How I Learned to Love My Cochlear Implant.

In 2013 in my first book, “Shouting Won’t Help,” I wrote about the difficult experience I had adjusting to a cochlear implant I received in 2009. That section was excerpted in Bloomberg View and it is still easily available online.shoutingwonthelp

I often get letters from people who have seen the article and are worried by the information in it. They write to ask if they should get a cochlear implant. (Needless to say, this is a question only they and their medical professionals can answer.) Part of the concern stems from the title, “Cochlear Implants Are Miraculous and Maddening.” If you read the article carefully, as I just did, you won’t see me damning cochlear implants. But you will see me raising some caveats.

I am 100 percent in favor of getting a cochlear implant if you qualify for one, and if your hearing aid no longer works for you. I am also 100 percent in favor of aural rehabilitation after the implant. If your implant center doesn’t offer aural training, look for it elsewhere. A speech language-pathologist is one possible provider. There are many online training programs, the best known of which is L.A.C.E. This is a graduated program that starts with speech at a decibel level you can hear (this is determined before you start the program) and gradually increases the noise level in the background. I have written about aural rehabilitation previously on this blog, and you can find other suggestions there.

So how did I come to love my cochlear implant after my initial tepid embrace?

The first answer is practice. I have taken formal and online aural rehabilitation courses. I’ve worked one on one with a speech language pathologist. I listen to recorded books and then read the text to make sure I’ve gotten it right.

The second answer is consistent use. I wear the implant all day every day.

The third answer is technology. The cochlear implant I got in 2009 was not nearly as sophisticated as the replacement implant I got in 2014. (Most implant companies upgrade the external processor every five years.)

The fourth answer is support. I am active member of the Hearing Loss Association of America. We meet regularly and we share tips and experiences. I am always learning new things about hearing.

The fifth is to have reasonable expectations. Is my hearing perfect? Far from it. I need assistive listening devices and captions to hear in a group. I use captions to watch TV. I use captions at movie theaters. I say “What?” a lot. But I live an active daily life in the hearing world, and rarely feel disabled.

But without my cochlear implant I would hear almost nothing. My hearing loss is progressive and the hearing in my hearing-aid ear continues to drop. I am already planning for a second cochlear implant. I qualify now (many times over) but my hearing aid is adequate and this is one area where I follow my own advice: If you can still hear with a hearing aid, hold off on a cochlear implant.

Living Better jpegIf your hearing aid is no longer adequate, start your research. I have written a great deal about cochlear implants and with every writing my optimism grows. The paperback version of “Shouting Won’t Help” is more upbeat on cochlear implants than the hardcover was. My 2015 book “Living Better with Hearing Loss” offers more updated information than the earlier books, and also reflects my comfort and satisfaction – and gratitude! – for having a cochlear implant.

 

For more information on living with hearing loss, see my books on Amazon.com.

Considering a Cochlear Implant? You’re Never Too Old.

Is there  an age limit for cochlear implant recipients? I asked this question of several cochlear implant surgeons around the country. Their answer? Never.

All have implanted patients in their 90s and, as Anil Lalwani, of New York-Presbyterian/Columbia University Irving Medical Center said, he “routinely” operates on patients over 80. His oldest patient is 93.

Surgeon Jay Rubinstein, at the University of Washington Medical Center, has performed cochlear implant surgery on a 96-year-old. Like the others, he thinks chronological age is -not the issue, it’s a person’s overall health.

In other words, it’s not so much how many years you’ve lived as how well your body has held up. In April 2014, Mollie Smith, 99, became the oldest cochlear implant recipient in Europe.

Cochlear implant surgery takes about two to three hours and requires general anesthesia or heavy sedation, so the ability to tolerate anesthesia is essential. Even so, a 2009 study by Dr. Lalwani and others, found that cochlear implantation in the elderly carries minimal risk from anesthesia.

One of the important preexisting conditions that may preclude surgery is moderate or severe heart and/or lung disease, which could make anesthesia potentially dangerous, said Rick Hodgson, a surgeon with Head and Neck Surgical Associates in Portland, Ore. The oldest patient he has implanted was 92 and he’s doing well, Dr. Hodgson said, noting that as a surgeon he looks more at “biologic age than chronological age.”

Darius Kohan, an otologist-otolaryngologist in New York (who was my cochlear implant surgeon at New York Eye and Ear Infirmary), told me he implanted a patient who was 95 years 6 months old. The patient is still using the implant 21/2 years after surgery.

Even dementia may not be a disqualifier, the surgeons said, assuming that the patient is not violent or likely to destroy the external parts of the implant. A study published last summer on implantees with dementia found a significant cognitive improvement a year later. The patients also received regular auditory rehabilitation. It was not clear from the study whether it was the implant itself or the aural rehab that made the difference in improved cognitive abilities.

Jack Wazen, a surgeon and  partner at the Silverstein Institute and director of research at the Ear Research Foundation in Sarasota, Fla. (and a fellow board of trustees member with me for the Hearing Loss Association of America), was the most conservative of those interviewed on the question of dementia, saying he routinely implants those with mild to moderate cognitive decline, but not those with severe decline.

