Listening in Color: An Audiologist’s CI Journey In We Learned to Listen (Estabrooks, 2005), I documented my early experiences of living in a grey world of silence and how hearing aids opened the door to a more colorful world of sound. I have a congenital bilateral moderate-to-profound sensorineural hearing loss that wasn’t diagnosed until I was 4 ... Features
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Features  |   November 01, 2010
Listening in Color: An Audiologist’s CI Journey
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Hearing Aids, Cochlear Implants & Assistive Technology / Features
Features   |   November 01, 2010
Listening in Color: An Audiologist’s CI Journey
The ASHA Leader, November 2010, Vol. 15, online only. doi:10.1044/leader.FTR4.15142010.np
The ASHA Leader, November 2010, Vol. 15, online only. doi:10.1044/leader.FTR4.15142010.np
In We Learned to Listen (Estabrooks, 2005), I documented my early experiences of living in a grey world of silence and how hearing aids opened the door to a more colorful world of sound. I have a congenital bilateral moderate-to-profound sensorineural hearing loss that wasn’t diagnosed until I was 4 years of age. My parents quickly became “expert” managers of my hearing loss by ensuring that I was fitted with the latest hearing aids and enrolling me in a treatment program that enabled me to develop excellent listening and spoken communication skills. With each new hearing aid, another door would lead to a different world of sound, where various hues of colors would fade or become more vibrant.
Karen MacIver-Lux and Antje Aschendorff the day after the CI surgery.
I was initially fitted with behind-the-ear hearing aids (BTEs) in 1975, devices that were regarded as a “technological marvel” compared to the body aids that were commonly fitted for children with severe-to-profound hearing losses. At that time, emphasis was placed on gain and the ability to harness “more power” into BTE-style hearing aids. Hearing aid technology has come a long way since then. We have gone from analog, single-channel hearing aids that used linear signal processing to digitally programmable multichannel hearing aids that incorporate a variety of signal processing strategies. For me, the most exciting advance has been hearing aids that use non-linear frequency compression technology.
Despite these advances, the configuration and degree of my hearing loss imposed several challenges in fitting advanced hearing technology. Often the hearing aids were pushed to their limits, causing more listening challenges than those posed by older hearing aid technology. With wide dynamic range compression, the challenges in fitting often meant that soft sounds were too audible, whereas speech and louder environmental sounds were too heavily compressed, causing distortion. Despite advances in feedback cancellation strategies, the effects caused gain reduction for important speech frequencies, thus adding to these challenges. As an excellent user of hearing aids, an audiologist, and a Listening and Spoken Language Specialist certified auditory-verbal therapist (LSLS Cert. AVT), I was keenly aware of these challenges and the impact they had on my daily life at work and at home.
The Dream Team celebrates Karen’s first day of CI activation. Top row (left to right): Warren Estabrooks and Steffi Kroeger, aural rehabilitation therapist. Bottom row (left to right): Frederike Hassepass, otolaryngologist; Emily Lux; Karen MacIver-Lux; and Ottmar Gerber, CI technician.
The CI Decision
In 1999, I noticed a drop in my overall auditory functioning and knew that my left ear was the culprit. I had to switch from using the phone on the left ear to the right ear as speech had begun sounding distorted on the left side. A visit with my audiologist showed that my unaided speech discrimination scores in the left ear dropped from 60% to 32% in one year, with no significant change in unaided thresholds. The right ear remained unchanged. The speed of deterioration concerned me, so I decided to investigate the option of a cochlear implant.
I underwent three investigations (one in Canada and two in the United States) to determine my CI candidacy and was rejected twice on the basis of my strong unaided speech discrimination abilities and “better than expected” auditory functioning with my hearing aids. It took a lot of convincing during the third CI evaluation that I was working hard to listen and the CI team reluctantly approved me for CI candidacy. I did not pursue cochlear implantation, however, because I had just become pregnant with my daughter. It was not the right time in my life to take on the responsibilities associated with getting a cochlear implant.
Three years ago, I noticed further deterioration in the functional hearing in my left ear. It was almost as if someone took a brush, dipped it in gray paint, and swiped it across Mona Lisa’s smile. My “hearing image” was still there, but it was slowly changing into something other than what it was intended to be.
