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Cochlear Implants: From the Patient's Perspective

I would like to offer a different view of the cochlear implant experience-based on my perspective, after six years experience wearing a cochlear implant. There are many personal stories on the Internet about how cochlear implant users are doing with their devices, but getting a cochlear implant doesn't just lead to improved hearing. The patient faces myriad issues involving this fascinating and highly complex technology. I would like to talk about some of these issues.

I was born profoundly deaf due to maternal rubella and was diagnosed at one year old. When I was two, a hearing aid-the most powerful available, in the 1940s-was put on me. A woman who had been a childhood friend of my mother's had just begun a speech therapy practice and embarked on the task of teaching me how to hear, listen, and speak. Her name was Helen Hulick Beebe, a name familiar to many audiologists and speech pathologists. Mrs. Beebe had been a student of Dr. Emil Froeschels of New York City. They postulated that deaf children with adequate residual hearing could be taught the necessary communication skills for functioning among their hearing peers and attend regular schools. Mrs. Beebe, along with Doreen Pollack and Daniel Ling, pioneered the Auditory Verbal approach. By sheer luck I happened to be her guinea pig, the first deaf child she tested her theory on.

I was raised orally, developed excellent speech and listening skills, and became a fair-to-good lipreader. I attended regular schools and have a BA in English from Syracuse University and other academic credentials. Before college, the only deaf people I met were other children I saw at the Beebe clinic in Easton, Pennsylvania.

When my hearing loss deteriorated to approximately 115 dB, hearing aids no longer gave me any benefit beyond some vowel sounds and certain environmental sounds. I had no high frequency hearing at all. My low frequency hearing started at 80 dB and dropped sharply off at about 1000 hertz. Still, as a ''prelingually''* deaf person, I didn't perceive cochlear implants were intended for people like me. They appeared to have been aimed at ''postlingually''** deafened persons.

When a friend of mine, who had lost her hearing at age three from meningitis, sought and received a cochlear implant, it made me sit up and take notice.

When I received my implant at Johns Hopkins in November 1996, I had very low expectations. All I wanted was to be less frustrated and more able to understand people while lipreading. Tests done during the evaluation process revealed I was getting 100% of receptive communication through lipreading alone. No wonder my eyes were always tired.

My implant was activated just before Christmas that year and we knew right away the surgery had been a success. I was immediately able to hear sounds such as speech, music, traffic, birds, and the clinking of dishes. Initially, everyone sounded flat-unemotional-and women's voices seemed very high pitched.

I embarked on an ambitious program to rehabilitate my auditory skills. At that time, no ''official'' auditory rehabilitation program was offered for implanted adults at Johns Hopkins. I taught myself to hear by listening to my car radio while driving. I started by not understanding a single word and progressing to the point where I understood traffic and weather and some of the news within the first year. Today, I understand most news and talk shows on the radio.

I also listened to audiobooks and practiced talking on the phone with people who had perfectly clear speech and who understood that they couldn't talk a mile a minute with me. It's a great pleasure to spend a half hour or an hour talking with family members or friends on the phone.

In fact, the morning of the Columbia disaster, while driving to visit a friend in another town, I was listening to the car radio. As soon as I heard there had been a dreadful disaster involving the Columbia, I picked up my cell phone and called my husband and told him to turn on the TV. Being able to do things like that is very empowering!

Once I settled in with my new device, I began to see more clearly the implications of living with a cochlear implant, the issues that arise for implant users, especially as time passes. In the early months of ''CI-hood,'' we are naturally focused on our device and the onslaught of new sounds and experiences rushing in. It takes time to develop a perspective about this technology that holds so much potential for adults, children, and babies. Keep in mind that I write as an adult user, not as a parent of an implanted child, who will have countless other issues besides those I mention in this article.

When we hear the word ''ethics,'' we tend to think of Enron and corporate accounting shenanigans. But in the six years since I received my implant, I've thought a lot about ethical issues pursuant to this technology.

Some of the issues have been discussed in workshops at cochlear implant workshops and conferences. Others have been dissected privately among implant users and their families and friends. As anyone familiar with the landscape of deafness in America knows, when we venture an opinion about anything pertaining to hearing loss, it's akin to stepping onto a minefield. Emotions run amok. We form our views through the prism of our own experiences, especially in our formative years, and our experiences are unique. My views were rooted in my oral upbringing. I have found it very difficult to honestly discuss with people outside my family and a few friends the various ethical issues surrounding cochlear implants. Some people have concerns that I myself do not share. No two people with hearing loss view all the issues, implants and otherwise, the same way, and often people do not like to hear viewpoints different from their own.
The following are issues I have mulled over these past six years. I share them to show there are many ''grey areas'' still to be considered, with respect to cochlear implants.

