Vicky, Adrean, and the dozens of other interns who have offered their time and talents to further hearing loss research and awareness. The foundation looks forward to meeting its Summer 2018 interns, who will pursue projects related to awareness, advocacy, video production, communications, digital media, fundraising, and donor management. To learn about Fall 2018 opportunities, contact us at careers@hhf.org or visit www.hhf.org/join-our-team in August.

Making Entertainment Relatable and Accessible for More

By C. Adrean Mejia

Films, plays, and television series have long served as platforms to create awareness of important topics that have otherwise been kept out of the spotlight. Hearing loss is one example of such a topic.

As an organization that seeks to inform the public about the prevalence, prevention, and treatment of hearing loss, Hearing Health Foundation (HHF) applauds the growing prioritization of this issue in entertainment. We are pleased to know that the number of films featuring characters with hearing loss—played by actors with hearing loss—has risen with the years, generating greater public awareness of the third most common health condition in the United States. Complementing this trend of an increased presence of hearing loss on screen is the introduction of recent legislation to make entertainment more accessible to viewers with hearing loss.

Actors and characters with hearing loss expand society’s understanding of the condition. Hearing loss empowers abilities, emotions, and experiences unlike those of people with typical hearing. Some recent works with characters with hearing loss include the following:

The Silent Child tells the story of a profoundly deaf four-year-old girl who is about to attend a mainstream school with minimal support—until a social worker teaches her American Sign Language (ASL). The film communicates the disappointing statistic that over 78% of deaf children attend mainstream school without accommodations. A final comment that states that the creators “hope this film contributes in the fight for sign language to be recognized in every school across the globe.”

Children of a Lesser God, a play written in 1979, made its Broadway debut last April. The piece focuses on the professional and romantic relationship between a deaf janitor and a typical hearing teacher and shows the contrasting worlds off sound and silence. To Sarah, the janitor, deafness is an identity, not a defect.  

This Close is a TV series by two deaf writers and actors that narrates the true story of their lives. The show provides a close look of the everyday day life of two best friends, emphasizing their challenges and frustrations while highlighting the positive and beautiful things that their hearing loss brings to their existence.

HHF commends these and the artists behind similar works for the awareness their creations have generated. Likewise, the organization is proud to witness the introduction of new laws and procedures to make entertainment more accessible to the hearing loss community.

Credit: Naugatuck Patch

The American with Disabilities Act (ADA) first broke barriers by advocating for the requirement that all video program distributors close caption their TV shows. But it wasn’t until recently, with the help of technology, that these rules have expanded. On November 2016, the Final Rule on the ADA Title III was signed, requiring all American movie theaters to provide accessibility for captions. Large cinemas now offer assistive listening, closed captions, and descriptive audio.

Broadway, too, has made tremendous improvements. In 2016, the Theater Development Fund (TDF) and The Broadway League, launched www.theatreaccess.nyc, a website with information about tickets prices, dates and accommodations for theatergoers with disabilities. In addition, TDF now provides accessibility programs with open captioning and/or ASL at select Broadway performances.

Entertainment has made progress in becoming more inclusive for people with hearing loss since the implementation of these programs, but additional work is needed. Though mandating captioning at movie theaters represents great progress, other entertainment settings, including sports arenas and concert halls, must follow suit.

To optimize the listening experience for audience members with hearing loss, more must adopt the use of hearing loops, which transmit sound from a PA system to hearing aids and cochlear implants. In December 2017, the state of Minnesota passed a bill requiring hearing loops in public meeting spaces, taking after similar New York City legislation from earlier in 2017.

HHF looks forward to a day where no one must live with hearing loss. As long as hearing remains out of reach for tens of million Americans, fair accommodations are the most ethical choice.

Healthy Diet May Lower Risk of Hearing Loss in Women

Roland Eavey, M.D. (1987–88 ERG), the chair of the otolaryngology department at Vanderbilt University coauthored a report in The Journal of Nutrition on May 11, 2018, that showed women with healthier diets had a lower risk of hearing loss. The healthier diets emphasized fruits, vegetables, fish, seafood, nuts, beans, legumes, and olive oil over dairy, meat, and poultry. The longitudinal study spanning 22 years and including more than 70,000 women showed those with a better eating habits cut their risk for moderate or worse hearing loss by 30 percent. —Yishane Lee 

Hearing Loss Lives with Me

By Sonya Daniel

I was born with bilateral sensorineural hearing loss. I didn’t know the official term for it until 2008. When I was a kid in elementary school I passed every hearing test that the mothers in the PTA administered. I was a pretty clever little girl. I learned that every test has a visible “tell” and knew how to guess “right” on all of them. I never wanted to fail any test. I learned to read lips, and assumed everyone heard that annoying ringing constantly. That, of course isn’t true.

