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Welcome to Naama's Blog. I hope you will ask any questions you have here in the comment area below. You can also post your thoughts on what I have written or anything else related to adult rehabilitation. Members may comment on any posting by logging into your account. If you are not a member but wish to comment, please send your submission to sthomas@acialliance.org . If you would like to write to me directly, please email me at: naama@acialliance.org. The Blog is intended as both a patient and a professional resource. This printable brochure may be used to refer adults and family members who may benefit.

 

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Cochlear Implantation for Adults with Prelingual Deafness

Posted By Naama Tsach, PhD, Tuesday, October 18, 2016
Updated: Thursday, October 13, 2016

 

Cochlear Implantation for Adults with Prelingual Deafness*

Deafness in Adults: Age of Onset Matters
Adult CI candidates who once had normal hearing and experienced hearing loss later, or had some degree of hearing loss in childhood that worsened over time, typically have spoken language skills including intelligible speech. In contrast, adults with congenital deafness (present at birth) who never derived significant speech perception benefit from conventional hearing aids, generally have less well developed spoken language skills. If they did not use amplification consistently, there is an even greater chance that their use of spoken language is more limited.

Despite the fact that the individuals in the described categories may have similar audiograms indicating bilateral profound hearing loss, their spoken language skills may differ significantly. Further, expected outcomes with a cochlear implant are also quite different.

Congentially Deaf Adults
The speech intelligibility of congenitally deaf adults may be poor. Spoken language may be hampered in other ways and listening ability may be quite limited. These CI candidates likely are unable to detect all speech sounds and many environmental sounds are not detectible. Many such individuals do not demonstrate spontaneous listening behaviors and will require speechreading and/or sign language, even in quiet. Repetition and a slower speaking rate may also be needed.

CI Outcomes for this Adult Population
In light of the above, it can be generalized that congenitally deaf adults will continue to need speechreading and/or sign language following cochlear implantation. Nonetheless, we cannot predict with certainty that they would not benefit from the auditory information they would derive from a cochlear implant. Some individuals with this hearing profile may even gain some open set listening with a CI.

Although cochlear implantation has advanced dramatically, device outcomes are impacted by many factors including patient characteristics. In assessing candidacy, it is important to consider:

  • What are your expectations? Can a CI help you to fulfill some or most of these expectations?
  • Will you undergo rehabilitation to help you realize potential benefits? 

With regard to rehabilitation, it is important to both follow through and find a means to customize a program to meet the person’s specific needs—both subjective and objective outcomes. Assessment of outcomes should include a range of possible benefits including access to speech, one’s own spoken language, environmental sounds and music. Changes in life circumstances may also affect communication needs. Such changes may include, for example, living with parents versus living independently; mainstream educational settings as opposed to supportive settings; moving into a workplace that does not fully accommodate hearing loss.; or expanded social interactions with a greater range of people.

A broader appreciation of possible benefits allows one to assess CI outcomes more accurately, particularly for this group of adults. Therefore, a consideration of CI candidacy should be undertaken without preconceived notions regarding potential benefits of the intervention on someone’s quality of life.

Our ability to understand this complexity is key to defining needs, goals and rehabilitation strategies which may augment the opportunity for a prelingually deaf adult to realize the full benefit of a cochlear implant over time.

In the next post we will discuss these potential benefits.

* Prelingual hearing deafness is defined as hearing loss present at birth or prior to the acquisition of language.

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A Retrospective Look at Cochlear Implantation, Part 2

Posted By Naama Tsach, PhD, Tuesday, September 13, 2016
Updated: Monday, September 12, 2016

A Retrospective Look at Cochlear Implantation in Older Children with Prelingual Hearing Loss 

Part 2: Experiences of Older Deaf Children Using Hearing Aids

In the mid 1990s, parents of older deaf children observed the benefits of cochlear implants for young children. Many deaf children were using hearing aids with minimal benefit and were struggling, sometimes in mainstream classrooms. The negative impact of the child’s hearing loss on academic progress became more evident as the children moved into upper grades.

Parents recognized that communication and educational support typically decline as children get older—despite the fact that academic and social activities become more challenging. Though their children were not the ideal age for cochlear implantation, parents felt that their children deserved the opportunity to try new technology that could enhance communication and quality of life. The children themselves typically shared their parents' dreams. Many were integrated into mainstream school settings and experienced their hearing loss as a significant disability that CI could potentially mitigate, at least partially. Many CI teams, however, had concerns about making the intervention available to this population. It was clear that in order to achieve maximum benefit, older implanted children would need to be enrolled in intensive auditory rehabilitation programs designed to address their unique needs.


What have we learned from these later implanted pediatric recipients?

We learned that the speech perception skills of someone who is prelingually deaf and later implanted is a key indicator of expected auditory skills post CI. We also confirmed the effect of age at the time of CI as a key parameter in other auditory outcomes. Children who were implanted at a later age differed significantly from children who were implanted at an early age in various aspects including the course of the rehabilitation process, the pace of progress, and the eventual outcomes.

We also learned that later implantation can facilitate progress in communication skills. Over time, many of these older children experienced significant improvement in their communication function. Some gradually changed their communication habits from using primarily visually based communication with little meaningful auditory information to an auditory supported method of communication. Long term outcomes included enhanced speech reading including understanding speech without visual clues in certain situations, better speech intelligibility, music appreciation, increased ability to understand speech on the telephone, and improved perception of environmental sounds. Parents reported that their children were more self-confident in various social situations and functioned more easily in their regular classrooms.

