BC Adult Cochlear Implant Program - Patient Stories

Norm has had his cochlear for 13 years and the first two were not good. After he was hooked up, he was in tears with joy because he could hear birds, ice in a glass and a car backfiring. But the sound of people's voices drove him nuts. Everything was like "Donald Duck" or mechanical or strange sounds....and he wasn't happy. He remembered what the voices of his family and friends sounded like and this wasn't it. He kept going back to St. Paul's Hospital complaining. They kept reassuring him that the mapping was correct, and he had to give it time. His brain had to learn to adapt and accept and I had to learn to be more patient and understanding.

As time went by, little by little, the sound quality improved. The strange noises disappeared. As his brain learned what these new sounds were, he started to feel he was part of the "hearing" world. He had problems watching TV but now we have closed captions always. We have two portable phones in our house and when he switches over to "telephone mode" he can do quite well on the phone. Before the surgery he hadn't used the phone for four or five years.

You really have to educate your family and friends. Unfortunately, we will have to do that probably forever. Today, even after 13 years, I need to remind family and friends that they must look at Norn when they speak. In a one-to-one situation, he does very well. If more than two or three people are talking, he misses some of the conversation. I still have to nag...isn't that what wives do...for him to look at people when they are talking so he has a better chance of hearing.

The weird sounds and noises and "Donald Duck" thing are long gone. We are so grateful for how everything turned out. That saying we all hate...give it time...is so very true.

It is amazing how we take things for granted every day until we are either losing them or they are already gone. I was born hearing, but I started to lose that sense when I was around 30 years old. Over six years, my hearing loss became so profound bilaterally that I lost my job as a registered nurse. I was unable to hold meaningful conversations with my children (ages 8 and 10). It was frustrating to communicate with my husband. I relied mostly on lip reading to get through a conversation. I became a homebody because I had too much anxiety and stress with going out into a hearing world.

I remember going to St. Paul’s Hospital for my cochlear implant candidacy assessment. It was yet again another booth and a day full of listening for beeps I couldn’t hear and repeating sentences that I was only catching bits and pieces of. But I left that appointment full of hope because I had been approved for cochlear implant surgery. I was told that my wait for surgery was going to be up to two years. Thankfully the program received additional funding and, in the end, I only waited ten months.

I got the call for my cochlear implant surgery the day before my surgery. It was a whirlwind to get my family organized and drive from my hometown of Kelowna to St. Paul’s Hospital in Vancouver. I was nervous about the surgery and how well I would do on activation. I just kept telling myself that I had nothing to lose and only something amazing to potentially gain. I had done a lot of research before surgery about people’s experiences post-operative and upon activation. Every person had such a vast range of experiences, but everything I had read pointed to a positive outcome.

I arrived at St. Paul’s Hospital early in the morning to get prepped for my surgery. Everyone was so welcoming and supportive from the anesthesiologist to the nurses. Dr. Lea did my surgery, and she was so excited and positive for me. Immediately after surgery I remember waking up and feeling very nauseous and hot. I got some medication for my nausea and then felt amazing. I had a large bandage on my ear, but surgery was complete. We stayed overnight in Vancouver to ensure I had no complications.

The day after surgery we made the 4.5 hour drive back to Kelowna and I was feeling amazing. I had a shower, took off my bandage and only had a mild ache at the surgical site. The day after we arrived home the nausea was back and my whole world was spinning out of control. I had to get my husband to help to the bathroom as I was too dizzy to stand up and walk on my own. I continued like this for a few hours before I started vomiting and the dizziness got worse. My ears started ringing louder and louder.

My husband called Dr. Lea and she was very supportive and concerned for me. She suggested that I try and sleep more upright in my bed, so I got propped up on pillows. I tried to keep down some Gravol for the nausea and vomiting. After another 24 hours of crazy dizziness, nausea and vomiting, I started to slowly feel better. I would say that I did not completely feel like myself for probably a full week after surgery. It was an extremely tough week, but I did not once regret going through surgery.