The tinnitus became too overwhelming to deal with everyday. I hadn’t had my ears tested since I was little, so I didn’t know what to expect. It was much worse than I had ever imagined it would be. And now it had a name. I left the audiologist knowing at some point I’d be completely deaf. But, no one knows when that might be. I was a mother to three young boys. I wondered how much longer I’d hear, “Mommy, I love you.” Or If they’d hold out long enough to hear their grown-up man voices. How much longer until I couldn’t hear music?

Music is my passion. In fact, it’s my chosen profession. I never remember wanting to do anything but be a musician in some capacity. My dad played the guitar. My mother said when I was little I would sit in front of him and touch his guitar and I would stand in front of the stereo and touch the speakers. I suppose I was trying to “hear” the music. I knew I’d go to college and major in music as a vocalist. I knew I wanted to share my love for music and teach others.

College was a very difficult and stressful time. There was a course called “Sight Singing and Ear Training” required to complete my Bachelor’s in Music. I mean, come on! Ear training? I struggled. Professors struggled to teach me. Some never gave up because it was apparent I wasn’t going anywhere.

I did get to teach music to every level. I can’t do that anymore, but I still do music everyday. Sometimes in life you have to know that there are things that your body just won’t let you do. I’d like to be a 6’0” tall, blonde supermodel, too. My body said “no” to that and I think I’m ok.      
Living with tinnitus and hearing loss can be overwhelming and difficult. I’m not as afraid of living this way as I used to be. Everyone has a thing. This is just mine. I like to say I don’t live with hearing loss; it lives with me.

My journey has brought me to the cochlear implant. I’m a candidate in the preliminary stages of that process. Technology changes so fast it’s hard to keep up. My current devices have stronger receiver tubes and ear molds.

That’s just my journey with my ears. My life isn’t defined by or consumed with my ears, although it’s felt that way at times. I’m constantly learning and growing. I’m getting stronger with each high and low I face. But, isn’t that just life?

Sonya Daniel is a musician/teacher, writer, and voiceover artist. She is a participant in HHF’s “Faces of Hearing Loss” campaign.

Receive updates on life-changing hearing research and resources by subscribing to HHF's free quarterly magazine and e-newsletter.

Clear Speech: It’s Not Just About Conversation

By Kathi Mestayer

In the Spring 2018 issue of Hearing Health, we talk about ways to help our conversational partners speak more clearly, so we can understand them better.

But what about public broadcast speech? It comes to us via phone, radio, television, and computer screen, as well as those echo-filled train stations, bus terminals, and airports. There’s room for improvement everywhere.

This digital oscilloscope representation of speech, with pauses, shows that gaps as short as a few milliseconds are used to separate words and syllables. According to Frank Musiek, Ph.D., CCC-A, a professor of speech, language and hearing sciences at the University of Arizona, people with some kinds of hearing difficulties require longer than normal gap intervals in order to perceive them.
Credit: Frank Musiek

In some cases, like Amtrak’s 30th Street Station in Philadelphia [LISTEN], clear speech is a real challenge. The beautiful space has towering cathedral ceilings, and is wildly reverberant, like a huge echo chamber. Even typical-hearing people can’t understand a word that comes over the PA system. Trust me; I’ve asked several times.

In that space, a large visual display in the center of the hall and the lines of people moving toward the boarding areas get the message across: It’s time to get on the train. I wonder why they even bother with the announcements, except that they signal that something is going on, so people will check the display.

Radio is very different, at least in my kitchen. There are no echoes, so I can enjoy listening to talk radio while I make my coffee in the morning. The other day, the broadcast about one of the station’s nonprofit supporters was described as: “…supporting creative people and defective institutions…”

Huh? That couldn’t be right. It took a few seconds for me to realize what had actually been said: “supporting creative people and effective institutions.” Inter-word pauses are one of the key characteristics of clear speech. A slightly longer pause between the words “and” and “effective” would, in this case, have done the trick.

In the meantime, I chuckle every time that segment airs (which is often), and wonder if anyone else thinks about the defective institutions!

Staff writer Kathi Mestayer serves on advisory boards for the Virginia Department for the Deaf and Hard of Hearing and the Greater Richmond, Virginia, chapter of the Hearing Loss Association of America.