Interest Increased from Families

Due to the positive impact of later implantation for mainstreamed children, we saw an increase in interest in CI from this population. Typically, candidates were children and adolescents who attended special classes for children with hearing loss. Many students communicated using sign language—either sign alone or total communication. Many had significant spoken language delays of 4 years or more and some had disabilities in addition to their hearing loss.

This new group of candidates challenged CI teams in many ways. Not only were they thought to be "too old" to benefit from CI, their oral language skills were often poor. There were questions regarding their ability to enhance their auditory abilities when their communication mode was not based upon listening and spoken language. There were also concerns regarding whether they would be sufficiently motivated to complete the needed intensive rehabilitation that would likely take many months, or even years.

The decision on whether a child was an appropriate CI candidate was even more complicated in instances in which there were additional disabilities. If candidacy was approved for a child with additional disabilities, it was critical that the family had realistic expectations regarding likely outcomes and the need for a unique course of follow-up rehabilitation. Clinicians and family members together needed to collaborate to build realistic rehabilitation goals. We also needed to gain the support of the child’s educational team and ensure that the classroom environment would be supportive.

In the program where I worked in Israel, we initiated efforts at the national level with the Ministry of Education to increase the educational support and rehabilitation resources provided to students with cochlear implants. We communicated and coordinated with school staff to establish a collaborative process during the candidacy evaluation stage and throughout the rehabilitation process. We visited schools to meet not only with educators, but also with a child’s classmates. We adopted an approach of acceptance and respect for the use of sign language. The message conveyed by the CI team regarding use of sign language by candidates and their parents was that CI does not exclude the use of sign language. For these later implanted children, it was important to encourage the children's continued use and further development of sign language skills. Accordingly, professionals from the CI team used signed Hebrew along with spoken language (total communication) with these candidates and CI users.

What insights have we gained from these later implanted children?

We learned that the amount of auditory language that an older candidate already has in place, as well as the frequency of using such language, is a factor in determining CI outcomes. Motivation is a highly influential variable regarding participation in CI rehabilitation. The CI recipient's cooperation with the rehabilitation demands and their willingness to take on proper maintenance of the CI cannot be taken for granted with older children or adolescents. Given the later age, cochlear implantation may conflict with their identity relating to hearing loss; such conflicts must evaluated to determine an appropriate path forward. Teenagers must address which community they identify with and whether a CI will present identity concerns. Do they identify as having hearing loss, being part of the Deaf community, or being part of a new paradigm allowing them to be deaf but functioning within the hearing world with CI?

Auditory rehabilitation is essential for progress; a lack of consistency in their auditory training program can interfere with progress. We also learned that collaboration between the CI team and the educational team is critical to the progress of the older child or teenage cochlear implant user.

Beyond all of the complexities and challenges, we learned that CI provides significant benefits for this group of candidates!

Important Benefits in Older Children Changed Minds

Implanted teens and children with the above age and communication characteristics were able to identify many environmental sounds and their awareness of auditory stimuli in their environment improved significantly. They reported meaningful enhancements to speech reading. In many cases, following intensive long-term auditory training, they were able to understand simple sentences without speech reading. This ability was usually restricted to quiet conditions, certain speakers, and short sentences on an identified topic. However, this was a groundbreaking experience related to auditory comprehension. Some of older recipients were able to reply to simple questions and react spontaneously to greetings in everyday situations. Some even managed to talk on the phone with their parents, usually when the conversations were relatively structured and on specified topics. Most of these recipients used their device regularly and were positive regarding their decision to pursue a cochlear implant.

With these insights, CI clinics began to open up their programs to this new population of older children and adults. This required a new approach for follow-up rehabilitation, which will be addressed in future posts.

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A Retrospective Look at Cochlear Implantation

Posted By Naama Tsach, PhD, Tuesday, August 30, 2016
Updated: Monday, August 29, 2016
A Retrospective Look at Cochlear Implantation in Adults with Prelingual Hearing Loss

Part 1: Introduction

Today’s post takes a retrospective look at CI in adults with prelingual hearing loss. This has been informed by the experiences of of implanted adults with this type of hearing history and my personal and professional experience as an educational audiologist at schools and as an auditory rehabilitation therapist on a CI team in Bnai-Zion Medical Center in Haifa, Israel.

During the late 1980s, when CIs were first approved for use in the US, there were two major groups of recipients. The first group was people with post lingual hearing loss, those who previously had normal or near normal hearing and lost their hearing later in life. The second group encompassed young children (and later, infants) with prelingual profound hearing loss.

Adults with prelingual deafness differ from these two groups in many aspects. This group was included in expanded FDA guidelines beginning in 1998.

A Change in Perspective

How did we get to the point of considering CI as an appropriate, beneficial option for adults who had never heard before? Why consider CI for adults and adolescents whose communication required visual information rather than auditory information? What benefit might people who rely upon sign language as their preferred and dominant language derive? How did it come to pass that in spite of the well-documented advantages of early implantation and shorter periods of deafness that there are now so many prelingually deaf CI users who have gone through implantation at a later age?

The current reality results from nearly a decade of clinical experience and research. The accumulated knowledge, both theoretical and clinical, altered the perceptions, both among professionals and among people with congenital hearing loss regarding the potential benefits of CI for adults who were deaf at birth but opted to pursue CI as adults.

Pressure for Change Based on Parent Advocacy and Clinician Support

This change in candidacy criteria was supported by persistent parents advocating for their older children and teenagers as well as by determined adult CI candidates with prelingual hearing loss. These people have recognized the limited benefit of conventional hearing aids for those with profound hearing loss and pressed for an opportunity to experience the potential advantages of CI. Such parents and adults were aware of the fact that CI cannot provide the same benefits for these individuals that it offers young children and postlingual adults; nonetheless they chose to pursue this path.

