Patient Stories

Norm's Experience

Julie & Norm

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, 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 family and friends voices sounded like and this wasn't it. He kept going back to St. Paul's complaining and 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, strange noises disappeared and  the 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 4 or 5 years.

You really have to educate your family and friends and, unfortunately, will have to do that probably forever. Today, even after 13 years,  I  need to remind family and friends that they must look at him 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 and we are so grateful for how everything turned out. That saying we all hate....Give it time....is so very true."

Julie and Norm

 

Jordona's Experience

Jordona

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 basic 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) and it was frustrating to communicate with my husband. I relied mostly on lip reading to get through a conversation. I became a homebody because there was too much anxiety and stress involved with going out in to a hearing world.

I remember going to St. Paul’s for my CI 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. I left that appointment however full of hope because I had been approved for CI surgery. I was told that my wait for surgery however was going to be up to two years. Thankfully the program received additional funding and the wait ended up being 10 months. I got the call for my CI surgery the day before my surgery. It was a whirlwind to get my family organized and get on the road to drive from my hometown of Kelowna to Vancouver and St. Paul’s Hospital. I was nervous about the surgery and how well I would do on activation, but 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 to St. Paul’s early in the morning to get prepped for my surgery. Everyone was so welcoming and supportive from the anaesthesiologist 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 3 days back at St. Paul’s hospital. I went in to 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 and 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.

Jordona

 

Leonard's Experience

Leonard

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 CI assessment. I had one assessment 5 years earlier at the same place and the result came back negative. I was right on the borderline and it was decided that I was not to be qualified for the CI implant. The audiologist noticed that I wore both hearing aids all the time and had some residual hearing. It was felt that 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 the 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, but Dr. Westerberg was very optimistic and extremely supportive that the CI would be the right choice for me. 

Part of my decision to go for it was because one of my very good friends had the CI approximately a year earlier to the date of my final test. I noticed that he was extremely happy and amazed to be hearing all the new sounds that he had never heard before including water running tap, “S” or “SH” sound, bus air brakes, his slippers dragging on the floor, bird sounds and so on. 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 2 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 the CI.

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 the entire time. It was manageable but at the same time I always wished to use 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 CI 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 CI) 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 system, “S” or “Sh” sound. I have never heard these consonant sounds so clearly until after CI. They are now my favorite consonants.  Water running. I can hear when someone is having a shower, All kind of bird tweets, Best of all is I hear conversations especially at work where we had a group discussion or even with my boss. It is very good for me that 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/project, Clock ticking – it was driving me crazy that I was able to hear it nearby while I was watching TV!, I can hear my name clearly when someone calls my name.

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 CI possessor 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 CI is not working or the battery dies. I always wish I could go for another CI on my other ear. Last summer, I used the waterproof case for my CI. 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 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 big time for everything they have done for me. I could not have done this without their tremendous support. You guys were awesome and many thanks!

Leonard

 

Angela's Experience

Angela

I am a 41 year-old female who had her Cochlear Implant (CI) switched on five months ago. I started losing my hearing when I was 10 years old. My husband of 20 years mentioned that about 7 years ago my hearing loss had made 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 and each personal interaction took considerable effort. Going out for dinner with my husband were 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 CI was switched on, my whole world changed. The most I had hoped for was being able to hear my children and husband in order 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 and 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 and not only could I hear the music, I could also have a conversation with people at the concert which was unimaginable before having a CI.

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. This CI has given me myself back.

Angela

 

Tony's Experience

Tony

I went for a CI assessment many years ago and was rejected on the fact that I still had too much hearing left. I was fine with that, as 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 CI assessment and they said that I was a candidate for CI. My knowledge of CI 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.

However, 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 and did some more research, including talking with another person with CI. The information and blogs out there made me seriously think that the CI 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 5 weeks and waiting to see if the 2 years 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 3-day 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, which 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!

Tony

 

Gerald's Experience

Gerald

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 for one of the most awaited days of our lives. I was not sure what all to expect, but 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, but 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, and 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 and 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 that 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 and 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 3 of the “switch on”, I started to wear my old hearing aid in the other ear and my hearing started to gradually improve. Over the next week the squirrels gradually disappeared and 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, my wife was amazed, as I walked over and turned the kitchen timer off. 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, that I had actually heard what that little girl, with such a high pitched voice, had said to me. At this point in the process, I am looking forward to my one month follow up appointment, as I feel that with my new mapping, I will be hearing even better!

Gerald

 

John's Experience

John

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 and 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 and 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.

John

 

Diary of a Cochlear Implant - Flo (Mountain Ear)

June 2009, Issue 65 - (1 of 13)

The Clock is Ticking! Can you hear your clock ticking? On February 25, after having a severe to profound hearing loss for most of my life, I received a cochlear implant at St. Paul’s Hospital in Vancouver. Then, after six weeks of waiting for the implant to heal and settle in, I was “hooked up” to the external speech processor. And now, I can hear the clock on my desk. It is ticking!  

