Dybala: Today, we have a person with a fairly unique perspective on the cochlear implant experience. Tina Childress, M.A., CCC-A, is an audiologist who is a bilateral cochlear implant user and works as a Consumer Services Specialist for Advanced Bionics. Thank you for spending some time with me today, Tina.
Childress: Glad to!
Dybala: Would you give us a little bit of your personal and professional background?
Childress: I obtained both my bachelor and masters degrees at the University of Illinois at Urbana-Champaign, stayed in Champaign, and started my audiology career as an Educational Audiologist in 1998. I worked part-time, and so I was able to add some other jobs to my plate. I helped out at the state residential school and then also had a job as a consultant/trainer for a service project where I traveled around the state presenting about how to help deaf and hard of hearing students in the schools. On top of that, I was teaching some classes at my alma mater, which I still do. In October 2005, I joined Advanced Bionics where I use my audiology expertise and personal experiences. It has been wonderful for me since this company makes the cochlear implants that I chose!
Dybala: I am curious, do you know how many audiologists there are who also have a hearing loss?
Childress: There are quite a few deaf or hard of hearing audiologists around the world, of which, a handful of us have cochlear implants. In fact, there will be a meeting of this group (e-mail invitation included at least 50 names) at an upcoming professional conference, and I am looking forward to participating in this for the first time this year. Another great resource that I have found is the Association of Medical Professionals with Hearing Loss (AMPHL). I had the opportunity to attend my first AMPHL conference at Gallaudet in the fall of 2005 and met some fellow deaf and hard of hearing audiologists face-to-face. It was great!
Dybala: It is my understanding that you had been working for a year as an Educational Audiologist when you first started to lose your hearing in 1999. You tried hearing aids, then got your first cochlear implant, and finally, became bilateral. Do you think this made the process easier or harder based on your professional background?
Childress: Both! Having a rapidly progressive loss, I definitely went through all of those stages of denial, anger, bargaining, depression and acceptance that others with hearing loss often experience. But being an audiologist was a doubled-edged swordI inherently understood the probable outcome (deafness), but this was also a comfort because I could understand it fundamentally and physiologically. Coupled with the fact that I had amazing support from my family and colleagues, I know this situation could have been much more difficult. My decision to go bilateral definitely was affected by my background as an audiologist since I readily understood the benefits of bilateral hearing and the technology offered in todays cochlear implants.
Dybala: Lets go back to 1999 when you first started to lose your hearing. Take us through what some of your physical symptoms were and how you first identified your hearing loss.
Childress: My A-ha! moment occurred when I was assisting my coworker on a hearing test. My job was to sit next to the student and keep him focused on the listening task. The beeps were coming through the speakers because the student wouldnt wear headphones. Well, the beeps were coming and the student was responding appropriately by putting a small toy into a bucket. Further into the testing, I began to question his responses because it appeared as if he was just putting toys into the bucket but not necessarily hearing the beeps. I happened to look up and saw my coworker reinforcing his responses with a thumbs-up and I said to myself, Gosh! Im not hearing these sounds and shes testing for responses in the normal hearing range. After the student left, we did a hearing test and my results indicated a mild to moderate flat sensorineural hearing loss.
Dybala: You then went to an ENT specialist, what was the diagnosis and treatment at that point?
Childress: That afternoon, I went to the clinic and had a more comprehensive audiological evaluation. Some of my results were inconclusive so it was recommended that I return in a month for further testing. My hearing levels continued to fluctuate during that time period. Eventually, I was put on a regimen of steroids in an effort to stabilize and hopefully reverse the hearing loss. After discussion with several specialists around the country as well as the result of several lab tests, my diagnosis became Autoimmune Inner Ear Disease. Its rare, accounting for less than 1% of hearing loss. I got my first pair of hearing aids in the summer of 1999. By November 1999, I had progressed to a severe-profound hearing loss.
Dybala: At what point did you decide to get an implant? What made you choose an Advanced Bionics device?
Childress: By the time I had reached the severe-profound range, I was no longer able to use the telephone and relied on email, TTYs and the Relay. Because I was in a signing environment, at least I could communicate with my coworkers and colleagues. Doing speech perception testing (seeing how well someone is able to hear and repeat back words) is where I really noticed my limitations. It got to the point where I needed someone in the booth to be my ears and help score this testeither my coworker, our secretary, a staff member, or caregiver. Doing listening checks on some of the lower-powered hearing aids was also not possible. In August 2000, I went for an audio and my husband accompanied me in the booth. Even with my hearing aids on, I scored poorly on the sentence test. That was when we decided. I was implanted one week after that appointment.
