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In the Patient's Shoes: Insights from an Audiologist with Hearing Loss

2018; Lippincott Williams & Wilkins; Volume: 71; Issue: 9 Linguagem: Inglês

10.1097/01.hj.0000546267.00058.f2

2333-6218

Laura Pratesi,

Child and Adolescent Health

The first sign that something was wrong showed up when I was around 2 years old. My mother handed me a telephone. After I put it up to my left ear, I changed hands and held the phone to my right ear, then started to respond. My mother, who had a master's degree in early childhood education, knew something was wrong. She took me to the pediatrician who performed a hearing test with noisemakers. I responded by turning toward the sound. The pediatrician assured my mother that I was fine, and no further action was needed. The subject was dropped.hearing loss, disability, audiologistWhen I was 4 years old, my preschool had a voluntary hearing screening. My mother signed me up. I failed. She finally had the evidence she needed to convince the pediatrician to send me to a specialist—and to the ENT physician we went. I remember being in the sound booth. The test felt like it took forever. I was found to have moderate-to-severe and mixed hearing loss in my left ear. The ENT suggested tubes be placed in my ears even though there was no evidence of fluid. My mom refused and insisted on seeing an otologist. I had a repeat hearing test with the audiologist, and the results were the same. Next, I had an MRI to rule out a brain tumor or something else just as unsavory. The ENT told my mother that I had nerve damage due to a traumatic birth. I was a double-winged breech baby and even though my mom had a caesarian section, it was a very difficult delivery. The otologist said he wouldn't recommend a hearing aid. His reasoning was that the other kids in school would make fun of me, and it would just make sounds louder, not clearer. We went back to him a couple of years in a row, and when my hearing loss appeared to be stable, he told my mother I didn't need to follow up anymore. Because I was a good student earning high marks, the school didn't see the need for me to have an individualized education program (IEP). I had preferential seating, but because I didn't wear a hearing aid or use an FM system or any other accommodations, my teachers often forgot I even had hearing loss. I was a well-behaved student so I got moved around a lot (to break up the rowdy boys in the room). My mom taught me to stand up for myself and protest if they tried to move me to the back of the class. I always got nervous during standardized tests where they would only give the instructions once with no repetitions. Taking Spanish was hard. Tests were administered via a cassette tape on an old boombox. Movies shown in class rarely had subtitles or closed captioning, even though I used them at home. In middle school, we had assigned seats at lunch and I was positioned at the end of the table, with my bad ear facing everyone. I gave up trying to communicate in the noisy lunchroom and read books instead. The teacher called my mom in and told her I was anti-social—that I didn't pay attention well, had trouble changing tasks, and was a day-dreamer. When I was 18 and applying for colleges, I applied for scholarships for students with hearing loss. I tried to register with the Department for Students with Disabilities at Auburn University in Alabama. I was nervous about having a class with 300 people (30 was tough enough). They wouldn't accept my application without an updated hearing evaluation. So back to the ENT we went. My audiogram didn't look much different at 18 years old than it did when I was 5. The audiologist was surprised that I had made it so long without a hearing aid and asked if I wanted one. “Do I need one?” I asked. “Probably not,” she responded. The matter was dropped. The university's Students with Disabilities Department made sure I had one-on-one time with each professor at the beginning of the semester to discuss what accommodations I would require. It was mostly to guarantee my preferential seating in the larger classrooms. I didn't know anything about FM systems or telecoil at the time. Interpreters wouldn't help me because I didn't know sign language. To be frank, I didn't know what to ask for and no one was on hand to advise me. I started as a theater and opera major with the intent to get my degree in music therapy. I found out that a master's degree was needed to practice music therapy, and—as Auburn didn't have a program—I decided to get my undergrad degree in speech language pathology since it is a related field. One of the requirements was to take Audiology 101. I made a 100 in that class and the professor joked that I needed to “come to the dark side.” I loved it. It was absolutely fascinating to me. Finally, I could understand what I was looking at on my audiogram. Something just clicked. I ended up changing my major to audiology and signed up for four more years of graduate school. While in school, I volunteered to be a guinea pig for my classmates and allowed them to fit me with my first hearing aid. It was earth-shattering. It was almost as if I had been living under water all my life and had broken the surface for the first time. It was interesting going through the fitting process as a patient and a student of audiology at the same time. It really gave me an understanding of what our patients go through. There was no going back after that: I was fully committed to this profession. I realized how I had fallen through the cracks, and I vowed not to let that happen to anyone else. I graduated from Auburn's Doctor of Audiology program in 2012, worked at the largest ENT practice in the state of Georgia, then relocated to central Florida in 2014. A year ago, I had a sudden decline in hearing after jumping on a trampoline for 30 minutes. My best friend Sarah Curtis (another audiologist) suggested I be tested for enlarged vestibular aqueducts. I was seen by the ENTs at Tampa Bay Hearing and Balance Center and was diagnosed with bilateral Mondini malformation. Twenty-five years after being diagnosed with hearing loss, I finally had a differential diagnosis. My hearing loss has gotten progressively worse since then and I'm now a bilateral hearing aid user. Because of my experiences, I am passionate about early identification of hearing loss and early intervention. I believe in the importance of having a differential diagnosis that can help patients from making mistakes that negatively impact their health, the way jumping on a trampoline caused a sudden drop in my hearing due to my condition. I can see the difference that real-ear measurement makes in audibility for patients. Wireless accessories were just starting to come out when I was a student, and I'm just now starting to take full advantage of them. I have found that patients open up to me because they know that I can understand what it is like to be in their shoes. Parents reeling from a diagnosis of hearing loss find comfort in seeing that their children can grow up to lead normal, happy, successful lives like I did. That trust, that bond I am able to form with them through shared experiences turns this thing that once held me back into a blessing. School taught me facts, but my experiences have taught me empathy and understanding that no book could. I've felt vertigo. I have tinnitus. I've had sudden irreversible hearing loss. I've had steroid shots in my ear. I've discussed the possibility that I may be a cochlear implant candidate someday. I've lived their realities, and I'm a better doctor for it. Thoughts on something you read here? Write to us at [email protected]