1. Who should receive an implant? Health insurance policies cover the cost for most patients. In some cases, Medicaid and Medicare are the payers, reimbursing at such low rates that CI centers and hospitals actually lose money on these patients. Is it fair to make third-party payers foot the bill for people who seek implants only out of curiosity about what it's like to hear, or who just want to hear environmental sounds or even just music? When is an implant considered a necessity and when does it become a luxury item? One patient may feel an implant is essential to his sense of security and lifestyle, but someone else may view an implant as a luxury for that particular person.

What criteria determine who should be implanted? Are implant centers driven by the profit motive? Do they implant any candidate who meets the requirements of the evaluation process, while expecting insurance companies to pay for an intervention that might be only marginally effective for some patients? Should we have more than audiologic, otologic, and radiologic litmus tests? Should we evaluate candidates based on some sort of ''needs'' test, perhaps like transplant patients? Who would determine what these ''needs'' are?

Can people who need implants the most urgently-those recently deafened, those whose jobs depend on being able to hear and use the phone, and young children-get them as quickly as they should?

I don't have the answers to these questions, but they trouble me as health care costs climb and employers are shifting more of the cost to employees, and cutting back on benefits for retirees. I fear that access to better hearing will become dependent on our ability to foot the bill. I believe all of us deserve to hear as effectively as we can, but I am not sure that we (as a society) can provide maximal hearing for all those in need.

2. How accurate is the information the public receives? Do people with hearing loss and parents of deaf children have access to information they need to determine the intervention strategy most appropriate for them?

Populations I am especially concerned about include the deaf-blind, non-English speakers, people having minimal education, and those having little or no access to the Internet. Are we effectively reaching those groups?

Most national organizations serving people with hearing loss-AVI, CIAI, AGB, ALDA, SHHH, NAD-provide information about cochlear implants in their newsletters, at their conventions, on their websites, and, on a personal level, through their members. In addition, there are very popular independent websites, such as this one, which provide enormous resources to patients and candidates, at no cost to the end user. Information can also be found on the websites of the three main manufacturers and on listservs.

Given all these sources, separating the wheat from the chaff is tricky at best. People tend to turn to their own ''community'' to learn about implants. Living with an implant is so complex, however, that interested individuals cannot truly learn all that they need to know from others like themselves. To gain a broad perspective on what this technology might be able to do for them, they need to go outside their ''comfort zone'' to gather additional information.

For example, documents that discuss which type of intervention method young children with cochlear implants should be provided with--auditory verbal therapy, auditory-oral, total communication, sign language, cued speech--will likely reflect the bias of the authors. No single source of information will provide a wholly accurate set of data on which to base decisions such as which brand to get, which ear to implant, which communication methodology to pursue (for young children and babies), which telephone to purchase, or which cell phone is best. Sometimes the difference between choices is minimal, forcing people to base their decisions upon the subjective experience and views of other CI users.

Even professionals can goof. One audiologist told a friend who is a native signer that she would ''hear everything'' after she was activated. No professional should make such a sweeping statement to a patient. I felt a real sense of alarm when I heard about this, but my friend reassured me she had already formed realistic expectations about what she might hear with her cochlear implant. A patient less well informed might have been led to expect the moon.

Another friend reported his audiologist said he would never be able to use the phone because of his lifelong dependence on lipreading. Of course, that opinion could have done irreparable damage to his incentive to develop his new hearing ability as much as possible. Professionals need to be careful with opinions they communicate to patients. Conveying a pessimistic or negative assessment can destroy the confidence of a CI candidate, a new CI user, or a parent of an implanted child.

3. Time passes and newer technology emerges. Unfortunately, cochlear implant users cannot return to the ''store'' for a newer model. The most they can do is upgrade their external equipment if their insurance company is willing to cover the cost, or if they can pay out of pocket. Newer technology offers better quality sound and better ability to communicate in noisy situations. Every implant user aspires to achieve these goals, but only those with the newer technology can benefit directly from them. The result is a two-tier patient system.

While I certainly don't want to halt the march of technological advances, I would like to remind the manufacturers and researchers not to leave the ''old timers'' behind in their search for better technology. Many old timers have expressed resentment that they cannot utilize the most recently developed technology. All of us with implants are in this game together, and we all have the same need to hear as well as we possibly can.