This candidacy expansion process was encouraged and facilitated by CI professionals who foresaw the likely benefits of CI for this population. The complexity of CI rehabilitation for these candidates was recognized and professionals developed intensive, customized rehabilitation programs. Implantation of "challenging" candidates not only broadened CI criteria boundaries, it also extended the definition of CI success. Implantation of prelingually deafened older children and adults provides examples of the diverse ways in which cochlear implantation contributes to quality of life.

My next post on this topic will address the process of learning to listen with a cochlear implant as a prelingually deafened adult or adolescent.

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Quality of Life Improvement

Posted By Naama Tsach, PhD, Tuesday, August 16, 2016
Updated: Sunday, August 14, 2016

Quality of Life Improvement Following Cochlear Implantation

Recipients Anticipate that Better Hearing will Improve Quality of Life

The expectation that one’s quality of life will improve with a CI arises from the recognition of the all-encompassing negative effect that a hearing loss has on one's well-being. Adult CI candidates typically anticipate that better hearing following CI will lead to a better quality of life.

Although the research on CI outcomes focuses on auditory skills, there are a growing number of studies that have assessed the way cochlear implantation impacts on quality of life. According to these studies, adult CI users often report positive effects such as easier communication and socialization, greater independence, expanded occupational opportunities, improved sense of well-being, decreased levels of self-perceived hearing handicap, and decreased levels of depression and anxiety. However, outcomes vary and there is no reliable way to predict the impact of CI on different aspects of one's quality of life.

Quality of Life Improvements Vary by Individual

The improvement in quality of life following CI is an individual experience that can be expressed in many different ways. This blog post will focus on individual experiences, rather than quantitative data. I am sure many readers have their own unique insights regarding the contribution that a cochlear implant made to their quality of life. These personal insights are a valuable source of information for CI candidates, CI users, families, and professionals. Different people assess improvement in their quality of life according to different measures and hence weigh the impact in different ways.

A patient of mine was happy with his CI from the very first weeks after following activation. He enjoyed listening and trying to detect environmental sounds that he had never heard before. He experienced the auditory information he was receiving as a new and intriguing gift. He felt he had been blessed with his improved sound awareness even though he never managed to understand sentences without speechreading. Importantly, we had never defined "understanding sentences without speech reading" as a practical goal for him given his hearing history. Another CI user, who was considered a "star patient" based upon her speech perception outcomes, felt frustrated because the CI did not provide her with normal hearing. It took time before she recognized and appreciated the benefits of the CI and its contribution to her quality of life.

Expectations: Everyone is Different

Many CI users deal with "emotional baggage" which includes a sense of hearing impairment, experiences of difficulties in communication and social interactions, and expectations—theirs, family members’ and friends’. These, as well as other factors, affect perception of the CI contribution to a person’s quality of life. A judgmental attitude towards people's perception of their quality of life is useless. There is no objective right and wrong. CI users, families and professionals should respect the variety in outcomes, as well as the possible gaps between the user's feelings and their "actual" auditory achievement. We all need to be patient and supportive.

Quality of Life Benefits Are Not Just About Speech Perception Scores

Although the improvement in quality of life correlates with the improvement in speech perception, it is important to note that it is not restricted to a certain objective level of speech perception skills. Even people with relatively "poor" auditory skills can experience meaningful contributions to their quality of life.

The following examples illustrate two CI users who differ in their auditory functioning. Both are satisfied with the contribution that a CI made to their quality of life.

One person is grateful that the CI allows her to feel safer and more oriented to her surroundings. She wrote:

"I gained the ability to hear a variety of sounds and use them daily. I especially appreciate my ability to understand invisible sounds. The CI made a huge change in my life as I now can rely more on hearing and less on sight and touch. In the past, when I locked the car I've always been trying to open the door in order to check if it is locked. Today I don't need to check anymore. I can be at home on the second floor and figure out that my husband is washing dishes downstairs without seeing him. I can hear my children fighting and go to stop them. Before I had the implant nobody stopped their fighting." 

The other woman, who previously worked as a director of a large company, reported on a huge improvement in her ability to cope with group meetings. She is able to talk on the phone with family and friends, she can follow some TV programs (without captioning), and she enjoys listening to music.

It is clear that these two examples represent women with different auditory abilities, pre and post implantation. Yet, both of them use the CI regularly (even when they are at home alone). They both experienced an improved sense of well-being and significant benefit in daily situations in which they previously struggled before they received a cochlear implant.

Assessing Your Quality of Life Changes

To assess the contribution of the CI to your quality of your life, you might ask yourself some question comparing your pre-implant feelings to your current situation post CI. For example, before receiving a CI:
  
• What were the reasons you pursued a CI?
• In what ways has your hearing disability limited your daily life?
• Which specific situations were difficult for you to cope with before the implant (i.e., at home, work, or with certain people).
• Did you avoid certain situations and why?
• What strategies did you use in order to cope with these difficulties?
• Did you experience any stress or depression due to your hearing disability?

Now, post cochlear implantation, consider the following:

• Do you enjoy listening with your CI?
• Do you feel there is enhancement in communication (hearing, speaking, and speech-reading)? Can you define these situations?
• Do you feel more comfortable in social and communicational situations that used to be stressful prior the implantation?
• Do you feel more self-confident to do things you did not do in the past?
• Do you feel more independent?
• Do you feel that you have achieved the goals that you set for yourself prior to implantation? Which goals have already been achieved? Which goals have not yet been achieved?
• Are you satisfied with your CI?