Many people have asked me how I am progressing in my journey back to better hearing. I usually tell them that it is a slow process, that I am learning what sounds belong with what words. I also tell them that it is, as another cochlear implantee has told me, like a fine wine: my hearing will continue to improve as I practice and engage in the world of conversation. But there are two things I really want to tell them, and I will tell you. First, I learned to be thankful to those hearing people in my life. They are my heroes. My family lives with many “rules” when speaking with me. Lighting, noise, distance, one-at-a-time and endless repeating are factors my husband and two sons have to consider when they converse with me. And during those six weeks of waiting between surgery and hook-up it was especially difficult for them to keep me in the loop. It is easy to forget that the people in our lives have to change their habits of speaking for our sakes. Yes, we hearing impaired people do carry a loss that is likely permanent, and we are affected by that loss every moment of every day. But do we appreciate what our loved ones need to do for us? Do we thank them? The ticking clock on my desk taught me the second thing I want to tell you. With this cochlear implant, I am now able to tune my clock out! I can listen for it and there it is, steadily ticking away. Yet, I am able to not hear it at all, and be busy with my thoughts and activity on my computer. And this is a new challenge for me in my attitude towards people. Before my implant, I usually did not have a choice as to whether I would be part of a group discussion or not. I could only observe people speaking with each other. But now I have a choice: I can try and hear or I can simply tune people out. Just like the clock on my desk. But people are not clocks.

Of course, it is still not easy to understand everyone. However, I now have the means to learn to understand them. And while I am making progress towards improved hearing, it is important that I communicate clearly as to how well I am hearing them. This challenge may be something all of us hard of hearing people experience when we receive new hearing aids or a listening device. Do we try to hear others, now that we have better means to do so? Do we prod our brains to focus and tune in to the new sounds around us and learn what those sounds mean? Do we let the people in our lives know that we want to join in and that we are learning to hear again? Til next time, Flo

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), June 2009, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK65.pdf)

December 2009, Issue 67 - (2 of 13)

Many of our readers have asked me, “How is your hearing coming along?” My responses are usually in the “Very well!” category, with a beaming smile to express my appreciation that they are happy with me.  There is rarely time to tell all that this wonderful surgery has done for me.  Hugh, our editor, has offered some space in each newsletter for me to share what my cochlear implant has done for me.  It is my hope that many readers who are benefitting from hearing aid technology will be able to relate to my experiences.  For those who no longer benefit from hearing aids and assistive listening devices, perhaps my stories will encourage them to consider a cochlear implant.  It is never too late!  

It has been eight months now since I have been “hooked up” to the implant in my cochlea.  For the first few months I have been marveling over all the new sounds I could hear.  My computer now hums quietly, the clock I used to have on my desk was moved to another room as it was too loud, the birds outside my window sing many lovely songs for me, and my dog laps her water like a water fountain in the other room.  The best news is how well I hear people.  They don’t mumble like they used to!  Their voices are crisp and clear, even when there is noise around me.  Sometimes I just sit back and listen to the discussion and simply marvel at the fact that I can hear.  What an awesome gift is hearing!  It is becoming difficult for me to remember just how bad my hearing was.  While at a concert, my husband asked me, “Well, how much better can you hear now?”  It was only when I turned the implant’s speech processor off and kept the remaining hearing aid turned on that I was able to remember.  It was like going from a dull and narrow band of sounds to a lively variety and harmony of many beautiful sounds.  So this is what music is all about!  

There are areas that I still need to work on.  For example, I find it difficult to hear voices when loud music is played in the background.  Perhaps my brain isn’t sure what I am to pay attention to!  I am not sure I will ever master this area. Nevertheless, it is comforting to know that my hearing friends and family also find this skill a challenge. Perhaps my ears have finally caught up to them.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), December 2009, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK67.pdf)

March 2010, Issue 68 (3 of 13)

Gift.  Definition: something voluntarily transferred by one person to another without compensation.  It has been now one year since I have had my surgery for a cochlear implant.  I still marvel at the chorus of sounds around me.  The range of sounds I am now able to hear is so much larger.  For example, this morning as I sat outside our rental cottage in Maui, I could hear the lowing of a mourning dove, and the chirping, calling, whistling and chattering of several types of birds, all at the same time!  Even when I was inside with the windows all shut, I could still hear the birds.  What a wonderful gift this hearing is. Gift. That is what my hearing is to me.  

One of the most frequently asked questions I receive is, “Are you going to get a second cochlear implant?” That is a good question.  After all, I have two ears.  Having had two hearing aids for at least 35 years, I know the advantages of having two aids.  In fact, I advocate buying two hearing aids, if it is within one’s budget.  I asked my surgeon this question during our first appointment with him.  His answer went something like this: “No, we are not able to give you two. We work within the budget given to us, and clearly it is better to give two people one cochlear implant than give one person two implants. We must live within our budget”. 

