Patient Testimonials

Cochlear implant according to the San Francisco Symphony
VladislavD.

I lost my hearing literally overnight. My left ear was lousy for decades but my right ear was O.K. Actually, I did not wear any hearing aid on left because my right ear could manage it. My deafness was a shock for me. It was clear our regular subscription to San Francisco Symphony was at its end: we would not subscribe the new season. From time to time my wife expressed her sorrow and asked if there was something we could do about it. Once or twice she even said she would subscribe just herself. But we both knew she would go to a concert even with me or not at all.

As deaf I started to wear a big hearing aid on my left ear. For over thirty years, my left ear was a pariah. People knew they had to talk to me from my right side. Now my left ear became my primary communication channel. I was desperate but realized I could not afford any self-pity. This would be even more destructive. I was deaf and my only hope was a cochlear implant. There was nothing left to decide. There was not any alternative to the implant.

At San Francisco Symphony, we had two or three concerts remaining from our old subscription. I joined my wife, but I was just escorting her. The hearing aid helped me a bit to find my way through the musical adventure. But my right ear was screwing up any sound over ninety decibels with a brutal and perverse efficiency. In so familiar Brandenburg Concerto No. 3, I was lost within a few measures. Only from time to time, I found myself but disappeared quickly in the dark forest of hardly discernable and dull sounds.

The cochlear implant is primarily to mediate human talk. Listening and enjoying music is just a cherry on the top of the cake. The implanted people are said to enjoy only the old music they used to listen during their hearing days. Doctor Roberson, my future surgeon, confirmed that. But he immediately added that there were implanted people who could enjoy even new music.

When I got my cochlear implant, I started listening to music immediately after my activation. I do not have any musical education; my singing was usually considered a practical joke. I can play guitar a bit and, in strict privacy, a keyboard. I am not a musical person but for unclear reason, music is important to me. So I loaded my iPod with some music, connected it to my speech processor and taught my brain to listen to music in mono. Chopin’s Nocturnes were fine. But Four Seasons, a familiar uncomplicated music, was just an impenetrable mixture of sounds. Perhaps with both ears it might be better. Perhaps with the help of SmartLink and MicroLink, I could turn the expedition through a forest of peculiar sounds into an enjoyable walk. I bought both of them.
San Francisco Symphony started its new season and I suggested my wife we would subscribe it. She liked the idea but proposed to buy the tickets for one concert only. After some hesitation, I agreed because I was not much sure what to expect either. I ordered the tickets and some CDs with the music on the program. Perhaps I could get more familiar with it before the concert and then I would have better chances to enjoy it. Of course, I was busy with other things and I would have to manage the concert without any “prelistening”.

On Day D my wife returns from her work at seven twenty. She quickly changes. We jump into the car and drive to the Flint Center in Cupertino. My wife is chewing a sandwich I prepared for her. It is difficult to enjoy music when you are hungry. We arrive on time. We have even a couple of minutes to study the playbill. My hearing aid beeps to let me know the battery is low. No problem, I got my pockets full of spare batteries and other useful things. I replace the battery and now I am really ready. SmartLink around my neck, MicroLink and the speech processor behind my ear. Strong noise I can hear makes me nervous. It does not sound like a normal audience buzzing. I ask my wife if she can hear the air conditioning. No, she cannot. It puzzles me even more. I almost cannot hear the musicians tuning their instruments on the stage. If this loud and monotonous noise continues during the performance I am lost. And then the conductor comes. The noise is gone and the San Francisco Symphony starts playing a music written by a composer, who was not so lucky to get his cochlear implant. Dramatic music is homage to a Dutch count executed by Spaniards more than four centuries ago. I am sitting in my chair and am in shock. I have not heard this music before. It is completely new for me. I feel tears on my face. I am sorry, Egmont, it is not because of your sad destiny. It is because of music, I can hear, I can percept, I can feel. The sound is not one hundred percent clear, it has some echoes and normal ears would hear it differently. I cannot tell if this sound is oboe or viola. But I can enjoy it. I am amazed. The full symphonic orchestra, almost one hundred musicians play and only twenty four wires in my head transfer this beauty to me. The implant is for speech understanding and sounds not recognized as a human voice are suppressed by complicated algorithms. I do have a speech processor not a music processor behind my ear but I still can hear music. Not a sound of musical instruments. Music.