When it came time to picking a device, they basically gave me brochures to all three companies and let me decide. I chose the Advanced Bionics (AB) device (formerly known as Clarion) because of features such as rechargeable batteries, a body-worn processor with only a headpiece and cable (i.e., nothing sitting on my ear), future speech processing capabilities of the Platinum ear-level processor (i.e., I wasnt limited to a particular strategy that could potentially be different than my body-worn processor), the advanced technology, and the excellent customer service that I received from the company. Its funny how things have come full-circle, because talking to people in the Bionic Ear Association (BEA) and seeing such positive responses on the forums were major factors that swayed me toward AB. Now, Im a staff person for the BEA!
Dybala: At this point, you have been implanted with a cochlear implant (CI)in one ear and you were still using a hearing aid in the other ear. I have sometimes heard that this type of setup is not encouraged as the two signals are so different. What was your experience as far as having to relearn how to hear?
Childress: I found that I had a hard time giving up my hearing aid, even though it was giving me minimal benefit. I think it was the audiologist in me who wanted to keep binaural hearing as long as I could. While the two signals are very different, it still amazes me how much the brain can adapt! At first, I had this echo effect where I heard through my CI first and then my hearing aidthis went away quite quickly. As a former hearing person, I describe it this way: my hearing aid gave me information that sounded more naturalwhat I remembered, but not clear. My cochlear implant allowed me to talk on the phone but did not seem natural (at first). As I have had this first CI now for five-and-a-half years, the sounds that I hear are now my natural. When I wore my hearing and CI together, the sounds integrated nicely, and I felt I was getting the best of both worlds. I usually encourage people to keep the hearing aid in the other ear if they feel it helps them. The only time I would discourage hearing aid use is if the signal is measurably interfering with cochlear implant performance.
In terms of relearning how to hear through my CI, it basically entailed learning how to make sense of all of the blips, buzzes, and whirs that I seemed to be hearing in the beginning. For me, that happened quite quickly; I went from essentially 0% open-set sentence recognition to 87% one month posthook-up. Of course, we cannot generalize these results to everyone, but this was my particular experience. I supplemented my relearning with aural rehabilitation techniques such as books on CD and telephone practice. Once everything started to click, progress continued quite quickly. I do find, however, that I am still learning new sounds every day through my cochlear implant (now implants). For example, I heard a plopping sort of noise in my kitchen one day and asked my husband what it was, and he explained that it was the ice maker on our relatively new refrigerator/freezer. Now, as a former hearing person, I had heard that sound before, just not through an implant!
Dybala: I would imagine that your rapid adjustment to the CI was partially due to the fact that you had only recently and suddenly lost your hearing. So, at what point did you decide to go bilateral?
Childress: Research points to the fact that people who lose their hearing quickly and are implanted quickly are more likely to progress faster with their cochlear implants since they have such good auditory memory and their auditory pathways have not been deprived for that long.
I stopped using the hearing aid in my non-implanted ear about three years ago when I seemed more to be feeling sounds than hearing sounds. It was about that time, when my daughter (now almost five years old) started developing more language and became more mobile. Dont get me wrongI was able to hear a lot of her speech development and all of those wonderful sounds that babies and toddlers make, but I still felt like I still was missing something. That coupled with many of the problems associated with unilateral hearingdifficulty listening in noise, inability to localize (pretty important for finding your toddler!) and not hearing or being aware of sounds on my non-implanted side pushed me in the direction of pursuing a bilateral implant. I have been a candidate for years but did not pursue it due to insurance issues. When my audiologist informed me that our insurance was now approving payment for bilaterals, I quickly signed up. It was as simple as that, and I have absolutely no regrets.
Dybala: When did the trend start for bilateral implants?
Childress: About eight years ago, the University of Iowa started a research program in bilateral cochlear implants. Since then, there has been a growing interest in bilateral CIs, especially in children. Clinically, the largest population of bilateral CI users is like me, those who already have one CI and then they get a second later on (known as sequential implantation). Likely the trend will increase with a growing interest for getting bilateral CIs in one surgery (known as simultaneous implantation), especially for children.
Dybala: You mentioned the great patient relationship work that Advanced Bionics does, and have obviously put your money where your ears are by going to work with them as a Consumer Services Specialist! Could you describe the type of work that you do for them?
Childress: In my role as a Consumer Support Specialist for the Bionic Ear Association (BEA), I have the privilege of supporting current users and candidates, both adult and pediatric. I can do this via email, telephone, participating in local meetings, or attending and presenting at workshops and conferences. I also work with pairing up candidates with a BEA Volunteer (adults or parents of children) who have already gone through cochlear implantation. There are three Consumer Services Specialists (Sandy Mintz, Edie Gibson, and me) who perform this role, and Jennifer Raulie coordinates our BEA Support Center. Sue Greco is the new Director of the BEA and works closely with Sandy, who is also the Consumer Services Supervisor. Also, the BEA works very closely with our respective Regional Teams of Clinical Specialists (those who have direct contact with the cochlear implant centers) to support them in their needs.
Dybala: Are you active in other support/advocacy type groups?
