By Laura Odato
Michael Goldsmith realized he had lost his hearing in his left ear when he woke up from his medically induced coma in March 2020. But his journey from a COVID-19 diagnosis, to his and his family’s harrowing journey during his multi-week hospital stay battling COVID, and finally to a cochlear implant in the fall of 2020 is a longer and more complicated story. His account, which he generously shared with ACI Alliance, demonstrates the learning process and journey to a cochlear implant when sudden deafness occurs as just one part of a more complex medical situation.
Part One: A Life Changing Diagnosis
Michael Goldsmith was diagnosed with COVID-19 on March 15, 2020. His case was so severe that he was hospitalized for 32 days and put on a ventilator while his family fought for access to some of the therapeutics, like Remdesivir, that they thought might help him but ultimately, he received none of these.
He recovered to a point that allowed him to be transferred to a step-down unit and was taken off the ventilator. At that point in the pandemic the medical staff were still uncertain about how contagious he was despite testing negative for COVID, and they were reluctant to enter his room and communicated with him mostly via telephone.
That was problematic, however, because the way the phone was positioned in his room he would answer on his left side and was completely unable to hear the caller. Michael and the medical staff assumed the issue was a broken phone and it was replaced several times before they realized the phone wasn’t the problem.
Michael also couldn’t hear the TV in his hospital via the remote speaker when he held it to his left ear. Similar to the telephone issue, he initially assumed the problem was something with the wiring; when he moved the remote and adjusted by listening on his right side he did not experience hearing issues.
Michael Goldsmith and his wife, Elana, determined through careful research that a cochlear implant was the best choice.
When Michael finally returned home on April 19, he noticed he was hearing static in the car on the ride home—sounds that his wife wasn’t hearing. In addition to his single-sided deafness, he now had tinnitus as well.
Once Michael got settled in at home, he began to put the pieces together. He shared his thinking with his wife that he believed he needed to see a specialist about his hearing.
Finding Community and Getting Answers
For a family facing sudden hearing loss, the lack of information and what to do next was overwhelming. Michael’s wife, Elana, did what many people would do and turned to Facebook.
Fortunately, the cochlear implant community has several active and informative groups that Elana quickly found. While Michael’s experience with single-sided deafness (SSD) following COVID was unique, the Facebook groups had a wealth of information about referrals for audiologists and clinics, questions to ask, and other useful information. Elana became an extraordinarily effective advocate for Michael, for whom the hearing loss was just one more issue he was dealing with as part of his recovery.
It became clear to Michael and Elana throughout the spring and summer (and many appointments with audiologists and other specialists) that a cochlear implant was the right choice for them. They faced concerns, however, from family and friends that this was too much for Michael to take on after his prolonged hospitalization. They also fielded hesitancy from some medical professionals who didn’t want to refer Michael for a cochlear implant because they questioned whether his hearing loss was permanent.
Michael and Elana received recommendations from friends and family in their community to be evaluated by J. Thomas Roland Jr. MD, Chairman of the Department of Otolaryngology-Head and Neck Surgery at NYU Langone Health. Their own additional research and social media community confirmed that he was the expert they wanted to see. Dr. Roland told Michael that while he would be the first patient he had implanted with a cochlear implant after a COVID diagnosis, he was very optimistic Michael was an excellent candidate for a cochlear implant.
Michael had his CI surgery on September 25, 2020. He was activated on October 19, six months to the day after he returned home from the hospital when he recovered from COVID.
Part Two: Life After Surgery
Michael’s cochlear implant surgery and activation are just a small piece of his overall COVID recovery, as he works simultaneously on his CI rehabilitation and a number of other occupational and physical therapies for a host of medical issues he experienced from his illness.
Other elements of learning to hear and work again with a CI will be familiar to CI recipients. These include the importance of having an advocate and a supportive medical team as well as the benefits of working with the CI manufacturer staff to learn about the resources, accessories, and options available to help address the communication issues that come up in day-to-day living with a cochlear implant.
Michael and Elana discussed the importance of a cochlear implant in getting Michael back to a “a new normal” versus “back to normal” throughout this process, and that outlook helped Michael and his family successfully undertake the steps necessary to get there.
Turning Challenges into Victories
Following his extended hospital stay that including intubation, Michael had anxiety about going back into a hospital for another surgery with general anesthesia and intubation. The root causes of Michael’s anxiety and his COVID experience are unique, but general concerns about hospitals and surgeries are not. For Michael, a positive and communicative relationship with his doctors and medical staff helped him move past it. The day of his surgery, he walked into the hospital with all of the medical staff involved in his care that day knowing his name and his background. His medical team has taken care to let people know his particular anxieties and how to help him, and it made all the difference.
Shortly after Michael received his cochlear implant, he was cooking at home when he reached down to get a dish out of the oven and his processor fell off and into the oven. Michael panicked and while he managed to retrieve it within seconds with no harm done, that experience led him to reach out to the manufacturer of his CI device to discuss processor retention options. The incident led, happily, to productive and helpful ongoing conversations between Michael and CI company representatives to work together to find solutions.
Michael has also used his own background and expertise in IT to determine ways to maximize his CI experience. For example, being able to use headphones and listen to music was important to Michael, and his expertise in that area from his own life made getting back to “a new normal” in terms of listening to music an easier task. He has been proactive about learning about the technology and being in control of his use of it.
For Michael and many other patients who have hearing loss and choose a CI, his new device quickly became a family affair. While his two young children didn’t need a long time to get accustomed to his new technology, they are quick to remind him if he’s not wearing his device or if they’re worried it may fall off!
An especially difficult challenge came from well-intentioned family and friends sharing their concerns that a CI was not the right decision. Particularly given the medical issues Michael had already faced, people expressed concerns to him that this wasn’t the right time to take this on, or that he didn’t need a permanent solution because his hearing may come back. Michael and Elana worked through this by relying on their medical team’s advice about his hearing, doing their own research on what his CI device options were, and ultimately having faith that their decision was the right one for them.
Outcomes
Michael’s medical journey that began in March of 2020 isn’t over yet, but the cochlear implant outcomes he has experienced by the end of the year are overwhelmingly positive.
Prior to his CI, Michael experienced tinnitus along with his hearing loss that was severely impacting his ability to sleep. Since activation of his CI in October 2020, he is experiencing less tinnitus which has contributed positively to his overall quality of life. Indeed, when his sound processor is turned on, he doesn’t hear the tinnitus.
Michael is also participating in an auditory research program at NYU. Two months after his activation, he had 93% sentence recognition and 57% word recognition, which his medical team characterized as “remarkable progress.”
Michael’s return to work was also aided by his quick adaptation and success with his CI. He was able to return to work in the fall and faces no additional issues with his hearing while engaged in his remote work within the IT field.
Michael and his family faced extraordinary challenges beginning with his initial COVID diagnosis and the months long hospitalization and fight for care. His perseverance and the support of his family has helped him address the rehabilitation that impacts his overall recovery, recovery that has been aided by the hearing he regained via the cochlear implant and has helped him reach a “new normal.”
Laura Odato is Director of Operations and Marketing at American Cochlear Implant Alliance (ACI Alliance), a nonprofit organization working to eliminate barriers to cochlear implantation. ACI Alliance is hosting a clinical research virtual conference April 28-May 1, 2021 that will emphasize the importance of a team approach in the management of adult and pediatric CI patients.
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To cope, I use meditation to try to keep myself grounded, forget about yesterday, forget about tomorrow, and try to live each moment, the best I can. So when my head hits the pillow each night, the day was a success.