My activation appointment was over three days back at St. Paul’s Hospital. I went into the appointment with low expectations. I had done a lot of reading online and only expected to hear beeps and robotic type sounds for a few days to weeks. When my implant was first turned on, I could hear voices that sounded robotic, but I could understand immediately what was being said to me. When my audiologist put a cover over her mouth, I had a harder time understanding the speech, but I could make out most of the words. I was shocked to have such an instant response to the implant. From the moment my implant was activated, my daily experiences just keep getting better and better. I can’t say enough about how this implant has given me back my life, my nursing job and my confidence in myself once again.

I still have limitations, mostly with loud environments and with music, but it doesn’t even bother me anymore. The positives far outweigh any limitations that still remain. I know that with time my experiences will only continue to get better. If a cochlear implant surgery is an option for anyone, I would never hesitate to recommend it.

I am 54 years old and profoundly deaf in both ears since birth. I am married and we have a 14-year-old hearing son. I graduated from BCIT with Building Technology with Architecture major in 1986. I am currently working for a large architectural firm in downtown Vancouver. I have 30 years of experience in designing buildings and building envelopes for many projects in Greater Vancouver.

In October 2010, I received the call from St. Paul's Hospital to come for my second cochlear implant assessment. I had one assessment five years earlier at the same place and the result came back negative. I was right on the borderline and the team decided I wasn’t qualified for the cochlear implant. The audiologist noticed that I wore both hearing aids all the time and had some residual hearing. They felt I was able to hear well enough to pick up a few sounds and words without lip-reading. During my childhood, I had practiced a lot by listening all the time and using the telephone only with my close family and friends.

This time, the test came in positive that I was qualified for a cochlear implant. I arranged to meet Dr. Westerberg a couple of times before I made the decision to go for the cochlear implant. It was not an easy decision. I was afraid that I might lose some of my residual hearing and that it might affect my communication. I was worried because I have a family and a big responsibility at work. Dr. Westerberg was very optimistic and extremely supportive that a cochlear implant would be the right choice for me.

Part of my decision to go for it was because one of my very good friends had a cochlear implant approximately a year earlier to the date of my final test. I noticed he was extremely happy and amazed to be hearing all the new sounds he had never heard before. This included water running, “S” or “SH” sound, bus air brakes, his slippers dragging on the floor, bird sounds and more. I asked myself why he was able to hear all these new sounds but not me. So I thought about it myself and decided to take a chance.

I put my name on a cancellation list to speed up the process. I was very lucky to receive the confirmation sometime in December, about two months after the CI assessment, that I was scheduled for the surgery during the first week of January. It was confirmed that Dr. Westerberg wanted to use my right ear (my good hearing ear) for implant.

Prior to the surgery, I was somewhat calm and relaxed. Just before I was put to sleep, I became very emotional. I realized it was my last chance after all those years of using my right hearing aid.

The doctor was right there as soon as I woke up. He gave me the good news that the surgery was successful and thankfully he was able to save my residual hearing. All was good. Then I went home to rest for a week before I went back to work.

I was scheduled almost exactly one month later to meet an audiologist for the “switch on”. During the healing process, I was not allowed to wear my right ear aid. It was manageable but at the same time I was used to listening with my right ear instead of my left ear. It took me awhile to get used to it.

I took the first week of February off from work and went back to St. Paul’s Hospital for the “switch on”. My wife took the first day off to be with me. It was not my best day, and it was hard work with all the listening and adjustments. When I had my very first “switch on”, I felt like I had an electric shock in my head and it hurt. I was kind of afraid every time the audiologist turned on my cochlear implant processor. Of course everyone is different and it was a matter of time. Now I am used to it and it does not affect me at all.

In the first weeks after the switch on, I was not sure I had picked up new sounds yet. I remembered hearing the beeping sounds and it was part of the process for my brain to assimilate all the new sounds. I learned to be patient. My wife remembered one time (not long after I had the cochlear implant) that she and our son were having a conversation in the car. I immediately repeated the words that they were talking about it. They were extremely excited for me.

I discovered the following new sounds that I was able to hear for the first time in my life: car turn signals, bus air brakes, house/ garage alarm systems, and the “S” or “Sh” sounds. I have never heard these consonant sounds so clearly until after the cochlear implant. They are now my favourite consonants. I can hear when someone is having a shower. Best of all is I can hear conversations at work where we are having a group discussion or even with my boss. I am able to hear every word when we talk about all the technical stuff that we need to clarify or understand for our job and/or project, I can hear a clock ticking. In fact, it was driving me crazy that I was able to hear it nearby while I was watching TV! I can also hear my name clearly when someone calls me.