- D.L. (A 15 year old musician)

My hearing loss began at the age of 2 years old due to treatment for illness. At the time, technology had not evolved as much as it has now. Back then, my first hearing instrument was an analog hearing aid. As a patient with a profound hearing loss, receiving hearing aids were influential in my life. They allowed me to enter the world of sound and later, the world of music. My current hearing aids that I received only months ago are by far one of the best ones that I have ever owned, thanks to the constantly evolving technology of today. While testing in the sound booth, results showed that my speech perception had improved greatly. But the music recognition was a little disappointing. This is where my audiologist (Kelly) at the California Ear Institute comes in. She put all of her efforts in helping adjust my music program without sacrificing my speech program. She diligently devoted her efforts into making my hearing aids better suited for my own pursuits. We spent numerous hours looking up pitch frequencies and adjusting the program until the situation was made better. As a 15 year old teenager, I constantly am thankful for what hearing aids has given me for both speech and music purposes and I encourage those who are considering one to have one fitted because it truly is worth it. My hearing aids have allowed me to be mainstreamed completely at school and helped me go far in my music pursuits. Who would have thought that playing the piano and viola would be possible? How about being able to play in my high school orchestra and a local youth symphony? The possibilities are endless and I owe the many highlights of my life to my hearing aids because they have helped me discover more windows of opportunities in my life. But excellent hearing aid performance and a well-trained, devoted professional audiologist go together like peanut butter and jelly. You can’t have one without the other and I got both of them here.

Christina

The journey my family took to cochlear implants is not the typical one. You see, I graduated with a bachelor’s degree in Deaf Education in 1998. You would think that if anyone could handle the news that her child is deaf, it would be me. That couldn’t be further from the truth!

My husband and I first found out that our daughter may have a problem with her hearing was when we were in the hospital the day after she was born. The nurse informed us that she did not pass her newborn screening. She then assured us that it was probably just fluid in the ears and we should follow up with our pediatrician. Our pediatrician referred us to an audiologist and the same test was performed on her when she was 6 weeks old. She failed that one, too. We scheduled an appointment to do an ABR scan immediately.

Meanwhile, I was performing my own “hearing” tests. I clapped loudly to see if she would startle. I would pretend to sneeze and watch for a jump. I took the lids to my pots and banged them while she was sleeping. Nothing. I remembered enough from my audiology classes to know what the ABR scan was going to show.
Sitting in the darkened room holding my precious baby as the audiologist ran test after test on her was agony. I watched the computer screen intently, making mental notes of where he plotted her responses, or rather lack of responses. I kept meeting my husband’s eyes, shaking my head. I nearly lost it when the audiologist tested the bone conduction test on himself to make sure his instruments were working. When he turned on the lights my tears had already started. I heard nothing he said after “profoundly deaf.” By the time we made it to our car, we were both crying uncontrollably.

The next day, my husband, always the optimist, was ready to make a plan and move forward. He was looking up cochlear implants on the internet and seemed very hopeful about all he was reading. I, on the other hand, was still grieving. He kept reassuring me, saying things like, “With cochlear implants, she will hear,” and “We have options; it’s not the end of the world.”

What he didn’t understand was how difficult the decision to implant was going to be for me. I spent 4 years in college immersed in the Deaf* community. The school I attended was pro-ASL. “Cochlear Implants” was almost considered a dirty word. I had friends who were Deaf that came from hearing families. Some of these friends had expressed to me how they felt that their parents didn’t accept them for who they were. They felt that they never truly “belonged” until they went to college and found others like themselves. It broke my heart to think my daughter might think I didn’t love her because she was deaf.

I reached out to a friend of mine whose granddaughter was deaf and had received cochlear implants at age 3. She put me in touch with her daughter-in-law, Traci, who talked to me for 2 hours. Traci told me what the steps would be to get cochlear implants, the doctors we would need to see, and all the hoops we would have to jump through to get there. She also gave me the names and numbers of organizations that would put us in touch with other families like ours.

Although I took copious notes, I still wasn’t convinced I could do it. But I called California Ear Institute and set up an appointment anyway. We did all the tests, met with Dr. Roberson, and set up an appointment for the surgery. I would have about 5 months to get on board with the surgery.

So what finally convinced me I was doing the right thing for my daughter? A couple of things! The first was finding out that my supervisor in college, a Deaf man I highly respected, had encouraged his wife to get cochlear implants. The second was meeting a deaf woman in the waiting room of CEI. She had lived both a hearing life and a Deaf life. She felt her parents had done what they thought was best for her. She was now ready to make the decision to get cochlear implants and was very excited to start the next chapter in her life. The last may seem silly, but was pretty big for me. I learned that the ASL sign for cochlear implants had changed. While I was in school it was similar to the sign for vampire, except made behind the ear instead of on the neck. Now it is a tap behind the ear.

Here we are, a year and a half later. Carys is now two and a half. She is a charismatic and outgoing toddler and loves to dance to Yo Gabba Gabba and The Wiggles. She has a 60+ word vocabulary and is quickly approaching the speech levels of her hearing peers. We anticipate that by the time she is ready for Kindergarten she will be able to be fully mainstreamed into our home school. And the best part? Hearing her say “I love you.”

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