So why I am happy with one implant and not wishing I had two? First, I am hearing better than I ever have, even when I had two hearing aids!  Now I can hear people speaking in the distance, on a PA system, on the phone, in the car, even my dentist with his mask on.  My one implant has given me access to what “normal” hearing people hear.  Second, I was given a gift.  To think about this renewed ability to hear and its close ties to our health care system’s ability to give it to me is humbling.  While I have two reasons for not desiring a second implant, I have one response for the one that I have received.  Thank you!  Thanks to my surgeon, thanks to the government, thanks to the people of Canada, and especially, thanks to the Lord of heaven and earth.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), March 2010, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK68.pdf)

June 2010, Issue 69 (4 of 13)

It is now 14 months since I have been “hooked up” with my cochlear implant’s speech processor. A speech processor is what looks like a hearing aid, worn on my left ear, except that it doesn’t send any sound signals into my ear!  Instead, through a thin cord magnetically attached to my head behind my ear, electric signals are sent directly into the cochlea, and then to my brain.  The result?  Clear sound and the ability to hear many sounds I don’t remember since I lost my hearing when I was 6 years old.  Before my implant, and when I wore hearing aids, it was simply impossible for me to understand speech when there was even one other person speaking at the same time.  It was like the other speaker cancelled out the person in front of me.  Needless to say, I treasured those rare times when only one person spoke with no noise around me!

Those of you who met me before my implant may remember the microphone I would hold in front of you to help me hear your voice over the background noise.  Now, after a year with my cochlear implant, all that has changed.  For at least a half year, I continued to depend on my microphone, but I no longer need it!  I am still mystified how I can now hear in the noisiest coffee shops without my microphone.  The voice of a friend is clear, while the background voices are much less intrusive.  And I am hopeful that, with time, machine noises and live music will also become less challenging.  

In researching how this is possible, the main reason seems to be related to the hair cells in the cochlea. Those damaged hair cells are likened to frayed electrical cords so that, no matter how expensive my hearing aids were and how alert my brain was, the message was not coming through clearly and I could not understand speech.  So, with noise in the background, everything was crackling sounds.  The cochlear implant bypasses those “frayed cords”, and sends the signals directly into my brain via the auditory nerve.  Fortunately, the auditory nerve is not damaged; otherwise hearing would still be a huge challenge for me.

The question arises: can today’s hearing aids do this for people with less than severe to profound hearing loss?  My source indicated that, for those with mild to moderate hearing loss (i.e., less than 50 db hearing loss), the damage is most likely on the cochlea’s outer hair cells.  These hair cells have an amplification function, and if only these are damaged, hearing aids’ amplification should bring back both volume and improved clarity.  That is good news.  If you are wearing hearing aids for the first time, keep one important point in mind: the ability to discriminate in noise takes time!  For me, it took at least a half year for my brain to “rehabilitate” or re-learn sounds and discriminate between important and nonessential sounds. The implication, then, is that wearing the hearing equipment throughout the day is necessary to reach your goal of comfortable hearing in our wonderful world of sound. The hard work is all worth it. Flo.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), June 2010, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK69.pdf)

December 2010, Issue 71 (5/13)

If you were to ask me before my implant surgery almost two years ago, “Why are you getting an implant?” I would have answered something like this: “I hope I will be able to hear my family around the dinner table once again.  I hope to join in conversations in small groups and maybe even in a restaurant.  And oh, I hope I will be able to use the phone again.”  That would be about the extent of my expectations.  I was not prepared for receiving much, much more.  Why was that?  It was because I never experienced hearing at this level, so I could not know anything else would be possible for me.  

What did I receive besides what I hoped for?  Let me name a few: I am able to hear people talking in another room.  I don’t need to speech read unless the noise around exceeds the speaker’s voice (and then I have the advantage!).  I can engage in conversation in our car, even while sitting in the back seat.  Music is now rich and lovely, not harsh and cold sounding. I have a cell phone I can now use.  I can hear sounds animals make, such as lapping water, tiny birds chirping, and licking of paws.  These all are entirely new to me.  But there is one thing I didn’t “receive” through my implant.  In fact, I lost it: stress!  And this loss has taken me completely by surprise. You see, it wasn’t until about one year after my implant that I noticed how easy this hearing is.  I now sit back casually with a group of people and chat.  I do not need to look for the speaker, and then try to figure out what I missed, and speech read, all at the same time.  Noise does not bother me; I can pick out the speech I am focusing on.  I am not constantly trying to figure out “what they are talking about” and then filling in the many missing pieces. I need not worry that I will repeat what someone else has already said!  I no longer feel that the evening or lecture was a waste of time, and wish I were home reading a book.  I no longer use a listening device, along with the constant charging up, remembering to take it with me and/or looking frantically for it before I go somewhere. But most of all, it is a peaceful feeling to be able to join the wonderful people in my life and know they too are less stressed. They no longer need to constantly remember to make sure Flo can hear!  They too can relax, knowing that I enjoy their company and can truly engage with them with ease.