4. Are studies truly valid? While manufacturers and researchers may genuinely believe their results, how can the end users and candidates be sure?

How was the study set up? How did researchers control for the countless factors that go into the act of hearing? Controlling for things such as age on onset of deafness may seem clear-cut, but how severe was the deafness, how quickly did it occur, what was the cause, how did the patient know exactly when they began to develop hearing loss? How long had the patient been deaf? How much spoken language ability did the patient have prior to the onset of deafness? Was the person more visual than auditory, or the reverse? Were there other conditions besides hearing loss present in the patient, such as a learning disability, a cognitive problem?

Was the person implanted in the better ear or the worse ear? What about the quality of electrode insertion? How experienced was the surgeon? What about the formation of scar tissue around the electrodes? The condition of the patient's cochlea?

What about the quality of the ''map'' used by the patient? What about the strategy (CIS, SAS, MPS, Hi Res, ACE, SPEAK) used by the patient? How long had the person been using the particular strategy and map? Was s/he actually using the best strategy for him/her? Did channel interaction affect the subject's performance?

What about auditory memory? It is well known that congenitally deaf people tend to have poor auditory memories compared to their hearing peers, and auditory memory has been cited as a factor in the ability to understand spoken communication in the absence of visual cues.

Certainly a study of brand X cochlear implants, using subjects who were post-lingually deaf for 10 years prior to implantation, can't be compared to another study by brand Y, that examined the results of those deaf since childhood. Studies need to compare apples to apples, and oranges to oranges, to achieve validity. More specifically, Granny Smith apples to Granny Smith apples, and temple oranges to temple oranges.

No one knows which brand of device would be most suitable for a particular patient. Patients can't ''try on'' each brand to see which one enables us to hear best. Not only is it impossible to do that, but also it takes weeks to adjust to a new strategy, new map, and perhaps longer to adjust to reimplantation.

5. ''Unpaid volunteer associations.'' Cochlear implant manufacturers in the U.S. have volunteer associations which basically function as a liaison of sorts between the manufacturer and CI candidates.

Although these volunteers are honest and genuinely believe what they tell CI candidates about their brand's capabilities and attributes, they are not engineers or audiologists; they are lay people and I believe they should not be dispensing ''advice'' about which brand to choose, to patients who may be nave, gullible, or uninformed. The professional CI team should be the ones advising candidates about the merits of each brand.

In closing... I am especially concerned about parents of newly diagnosed deaf infants or toddlers. Given voluminous information from widely varying sources, along with the difficulty of gaining access to reliable information, they complain of being overwhelmed and confused. Approximately ninety percent of them have normal hearing and are usually unacquainted with hearing loss and its implications for their child's future. They are bewildered by the list of communication strategies from which they can ''choose''-a choice that often depends on the family's means and where they reside.

It's my view that the present generation of cochlear implants gives children access to a level of hearing ability that can potentially enable them to function as mildly to moderately hard of hearing, rather than as deaf. With appropriate auditory habilitation, their auditory pathways and brain centers for speech and language can more fully develop during the ''window of opportunity'' that is open only to about the age of 10, or perhaps younger. The earlier children acquire speech, hearing, and listening skills, the more opportunities they will have in life.

I believe parents have an ethical responsibility to give their deaf children the very best communication skills they can, given the family's circumstances.1 Parents need to understand the choice they make sets their children on a path that affects their entire lives. I realize ''one size doesn't fit all,'' but, if at all possible, I believe parents should give their children access to the countless benefits of spoken communication skills.

* Prelingually deafened refers to a person who acquired deafness BEFORE acquiring language. Children born deaf (prelingually deafened people) have never heard normally and this is a significant disadvantage because in addition to their hearing deficit, they must learn to speak without the benefit of hearing ''target'' sounds and as you can imagine, it is very hard to produce a sound that you have never heard! In addition, prelingually deafened people learn language and word meanings in a very different way too.

** Postlingually deafened people are those who lost hearing AFTER they have learned their original spoken language. For example, adults who lose hearing due to illness or ear disease. These people already had well established language, they know the sounds of speech and for many of them, cochlear implants ''give back'' their hearing.

Recommended Reading:
1- A Sign of the Times: Cochlear Implants and Spoken Communication, by Amy McConkey Robbins, in Loud and Clear (Vol. 4, No. 2), a cochlear implant rehabilitation newsletter from Advanced Bionics.

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