Simple Treatment May Minimize Hearing Loss Caused by Loud Noises

John Oghalai, M.D. (a 1996–97 ERG scientist), of the University of Southern California, coauthored a May 7, 2018, study in the Proceedings of the National Academy of Sciences showing promise for preventing noise-induced hearing loss. Using a mouse model, the investigators found that in addition to immediate hair cell death after loud noise exposure, a fluid buildup in the inner ear occurs, eventually leading to nerve cell loss. Because the extra fluid shows a high potassium level, the researchers saw a method to rebalance the fluid by injecting a salt and sugar solution into the ear. Nerve cell loss was reduced by 45 to 64 percent, which the team says may preserve hearing. The team sees future applications for military service members exposed to blast trauma and patients with the hearing and balance disorder Ménière’s disease. —Y.L.

Novel Drug-Delivery Method to the Inner Ear

By Gary Polakovic, USC News

Researchers have developed a new approach to be able to repair cells deep inside the ear. The study, conducted by scientists at University of Southern California (USC) and Harvard University, demonstrates a novel way for a future drug to zero in on damaged nerves and cells inside the ear.

Credit: Matthew Pla Savino/USC News

“What’s new here is we figured out how to deliver a drug into the inner ear so it actually stays put and does what it’s supposed to do, and that’s novel,” says Charles E. McKenna, Ph.D., a corresponding author for the study and chemistry professor at the USC Dornsife College of Letters, Arts, and Sciences.

“Inside this part of the ear, there’s fluid constantly flowing that would sweep dissolved drugs away, but our new approach addresses that problem. This is a first for hearing loss and the ear,” McKenna adds. “It’s also important because it may be adaptable for other drugs that need to be applied within the inner ear.”

The paper was published April 4 in the journal Bioconjugate Chemistry. The authors include lead researcher Judith S. Kempfle, Ph.D., a 2011 and 2012 Emerging Research Grants scientist, as well as Hearing Restoration Project member Albert Edge, Ph.D., both at Harvard Medical School and The Eaton-Peabody Laboratories in Boston.

There are caveats. The research was conducted on animal tissues in a petri dish. It has not yet been tested in living animals or humans. Yet the researchers are hopeful given the similarities of cells and mechanisms involved. McKenna says since the technique works in the laboratory, the findings provide “strong preliminary evidence” it could work in living creatures. They are already planning the next phase involving animals and hearing loss.

The study breaks new ground because researchers developed a novel drug-delivery method. Specifically, it targets the cochlea, a snail-like structure in the inner ear where sensitive cells convey sound to the brain. Hearing loss occurs due to aging or exposure to noise at unsafe levels. Over time, hair-like sensory cells and bundles of neurons that transmit their vibrations break down, as do ribbon-like synapses, which connect the cells.

The researchers designed a molecule combining 7,8-dihydroxyflavone, which mimics a protein critical for development and function of the nervous system, and bisphosphonate, a type of drug that sticks to bones. This pairing delivered the breakthrough solution, the researchers say, as neurons responded to the molecule and regenerated synapses in mouse ear tissue. This led to the repair of the hair cells and neurons, which are essential to hearing.

“We’re not saying it’s a cure for hearing loss,” McKenna says. “It’s a proof of principle for a new approach that’s extremely promising. It’s an important step that offers a lot of hope.” Hearing loss affects two thirds of people over 70 years and 17 percent of all adults in the United States, and it is expected to nearly double in 40 years.

This is adapted from "Hearing Loss Study at USC, Harvard Shows Hope for Millions" on the USC News website. The authors of the April 4, 2018, Bioconjugate Chemistry study, “Bisphosphonate-Linked TrkB Agonist: Cochlea-Targeted Delivery of a Neurotrophic Agent as a Strategy for the Treatment of Hearing Loss,” include lead researcher Judith S. Kempfle, as well as Christine Hamadani, Nicholas Koen, Albert S. Edge, and David H. Jung of Harvard Medical School and The Eaton-Peabody Laboratories/Massachusetts Eye and Ear in Boston. Kempfle is also affiliated with the University of Tübingen Medical Center. Corresponding author Charles E. McKenna, as well as Kim Nguyen and Boris A. Kashemirov, are at USC Dornsife.

The research was supported by the American Academy of Otolaryngology–Head and Neck Surgery Herbert Silverstein Otology and Neurotology Research Award, an American Otological Society Research Grant, and a grant from the National Institute of Deafness and other Communicative Disorders (R01 DC007174).