It was more difficult to hear my young clients during their treatment sessions. I was relying more and more on the use of non-linear frequency compression hearing aids paired with FM system technology to hear what the children were saying and how they were producing higher-frequency speech sounds such as /s/ and /θ/ (“th”). Their parents were happy to assist me with listening, but I was exhausted from the listening effort it took for me to do my job well. Hearing and understanding on the phone was becoming more difficult and I relied more on e-mail and text messages. In addition, I had been experiencing left-ear tinnitus daily, which had previously occurred once or twice a month. Despite my performance during speech-perception tests in the sound booth with my hearing technology, I felt that my listening ability in the real world was floundering. My reduced auditory functioning was having a negative impact on my professional life, and most importantly, my quality of life and that of those who lived with me.
Finding the Right Team
The decision to go with a certain CI surgeon is often directed by many variables. I was fortunate to be able to choose the right surgeon for me and to travel to him or her if necessary.
During the CI 2009 Conference in Seattle, Wash., I was introduced to Antje Aschendorff, a well-known CI surgeon in Freiburg, Germany. I was immediately impressed by her kindness. She cared about my desire to ease the listening challenges I was having, and she took the time to discuss what a CI would be able to do for me in terms of my lifestyle and my job as an audiologist.
Aschendorff was praised by everyone who had the opportunity to work with her. In addition, my husband is from Berlin, Germany, so I could recover from the surgery with the support of my extended family. I was confident that I had found the right CI surgeon and team.
Karen MacIver-Lux, Warren Estabrooks, and Emily Lux share a quiet moment after an aural rehabilitation session.
Surgery
My greatest fears about getting a CI were the surgery and recovery process. There is no guarantee that everything will go smoothly and without complications, but I had complete confidence in Aschendorff and her team.
Despite my excellent residual hearing and hearing aid performance in both ears (with the right ear being better), we both agreed that bilateral implants would be the end goal, but I would receive my implants sequentially. I couldn’t afford being off the “air” for six months while trying to get used to two implants at the same time, especially with my job as an audiologist/auditory-verbal therapist. I would continue to use my hearing aid in the right ear while I get used to the cochlear implant in the left ear. I would receive an implant in the right ear after I’ve had sufficient time to acclimatize to the first implant.
I was surprised to learn that I would be admitted to the University of Frieberg hospital for five days, unlike in Canada or the United States where surgery is frequently scheduled as an outpatient procedure or inpatient procedure with at most a day or two in the hospital. The five-day stay recommended by the German hospital seemed overly cautious, but in the end, I was grateful.
The surgery went smoothly on the morning of Nov. 23, 2009; I was in my hospital room by noon, and by evening I was feeling great and walking around. The next day, I had no complications other than a mild earache. On the third and fourth day, however, I was dizzy and nauseated with overwhelming fatigue, and it was nice to have immediate treatment or reassurance from an experienced staff. I was discharged from the hospital on the fifth day feeling great and ready to face the world.
This extended hospital stay shortened and eased the recovery process at home with my family. I was relaxed, well-rested, and able to cope with the recovery challenges that cropped up, which played a role in my successful adaptation to the CI.
Eliana Samson and Karen MacIver-Lux are listening in colour and loving it. Eliana and her family received auditory-verbal therapy from Karen, and are now proud graduates.
Activation
As an audiologist, I know the various scenarios that could unfold during the activation. I’ve seen countless activation sessions and have provided guidance to families. However, this knowledge brought no comfort before my own activation. All I could think of was the worst-case scenarios. My “professional” self took off without notice and what was left was a scared, helpless, and irrational patient, with tears of nervousness running down my face.
Warren Estabrooks, my colleague, mentor, and childhood auditory-verbal therapist, was there for the activation with a comforting smile of confidence. My husband, Martin, was behind the camera documenting the whole experience, and CI technician Otmar Gerber was ready to begin the activation process. I nodded and took a deep breath. It was time for me to open the door and walk into a new world of sound.
In the beginning stages of CI use, the recipient requires frequent programming sessions, but over time, the program stabilizes. With each subsequent program, increased listening time, and acclimatization of the auditory centers of the brain to the electrical signal that the implant provides, the CI recipient eventually adjusts to hearing with the implant (for additional tips for professionals see the sidebar below).
After my CI was programmed, the implant was turned on. I kept my hearing aid off. When Estabrooks and Gerber spoke, they sounded like a monotone and higher-pitched Darth Vader. I could not understand what they were saying, and the world sounded very quiet. Words cannot describe the mixed feelings that followed—I was relieved that the implant was working, but very disappointed. As much as I tried to tell myself not to have high initial expectations, I hoped that I would be able to understand some speech without speechreading.
