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.

The Toll of Hearing Loss is Global

A new study published in the prestigious medical journal The Lancet offers an unblinking look at the tremendous burden of hearing loss worldwide. “Global hearing health care: new findings and perspectives” was published on July 10th. The authors are Blake S. Wilson, Debara L. Tucci, Michael H. Merson and Gerard M. O’Donoghue. The first and fourth authors organized a three-day discussion at Duke University on the subject, which was followed by a massive review of the existing literature.images

Half a billion people have disabling hearing loss, a number that is far higher than earlier estimates. This is not just a little trouble hearing the TV, your wife mumbles, this restaurant is too noisy hearing loss. This is disabling hearing loss.

“Disabling” means that 500 million people worldwide cannot hear well enough to learn to speak (if they are children), with resulting lower literacy and lower quality of life. If they are adults, “disabling” means they may have a sense of profound isolation, typically withdrawing from community and family, prone to psychological illness and likely to develop earlier and more severe dementia than their peers. “Association is not causation,” as the authors remind us, and in fact causation is the subject of a number of ongoing research studies into the hearing loss/dementia link. But the numbers are alarming: “Indeed, the hazard ratio for developing dementia increases two, three, and five times with mild, moderate, and severe losses in hearing, respectively.”

Eighty percent of those with disabling hearing loss live in low and middle-income countries, and their hearing loss has severe economic and personal consequences. But those in wealthy countries are not immune to these consequences. “In high-income countries… adults with disabling hearing loss have twice the prevalence of unemployment and half the median income of their normally hearing peers.”

The answer, the authors say, is twofold: prevention and treatment. Prevention and treatment of childhood hearing loss would be most effective in poorer countries. Special attention to adults would be more effective in wealthier areas.

Prevention could reduce prevalence by 50 percent or more in some regions of the world, according to the World Health Organization. These preventive efforts include vaccinations against rubella, measles and mumps; education and treatment of HIV, syphilis, hypertension and other conditions. It also includes maternal nutrition and neonatal care, attention to ototoxic drugs, and and universal hearing screening of infants. Chronic or acute otitis media should be treated promptly with antibiotics.

Treatment costs could be reduced by strategies like more competition and lower prices for hearing devices, a change in service provision – and “with disruptive and parsimonious designs” of hearing aids and cochlear implants.

These parsimonious and disruptive designs include many of the solutions now being discussed in the United States: the use of personal amplification devices (PSAP’s), smartphone apps, elimination of the need for a physician’s clearance, revision of regulatory requirements to allow “more competition and comparison shopping for hearing aids.”

Sound familiar? That’s because these are the very same recommendations made by the National Academies of Sciences, Engineering, and Medicine in June 2016, and the earlier PCAST report to the President.

The report calls for a global initiative to reduce “the currently unbridled burden of hearing loss.” It cites the interagency partnership VISION 2020, which began in 1999 with a goal of reducing avoidable vision loss by 2019. Indeed, as the study points out, disabling hearing loss is almost twice as common as disabling vision loss. In the category of mild to complete loss, hearing loss outnumbers vision loss by 46.2 v. 24.5 million in years lived with disability. Hearing loss is the fourth leading cause of disability worldwide.

The report is complex and fascinating and if you are interested in reading the full report please contact me via the comments section on this blog.

And if you suspect you have hearing loss, be grateful that you live in a country where you may be able to find treatment at a reasonable cost. Over the counter hearing aids will not become a reality for several years, but in the meantime get a hearing aid if you can afford it, try Costco or good online retailers for lower prices, get a PSAP if you can’t afford a hearing aid, try out some smart phone apps. But don’t ignore it.

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For more information about living with hearing loss, read my book “Shouting Won’t Help: Why I and 50 Million Other Americans Can’t Hear You. 

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 Would Helen Keller Do?

 

“Blindness cuts us off from things, but deafness cuts us off from people.”

Bouton: What Would Helen Keller Do?

                                                                       Helen Keller — Pictorial Press Ltd / Alamy Stock Photo

Did Helen Keller actually say this? No one knows.

She did express the idea in different ways. In one letter she wrote, “The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.”