I am extremely happy with the latest technology and wish I had this done a lot earlier. Since I am older, it did take a longer time for my brain to assimilate all the new sounds I hear daily.

I go to see my audiologist annually for a general checkup and for a hearing test. It is confirmed that I have improved my hearing every year since then by at least 10%.

The cochlear implant processor is a very powerful and wonderful tool for me. I noticed that it is essential for me to wear it all the time as I am getting lazy when it comes to lip reading. I am very comfortable with it and enjoy what I am hearing in all sorts of the environments. It can be difficult for me when my cochlear implant is not working or the battery dies. I always wish I could go for another implant on my other ear.

Last summer, I used the waterproof case for my cochlear implant. I was able to hear when I swam in the ocean for the first time in my entire life. It was an amazing experience. I heard the bubbles, waves crashing on the shore and my name when my son called me.

I use my analog hearing aid on my left ear while I am using CI on my right ear daily. I find my aid is useful for hearing some of the sounds but mostly for hearing my own voice when I am talking. I found that when I heard my own voice with only the CI I didn’t like it. My aid is very different from the CI and not perfect, but I am getting used to it. I hope the technology will be better and improved when I get a new hearing aid replacement soon.

I am a very active person who loves biking to work daily, walking with my dog, downhill skiing, snowshoeing, hiking, boating, fishing, camping, playing badminton, travelling all over the world, and much more.

I would like to express my deepest gratitude to the audiologists and Dr. Westerberg for everything they have done for me. I could not have done this without their tremendous support. You guys were awesome and many thanks!

I am a 41-year-old female who had her cochlear implant switched on five months ago. I started losing my hearing when I was 10 years old. My husband of 20 years mentioned that about seven years ago my hearing loss was making communicating with me challenging. It was about the same time that I noticed that I couldn’t use the phone anymore.

However, over the last two years, the struggles had become more intense. Each personal interaction took considerable effort. Going out for dinner with my husband became silent outings. Family gatherings became bittersweet moments. My parenting role was almost nonexistent. Yet with all of these frustrating barriers, I continued to focus on goals with the use of transcribers and American Sign Language.

When my cochlear implant was switched on, my whole world changed. The most I had hoped for was being able to hear my children and husband to have fluid conversations with them. I also really hoped that I could use the phone again and feel more independent. Simply ordering a pizza would have been an achievement. The day it was switched on I went out for dinner with my family. I had a conversation with all of them – across the table in a noisy restaurant! My husband was teary-eyed because of how well we could communicate. I could listen to music in the car and it was clear to me which song was playing. I could even understand the radio announcer! It wasn’t just muffled words anymore. I attended several outdoor concerts this summer. Not only could I hear the music, I could also have a conversation with people at the concert. That was unimaginable before having an implant.

There is an abundance of amazing sounds I can now hear and identify: a car coming up behind me as I walk down the sidewalk, an ambulance approaching when I am driving, a faucet dripping water in the other room, and the noisy sound of someone eating chips beside me! But the most amazing thing was it made me aware of the deep-seated stress I did not even know I was carrying around on a consistent basis. The cochlear implant has given me back myself.

I went for a cochlear implant assessment many years ago and was rejected on the fact that I still had too much hearing left. I was fine with that. The technology wasn't exactly appealing to me and I was still trying to make do with my remaining hearing. Two years ago, I went for another assessment and they said that I was a candidate for a cochlear implant. My knowledge of cochlear implants was from the previous assessment, so I wasn't exactly thrilled with the prospect of losing my residual hearing for the chance that I might hear a bit better.

While I was on the wait list, I learned that the technology had advanced much further than expected. People do not want an ugly beige device on their head. Once I saw the actual device I felt a little bit better about it. I also did some more research, including talking with another person with a cochlear implant. The information and blogs out there made me seriously think that a cochlear implant was a game changer and that the pros would outweigh the cons.

The cons for me were: I might not be able to hear sound the same way as before, I might not enjoy the breadth and depth of music as I did before and I might not necessarily hear as well as before, in a noisy environment. The pros were: I would be able to hear more sounds and my speech comprehension could jump up to 70% or higher.