Aural Rehabilitation
I was filled with trepidation about an aural rehabilitation session immediately following CI activation, as I wasn’t sure it would be successful. During the session, I listed with the CI only. Estabrooks began with questions and “set to listen” tasks within the framework of a conversation. Set-to-listen tasks are questions such as “Can you hear me?” or “Are you listening?” that help the listener get ready to listen. Eventually, the session consisted mostly of open-set conversation. Estabrooks’s speech sounded robotic, loud, and monotone. Certain phonemes in words sounded muffled, and at times, syllables would melt into one another. His speech had a reverberating quality and sounded as if I were listening to robotic speech in an enclosed space. The speech quality was distracting, which drained the energy I needed to expend processing what I heard.
At the beginning of the session, I was able to understand about 20% of what I heard with two or three presentations. The speech quality became easier to understand and by the end of the session, I was able to understand 50% of what I heard with two to three presentations. Whatever I didn’t hear, Estabrooks would rephrase and try again. At times, I understood what was said after the first presentation. The gradual transformation of speech from unclear to faintly clear encouraged me to use the CI for the rest of the day.
Learning to Listen. Again.
Leaving the quiet treatment room to venture into the outside world was like being awakened rudely from a deep slumber. Even though I wore my hearing aid, the cochlear implant sounded dominant and incredibly loud. Although it was quiet outside, the world sounded like a hundred timpani drums pounding simultaneously and loudly in my head. In addition, there was a constant loud clicking sound that was similar to that of a wood block being struck. The shock and intensity of the noises, along with the loud robotic monotone speech, took my breath away. Gerber had instructed me to adjust the sensitivity and the volume whenever I found listening with the CI overwhelming. I tried hard to keep the settings as they were, but after about 10 minutes, I had to reduce the sensitivity and volume levels. The relief was instantaneous and the sounds of the world were easier to bear, but still louder than I was used to.
On my first day of listening, I couldn’t hear every sound. I couldn’t hear the crunching of the gravel when I walked, but other sounds were more acoustically salient, like the water running from a tap. For the most part, it seemed like I was hearing robotic voices, timpani/kettledrums, clicks and whistles, no matter where I was. Only the clinking noise of a utensil hitting a plate sounded as I heard it with a hearing aid, only much louder. Fascinated by the fact that I could hear these high-pitch sounds and voices at a distance, I could not help staring at other diners as they ate their food.
Throughout my first week of activation, there were daily CI programming and aural rehabilitation sessions, with a break after the third programming session. During this break, Juergen Roth, another CI technician responsible for my care, reviewed the accessories that came with the speech processor and explained how to use them. On the fifth day, there was a final programming session with Roth.
Each new program was created based on my brain’s improved responses to the CI stimulation, and as a result, I gained increased functional auditory access to speech and environmental sounds. As aural rehabilitation sessions progressed during the week, my initial disappointment with the CI melted away. Although speech didn’t sound as clear as I expected, and I had to work hard to concentrate, focus, and understand what I was hearing, I saw the light at the end of the tunnel. I heard the difference that increased listening time and practice could make in a very short period of time. Consistent and long-term use of the CI resulted in a more natural-sounding signal.
I cannot stress enough the importance of consistent use of the CI post-activation, especially during the first three to six months. Although the auditory centers of the brain are receiving the signal that the implant provides, they also seemed to fight to reject the signal. For example, during my third week of CI use, I took a break from wearing the device for a day. When I put the CI on the next day, everything sounded just as it did on my first day of activation. I was shocked at how quickly my brain could lose my newly acquired skills without CI stimulation. I was relieved when my previous listening skills returned that evening, and I vowed to resist the urge to give myself an extended break from listening with the CI.
A Colorful Soundscape
The world has changed its songs. I hear voices more clearly than ever before. The world sounds crisper with the addition of soft high-frequency sounds previously missing from my soundscape. It is easier for me to hear my clients in treatment sessions. Listening in noise is much easier. I have regained my former listening prowess, and added some additional listening skills and abilities. I know my journey in discovering additional skills in speech discrimination is far from complete. Every day brings a new challenge and a new accomplishment, which add a new shade of color to the way I view the world.
Remote CI Programming