Helen Keller lost her vision and her hearing when she was 19 months old, from an infection that was probably scarlet fever or meningitis. Like many toddlers at that age, she had some spoken language, which was presumably lost in the trauma of her illness.

Today Helen Keller’s parents would be offered the option of cochlear implants and speech therapy. Because she was also blind, conventional sign language would not be an option. The Deaf-Blind today use a form of sign language called fingerspelling,  or tactile sign language, which Keller herself used. She also learned to speak, although her speech was labored and difficult to follow.

Those with serious hearing loss often cite this quote. Although cochlear implants and hearing aids restore hearing, it may be to limited degree. Even with additional assistive devices and good lip-reading, a person with severe to profound hearing loss may still have trouble following speech in any but ideal circumstances. I know, because I’m one of them.

Nevertheless, I am certain that, given her blindness, Helen Keller would have embraced today’s cochlear implant technology. In a remarkable historic video, Keller speaks about the loss not of sight or hearing but fluid speech:

“It is not blindness or deafness that bring me my darkest hours. It is the acute disappointment in not being able to speak normally. Longingly I feel how much more good I may have done, if I had only acquired normal speech. But out of this sorrowful experience I understand more clearly all human striving, wanted ambitions, and infinite capacity of hope.”

When she died in 1968, at 87, the New York Times cited her many accomplishments: “she was graduated from Radcliffe; she became an artful and subtle writer; she led a vigorous life; she developed into a crusading humanitarian who espoused Socialism; and she energized movements that revolutionized help for the blind and the deaf.” She was a “symbol of the indomitable human spirit.”

It is hard to imagine that she could have “done more good” with the ability to speak. But her quotes suggest that she would have embraced the chance to hear “the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man” — and to respond with speech.

Katherine 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 5o Million Other Americans — Can’t Hear You”. Both available on Amazon.com.

This essay first appeared in a slightly different form on AARP Health.

Can’t Hear These Iconic Sounds of Spring?

It may be time to get your hearing checked.

 

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Birdsong. Where ever you live in the United States, the great spring bird migration happens at this time of the year. Warblers, tanagers, grosbeaks, orioles, thrushes, vireos fly through on their way from winter homes in the tropics, singing as they wing their way north.eastern-bluebird-c-dorrie-holmes-320 One of my favorites is the eastern bluebird, a very early arrival in my part of Western Massachusetts, claiming its backyard house in February. I realized only this spring (an early one in the east) that bluebirds sing. Here’s a YouTube video. Hope you can hear it!

I was unable to find specific decibel levels for bird songs, which vary according to species of course, but I did come upon a study that found that urban sparrows sing at a higher pitch than they used to, to compete with traffic noise.

Pattering rain. Louder than snowfall but nothing like the deluge of a summer downpour. A moderate rainfall measures about 50 decibels.

Leaves rustling in the breeze are just 20 decibels, close to the softest sound most humans can hear.

Spring peepers. I always thought these were newly hatched frogs, but a “spring peeper” is a member of the tree frog family. The high-pitched sound is a chorus of males, looking for mates. Click here for a picture of the peeper’s balloon-like throat, which makes the sound

Insects. I can’t find any information about the decibel level of a bee buzzing – but it’s good to be able to hear it, especially if it’s near your ear. A buzzing mosquito, on the other hand, comes in at 37 dB, and should be audible.

Squirrels, according to expert Robert Lishak, have a regular language, from “kuk” (a sharp bark of alarm, usually repeated three times) to “quah” (the predator is still in sight but not quite as threatening) to the “quah moan.” Dr. Lishak describes the quah moan as sounding like a “chirp followed by a meow.” “Muk Muk” is a soft buzzing or huffing noise, possibly a male mating call. These vary in decibel level with the softest, the muk-muk, around 20 decibels. You’ll need sharp hearing to hear that one.

Picnics. The crinkle as you open that bag of chips only increases your appetite, and the satisfying crunch as you bite into one makes you want to keep on eating. Healthier foods also have inviting sounds. Thinks of the crunch of a bite of celery, the snap of a carrot. The pop/hiss of a soda can is another familiar picnic sound.