May I ask those of you who have a hearing loss: are you doing as much as you can to eliminate stress in your life and for those you love?  Perhaps it means applying for a cochlear implant!  For most people with hearing loss, it means buying hearing aids, the best one can afford, so that stress is reduced and/or eliminated.  It also means taking advantage of the services we offer that are available throughout the year.  These services are listed elsewhere in this newsletter.  We are here to help you, whether it is in understanding the latest in hearing aid technology, learning coping strategies, problem solving specific situations in your home such as your TV or telephone, or simply to encourage you to listen to the advice of your loved ones who know how much you are missing.  Now may I ask you: “Why are you getting hearing aids?” It may well reduce the stress in your life.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), December 2010, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK71.pdf)

March 2011, Issue 72 (6/13)

Recently I visited Susan, my audiologist who continues to service my hearing aid for my right ear.  The right ear continues to use its cochlea, albeit a much damaged one.  Often I am asked why I use a hearing aid in that ear since I cannot process speech with it, even with a powerful aid.  I plan to answer that question in the next issue.  I would like to tell you about my visit with Susan.  Susan has been my audiologist for many years. She was the first to detect each drop in my hearing, and when, about four years ago, I could no longer cope well, even with extra technology and coping strategies, she was keenly aware that I was reaching the end of the solutions in her “toolbox”, so to speak.  And it was Susan who referred me to St. Paul’s for an assessment for an implant.  It is now two years ago that my surgery for a cochlear implant took place.  And, as they say, the rest is history!  I don’t need to see Susan very often, now that my implant is doing most of my hearing for me.

The clinic at St. Paul’s services my speech processor and issues related to my implant.  But when my hearing aid for my right ear needs attention, Susan takes care of that.  When I met with Susan, she said she had been reading my journal articles in this newsletter, and then expressed her joy that I now hear so well.  It was a most touching moment, as we acknowledged how the story of my life has been so radically changed.  My visit with Susan opened my eyes to something I believe we hard of hearing people do not always appreciate.  Our audiologists work in this field because of their keen abilities and desire to help us hear.  They want to solve our hearing problems!  It is without a doubt that audiologists hold very challenging jobs.  Every day there are a variety of problems and unique issues that each client, hoping for a perfect solution, brings.  Yet, we know too well that no hearing aid will bring back perfect hearing.  And then there’s the grief that comes when a client realizes that more hearing is lost.  Our audiologists often witness that pain, and know that living with hearing loss often affects one’s ability to stay connected to friends, family and community.  Can you understand how my life story affected my audiologist?  I am convinced that every audiologist is thrilled when their clients live more satisfactory lives because of the technology for hearing that is now available.  After all, that is their goal in their work.  And to realize that their careers are focused on making our lives truly a joyful experience is an awesome thought.  May I ask, “Have you thanked your audiologist recently?” Til next time, Flo.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), March 2011, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK72.pdf)

June 2011, Issue 73 (7/13)

Why Wear a Hearing Aid with an Implant?  In the last newsletter, I wrote about the visit to my audiologist, Susan, who continues to service the hearing aid I wear in my right ear.  With this hearing aid I cannot understand speech, but pick up a narrow range of sound, that comes out muffled.  With this hearing aid, voices seem to me like speech under water.  In my left ear I now have a cochlear implant (CI) as of February, 2009.  Because of this implant, I can now hear a vast range of sounds.  Best of all, speech is now extremely easy for me to understand.  In fact, even in noise, along with speech reading, I can successfully carry on a conversation with ease!  At times I have been asked, “Why do you wear your hearing aid if it doesn’t help with speech?” This question is based on a faulty premise that hearing is only about accessing speech, and that peripheral sounds are therefore a nuisance, especially for people with hearing loss.  This thinking has led a number of hard of hearing people to wear their hearing aids only when other people are around or just when they “really need to hear the speaker”.  Yet these are often the same people who are not fully satisfied with their hearing aids, and who claim that the environmental noise is too bothersome.  They have failed to understand the connection between hearing and the function of their hearing aids.  I would like to talk about this issue, and explain why even my hearing aid is actually a benefit to me. This issue has major implications for hearing aid users and prospective CI wearers.  Briefly, I will: 1. Describe the brain’s function in hearing and how that task requires all sounds, not just speech; 2. Explain why I wear a hearing aid in addition to my CI; 3. Encourage all hearing aid users to maximize the hearing assistance available to them; and 4. Demonstrate how maximum hearing assistance prepares the prospective CI recipient for the best outcome in hearing after their surgery and hook-up.

From infancy on, our brains take in all sounds and then process them according to our needs. They learn to discriminate between wanted and unwanted sounds so that, in time, important sounds are easily picked out from the irrelevant sounds. It becomes clear, then, our brains require all possible sounds, or, if you will, all the materials available, so to fine tune our hearing skills.  Remember the familiar scene of a mother, accustomed to the noises of TV/toys/children’s chatter, more easily picks out her child’s speech than her visitor, unfamiliar with all the various sounds and children’s voices?  In fact, the visitor tires quickly from all the “noise”, while the mother continues to carry her conversations with ease.  In my situation, my CI gives me renewed access to a vast range of sounds.  As I learn to focus on “target sounds” such as speech, my brain works at filtering out the less important sounds (e.g., noise).  This is the process of rehabilitation after a CI “hook-up”, which begins around 6 weeks after surgery.  As I mentioned earlier, my CI is far superior at this task than my hearing aid in my right ear.  It has a more normal range of sound material to work with, and thus can do its job with greater ease. However, my hearing aid acts as an assistant, so to speak, to my CI’s speech processor, in three ways: 1. It “softens” the input of the crispy clear sounds I receive from the implant, much like background music. This is actually a calming effect for me; 2. It improves my ability to localize sound, thereby speeding my reaction times; and, 3. It improves my recognition of speech while using the loop (induction listening device). By the way, turning off my hearing aid is also an option: when its added input is simply too loud, then I let my CI do its brilliant job alone (e.g., very noisy parties). Nevertheless, because I continue to use my hearing aid almost all the time, I am better able to use it (or not) to my best advantage.