I was able to arrange to receive remote CI programming, which allows the patient’s device to be programmed while the patient is at home or in a local clinic and the audiologist/CI technician is in a different location. I acquired the programming software and the required cable for my CI and sound processor; the software was loaded onto a computer in my house that was dedicated exclusively for programming purposes. Remote sharing software, which allows remote access to another computer desktop, allows the CI technicians access to my personal computer and Voice over internet protocol (VOip) allows us to see and hear one another. As an international patient, I would have only limited direct access to the team if and when the need arose. Aschendorff and her team of CI technicians were able to arrange remote CI programming because of their previous experience with providing this service and because I’m an audiologist myself. Continuity of care from Aschendorff and her team is important to me, and I believe this has played a significant role in my successful adaptation to the CI.

Ten Tips for Professionals

The following are important concepts for professionals to know in working with cochlear implant recipients:

  1. There are two aspects to gaining functional success with a cochlear implant: adaptation to the electrical signal provided by the CI in the auditory centers of the brain (gained by consistent use and practice with the CI) and updated programs. Each person progresses at his/her own rate. It is important that the CI audiologist and rehabilitation professional assist the CI user in learning to distinguish the difference between an unclear signal that is “new” and an unclear signal that indicates it’s time for a new program. This differentiation is a challenge for CI users during the first three to six months (or even the first two years) post-activation. Spending a long time listening with a program that is no longer appropriate can result in increased frustration and acclimation time in reaching useful auditory functioning. Likewise, a CI user who constantly requests and makes changes and adjustments to the program without spending an appropriate amount of time listening and practicing with that program also will be frustrated and may experience a compromised outcome. It’s important to find the right balance.

  2. Many new CI users (including those who get a second implant) complain of the sounds being “too loud” when they put the new CI on after an extended period of rest (e.g., in the morning). This has certainly been true in my case, and I have found that it helps to put the CI on first, set at a lower volume, and then my hearing aid. It is important to remember to increase the volume of the new CI to its intended setting.

  3. Encourage new CI users to take advantage of aural rehabilitation. Getting used to a cochlear implant can be a challenging process. Aural rehabilitation provides the new CI user with much-needed encouragement, information, and support to get through the adjustment phase so that the CI becomes a useful and well-loved hearing device.

  4. Music sounds horrible during the initial stages of CI use, but like speech, it does get better. Practice is key. Encourage the CI user to persist in listening to familiar pieces of music. Experiment with different kinds of music and find one that the CI user can tolerate. Programs and settings for music are very useful and do a tremendous job of bringing melodies to life.

  5. Programs designed to help ease listening challenges in noisy situations are also very helpful. Benefit may vary from person to person, but these options do help make challenging aspects of everyday listening easier.

  6. Beeps, whistles, and other strange sounds that are heard during the initial stages of CI use are difficult to listen to throughout the day, and can tax the CI user’s patience. These sounds will “melt” away and the result is a more natural-sounding signal. This process takes time, and patience and understanding on the part of the CI user and family.

  7. Encourage family members, significant others, and friends to attend appointments with the CI user. Their presence will not only provide support for the CI user, but significant others also will gain information about expectations for auditory performance during the process of learning to listen again, and understand how they can help the CI user adapt to the device.

  8. The challenges and successes that come with receiving the CI can never be predicted or anticipated. The physical and emotional needs and outcomes of each CI user vary even though they may follow a common theme. The CI audiologist, surgeon, or rehabilitation professional should take the time to listen and respond to the CI user or family’s successes, challenges, concerns, and questions.

  9. Realize that the increased independence that the CI user gains through the use of the CI is not always welcomed by significant others. Family members or significant others may feel rejected because their assistance is no longer needed during difficult listening situations (e.g., crowds, public address systems, telephones). Support for these significant family members should be provided when necessary.

  10. Offer opportunities for the CI user meet other CI recipients, join local CI support groups, or to locate online resources for rehabilitation or support.

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November 2010
Volume 15, Issue 14