All agree on the importance of auditory rehab for older patients. As Dr. Hodgson put it, “Auditory rehab helps get the most out of the process. This is amazing and life-changing technology, so why wouldn’t we want to maximize the impact on someone’s life?” He added that younger implant recipients might still be in the workforce and get stimulation from their everyday environment. The older recipients are less likely to get that stimulation. Also important, as all the surgeons agreed, is a social support system. This doesn’t necessarily mean a companion in the home, but a regular conversation partner is essential. Social interaction is important in general for quality of life.

The one issue on which the surgeons differed was which ear to implant: the worse or the better one. With younger implantees, the decision is usually to implant the worse ear, to preserve the natural hearing in the good ear, often using a hearing aid in the good ear. But an elderly person may have been deaf for some time in the bad ear, and thus less likely to benefit from the implant.

Although most said that they would consider implanting the deaf ear, they might not if the ear had been deaf for a long period of time. Dr. Wazen specified five years or more. Dr. Hodgson pointed out that “the longer the duration of hearing loss, the higher the chance of diminished benefit due to deterioration of sensory elements in the inner ear.”

Both Dr. Lalwani and Dr.  Kohan said they would implant the worse ear. Dr. Kohan’s reasoning is that if the patient is still able to hear with the hearing aid ear, there may still be enough plasticity in the brain, with crossover from the nonhearing ear, to make an implant in the deaf ear function. Dr. Lalwani went further: “I would always implant the deaf ear. One does not lose anything from doing so. If the outcome is less than satisfactory, the other ear could always be implanted down the road.”

As for outcomes, all the physicians agreed that older recipients do well with cochlear implants. Dr. Kohan mentioned benefits like delayed mental deterioration, better quality of life and more independence.

Dr. Wazen is completing a study comparing the results among patients over 80 with those under 80. The study found no differences in healing or complication rates. All patients did better with the cochlear implant than they had with a hearing aid. The study did find that speech recognition scores with implants were better in the younger group. This may be due to a number of factors, Dr. Wazen said, “including length of deafness, poorer cognitive function [in the older group] and aging changes in the brain.”

So if your doctor recommends an implant, go for it, no matter what your age. “When elderly patients tell me they are too old for a CI,” Dr. Rubinstein said, “I tell them age is not important unless they are a cheese.”

This post first appeared on AARP Health on February 22, 2016.

What Do Consumers Want? Try Asking a Consumer.

If you asked consumers what is most important when buying a hearing aid, would they say price or sound quality?

Hearing Tracker, a respected independent online resource for consumers, and USB Evidence Labs recently surveyed more than 360 audiologists about what brands and features consumers ask for most when buying a hearing aid.

Not surprisingly, sound quality came in first by a long shot (56 percent), with reliability a distant second (17 percent) and value for money in third place (12 percent).

I don’t doubt that is exactly what the audiologists’ customers said they wanted. But I also wonder if the answers would have been different if consumers, especially those who never go to an audiologist, had been asked directly. I expect those consumers would say an affordable price was their top priority.

Currently, only 1 in 7 U.S. adults who can benefit from a hearing aid have one. Why don’t the other six?

The answer is cost. “Hearing aids are expensive,” Jan Blustein and Barbara Weinstein wrote in a June 2016 article in the American Journal of Public Health. Medicare and most insurance plans don’t cover them, and so consumers typically pay for aids and fittings out of pocket. And that can get costly. The average cost of a single hearing aid is $2,300, but because age-related hearing loss typically affects both ears, that’s a tidy $4,600 — a sum beyond the reach of many older people. Blustein and Weinstein note that “in a recent population-based prospective study, a majority of participants cited cost as a major deterrent to buying a hearing aid.”

Kim Cavitt, a past president of the Academy of Doctors of Audiology, says audiologists have turned a blind eye to consumer wants. In a recent article headlined “Have We Missed the Signs?” in Hearing Health and Technology Matters, she wrote that consumers “for the past decade have been clamoring for lower-cost amplification solutions,” meaning more affordable hearing aids or hearing aid–like devices.

The devices she refers to are lower-cost products that can effectively help with mild to moderate hearing loss. These won’t replace traditional hearing aids, she wrote but will expand the market by providing a gateway to more advanced traditional hearing aids.

She also noted that consumers want transparent pricing from audiologists — including detailed pricing of various goods and services — and access to assistive listening devices and aural rehabilitation. But mostly, consumers want hearing amplification they can afford.

This month, responding to that consumer demand, Senators Elizabeth Warren (D-Mass.) and Chuck Grassley (R-Iowa) introduced a bill to ease restrictions for getting hearing aids, including eliminating a required medical exam for many devices. The bill was supported by a number of organizations, including AARP and the Hearing Loss Association of America (HLAA), the nation’s largest consumer group representing people with hearing loss.

The legislation preceded an announcement from the Food and Drug Administration that it will no longer require adults to get a medical exam before purchasing certain hearing aids, clearing the way for a new category of over-the-counter devices.