Focusing on benefits can be a very empowering, constructive, and supportive method of action that may contribute to your perception of improved quality of life. Some studies note quality of life improvements as early as 9 months post implantation. However, the auditory outcomes continue to improve for the first few years. It is important to view the improvement in quality of life as a long-term process and expect the growth of benefits resulting from your CI to be reflected in various aspects of your life over time.

Further Reading:

Loeffler C et al. 2010. Quality of Life Measurements After Cochlear Implantation. The Open Otorhinolaryngology Journal, 2010, 4, 47-54 47 1874-4281/10. Bentham Open Access

Zaidman-Zait A. 2010. Quality of Life among Cochlear Implant Recipients. In: JH Stone, M Blouin, editors. International Encyclopedia of Rehabilitation.

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Emotional Impact

Posted By Naama Tsach, PhD, Wednesday, June 15, 2016
Updated: Monday, June 13, 2016


 

Emotional Impact of Cochlear Implantation

How does cochlear implantation impact people on an emotional level? Though it is difficult to find empirical data documenting the emotional effect of cochlear implants on adult recipients, this is an extremely important issue. How can one find information about emotional effects? One source is the abundance of online videos documenting the first moments of hearing after CI activation. In addition, there are published studies that assess quality of life benefits for adult CI users.

Most CI candidates and their families view videos posted on the Internet documenting the first sounds and words heard by adults and children at activation. Watching these videos, one can witness the tremendous excitement of the recipients and their families—often expressed with tears of joy and relief. Studies examining the effect of CI on adult quality of life document that there is general improvement and satisfaction over time.

But what happens in between? Relying on these two sources of information (i.e., videos and quality of life studies) might lead to the impression that the timeframe following CI is characterized mainly by a great happiness and that once a cochlear implant is activated, individuals experience a continuous increase in your quality of life. However, many CI recipients know from their personal experience that the reality is much more complicated. My experience with many adult CI users, has taught me that not everyone experiences the same level of joy when the implant is activated. Importantly, for some people, the first period of CI use is characterized by significant emotional challenges.

Let's start by stating the obvious; severe to profound hearing loss is not a life threatening condition. Adults' motives are not linked to health conditions in the same way that many other surgeries are but rather are driven by a desire for a better quality of life. This includes improved communication with family members and in the as well as better environmental orientation. These hopes may be dashed in light of difficulties that arise initially. The challenge of adapting to the CI and the gradual—not immediate—acquisition of auditory skills can cause intense emotional distress and disappointment. Emotional difficulties may be experienced by adults with wide-ranging hearing histories. In this post, I would like to share some experiences that I have witnessed.

Recipients Who Experienced Progressive Hearing Loss

People who lost their hearing progressively later in life might experience the sound provided by a CI as unpleasant (not "natural") and their speech perception via CI might not meet their expectations. They might not accept the time required to adjust to the CI. Their wish is to experience normal hearing again. It will take them some time to acquire improved hearing skills and to accept that their CI cannot provide normal hearing. Someone who lost their hearing later in life may be disappointed when their auditory progress does not occur as quickly as they had anticipated.
It may appear that people who had progressive hearing loss have the least need for auditory rehabilitation given their prior auditory perception. On the other hand, such recipients may experience high levels of stress. They may derive special benefits from an auditory therapist who can help them to recognize their achievements rather than dwelling on their difficulties. A therapist can also help the new recipient understand the gradual nature of the rehabilitation process, provide answers to questions and help them remain positive about the process.

Recipients with Usable Residual Hearing in One Ear

People who have usable residual hearing in their non-implanted ear may feel that the hearing aid continues to provide the dominant hearing information during the initial timeframe after activation while the implanted ear provides less usable information, even to the extent that information from the implanted ear interferes with speech understanding. Auditory training improves the implanted ear auditory abilities as well as contributes to the CI users' faith in the potential auditory benefits of the implanted ear. The concern is that people with functional hearing in their non-implanted ear do not continuously use their implant and may not give their implanted ear sufficient opportunity. An auditory therapist can help such recipients to maximize the benefit from the sound from cochlear implant and merge the two sources of sound.

Prelingually Deaf Recipients

This group includes people who never experienced normal hearing and must learn to adjust to entirely new auditory stimulation. During the first period after implantation, the auditory information they receive may be incomprehensible and may be perceived as disturbing noise. The silence that engulfed them before cochlear implantation is gone and they are exposed to many sounds without the ability to distinguish or choose which sounds are worthwhile to focus on. These recipients may struggle to acquire basic auditory skills such as identifying environmental sounds, speech sounds, and words and phrases. They may also need to learn about the impact of various acoustic environments on speech perception.
Prelingually deaf recipients who come to CI may also need to learn a good bit more about spoken language communication. During the rehabilitation process, CI recipients are gradually exposed to new sounds and they expand use auditory information in their daily life. This is a fascinating journey in which CI users' experience auditory learning and growth, however they also become more aware of their past and present limitations. This rehabilitation process requires emotional strength and support.

Concluding Thoughts

It is important to remember that the course of adjustment and rehabilitation is very personal and there are various possible scenarios relative to one’s emotional adjustment. Every scenario is legitimate and should be accepted sensitively and patiently by the CI recipient’s family, their CI team, and by the CI user himself. One’s emotional reaction is not predictable. It is affected by a variety of personality factors and by the course of the auditory learning as well as the support from the recipient’s family, social environment, and his or her CI team.

Recommendations

If you are experiencing emotional difficulties arising from cochlear implantation, know that you're not alone. Like many other starts in life, the beginning of the path can be difficult but it does not necessarily imply the future and there is no reason for despair. Remember how brave you were choosing to go through the surgery. Continue to have faith that your dreams for a better quality of life will eventually come true. As explained in this and earlier posts, CI rehabilitation is hard work.
In addition, CI rehabilitation is a very dynamic process that requires emotional adjustment skills, flexibility, positive thinking and faith in yourself and your CI team. If you feel that the process of adaptation to the cochlear implant is an overwhelming emotional burden, please seek professional support. You can contact your CI team and seek the appropriate assistance.

