Redefined Justice

By Casey Dandrea

Bob Downs was 18 years old when he received his first hearing loss diagnosis. Heading home from school one afternoon, he wandered curiously into an audiology clinic offering free hearing tests and agreed to take one. The audiologist informed him he had a substantial hearing loss and would benefit from hearing aids sold by the clinic. Skeptical and not willing to purchase hearing aids, Bob declined the treatment.

More than a decade later, Bob was driving his five-year-old son, Timmy, home from school when he discovered his distress coming from the back seat. Timmy was crying because his throat was in pain from him screaming at his father. “He was desperately trying to get me to hear him talk about his day at school, but I couldn’t hear him,” Bob said.

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Being unable to hear Tim encouraged Bob to take his hearing health more seriously and get another test. The new test results showed a hearing chart like the one presented to him as a teenager in the audiology clinic, but a lot worse. Bob has now been wearing hearing aids for 18 years.

Professionally, Bob’s hearing loss created some unexpected challenges. Shortly after he purchased his first pair of hearing aids, Bob worked in the call center of a large medical organization. His hearing loss combined with office background noise made it difficult for him to use the phone to schedule patient appointments, even with a telecoil feature for his hearing aids. The hectic environment of a medical office also made it challenging for Bob to communicate with colleagues and patients face-to-face. It was here that Bob first became highly aware of his professional limitations caused by hearing loss.

Bob was disappointed when his employer failed to provide proper workplace accommodations for his hearing loss. He brought the issue to the Equal Employment Opportunity Commission (EEOC)—the federal agency enforces civil rights laws for employees with disabilities—but never received justice from his former employer. His former employer actually denied Bob’s hearing loss, leaving him disheartened and deeply offended.

Discouraged by this legal outcome and required to tend to an urgent family emergency, Bob resigned from his call center position at the medical clinic to return to clerical work, a previous and familiar area of expertise. Bob faced similar obstacles in this line of work, too, and felt as if he were no longer able to contribute to the support of his family. “I was constantly paranoid about failing to hear my boss or a doctor or a technician calling after me from behind and would not be able to see that they were talking to me,” Bob recalls.

Bob realized a new profession—one involving less listening—may benefit him. He returned to college and earned his Associates Degree in 2013, where he is currently working toward his Bachelor’s degree in User Experience (UX) Design, which involves coding to improve people’s interactions with technology.  

Bob’s focus in UX Design is the Web Accessibility Initiative - Accessible Rich Internet Applications (WAI-ARIA), an interface that defines a way to make web content and web applications more accessible to people with disabilities. The typical functionality used in websites is not available to those who rely on screen reading or cannot use a computer mouse. Bob wishes to expand the usage of the required technical code specifications, making more web applications accessible to people with disabilities.

Although Bob was once reluctant to accept his hearing loss diagnosis, he’s proud to understand and advocate for the benefits of hearing loss treatment today. He urges other folks not to ignore their difficulties hearing or, worse, an audiogram showing a profound hearing loss, as he did at 18.  

Bob’s ability to remain persistent through discrimination and career changes is also commendable. Though Bob was unable to receive justice for the inequality he personally faced in his former workplace, he’s now creating his own form of justice for disability access through his newfound career.

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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.

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 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.

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The Gap Between Self-Reported Hearing Loss and Treatment Patterns

By Carol Stoll

Hearing loss is one of the most prevalent chronic conditions in the U.S. and has been associated with negative physical, social, cognitive, economic, and emotional consequences. Despite the high prevalence of hearing loss, substantial gaps in the utilization of amplification options, including hearing aids and cochlear implants (CI), have been identified. Harrison Lin, M.D., a 2016 Emerging Research Grants recipient, along with colleagues, recently published a paper in JAMA Otolaryngology–Head & Neck Surgery that investigates the contemporary prevalence, characteristics, and patterns of specialty referral, evaluation, and treatment of hearing difficulty among adults in the U.S.

Unlike this man who is having his hearing tested, a large number of individuals in the U.S. who experience hearing difficulties are not seeking treatment. Photo source:    Bundesinnung Hörakustiker, Flickr.

Unlike this man who is having his hearing tested, a large number of individuals in the U.S. who experience hearing difficulties are not seeking treatment. Photo source: Bundesinnung Hörakustiker, Flickr.

The researchers did a cross-sectional analysis of responses from a nationwide representative sample of adults who participated in the 2014 National Health Interview Survey and responded to hearing health questions. The data collected included demographic information as well as self-reported hearing status, functional hearing, laterality (hearing ability in each ear), onset, and primary cause (if known) of the hearing loss. In addition, the team analyzed specific data regarding hearing-related clinician visits, hearing tests, referrals to hearing specialist, and utilization of hearing aids and CIs.

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Overall, 36,690 records were included in the analysis, which extrapolated to an estimated 239.6 million adults in the U.S. Nearly 17 percent indicated their hearing was less than “excellent/good,” ranging from “a little trouble hearing” to “deaf.” Approximately 21 percent of respondents had visited a physician for hearing problems in the preceding five years. Of these, 33 percent were referred to an otolaryngologist and 27 percent were referred to an audiologist. Of the adults who indicated their hearing from “a little trouble hearing” to being “deaf,” 32 percent had never seen a clinician for hearing problems and 28 percent had never had their hearing tested.

The study shows that there are considerable gaps between self-reported hearing loss and patients receiving medical evaluation and recommended treatments for hearing loss. Increased awareness among clinicians regarding the burden of hearing loss, the importance of early detection and medically evaluating hearing loss, and available amplification and CI options can contribute to improved care for individuals with hearing difficulty. Future studies are warranted to further investigate the observed trends of this study.

Harrison W. Lin, M.D., is a 2016 Emerging Research Grants recipient. His grant was generously funded by funded by The Barbara Epstein Foundation, Inc.

We need your help supporting innovative hearing and balance science through our Emerging Research Grants program. Please make a contribution today.

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