Continuing Advocacy for Patients with Hearing Loss
“As I began to speak and heard my own voice, it was as if clouds were parting. Similar to when you’re on an airplane and start the descent to landing. You’re surrounded by clouds and then suddenly you catch glimpses of land between the clouds…Like experiencing something very familiar but not knowing what it was. When I realized the ‘familiar’ was to hear actual words, it was beyond exciting. It was a revelation.”
That’s how Toni Iacolucci, describes having her hearing restored after a successful cochlear implant procedure. She’d not heard a single word in 15 years--including the sound of her son’s songwriting and drumming.
Although changes in her hearing became noticeable in her early 20s, Toni realizes she probably began to change her behavior to accommodate the hearing loss as a child.
Dealing with her own hearing loss
“Whenever I was with more than one person, I would ‘back out’ or stay on the periphery of conversations,” she recalls. “I also wanted to have one best friend, not two or three.”
When Toni got older, her friends began to notice she wasn’t hearing them.
“Due to the fear and stigma of hearing loss, I was unable to admit I couldn’t hear,” she says.
Toni spent much of her 20s searching for a specialist who might help “cure” her hearing loss. Denial of her hearing loss was no longer an option and Toni realized she needed to get a hearing aid.
“I was fitted for the device and given no information that would help me to understand and live with my hearing loss,” Toni says.
She spent hours running and listening to music, and one day couldn’t hear music from her right ear. She thought the headset might be broken and reversed it. Nothing.
“All of a sudden, fear hit me….I realized I had completely lost the hearing in my right ear,” Toni says. “Terrified, I took a cab to the hospital and was given a CT scan.”
The scan didn’t show abnormalities, and Toni wasn’t shown her medical record, which indicated that she should be evaluated with an MRI to see if she was suffering from an acoustic neuroma, a type of non-cancerous tumor that arises from a cranial nerve connecting the ear to the brain. These slow-growing tumors can cause symptoms, including hearing loss, as they progress.
That loss worsened in Toni’s left ear when she wanted to hear her then-teenage son, Gian, perform in a school music program. She didn’t wear ear protection in her left ear so she could hear as much of his performance as possible. Although the cause of Toni’s sudden deafness is not known, over the course of the following week, she lost what was left of her hearing in her left ear.
She made an appointment with an audiologist and was immediately hospitalized for one week, and was given steroids to try to restore some of her hearing.
“It did not work,” Toni says. “I left the hospital trying to fathom my new life as someone who was profoundly deaf.”
Then came news from two audiologists and two cochlear implant surgeons, who told Toni that she was no longer a candidate for their services.
“My auditory nerve had been compromised by the tumor [finally discovered in 2002], and my tumor would have to be monitored,” Toni says. In addition, the technology at the time would not allow MRI’s for people who had cochlear implants.
She lived in silence for five years, until a friend finally advised Toni to use a powerful hearing aid so she might have some hearing in her left ear. Toni set aside her skepticism and scheduled an appointment with Joseph Montano, Ed.D., Professor of Audiology in Clinical Otolaryngology at WCM, whom she’d met through her membership and work with the Hearing Loss Association of America (HLAA), the nationa’s leading organization that serves as a support network for people with hearing loss.
“I knew Dr. Montano was very supportive of his patients and willing to try anything that might work,” Toni says. “He cautioned me that the results might be minimal at best. I appreciated his honesty and received a new hearing aid two weeks later. As it turned out, the hearing aid was life-changing for me.”
Though unable to discern words, Toni no longer felt like she was living in a soundproof booth. And, although Toni gave up her career in social work because of her hearing loss, she became an inspiring advocate for people with hearing loss.
Advocating for others with hearing loss
“My current work is completely focused on advancing effective communication in medical settings for people with hearing loss,” Toni says.
She speaks with hospital staff and administrators to boost awareness about hearing loss; advises hospitals on changes they can adopt to promote communication with patients with hearing loss; and participates in focus groups to offer data that supports changing policies and procedures to support people with hearing loss.
Toni also highlights her own personal experience with access. In January 2021, Toni successfully underwent cochlear implantation, led by Dr. George Alexiades; this is a surgical procedure where small electrodes are placed in the inner ear and a device is worn on the ear or head that allows a patient to hear. After explaining her need for accommodation for her cochlear implant surgery and making the request for it, the care team at NYP/WCM provided Communication Access Realtime Translation (CART). This enabled her to understand and accurately respond to the many questions asked by the nurse and anesthesiologist during her pre-surgery experience.
With the COVID-19 pandemic in full swing, Toni knew she’d be without her son in the hospital when she awoke from her surgery. She didn’t know, however, that a WCM nurse would be sitting at the foot of her bed, typing on a laptop. Toni recalls feeling “a sense of dread,” knowing she’d have to try to understand the nurse’s questions.
“The nurse turned the laptop around so I could see the screen, and in the largest, boldest, most readable fonts, it said, ‘Hello, Toni, how are you feeling?’ I can’t tell you what a life-changing experience this was for me,” Toni says. “Receiving accommodation is often a struggle and certainly a relief when provided, but this was the first time a hospital had anticipated my communications needs and provided access without a request.”
The nurse continued to type questions for Toni throughout her recovery. Previously she would have had to rely on her son Gian to repeat everything, as she was used to speechreading him. The accommodations enabled Toni to understand the questions accurately; preventing any miscommunications that could lead to further complications.
The cochlear implant activation process, three weeks later, was nearly 3 hours long and very involved; It was somewhat tedious as her and WCM audiologist Haley Bruce, Au.D., CCC-A. worked through adjustments, hearing lots of beeps, as well as understanding and responding to questions.
Finally, the moment came when Toni’s implant was activated; it was extremely emotional and celebratory for her and her son. By the time the activation was completed and all of the instructional guidance was reviewed, Toni was completely exhausted. Having CART access was essential and important during this activation because if Toni had to rely on speechreading alone, it would have been very difficult for her to be able to understand the process accurately.
Regaining her own hearing
Now Toni is embarking on her new chapter.
“I’m still feeling a range of emotions,” she says. “I’m sometimes fearful I’ll be plunged back into deafness. I never realized how much deafness had impacted my life until I began to pull away from it.”
And, as Toni continues her advocacy for patients with hearing loss—advocating for the use of transparent masks when possible, to allow speechreading, pocket talkers (a type of assisted listening device), and CART—Toni feels both the pang of survivor’s guilt about having regained her hearing, and optimism about the future.
She adds: “I believe that this will evolve into my being even more passionate and active in my advocacy efforts.”