 

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Adult CI Support Groups

Posted By Naama Tsach, PhD, Wednesday, June 8, 2016
Updated: Friday, May 27, 2016

I am so happy to welcome back a special guest in my Blog. Linda Daniel is an audiologist and Auditory Verbal Therapist who serves as the director of HEAR in Dallas. Linda accepted my request to share her unique experience with us in initiating a support group for adult cochlear implant recipients. This is the second of two posts highlighting various challenges and dilemmas faced by adult CI recipients. Their discussions also provide an optimistic perspective of the potential benefits that adults can derive from participation in such support groups as part of their rehabilitation program. Thank you Linda!
Best Regards, Naama 

 

Adult CI Support Groups: Linda Daniel Guest Blog/Part 2 

The Adult CI Support Group at HEAR In Dallas has a few other goals and purposes. We do not have captioning at this time for several reasons. First, captioning services are costly and there are no dues for the group. Second, everyone who attends is working on listening and communication skills along with learning to advocate for themselves. During the sharing, participants are encouraged to raise their hand and request clarification when needed or state what would help them such as “Could you please speak a little slower?” or “Could you please take your hand away from your face?” The group is a safe and understanding environment for practicing these strategies and allows participants to build skills and courage to do so “out there.” We have had hearing health professionals attend as well; they share their questions and concerns about interacting with individuals with hearing loss and the participants are gracious in coaching them in how they can be more sensitive to those they serve. The two-way sharing is such a beautiful and touching experience for all.

Excerpts from One Group Discussion
At one meeting, I posed these questions to the group: “Why do you come to the support group meetings? What do you get from it?” As they took turns sharing, I recorded their comments. This is a summary of what some of the participants shared.

FT—42 year-old man, post-linguistic progressive hearing loss, years of hearing aid use, and then CI 5 months ago

I was rather by myself just by being male then I became isolated even more as my hearing deteriorated. I didn’t admit I had a hearing deficit, which just made me more isolated. With hearing loss, there is so much unknown to experience – everything is all new ---and it’s good to be with people who are struggling like me. I now know I’m not alone in the struggle—we are struggling together. I come here to feel community and meet people who can sympathize and empathize with what I’m going through. This group is unique because we come together to support each other; the other group I’ve been to is a lecture-based group but does not provide the personal closeness and sharing of this group. I am grateful to hear from people who have had a CI for over 20 years share their experiences; I’ve had mine just five months. I learn so much from people at all stages of the journey.

RB--congenitally deaf, lifelong hearing aid user, CI and AR in her 30’s

So many CI users don’t feel Deaf and don’t feel Hearing. We’re in between the two groups. With the support group of people in the same situation, I now see that we can have a sense of belonging. We are a group—we do have a community: we are the group in between Deaf and Hearing! I also benefit from this group because we strive to strengthen our self-advocacy skills. I hear what others have done to advocate for themselves and it gives me the courage to try it myself. I feel so empowered when I break through one of my barriers. We’re learning to speak up for ourselves in the group…we tell each other is we can’t hear them, if they talk too fast or too soft. This helps me do this too in other situations that come up in life!


PS—55 year-old woman, post-linguistic progressive loss, years of hearing aid use, will get CI soon

I don’t have a CI yet and I’m amazed at the bravery I’ve heard from everyone’s sharing tonight. I’ve read tons of things about CIs but at the group, these are REAL people who have them and I feel honored to meet people who have the strength to go through this. My supervisor at work told me the most unbelievable thing that showed me how completely she does not know what my hearing loss is about and why I need a CI. She actually told me if I didn’t stress out, my hearing would come back. In the group, people showed me their reality with hearing loss and validated my experiences and my needs. These people have experienced what I am going through. With a hearing disability, we need so many people to assist us with so many things. It gets so awkward going through life misunderstood or being looked at like there’s something wrong with me.

BV—50 year-old woman, post-linguistic progressive loss, years of hearing aid use and recent CI

I came to the group originally because I wanted to meet a new community that has the same issues that I face as a CI recipient. I keep coming back because of the wonderful people I have met. Seeing all the bravery and courage makes me glad to come back. We talk about snags in our daily lives such as how to order food at a drive-through. It’s a frustration hearing people just don’t understand but the people in the group know what it’s like! Though we are all different in many ways, we all have a core of similar experiences. We give each other tips to handle life experiences. I also like this group’s FB page. We can throw out any question we want and others will respond and I get so many answers to read and see which one will work for me. When you’ve felt “different” for so long as a person with hearing loss, it’s great to feel the “same” as everyone in the group. It’s a great feeling and I take that feeling with me when I go home.

FE—30 year old woman, deaf since four years of age; years of hearing aid use, CI two years ago

I don’t always want to explain my CI to everyone over and over and deal with all the misconceptions about getting a CI. I’m lucky that I work in the field of deaf education because I’m around people who understand hearing loss. In the support group, I feel “power in numbers!” I get strength being with people who have CIs. I learn something new every time I am with people who have CIs. Deafness is The Invisible Handicap; hearing loss is very misunderstood. In the group, everyone understands how I feel. It reinforces that there are not CI “successes” and “failures.” Rather, there are a range of experiences and differences. Hearing what everyone goes through helps me count my blessings. The grief still comes back with the denial and the sadness and the group is where I know people understand how I feel.