So, for hearing aid users, keeping your hearing aid (s) on in almost all environments is much like an investment—listening and discriminating between sounds during the quieter parts of your day enables your brain to focus more accurately on speech during the noisier situations. The application for prospective CI users should become clear by now. Those of you whose hearing assistance devices (hearing aids, FM receivers, etc.) are nearing the end of their usefulness should still keep using them!  Your brain needs all the input it can get, despite the lack of access to clear speech.  Then, when the day comes that you are implanted with a CI, your brain will have a “headstart” because of its fairly recent history with environmental sounds.  You will be better prepared to step into a whole new world of beautiful, clear sounds.  By the way, if you are interested in learning about the process to becoming a prospective Cochlear Implant wearer, the following article spells out the steps that are involved in this exciting journey.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), June 2011, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK73.pdf)

September 2011, Issue 74 (8/13)

Looking back over the last 2 ½ years with this new hearing I’ve acquired with my cochlear implant, I am now able to see some healthy changes take place in my interactions with others.  Some of the benefits I now enjoy, such as being better able to discriminate speech from noise and feeling more relaxed in a large group, have, no doubt, contributed to these changes.  

Let me tell you what I see happening in my engagements with others.  If my experience becomes an encouragement to you to aim toward a healthier “balance” in your conversations with others, then my purpose has been accomplished.  What do I mean by “balance”?  To picture it, I will give you a “before and after the implant” description of my behavior in groups. When I was profoundly hearing impaired, I often slipped into one of two reactions. My modus operandi was to remain silent and in the shadow of the group.  I missed most, if not all, of what was said, and became an observer rather than a participant of most group discussions and socials.  A second, less frequent behavior I slipped into was to hoard the conversation by speaking more than my share.  For example, I would control the topic by asking many questions and/or changing the subject.  Or, during a lull in the conversation, I would fill it with more of my own thoughts rather than wait for others to speak up.  I must quickly add that asking questions, changing the subject and speaking one’s mind are acceptable ways to get involved in a discussion.  What I believe was missing, however, was balance.  Too much of a good thing can be unhealthy for the dynamics of any group.  Now I understand why I did these things.  In the case of staying in the shadows, I could not hear most of the discussion or banter, and did not wish to take any chances in looking foolish by saying the wrong thing or asking for a lot of help.  When I was overly talkative, it was to avoid losing my place, so to speak. Unconsciously I was afraid I would not hear the others and would have to deal with the results, which I was not comfortable with (e.g., being left out of the discussion, having to ask for repetition of something I didn’t hear, or perhaps repeating what someone else just said, but had not heard).  

With my new hearing, I have to say that there is a healthier balance when I engage with others.  I rarely retreat to the shadows; if I do, it is because I choose to listen to the discussion and to enter it when I wish.  When there is a discussion where I am participating, I am less inclined to talk too much.  I find these changes very rewarding.  Because I now hear more normally, I experience a healthier balance in my daily interactions with others: it has become easier to participate, to ask for help (which happens less often), and to allow others more opportunities to speak.

The question each of us should ask, then, is: “What does that effort toward balance look like in my own life?”  I believe it depends on what can still be done to improve one’s hearing.  It may mean stronger hearing aids, or a better listening device, or a telephone amplifier, or even a cochlear implant.  Perhaps it means learning better coping strategies in dealing with one’s hearing loss.  If you, or someone you know, want to learn more about these ideas, let me encourage you to join us in one of our Sound Advice workshops or evening presentations.  You will meet many like-minded people who come to share and learn about the journey toward a healthy balance. It is truly worth the effort! Til next time, Flo.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), September 2011, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK74.pdf)

December 2011, Issue 75 (9/13)

A couple of weeks ago, Hugh and I were discussing the theme of Single Sided Deafness (SSD) for this issue of the newsletter.  He asked me if I considered myself as having single sided deafness.  I replied, "No, I had never thought of it like that".  To me, my implant seems to be doing the job for both ears! Yes, my right ear wears a hearing aid (HA) and it takes in sound, albeit very muffled.  When I happen to be wearing only the hearing aid, I might receive an indicator that something is making a sound.  That’s it.  But does that make me a SSD person?  We went back and forth on the topic, and I said I'd email Jowan, my CI audiologist at St. Paul’s, to see just where one with a CI fits into the scheme of hearing impaired people.  Jowan’s responses to my questions confirmed that the issues are very similar, if not identical, for those who hear with one CI with those people who wear one hearing aid and whose remaining ear has little or no hearing. He pointed out that, if the other ear has some hearing assistance, the issues are not as pronounced. This is something we would expect, for when the second ear is working, it enables some important functions, namely: 1. Localizing sound; 2. Providing better “balance” in background noise; and, 3. Allowing the volume of the aids to be at a more reasonable level. Sometimes, to compensate for the deaf ear, the hearing aid wearer will increase the volume above normal, creating more unnatural sound.  