In terms of other groups, lets start with the most recent. I am a Director with AMPHL, an Advisory Board Member for Illinois Families for Hands & Voices, a committee member of the Illinois Late Deafened Adults/Hard of Hearing Issues Committee, as well as a member of different cochlear implant support groups in the area. When I worked as a consultant/trainer for the state service project , I was often asked to talk to parent and student groups about my experiences and still get called back every once in a while. I really enjoyed that part of my job because I felt like I could really relate to these students and the parents understand that I understand. I also have colleagues that ask me to guest lecture for their college classes.
Dybala: AMPHL www.amphl.org is a great organization, could you go into some more specifics about that organization and the work you have done with them?
Childress: This is a fantastic group of people of various hearing loss types, communication strategies, and diverse medical professions, who are pursuing or have succeeded in reaching their professional goals in the medical field. Many of them have struggled with the same issues that our deaf/hard of hearing students deal with, in addition to the demands of medical school, veterinary school, pharmacy school, and audiology programs. AMPHL strives to get the word out that as a deaf or hard of hearing individual, YES YOU CAN make it in the medical profession! We have mentors, networks, advocacy groups, information and resources (for example, a large information pool on amplified stethoscopes) as well as a Board committed to making this organization succeed. We also have an online forum where students or professionals can ask questions, and someone will respond either with how they coped with that situation or where they got help.
Dybala: Getting back to your story, what are the two devices and coding strategies that you use on your ears?
Childress: I have the Clarion C-1 internal device on my right side that I received in August 2000. I interchange using my Platinum Series Processor (body-worn processor) and my Platinum ear-level processor and use the MPS speech processing strategy on each of them. I have the HiRes 90K Bionic Ear internal device on my left side that I received in December 2005. I use my Auria ear-level processor and use the HiRes-P processing strategy. Having both the older and the newer technology has really allowed me the opportunity to help out the consumers more because I am able to try many things myself such as trying out patch cords, different FM systems, connecting to telephones, and basically trying out various hearing assistive technology.
Dybala: How did your adaptation to the second implant differ from adjusting to the first implant?
Childress: Well, I definitely knew what to expect at initial stimulation the second time and was pleasantly surprised when once again, I had some open-set sentence recognition. I find the hardest thing for me to do bilaterally is to find time to work on my new implant alone because I do so well with my first implant, I feel like Im not pushing myself hard enough to do things like talk on the telephone with my second implant. I am doing some self-guided aural rehabilitation (AR) at home both with Internet websites as well as trying out ABs new AR materials, which I love!
Dybala: One would assume that you would get the added benefit of hearing again through two ears such as localizing sounds and improved understanding in noise. What were some of the advantages that you experienced?
Childress: Definitely both of those things that you just mentioned. I recently forgot where I had parked my car at the Mall and before, I would press the unlock button and look for the flashing lights. I decided to challenge myself with my two implants and so I closed my eyes, pressed the alarm button and by listening for the car horn going off, I was able to localize where my car wasvery cool! For improvement in noise, I noticed the benefit recently when I was sitting across from my husband in a noisy restaurant; his voice just seemed to pop out at me from the noise. In addition to being bilateral, I think this particular situation was also helped by the fact that I was using T-mics on both my ear-level processors. Because the microphone from the T-mic sits at the opening to my ear canal (instead of on top of my ear like with behind-the-ear hearing aids), I get to take advantage of the natural shape of the ear facing forward, and it really does focus my listening on what I am facing.
Dybala: There is a natural directional advantage that is provided by the outer part of the ear or pinna, so that makes sense to me. What else?
Childress: Another advantage as a bilateral user is still being able to hear when the battery in one of my implants needs to be changed. In 15 to 20 seconds, Im back on the air bilaterally again, but I dont really miss a beat anymore. I think my daughter is also enjoying being able to whisper to me on either side. I appreciate the feeling of being balanced again and not needing to turn my head to hear better. I feel less stressed in listening situations, even difficult ones, and love the full effect of music in stereo.
Dybala: Well Tina, thank you for sharing your story and expertise with us today. I will give you the last word. What advice do you have for someone who is thinking about getting a first or second implant?
Childress: As a hearing professional and a cochlear implant user, I have the advantages of both worlds. I encourage those of you out there considering one or two cochlear implants to investigate your options, talk to your family, ask your audiologists, and speak to cochlear implant users. If you want to talk to someone who has walked in your shoes, please contact me through the BEA (bionicear.com), and I would be happy to connect you with someone who can help. For people with severe to profound hearing loss, with minimal benefit from hearing aids, it gets to the point where there is not much left to lose. Look at how much you have to gain!
About Tina Childress
Tina Childress, MA, CCC-A, is a bilateral cochlear implant user and an Audiologist who works as a Consumer Services Specialist with the Bionic Ear Association at Advanced Bionics. She can be reached at Tina.Childress@advancedbionics.com
About Advanced Bionics:
Advanced Bionics Corporation is a global leader in the development of implantable, high-technology neurostimulation devices. Our bionic technologies include new treatments for deafness and chronic pain. www.bionicear.com/