GT—20 years old, congenitally deaf, CI since 2 years of age with Auditory-Verbal Therapy

I wanted to meet people like me so I could make friends with people who know how I feel. My mom is in the field of deaf education and even she can’t fully understand what I’m going through. But meeting others who have CIs, I feel they really understand what I’m going through. It’s nice to hear that I’m not the only one who struggles in a drive-through and who pretends to understand what someone says when I really don’t. Sometimes we laugh when we share the crazy things we ‘mishear’ during our day and what happens because of that! One lady shared that she nearly got fired when she told a co-worker something about a person in the office that she thought she heard but it wasn’t even close to right! We gasped, then laughed and nodded our heads, knowing how easily that can happen.

FS--deaf since age four; years of hearing aid use, CI in her mid-30’s

Before coming to the group, I though I was the only person with a hearing loss. I am the only person in my family who is deaf. The first time I came, I saw so many people like me and I was so excited. I love sharing experiences with each other, learning from each other and teaching each other about different devices. As much as my family loves me, they just don’t know how to support me. With the support of the group, I don’t expect as much from my family. I love this group—I come every time. I want to be independent. I don’t want my husband to have to be my ‘hearing’ for me all the time. One professor I had in college told me about the Disability Office and I found out about CART (Computer Assisted Real-Time Captioning). That was such a big step for me to be independent. This group helps me feel so much better and helps me know how to navigate life situations on my own.

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Adult CI Support Groups

Posted By Naama Tsach, PhD, Wednesday, June 1, 2016
Updated: Friday, May 27, 2016

I am so happy to host a special guest in my Blog. Linda Daniel is an audiologist and Auditory Verbal Therapist who serves as the director of HEAR in Dallas. Linda accepted my request to share her unique experience with us in initiating a support group for adult cochlear implant recipients. Her upcoming two posts highlight various challenges and dilemmas facing by adult CI recipients. Their discussions also provide an optimistic perspective of the potential benefits that adults can derive from participation in such support groups as part of their rehabilitation program. Thank you Linda!
Best Regards, Naama

  

Adult CI Support Groups: Linda Daniel Guest Blog /Part 1

After decades of working with children with hearing loss, HEAR In Dallas, my aural rehab private practice, now serves many pre- or post-linguistically deafened adults who have elected to pursue a cochlear implant. As I worked with them and listened to their experiences and struggles, I thought they would greatly benefit from meeting others in
Similar situations. One by one, as they came to therapy, I asked if they were interested in my starting a support group; each person answered “Yes” without hesitation.

I am a rehabilitative audiologist and host the group once a month in the evening in my office. We just finished our 7th month of meetings. Typically about a dozen CI users attend, ranging from college age through older adults. Though their ages and life stages are different, they feel great comraderie with one another as they share their joys and
struggles as people with hearing loss living in the mainstream of society. I function as the professional advisor of the group and attend every meeting.

In addition, I am the “ears” of the group. During our time together, if someone makes a comment or asks a question and it appears that they misheard the previous person’s comments, I clear up the miscommunication. We usually meet for 1 1/2 hours. If there are newcomers, we go around the circle and provide brief introductions—name, duration of hearing loss, when implanted. Then I state the topic of the evening such as “What I like most about my CI” or “My greatest struggle with my CI” or “What this group means to me." Meeting topics are solicited from the group for future meetings. We sit in a circle and everyone takes turns sharing. We pass a timer and each person sets it for three minutes before starting to share; the format is relaxed and interactive. The timer is a guide for an approximate time to share; after a person shares, others freely comment or ask a question of that person. They love their individual time to share and the free-flowing interaction and comfortable nature of the format. There is no advice giving, no discussion of the hearing health professionals, no promotion of device manufacturers. The primary goals are meeting others with a CI, sharing one’s experiences, dialoguing with others on topics of interest, gaining strength and learning tips from one another, and feeling a sense of belonging and community.

Excerpts from One Group Discussion
At one meeting, I posed these questions to the group: “Why do you come to the support group meetings? What do you get from it?” As they took turns sharing, I recorded their comments. This is a summary of what some of the participants shared. I will include additional participant comments in my next blog post.

RV—26 year-old woman, hearing aids fitted at 15 months and started Auditory-Verbal Therapy, then received a CI at age 4

Even though I’ve had a CI since I was 4, I have never been to a CI support group. I go whenever I can because I meet other people with cochlear implants and communicate with them without worrying what others think of me. In one meeting we talked about how others treat us differently and the misconceptions they have about us. It’s funny and sad at the same time what people say to us; it’s as if they don’t give a thought to how we feel before they start talking. One woman was at a party and the hostess told her, “You can go sit over there with my grandpa: he’s deaf too.” Come on! Really? We laughed and shook our heads; we all could feel what she felt. I take our group strength and solutions with me into my daily life in the hearing world. If you are struggling with your hearing in the hearing world, “This is definitely where you should go!”

SJ—39 year-old woman with congenital hearing loss, no intervention until CI and AR a year ago

The meetings have been a wonderful opportunity for camaraderie with people in similar situations. It has helped me feel not so alone in my experience with hearing loss. Nobody in my daily life has any understanding of my life before and after the CI. Being able to share my story with like-minded people.

 

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Unilateral Hearing

Posted By Naama Tsach, PhD, Wednesday, May 25, 2016
Updated: Tuesday, May 24, 2016

  
 

Thoughts about Unilateral Hearing, Unilateral Cochlear Implantation, 
and Bilateral Cochlear Implantation

During the early days of cochlear implantation, the procedure was performed in one ear only. Some users continued using their hearing aid in the non-implanted ear, sometimes with little benefit. Some CI users even noted that that their hearing aid might be interfering to some degree with their speech understanding but continued to use amplification to keep their residual hearing active in the event that they were able to benefit from future technology.