In my case, with one CI, I find that I do not struggle with these issues as much as I did when I wore two hearing aids.  One of the main reasons, it seems to me, is that sound is coming to me so much clearer than it ever did. As a result, speech is clear to me even with background noise or when it is very soft; I do not need to change seating to have the speaker on the CI side, nor do I need to increase the volume on my speech processor.  You could say that my hearing is more like a person with normal/near normal hearing but with one deaf ear.  

There is one caveat, however. Jowan, who has normal hearing, did a simple experiment that pointed to the fact that we who hear out of one ear may not appreciate the depth and character of sound.  In other words, we don’t know what we are missing!  Plugging one of his ears while driving, he found that the noise made it more difficult to hear the voice on the radio over the engine noise.  Of course, he could still hear the radio with his normal ear, but he noticed that sounds in general do not have a sense of space (i.e., layered), but sound flatter.  So, despite the one ear functioning normally, it was more difficult to discriminate between sounds.  After receiving Jowan’s email, I made a point of checking how well I hear with the speaker on my CI side versus my HA side. To my surprise, there was a marked difference!  Especially when noise is in the background, there is less “competition” when the speaker is on my CI side.  

So, in conclusion, I do experience issues related to SSD. Now that I know I have SSD, albeit on a mild to moderate level, I am benefiting from a new-to-me coping strategy: doing my best to have the speaker on my CI side.  This strategy was not useful before my CI as both of my ears were at a profound level.  Does my experience suggest anything to you?  Might there be some coping strategy, some technology or some knowledge about hearing loss that you could still learn about to apply to your situation?  We are here to help you find out. You just might be surprised.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), December 2011, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK75.pdf)

March 2012, Issue 76 (10/13)

During the last couple of weeks I have been corresponding with a man who acquired a cochlear implant about 4 months ago.  He expressed much frustration over the progress or lack thereof in his ability to have a natural conversation – even in a quiet room.  Yes, he was hearing more, but it was noise, unwanted noise that he was picking up more than the coveted speech.  Noise from machines, air conditioners, fans, even music has not been pleasant for him.  I can tell, from his description, that he will need to work hard on his rehabilitation process.  Now isn’t that what each of us must go through, to some extent, when we put on our first hearing aids?  It doesn’t seem fair.  After all, we decided to buy those expensive hearing aids, and all they produce is more unwanted noise!  

As we corresponded, I began to see two things rather clearly: first, we need to follow our brain’s agenda as it sorts out unwanted from desired input (i.e., speech), and second, we need to be content where we are in our hearing progress, knowing that, with the necessary hard work, we will improve.  Nothing worth working for is going to come easily.  It was like a handshake when, in his most recent email, he said that he is patient with his progress toward hearing speech. Yes! He is on the way to success.  Below are excerpts of my emails to this fellow.  In them you will read about my progress over the past 3 years with my implant, and the major issues most people with implants experience.  Hearing aid users will find some interesting similarities with their experiences, and anyone considering hearing aids may learn to take their first steps with a more realistic attitude.  

In my first email I wrote: I am now 55 years old, and have been hard of hearing (HOH) since I was 6 years old. For most of my life my loss was at the severe level, but it became profound in my 40's.  I was an excellent lipreader, and used an FM system in almost all my interactions with people, especially the 3 to 4 years prior to my CI.  So, to get my brain's perspective, I did not have access to the whole range of sounds out there, and, as they say, "use it or lose it".  I did lose a lot of memory of the world of real sounds.  When my CI was switched on, the best way to describe what I heard was a fire engine alarm going off in my head.  It was horrible! What I really was taking in was the air conditioner, the people talking to me and all kinds of environmental sounds my brain did not experience for a long time.  My brain could not make heads or tails of what all those sounds were.  That was the first couple of days.  I don't want to repeat those!  Then, slowly, yes: very slowly, sounds began to make sense to me, and my brain began to file away as "irrelevant" the sounds that were truly not necessary to listen to (noises around me).  But first my brain had to identify those sounds.  In other words, it had to first say, "That's a clock ticking and it can go into Peripheral Sounds File".  I now can tune out the clock sound if I wish.  But not at first; it took several months before my brain was able to make the many adjustments as it first learned what the sound was and then work at disregarding the unimportant ones.  

