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Blog — Hearing Health Foundation

Diagnosis

IT HAPPENED TO ME: I'm 27 and I Just Got Hearing Aids

By Sarah Klegman

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life.

After an adverse reaction to medication left me with Tinnitus (a constant ringing in your ears, it’s lovely), I was put through a series of hearing tests. I sat in a vault-like room listening for beeps of varying volume. Afterward, they told me that I had high frequency hearing loss, and I’d be a great candidate for hearing aids.

Urm, no, I do not need those.

Big, clunky, ugly pieces of wannabe skin-color machinery, shoved into wax-filled hairy old-man-ears... I don’t need them. It’s just that I have to read lips in loud places and my close friends know to stand on my left side because my right ear is worse than my left and sometimes I miss important things in meetings and on phone calls.

Ooooooh.

I walk into the hearing aid place my insurance company recommended (but doesn’t cover). The audiologist brings me into his office and runs through what feels like his usual spiel. After tapping his fingers on the keyboard for a minute, he hands me a pair of ear buds that are wired to his computer.

“You’ll hear static for a moment before they turn on.”

I put them in, and hear the static like he says. Then the static stops, and suddenly, there are… sounds.

Everywhere. Everything has a sound. It’s like I can see the space around me, but with my ears. I hear the hum of his computer, the sound of his pants on his office chair as he shifts his position to look closer at the screen.

He picks up a piece of paper and I hear it. I hear a piece of paper. It crinkles and as his fingers move across it, I can hear the texture.

My eyes start uncontrollably watering as I realize how much I have to experience and hear. I shuffle my feet on the floor, taking so much joy in hearing the synthetic threads against my shoes. I kick my purse with my foot and hear everything inside move. It's like a drug, and I am greedy for it.

He tells me that I can take them off… but I stall, asking him questions so I can keep them in a bit longer.

“Where are these manufactured? How long have you been an audiologist? Have you ever been to the restaurant next door?”

We go over pricing (average being $4k+) and I leave his office seeking out a second opinion.

I did some Googling and landed on the website of Dr. Stephen Kirsch, an audiologist just up the street. His website said that he and his wife spend time outfitting children in Africa with hearing aids. Um, yes. I like him already. I call and make an appointment.

He welcomes me into his office and I’m feeling anxious, but trying to play it cool, wondering when I’ll get to put hearing aids in my ears again. We start talking about my hearing loss, and then he asks me if I want to try some out. “YES, YES I DO.”

His aren’t wired to a computer like the other guy’s. They’re just regular hearing aids, and they’re TINY. Like, I could accidentally swallow them in a salad and not notice, tiny.

He helps me put them in, and my eyes widen, searching the room for something new to hear.

“They’re not on yet,” he tells me. “Oh,” I sheepishly respond.

Just like the other guy, he tells me I’ll hear static for a minute while he adjusts things. Then, like before, my ears switch on. I light up, and this time, so does the other person in the room. He taps his fingers on his desk; he picks up a piece of paper and shakes it around, indulging my greediness for sound.

He tells me some things to expect. How I’ll get used to hearing my own voice, it might be overwhelming in loud places, and… I’ll be able to accurately represent myself. I hadn’t thought of that last one, and I didn’t fully understand it at the time, but I would come to.

He lets me take a pair to test drive. I get in my car, smiling like an excited dog following new smells and I turn on some music. A Mumford and Sons song comes on and I have what can only be described as an eargasm. The violin. I can hear the violin! I didn’t even know there was a violin in this song!

I have high frequency hearing loss, so the higher pitch the sound, the less I can hear it. Harmonies became richer. I could hear the strings of the guitar. The fibers. Then some less exciting realizations came to me – like how those whispered conversations probably weren’t that quiet, my laugh really is that loud, and those toots may not have been silent.

Oops.

When I was younger, doctors said that I had premature hearing loss, but that sentence was never finished with, “and hearing aids could make a significant improvement on your life.” 

So, my family and friends continued thinking of me as a “bad listener.” Which, I guess, technically, I was -- but being called a bad listener hit me in the heart. To me, they were calling me self-absorbed and disinterested.

I know I’m not perfect, but most of the time I was trying. However, just straining to hear someone can come off as unwelcoming. Your face scrunches up, your eyebrows furrow, and your neck cranes out -- body language that reads negatively. So, after a while, I stopped asking people to repeat themselves as often.