Growing awareness of the disadvantages of unilateral hearing loss and the benefits of bilateral hearing led, to two important changes relative to cochlear implantation:

  1. Bilateral implantation became a rehabilitative path chosen more for both adults and children;
  2. Criteria for implantation expanded to include people with some functional hearing in the non-implanted ear (e.g., moderate to severe hearing loss with some open set speech recognition). 

Appropriate candidates benefit from the advantages of bilateral hearing when using a conventional hearing aid in one ear and CI in the other. We'll talk about this topic in another upcoming blog post.

This blog post is directed mainly to those who have one CI—either those who do not use a hearing aid in the contralateral ear or those who use a hearing aid in the other ear but derive minimal benefit. Unilateral hearing should be considered in the context of the following questions:

  • What are the disadvantages of unilateral hearing?
  • What are the benefits of bilateral cochlear implantation?
  • When should someone choose to "go" bilateral?

The answer to the last question should be made on a case-by-case basis considering factors such as functional hearing in the non-implanted ear, years of hearing deprivation, and the person’s age. There is no conclusive answer that applies for all individuals. However, we can discuss the different effects of unilateral hearing on communication function as well as the advantages of bilateral cochlear implantation.

There is no doubt that unilateral CI can significantly contribute to one's auditory skills and quality of life. Many environmental sounds and speech sounds become accessible for unilateral CI users and a significant improvement is usually experienced in speech perception, especially in quiet conditions.

We have learned from those with normal hearing in one ear and hearing loss in the other ear, as well as the experience of people using one cochlear implant, that unilateral hearing imposes limitations for various situations in everyday life. Children with single-sided deafness, who have normal hearing in one ear, are at risk for lower language performance as well as social and academic difficulties. Many of these children report fatigue during class and difficulties in coping with school requirements. Adults with single-sided deafness may also experience difficulty in social settings, inattentiveness, stress, and headaches. Evaluations of people with normal bilateral hearing point that hearing with two ears contributes significantly to speech understanding, especially when listening to speech in noisy environments.

The challenges of unilateral hearing are due to reduced auditory ability in the following types of situations:

  1. Speech is directed to the side of the "poor" ear;
  2. Individual has difficulty knowing the speaker’s location to aide speechreading;
  3. Detection and understanding of soft sounds as two ears provide “redundancy”;
  4. Understanding speech in noisy situations.

Unilateral CI users often report on similar difficulties. Yet we cannot consider single-sided deaf individuals and those with bilateral hearing loss with one CI as one and the same because a cochlear implant does not provide normal hearing. Therefore, the difficulties of unilateral CI users are typically greater compared to those of people with normal hearing in one ear. 

These considerations are at the heart of why we should closely examine the potential benefits bilateral cochlear implantation for everyone. So, what can we learn from the literature? We find research focusing on adults' auditory function with one CI versus two CI's (i.e., how their function changed with a second CI). We can also find research comparing the function of adults who have unilateral CI with adults who have bilateral CI. A review of 20 studies* highlights the following key findings: 

  1. Speech perception in quiet. There are no consistent findings of bilateral advantage over unilateral CI use.
  2. Speech perception in noise. Studies consistently demonstrate the benefit of two cochlear implants over one and these advantages increase as the acoustic conditions worsen.
  3. Localization. Studies demonstrate the benefits of bilateral hearing to identify the location of a speaker or environmental sounds.
  4. Daily activities and quality of life. Self-reported questionnaires found bilateral CI benefits for spatial hearing, ease of listening, quality and clarity of sounds, and social interactions. These findings suggest that bilateral cochlear implantation has real potential to enhance communication and orientation, reflected in various daily situations, and thereby improving quality of life.

As is the case for an initial cochlear implant, the decision on a second CI is affected by various parameters beyond the patient's motivation to take another step towards better hearing. There are pros and cons that are unique to each person. If you wish to consider a second cochlear implant, the recommended first step is to consult with your CI team. Realistic expectations are important. While there is the potential for quality of life improvements, it is important to recognize that bilateral CI will still not provide normal hearing. Further, one must consider that there are rehabilitation requirements in order to maximize outcomes with the second CI and that this is essential to your success!

*Van Schoonhoven J, Sparreboom M, van Zanten BG, Scholten RJ, Mylanus EA, Dreschler WA, Grolman W, Maat B (2013). The Effectiveness of Bilateral Cochlear Implants for Severe-to-Profound Deafness in Adults: A Systematic Review. Otology & Neurotology, 34 (2), 190-198.



 

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Self-Learning Tips: Part 2

Posted By Naama Tsach, PhD, Monday, April 18, 2016
Updated: Tuesday, April 12, 2016

 

Using Recorded or Other Materials in Self-Learning Rehabilitation

There are a number of recorded and written auditory rehabilitation programs that were developed specifically for rehabilitation post cochlear implantation. You may also use other general materials such as books on tape (in different lengths and linguistic levels but preferably with minimal background music or noise) or English as a Second Language teaching materials such as Rosetta Stone®.

• Using written materials will be more effective if you are able to be creative and adaptive in their use. In addition to repetition, be aware of the appropriate speech rate of the stimuli presentation. You can use the same stimuli in a more normal (higher) speech rate with time, as your speech perception skills improve. Similarly, you can use more speech-reading (lip-reading) cues during the first period of training, moving towards auditory-only perception with time. Another way to adjust the existing materials to your needs is to add stimuli that have specific relevance to your life. For example, you may include the names of your relatives and friends, common sentences from your everyday life and so on.