Now it is 3 years later for me and let me tell you, my brain is still making improvements!  One very recent example is just yesterday I was assessed during my annual appointment at the Audiology clinic in Vancouver.  One year ago, my percentage in the single word test (no context, no speechreading) was 80% (before my CI it was somewhere in the 20's); yesterday it was 96%!!  You see, it is very much like starting all over again, like an infant who is learning what sounds are important (eg., Mommy's voice) and what is not (eg., garbage truck outside).  And, well, we have to give our brains the time it needs and deserves, right?  

After reading his first email describing how very slow his progress is and how he wants to hear speech more clearly and with greater ease, I wrote: Thanks for writing. You sure are going through the wringer.  You probably heard the "It takes time" line often enough, so I'll skip that, except to say that for one person time is more expensive!  And each day waiting for improvement seems more like a year.  I do recall that I was miserable for several months, did not even want to try new things like the telephone that I had not used for a few years.  It was like pulling teeth for me because of all the failure I experienced with the phone/no visual cues and noisy situations.  I believe it was at least 6 months before I started to use the phone with friendly people (family, friends).  After almost 1 1/2 years with the CI I got my first cell phone, at age 53!  I felt like a kid with her first techno gizmo.  For several months I continued to keep my FM handy and still relied on lip reading, so that the CI was not my main access to meaningful conversation.  But slowly, SLOWLY, I began to rely on the CI, and, when I decided to not use my FM in church, for example, I was absolutely amazed that I could really hear our pastor without the FM.  Still, for a couple of years after letting go of my FM I could not stand the noises around me while trying to hear the speaker.  Those noises were simply far too loud and interfered with the voices I wanted to hear.  So, it was about 2 1/2 years after my CI, I was able to hear/pick out clearly the voices of people farther away than the surrounding interfering noises.  That was a milestone for me.  When I read your description of your situation, I realized once again that hearing is a very unique-to-each-person journey, and what you are experiencing is not exactly what I did.  Yet I had my challenges that I know others with CI do/did not experience.  

When I first was turned on, I remember my audiologist speaking to me behind a face cover so I could not see his lips. That was extremely difficult and I did not do well.  I'd say that it was like your description--someone speaking under water/behind a window--not clear but I knew it was speech.  I think it was, for me, about a couple of months before the speech was clear and I could hear, in a quiet room, what the person was generally saying, without lip reading.  It sounds to me that for you it will take longer.  And why is that?  I am sure you heard all the reasons--the brain has to work it all out, perhaps working with new pathways that it is trying to establish.  The best I can say at this point is to give your brain all the chances it can, with your energy and absolute determination to work at this rehab process.  For me, I went into the process knowing it was going to be a Rehabilitation Process and I had family and friends all rooting for me.  That was key, I believe, to my success today: my family was very patient with me and knew I had to go at this at my own pace.  It was and still is important for me to communicate what, exactly, I am experiencing and gaining, so they can understand where I am in the journey.  So I'd say things like, "I can now hear _______________ and that is new to me". Or, "What is that sound I hear (cat lapping her water)?" ..."Oh, is that what it is!!! Wow!!!!"  So I get them to understand where I am in my hearing.

In his next email, he described some specific improvements he noticed.  I responded: See?  There IS improvement!  And now you are submitting to your brain's agenda.  That's good.  I recall all the same issues that you are currently going through.  Funny, but now that you mention these things (can't hear without reading along, etc.), I realize that, yup, that was me too.  It really is like giving birth.  Very few, if any, mother really remembers the pain!!!!  We forget because we want to forget!!!  So you look around at all these CI people hearing like it is a breeze, and think, "Man, how will I ever get there?  It looks like that was what they experienced from Day One."  But no, only for some it is faster than for others.  An example: a friend here just got her implant a few months ago.  Well, she has already caught up to me in her hearing, while it took me 3 years to get where I am now.  So what?  I know that my brain is mine, and thank you, but I will be content with my progress and not wish I had her brain.  So, now we get to the bottom of things: contentment.  I have to say, looking around, most people are not very content.  They have some things they like but they want what others have, on top of what they have.  It seems like it's never enough to have what one has already.  Too bad, but then life is not much fun always wanting more of something we don’t have.  Unless, of course, if we desire to be content!

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), March 2012, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK76.pdf)

June 2012, Issue 77 (11/13)

Recently, at one of our Sound Advice workshops, a man asked me, “Do you still have to lipread?”  He seemed to be wondering why I should have to lipread, now that I have a cochlear implant.  This question opens up the issue of what happens when a person with a hearing loss receives a hearing aid, or, as in my case, an implant.  Does the aid correct one’s hearing, like glasses or eye surgery can do for many people with visual problems?  When I wear my reading glasses, I consider my vision to be corrected, and I can read as I did in my earlier years.  It is vital that we and our hearing family and friends understand the difference between the concepts corrective and assistive.  Hearing aids and implants are assistive devices for us to hear better; they are not corrective devices.  When we realize this, we naturally conclude that something is required in addition to our aids to ensure communication between us and others are successful experiences.