“What? Oh… you already repeated it twice, and if I ask once more, you’ll scream-repeat it at me angrily? Oh, um, yeah, no, I totally heard you.”

I asked Dr. Kirsch if I could pick his brain for this article and he enthusiastically agreed. While chatting, I told him about being called a bad listener. He paused, looked me in the eye and said, “But you’re a great listener.” My heart swelled. 

He continued, “You are a great listener largely because you and others with hearing loss pay such close attention to body language and facial expressions which tell more than the words on their own.”

He told me about a lawyer he worked with. The lawyer worried that if people noticed his hearing aids in the courtroom, it would be perceived as a sign of weakness and inspire doubt. 

Unfortunately, because of all the stigma, a lot of people who could use hearing aids don’t get them. As few as 1 in 5 people who have hearing loss actually do something about it.

My first week with hearing aids, I wore them to a beach house with some friends. They were all very happy for me, but I kept hearing this static. Something must be wrong with the hearing aids, I thought.

“There! Did anyone hear that?!”

Nope.

“That?!”

Nope.

Then my friend Sally goes, “Wait a second. Do you hear it right… now?”

“Yes!”

Another moment passes, “And… now?”

“Yes!!”

“Sarah,” she says, “those are waves. You’re hearing the ocean.”

Later, I had a meeting with this guy. I had my hearing aids turned up so I wouldn’t miss anything, so they were even more susceptible to feedback. I hugged him goodbye, his ear covered mine, and my hearing aid made a high-pitched noise (like when a microphone gets in front of a speaker). The guy pulled back and looked at me weird.

“Oh, could you hear that, too?” I asked.

“Yeah, what was it?”

I said, “I – AM – A – ROBOT,” and did the robot.

I thought it was hilarious.

During our chat, I jokingly ask Dr. Kirsch when I should tell a date that I have hearing aids. He sweetly says that I should tell them around the time we start to really care for each other. That’s great advice. 

More likely, I’ll end up stalling until a moment of natural clumsiness occurs, wherein my hearing aids will either fall out, or start blasting audible feedback. Ta-da! 

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life. I believe that shamelessly showing your vulnerabilities can make you an even more likable person. Living honestly inspires others to live honestly.

That’s what Dr. Kirsch meant about being your authentic self. “You can't fully communicate who you are when you can't hear what people are saying to you. People won't listen if they feel like they aren't being heard.”

You strain to hear someone speak, you miss important words -- and as entertaining your shriek may be at the time -- you’re startled when you didn’t hear a friend walk in the room. You’re always on edge.

I hope this reaches people with hearing loss (I’m looking at you, dear friend in denial) and helps them in getting over the stigma and their hang-ups about looking old or handicapped; getting hearing aids can significantly improve your quality of life and how you communicate with the world. It also makes life a bit easier on your family and friends, too. 

Now, when I forget “my ears,” my friends notice. I’ll ask “What?” and they’ll say with a loving/scolding tone, “Are your ears in?”

Originally published on xoJane and republished here with their permission.

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Support HHF This Mother's Day

By Heather Friedman

Laura (second from left) with her sister in-law Liza, her maternal Grandmother and Aunt, with Heather on the far right.

Laura (second from left) with her sister in-law Liza, her maternal Grandmother and Aunt, with Heather on the far right.

For three and a half years my daughter, Laura, attempted to hear and to be understood. As her mother, I struggled to make sense of her difficulties—which I knew in my heart did not stem from developmental or attention deficit disorders.

Prior to her diagnoses at three and a half, Laura had a very difficult time communicating. I took her to specialists and started her on speech therapy, with little result. When Laura was finally diagnosed and fitted with hearing aids, things began to fall into place.

When Laura finally received the correct diagnosis—hearing loss—I was relieved. Parents and children should not have to wait over three years to have this condition detected, struggling all the while with delays hampering social and emotional growth. Parents should not have to go through the pain of knowing something is holding their baby back, when it could be so easily detected.

In 1993, four years after Laura was born, Hearing Health Foundation’s steadfast advocacy work led to the passing of Universal Newborn Hearing Screening Legislation. As a result—today, 97% of American babies are tested for hearing loss at birth. This means newborns with hearing loss can immediately get the help they need through technology such as hearing aids and cochlear implants, as well as speech and language therapy. This means an easier life, from birth, for children with hearing loss.