Recorded materials are typically more difficult to understand than live voice and may pose greater auditory challenges. You may find recorded materials to be overly challenging during the early rehabilitation timeframe. If this is the case, try using them later when you are a more experienced CI user. Not every CI user has a positive experience with recorded materials so don’t feel that using them is a requirement. Adjust auditory training materials to your own auditory abilities.

• There are a number of interactive rehabilitation programs that run on one’s personal computer and are designed to help cochlear implant recipients practice and improve their listening skills. Some of these products are free including Angel Sound™ Tiger Speech available at http://angelsound.tigerspeech.com/.

• If you wish to develop your appreciation of music, practice listening while reading the lyrics for songs. These can typically be downloaded from music websites. You may wish to begin with children’s songs—which often have simple words, a strong beat and a limited number of instruments. When you feel you can move forward, build a hierarchical list of songs considering certain parameters. These parameters might include tempo, quantity and type of instruments, single vocalist songs versus multi-vocalist bands, etc. Even people with normal hearing are unable to understand every word in every song. Be selective about the songs you are choose and don't be surprised if you miss some words. It’s not a competition! You might also check out the websites of the CI companies for more tips and music listening products.

• When watching TV, try following some speakers without using captions.

Talking on the phone presents special challenges and will be discussed separately in a future blog posting.

• Establishing and expanding auditory memory skills can have important implications for your ability to understand speech. The longer you had poor discrimination with your hearing aids, the longer and harder you must work on your auditory memory skills. This kind of work can be done using repetition tasks utilizing lists of words (e.g., repeating 2-5 words out of 10 word list). As your speech perception skills improve, you can use words from a given category (e.g., names of cars, football players) or a given topic (e.g., work, summer, vacation). For advanced CI users, you might repeat 2-3 sentences from a list of short sentences or work on perception of two-phase instructions (e.g., "Take your shirt and put it under the table") or listen to a short story and try to recall as many details as possible.

Report specific difficulties in speech perception to your audiologist (e.g., the consonant /z/ perceived as /s/ and vice versa). Some difficulties may be resolved with mapping adjustments. Most will be resolved with CI usage and auditory practice. It is possible that you will not be able to identify all the consonants and vowels. However, it may not impede your communication interactions since people always use context combined with verbal information to understand speech.

In summary, there are many ways for you to improve your auditory skills outside of a formal rehabilitation program with a trained professional. The above is intended to give you ideas; your CI team may offer additional guidance. The world of sound surrounding us provides countless opportunities for auditory learning. It requires your attentiveness and dedication as well as constructive support from your family and friends. However, if there are emotional or other difficulties associated with adapting to your cochlear implant and the rehabilitation process, don’t try to do everything alone. Reach out to the appropriate professional for support in getting back on a positive track.

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Self-Learning Tips: Part 1

Posted By Naama Tsach, PhD, Tuesday, April 12, 2016
Updated: Monday, April 11, 2016
Post surgical support for many adults consists mainly of appointments with their CI audiologist for the purpose of monitoring speech perception and mapping the sound processor. If you are one of many CI users who does not have access to a Speech Language Pathologist, this post will have special relevance for you.

Practical tips for self- learning auditory rehabilitation

• In the absence of speech language therapist to help manage the rehabilitation process, you are the case manager of your own rehabilitation. This is an important responsibility with many implications.

• First, you will need to pursue available professional resources yourself. Ask questions of your mapping audiologist and don't wait until your next meeting if you need answers. Immediate answers can be crucial. Report any changes in your hearing or other issues to your CI team.

• Ensure that you understand how to maintain and use your processor. The recipient kit comes with different accessories. You might not need them during the initial period of using your CI, but later on they can be very useful. Ask for professional guidance to enjoy the full benefits of your technology.

• Use your CI regularly throughout the day. If there are any restrictions or difficulties in your CI daily use, inform your audiologist and look for suitable solutions.

• Knowledge can be a great source of strength. In order to acquire this knowledge, participate in lectures and conferences, read professional papers and books, visit the online website for the company that manufactured your device, and stay abreast of technological improvements.

• Online CI users groups can provide you with many practical answers as well as emotional support.

• Document your hearing follow-up outcomes and ask your audiologist to explain any changes.

• Offer to participate in research at your CI center. This could provide you with additional knowledge as well as additional opportunities to meet and talk with the CI team.

• Be optimistic but realistic about your rehabilitation goals. Discuss your goals with your audiologist. Setting realistic rehabilitation goals is often the key to a sense of accomplishment and success.

• Be aware of the fact that spontaneous auditory learning during natural situations is not always possible. Typical everyday (noisy) acoustic conditions mask parts of the speech signal. In addition, natural communication interactions include a lot of inaccessible speech information (e.g. multiparty conversations, classroom situations, group meetings, and so on). Therefore, especially in the first period of your CI experience, you need to set aside time in a favorable setting to practice your hearing skills.

• Ask family members and friends to help clarify sounds. Choose one person to be your auditory trainer. If possible, this person should accompany you to as many meetings with your CI team as they can to help motivate you to acquire auditory skills. It may require lots of patience on their part for the repetitive practice required for success. They will also want to be there when you wish to share your concerns and frustrations. From my experience, these partners experience high levels of satisfaction and gratification for your trust and for the chance to be a part of such an important phase of your life.

• Know that auditory learning after cochlear implantation is a long-term process, characterized by changes in objectives and in the pace of progress along the way. We will discuss this issue in the future. However, for now, it is important to note that efficient auditory learning should become part of your daily life. This is not a short-term effort, but a long-term commitment.

In my next post, I will share information on specific recorded and other materials that you may find useful in your auditory self-learning rehabilitation program.

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