Barbara Kelley, the executive director of the HLAA, endorses both developments.

“Each and every day,” she wrote, “our office receives letters, phone calls and emails from people with hearing loss inquiring about financial assistance to purchase hearing aids (up to 10 requests a day). The financial help page on hearingloss.org is the number one visited page on HLAA’s website. Sadly, there are few financial aid resources. Creating a category of over-the-counter hearing aids will go a long way toward making these essential devices affordable for the millions of Americans who need them.”

Cavitt agrees, although she isn’t by any means discounting the need for audiologists. People with serious hearing loss will always need audiologists and the services that only they can offer, she says.

For now, though, the goal should be finding an easier, financially feasible way to get the remaining 6 out of 7 Americans with hearing loss the devices they need.

 

This post was first published on AARP Heath on December 19, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

The Day I Lost My Hearing

Every year I observe the day I went deaf. My life changed that day. At first it seemed nothing but negative, a catastrophe. Now I see that it gave me an opportunity, a door that opened onto a new world.

I remember the day because it was a holiday — Halloween. My hearing had been in a steady decline for three decades, but it was on Halloween of 2008 that I realized it was irretrievably gone.

I had started a new job two months earlier, and learning the routines had been stressful. Once I mastered the systems, I began to realize just how hard the actual job was, with too many elements and too many deadlines. I could tell it was affecting my health, but I was only two months into it. No turning back.

On that Monday, I had a routine flu shot. I began to feel woozy that evening, and by Tuesday I was dizzy and slightly nauseated. By Wednesday my ears were blocked. I was also hypersensitive to sound. This wasn’t the first time I’d had those symptoms, and they usually indicated a downward fluctuation in my hearing. I made an appointment with my ear, nose and throat doctor for Friday morning. I continued to suspect the flu shot as culprit, but I knew it was just my hearing, doing its mysterious disappearing act.

I live in New York, and my trip to the doctor was two subway rides. It was morning rush hour and Halloween, a frenzied combination. Teenagers in makeup shouted and roughhoused. Two businessmen hung over my seat talking loudly. A panhandler in a wheelchair hollered his pitch for donations right next to me. The noise was overwhelming. I covered my ears with my hands and shrank down into my seat. At this visit, I couldn’t hear my longtime doctor. He wrote questions for me on his computer. A hearing test confirmed the worst.

Oral steroids are a standard treatment for sudden hearing loss, and although mine didn’t fit that description, he prescribed them anyway, a blockbuster dose gradually decreasing over the next two weeks.

 

I was already stressed and overwhelmed with anxiety. Now I panicked. How could I possibly do my job with my hearing as diminished as it was? I took the rest of that day off, working from home. I sobbed and raged and sank into a fierce depression over the weekend. On Monday I went back to the office. I made vague reference to my hearing having been affected by the virus I’d had but stayed far from the truth.

My hearing never got better. I struggled through another year, pretending to myself that I was managing. I’m a good lip reader, and I set strategies in place to maximize my ability to understand. The following September I got a cochlear implant, but after three decades of profound hearing loss in that ear, it didn’t help much. Still, I thought I was getting away with it. Then a tough new boss came in. He didn’t buy it. I wasn’t a team player, he said.

I left that job at the end of the year. At first it seemed like a huge defeat. But as I gathered my strength and began to consider what to do next, I came to think of my hearing loss as an opportunity. I had been clueless about hearing loss. I thought my situation was unique. I was embarrassed to be going deaf at such a young age. I hid my hearing aids and I tried to hide my cochlear implant. I knew nothing about support groups or advocacy for people like me.

And that was my opportunity. I could share what I learned, and continue to learn, about hearing loss. I joined the Hearing Loss Association of America and found other people like me. I became an expert — writing and talking about hearing loss from the patient perspective, and eventually from the consumer perspective. It’s an interesting transition from patient to consumer. As a patient, you are mostly a passive participant, hoping for the best. As a consumer, you have rights. And as an advocate, you channel both of those roles into making your disability your strength.

I never think about that Halloween without a tinge of sadness. But out of that experience came a chance for a second act. One of the things I have found most interesting in my new life is how many other people have also been forced into a second act, by hearing loss or by other misfortune.

Many of my Hearing Loss Association of America colleagues have also become hearing-health activists, many of us working as hard at it as we ever did in our paid professions. For me, and for others, it’s also far more gratifying than my paid work ever was. And the best part — it’s given me a whole new life.

I know it’s true for others. Please share your experience in the comments section below. If yours wasn’t as positive, remember that mine also had — and continues to have — its downs as well as its ups. Nobody ever said it was easy. But that doesn’t mean it doesn’t have its rewards.

This post was first published on AARP Heath on December 5, 2016.

For more on hearing loss and hearing health:

shoutingwonthelpLiving Better jpegKatherine Bouton is the author of “Living Better With Hearing Loss: A Guide to Health, Happiness, Love, Sex, Work, Friends … and Hearing Aids,” and a memoir, “Shouting Won’t Help: Why I — and 50 Million Other Americans — Can’t Hear You”. Both available on Amazon.com.