Today, I am proud to say that Laura is a happy and successful adult. In fact, she is such a staunch champion for people with hearing loss that when a job became available at Hearing Health Foundation, she jumped at the chance to work there! As Hearing Health Foundation’s Communications and Programs Manager, Laura works hard to advocate for those with hearing loss, to prevent hearing loss, and most importantly to raise funds to research for a cure.

It is my hope that she can one day benefit from her tireless efforts. Your support can make my dream for her, and other people living with hearing loss, a reality. A gift to this amazing organization is a gift to all people with hearing loss, as well as to their families!

This Mother's Day, Hearing Health Foundation would like to shine a light on all Mothers for all they do for their children and families.

Please consider giving a gift in Honor or in Memory of a wonderful Mother you know. Your gift will be used to fund groundbreaking research to prevent and cure Hearing Loss and Tinnitus and to promote hearing health.

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Professor seeks to improve diagnosis process of Meniere's disease

Dr. Wafaa Kaf, professor of audiology, has spent many of her 10 years at Missouri State researching ways to evaluate the hearing of these challenging populations.


Vertigo, dizziness, a sense of ear fullness and ringing in the ears are all symptoms for a variety of illnesses, like migraine. According to Dr. Wafaa Kaf, professor of audiology in the communication sciences and disorders department at Missouri State University, these symptoms may not immediately raise a red flag to a patient with Ménière's disease, and that’s one of the major challenges of this disease.

“There are two challenges with this disease,” said Kaf. “We can’t diagnose it as early as we want because current diagnosis is only based on clinical reports from the patient without the use of objective measures to confirm clinical diagnosis, and thus appropriate treatment isn’t offered soon enough. In addition, there is no known definite cause for it.”

According to Kaf, Ménière's disease is a common disease of the inner ear affecting adults in their fourth decade of life. The disease is believed to be due to an abnormal increase in the amount of the inner ear fluid. If left untreated, this progressive disease may lead to deafness.

Improving the diagnosis process

The current technique for objective diagnosis of Ménière's disease is Electrocochleography, but Kaf knows that it lacks sensitivity to accurately detect Ménière's disease in its early stage. She wants to improve the diagnosis process to understand the origin of the disease and its long-term effects.

Currently to test patients, an electrode is placed behind the ear and another in the ear canal. Clicking sounds will be presented to the patient’s ear via earphone and the system will record responses from the inner ear and the hearing nerve, which will be analyzed by an audiologist. The diagnosis is based on whether there is an abnormally large response from the inner ear compared to the hearing nerve response.

“My research is to modify the current technique to allow it to detect the disease earlier by presenting the click sounds at faster rates of up to 500 clicks per second,” said Kaf.

She explained that this increased speed is a stressor to the inner ear and the hearing nerve similar to a doctor putting a patient with heart condition on a treadmill while undergoing an echocardiogram (EKG). The stress during an EKG allows physicians to detect early dysfunction of the heart. In Kaf’s research, the modification to the current measure has the potential to detect Ménière's disease and distinguish it from other inner ear or nerve lesions.

Participate in the study

Kaf and her research team are recruiting people who have been recently diagnosed with Ménière's to participate in a three-hour long study, testing is being conducted at Dr. Kaf's lab at Missouri State University, Springfield, MO. Participants will be compensated $75 and will also receive free comprehensive hearing evaluations to assess hearing sensitivity and middle ear status as well as inner ear and nerve function using both the standard and the modified, experimental procedures.

To participate in the study, contact Kaf’s research assistant, Alana Kennedy, audiology doctoral student, at (417) 860-2556 or contact Kaf at (417) 836-4456 or via email wafaakaf@missouristate.edu.

Kaf has received generous funding for this research study from the Hearing Health Foundation.

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Constant Companion

By Bill Meehan

I am a rock drummer. As a teen and young adult, we played very loud and for hours at a stretch. I sensed nothing bad happening at the time besides some bothersome post-concert ringing in my ears. I was in my 20s and invincible. 