The surgery itself was fairly routine, which is a good thing (I've been in surgeries before for other issues). The hardest part for me was the wait, being completely deaf for five weeks and waiting to see if the two-year wait was worth it. It was a bit frustrating because not hearing anything meant that my pre-existing tinnitus ran unchecked and was fairly loud. Another issue I had was a metallic taste from the surgery, which wasn't a big deal for me.

On the day of the activation, I went through the usual steps. The sounds at first were not clear, but I knew that this was normal. It just required patience and practice before it would get better. At the end of the three days of activation appointments, I still had difficulties hearing words like "Friday" and "January" that we practiced listening repeatedly. My test revealed that I correctly repeated 12% of common sentences.

One month after the activation, after much work and patience, I returned for my follow-up. I was able to have a conversation with my audiologist with her mouth covered. I was able to understand nearly everything she said. This was amazing to me, as I usually had difficulties unless I read lips. I also scored 57% on the sentence test, which surprised me because I thought maybe I only got 30% this time.

Overall, I am very happy with the results. I've heard many things that I haven't heard before: our dog's nails clicking on the floor, my bike chain clacking as I'm walking the bike, and birds singing. I can't wait to see what comes next. I'm close to hearing more of the music and my taste is coming back!

The surgery and the implant were the easy part. It has been the days afterwards that have been a huge challenge for me. On the first day of my cochlear implant "switch on" my wife and I excitedly headed to St. Paul’s Hospital for one of the most awaited days of our lives. I was not sure what all to expect. One of the things I anticipated was hearing people talk like Donald Duck. Another person with an implant had told me that that’s what their experience was like.

From the literature I read, I was made aware that I was going to have to learn to hear again, but in a very different way. Going into this process I thought I was prepared for this experience. I had no idea how challenging it was actually going to be. On the first day, I knew they were going to adjust my implant for my hearing, but all the information I had received had not prepared me for this experience.

Once the processor was activated, every noise that the processor picked up sounded like a bunch of squirrels fighting in a small barrel. We did the mapping of the electrodes, which involves listening to a series of beeps for each of the twenty-two electrodes. There were many high sounds that I'm sure I have never heard. Many times it was difficult to distinguish how many beeps there were. At times I thought I might have been guessing. After we did the mapping on the first day, the audiologist could see that I looked upset and thought my wife and I should go outside for a break. Upon going outside, I looked at my wife and my eyes filled with tears. I said to her, “I think I have made the biggest mistake of my life”. At this point in the experience, I truly meant those words.

At the beginning, without my hearing aid and without lip reading, it was difficult for me to understand speech. I soon found out the processor had to be turned up high enough so that I could hear other people’s voices, as well as my own. Prior to this, I know I was yelling at times, as I could not hear anyone, including myself. At lunchtime, I was telling my wife in a very loud voice about needing a bathroom break. Consequently everyone in the hallway got to hear all about it…just a slightly embarrassing moment that I encountered during this first day.

After day three of the “switch on”, I started to wear my old hearing aid in the other ear. My hearing started to gradually improve. Over the next week the squirrels gradually disappeared. I knew at that point that the learning to hear process had begun. I made out more and more words over the next couple of weeks. The other day, I walked over and turned the kitchen timer off. My wife was amazed because before I had the implant, I had never heard the timer. My friends and family have mentioned that they think that I am hearing better. Just three weeks after the “switch on”, I was saying goodbye to my daughter and her 3-year-old little girl. As we stood at the door, my granddaughter said goodbye and I replied, “Bye bye honey. See you soon.” It was in that moment that my wife and daughter looked over at me in amazement. I had actually heard what that little girl, in her high pitched voice, had said to me. At this point in the process, I am looking forward to my one month follow up appointment. I feel that with my new mapping, I will be hearing even better!

I was told it was going to be like learning a new language and would take a considerable amount of time to be able understand the words and comprehend everything I was hearing. I was worried and anxious at the beginning of the three days and was ready for a long and slow return to hearing. The care and attention given by my audiologist was amazing. Her willingness to explain all aspects of procedures so my wife and I could understand was very helpful. My apprehension quickly vanished after the first day. Learning to hear through the cochlear implant processor seemed to come quite easily. I am hearing sounds I haven't heard for year and most of all, I can communicate with my co-workers which makes for a much safer workplace for everyone.