America’s Pastime. How loud is the sound of that bat hitting the baseball? The crack of the bat actually varies in pitch and intensity, depending not only on how hard the ball is thrown and where exactly it meets the bat, but on the kind of hit it produces.

Fun reading: Moonshot: The Analytic Value of the Crack of the Bat, by Robert Arthur. This 2014 analysis of baseball bat sounds found that a line drive in general produced the highest frequency sound, amplified by sound systems in a stadium or on TV or radio. This is followed by the sound of a home run (second loudest), a ground-ball hit, and a ground-ball out.

According to a similar article in The New York Times, a ball hit in the sweet spot has a sharp crack, a ball hit on either side will thunk. The crack may alert an experienced outfielder to the trajectory of the ball before he can visualize it.

Share your favorite spring sound in the comments box, below.

First published on AARP Conditions and Treatments, 3/19/16

Dear Abby, Please Think Again!

Dear Abby, your response to “Trapped in a Situation” about her hearing-impaired husband “Norm” almost made me weep. “Wife of deaf husband seeks to cope in new place.” I wonder what deaf husband thinks of all this.

Yes, of course Norm should inform the retirement community director about his hearing loss. But why did you stop there?

Norm and Trapped are moving to a retirement community. That means that most of the residents will be 70-plus, maybe a lot older. Two-thirds of 75 year olds have hearing loss, and the number goes up with every year. Norm will have lots of company.

Norm and Trapped may not realize how many other residents have hearing loss because even the aged are embarrassed by age. The stigma of age as it relates to hearing aids remains powerful right up till the last for many people. If Norm is open and honest about his hearing loss, I think he’ll find that others are too.

Norm has a cochlear implant. They are very visible. No one is going to mistake him for a 45 year old with perfect hearing. Because his hearing loss is visible, he’s in a perfect position to educate others – and help himself as well. If he’s open about his hearing loss, others will be too.

Trapped says they use assistive devices at home. These can be used in the dining room room, and so can other technology and techniques for better hearing.

The worst thing Norm can do is stay in his room for dinner. Hearing loss is hard, yes, but it’s much harder for those who withdraw and isolate themselves. The consequences are well documented and include depression and cognitive impairment. Norm needs to get out there and be active.

I can’t help wondering if Trapped isn’t the one bothered by this, rather than Norm. I was struck by her choice of pseudonyms. Norm? As in normal? Wishful thinking.

Healthy aging is what we all aim for. Retirement communities are set up to encourage as much activity and participation as possible. And there’s a good reason for that. The alternative is depressed, demented old people spending the day in their rooms. Surely Trapped doesn’t want this for her Norm.

Good News! For a change.

Good news for people with hearing loss.

Last week CMS, which runs Medicare and Medicaid, reversed itself on an earlier proposal to eliminate coverage for bone-anchored cochlear implants, like Cochlear’s Baha and Oticon’s Ponto.

This is good news for two reasons.

First, it preserves coverage for an important and expensive technology. People with certain kinds of hearing loss, including that resulting from acoustic neuroma, can’t be treated with hearing aids or conventional cochlear implants. The bone-anchored devices, which have been implanted in 40,000 Americans since they were approved by the FDA and accepted for Medicare reimbursement in January 2006, affect people of all ages. Only 20 percent of these 40,000 procedures was covered by Medicare, according to the Hearing Industries Association. And in fact when CMS made its original proposal to end coverage it noted that it wouldn’t save Medicare a substantial amount of money.

Medicare’s decision not only ensures that these devices will continue to be available on Medicare but also will have a so-called ripple affect. Private insurance companies often follow Medicare’s lead in coverage guidelines.

And these devices are expensive (although not as expensive as conventional cochlear implants, which both Medicare and private insurers generally cover). Cochlear Americas estimated that the national average “bundled” rate (which includes physician and audiologist services), is $9732 if the surgery is done on a hospital outpatient basis.

The second piece of good news is that this was accomplished as a result of a public campaign against the proposed changed. Cochlear Americas got it started but CMS received more than 4,070 comments, and 11,300 signatures on a petition, according to the Acoustic Neuroma Society. The people’s voices were heard!

Let’s all remember that the next time CMS or some other seemingly behemoth government agency proposes to cut back coverage of an essential device or procedure.