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In my early 30s I noticed a slight ringing in my ears for the first time—without a loud event as the cause. It was troublesome enough that I went to the doctor. After a thorough examination I heard that word for the first time: “tinnitus.” Okay, great, there is a name for this. “What pill do I take?” I asked the doctor. “There is no treatment currently,” he said with a knowing smile and walked out the door. Seriously, he walked out the door and didn’t even give me a chance to ask another question. I sat there for a moment in the empty examination room and listened to the ringing in my ears for a few minutes in disbelief. Will I never be able to sit in a quiet room again?

I lived with this for years and it was only troubling in very quiet surroundings. A fan blowing or a TV playing in the background was usually enough to drown out the faint, high-pitch ringing.

Then one day it all changed. I was watching TV and noticed a loud sound of crickets. I thought it must be the TV. I turned off the TV and still heard the clear and very loud sound of crickets mixed with a high-pitched tone. I was convinced the TV must be about to explode. I ran over and pulled out the plug. The sound was still there. I covered my ears and was horrified to realize the sound was in my own head. It was well over 100 decibels. I felt sick as the hours passed painfully and slowly. I didn’t sleep.

The next morning I went to the only doctor in all of San Francisco who could see me that day. After the exact same examinations I received years earlier, he told me that same thing, “Sorry, there is nothing I can do.”  

After a couple of weeks I was suicidal. Every day was torture. My only relief was to re-create the sound and pitch on my keyboard and play it at maximum volume. When I stopped playing the loud tone I had 10 seconds of relative peace and then the tinnitus came back. I did this over and over again.

Six weeks had gone by and I noticed a slight reduction in the volume. It was something to hold out onto—a little bit of hope. Could it actually be decreasing even though several doctors told me there was no hope? Little by little, day by day, I found moments of peace and an overall easing of the torment. Finally it was bearable most of the time.

A few years later I had another acute attack, but this time I knew there was hope and light on the other side. I went to an upscale doctor who specialized in tinnitus. He had awards all over his wall. He must be good, right? I told my tale. I told him about the acute attack that lasted for weeks, that it was much worse after waking from a nap, and that the ambient noise level had no impact on severity. He was a much-lauded doctor who specializes in tinnitus and I thought he would understand. “That’s not how it works,” he said, as he walked out of the room.

I now have a hearing aid I wear (I have mild-moderate hearing loss) that gives me some relief during the worst bouts. I wear it in my left ear. I also have an app on my phone that can help soothe me to sleep using white noise. I still play the drums, but they are electronic and I can control the volume. I can live a full and rewarding life, but my tinnitus is always there—my constant companion.

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Do You Know the Signs of Communication Disorders?

By Tara Guastella

Stuttering, a slow rate of speech, and mumbling. Struggling to say sounds, pulling or scratching at the ears, and social isolation. Did you know that all of these are signs of a hearing loss or a communication disorder?

Nearly 50 million Americans suffer from hearing loss and other communication disorders. These disorders, which are characterized by difficulty speaking or hearing, affect the youngest and oldest members of our society—and everyone in between.

When left untreated, their effects of can be debilitating. Too often, people struggle with these challenges and fail to seek proper, timely treatment. Early detection of speech, language, and hearing issues is absolutely critical to treatment success, impacting academic, social, and career outcomes.

Unfortunately, many parents, caregivers, spouses, and other loved ones are unable to identify the early warning signs of these issues or dismiss them too readily. A recent poll of the speech-language pathologists and audiologists of the American Speech-Language-Hearing Association (ASHA)—the professionals who treat these disorders—reported that lack of awareness of these signs is the leading barrier to early detection.

To help remedy the situation, ASHA has launched a national campaign, Identify the Signs. We’re proud to announce that Hearing Health Foundation has joined this effort as a campaign partner. This yearlong multimedia campaign, which launched this fall, addresses the importance of early detection, helps the public identify the early warning signs of communication disorders, and encourages people to seek the most appropriate professional help.

The campaign includes TV, radio, print, and digital public service announcements and a media outreach push. Please visit the campaign website for information and resources, and share it with your family, friends, and colleagues. Above all, we hope you will seek help if you suspect that you or a loved one shows signs of having a disorder.


Early diagnosis is the most powerful way to reduce or even reverse the impact of these disorders and can give your loved ones the opportunity to lead the fullest lives possible.

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