And what is that “something”?  Well, it is many things, and they all fall under the category of coping strategies.  For example, the hard of hearing person will benefit from lipreading, turning down the background music and sitting in the best location in a restaurant.  However, greater success occurs when the hearing family and friends also assist him or her. They help by looking at him or her while speaking, by speaking clearly and naturally, by engaging in the conversation with patience and a genuine willingness to include him or her.  If hearing aids corrected our hearing, then there would be no need to conduct our Sound Advice workshops every month.  However, we know better!  We invite you and any hearing family members or friends to join us in learning how to assist your loved one who has a hearing loss in future conversations.  So, to answer the man’s question: Yes, I do lipread! It is my favourite coping strategy. Til next time, Flo.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), June 2012, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK77.pdf)

September 2012, Issue 78 (12/13)

A number of people who knew me before my CI (cochlear implant) surgery continue to remark how impressed they are with my ability to hear with very little effort.  In fact, some of my HOH friends who were once reluctant to even consider applying for a CI are now hoping to become CI recipients.  They too want to enjoy the world of sounds and speech as I do.  They have seen the change in me and others with CIs, and realize they too may have that gift, should they be eligible for this technology.  

Recently, two of these friends visited me to ask questions about the process of eligibility for the surgery and the rehabilitation that one undergoes after the implant is turned on (6 weeks later).  I did my best to answer their questions that afternoon.  However, I realized that, given the 3 years since I had my surgery, there could well be some more up-to-date information regarding the issues that concern them.  So, after the visit, I asked my audiologist at St. Paul’s, Jowan, to give me more current information.  Once again he was very helpful (see my article in the June, 2011 issue for his input on the process of getting a CI). In this article I will respond to the questions my friends asked by giving combined responses from both Jowan’s expertise and my own experiences.  

Question: When is someone too old to apply for a CI? Answer: Age is not a factor. The clinic looks primarily at one’s medical/surgical candidacy along with the audiological criteria.  This means Dr. Westerberg, the surgeon, needs to determine if the person is healthy enough to undergo the surgery, and will assess this by your medical records and current health status.  There have been cases of younger applicants who met the audiological criteria for CI, but were not healthy enough to undergo surgery safely.  If you desire to pursue the CI surgery, you must ask for a referral to the program and get assessed (see below on the referral process).  Your capacity to undergo surgery is the decision of the surgeon.

Question: What if I’m doing "OK" in quiet situations because I use a huge variety of coping strategies with a variety of grammar/semantics skills, to figure out what is being discussed and how to work my way in conversations, but I am not coping well in the real world where noise and constant unpredictable sounds interfere with my interactions with others? How can the clinic assess that aspect of my eligibility for a CI when I would be assessed in the quiet environment of the sound booth? Answer: The current candidacy criteria are based on sentences in quiet.  This is consistent across all clinics in North America and the criteria have been approved by Health Canada and FDA.  The candidacy criteria are supported by research which indicates that it is safe and reliable to implant that group of patients.  There is continued research to evaluate the candidacy criteria for implantation.  St. Paul’s clinic has been and continues to be involved in this research.  If the person is not deemed a candidate, it means that there should be reasonable amounts of residual speech understanding that would allow him/ her to benefit from ALDs like FM technology.  Also, the tests results indicate that he or she is doing better than every other CI recipient who was deemed to be a candidate at the time of their assessment.  I can’t underestimate the use of ALDs (Assistive Listening Devices) and other means that technology offers to the hard of hearing, in addition to hearing aids.  For me, prior to my CI, I used the FM system almost continuously, even in quiet situations; I also used the Voice Carry Over telephone (by Ameriphone) and email exclusively to keep in touch with the people in my life.  Because they were my life line, I became comfortable using them.

Question: What will the clinic tell me if I fail the candidacy process?  Answer: If you are not YET deemed to be a candidate for a CI, you will be encouraged to pursue options that are available for improving your quality of life.  The clinic will explain your current level of hearing and whether your hearing aids are fitting you appropriately.  They will show how your results compare with what could be acquired, given your hearing levels and what could be provided, given your aids’ power or stronger hearing aids that are available.  The clinic will encourage you to work with your hearing aid person to increase settings to get optimal hearing and will encourage you to have a good trial with FM technology.  The clinic will discuss the value of speech reading courses to augment your hearing and to contact community resources such as CHHA to provide further supports to you and your family.  Finally, you will be made aware that none of their recommendations will restore hearing to normal, but rather that you are to maximize the use of your residual hearing.  An important point to remember is that a small 10-20% increase in speech access is a bigger deal for people coming in for CI assessments than for normal hearing people.  I think we all, as hard of hearing persons, understand this fact: for example, just having background music turned down, or off, is a tremendous benefit to our efforts in hearing others, even though our hearing loss does not change.

Question: What can the clinic recommend in the unfortunate case of someone who meets the audiological criteria, but is deemed physically unable to undergo the surgery due to a critical condition (e.g., a terminal disease)?  Answer: In the cases where a HOH person can’t have the surgery and is without sound or only can access limited sound, the clinic will discuss things like Vancouver Community College’s speech reading course, support services by CHHA, consideration for use of ALDS, as well as other technologies like Dragon Dictation software which can be used on computers or as an app on iPhones.  If necessary, they will also discuss the possibility of using sign language if that is something the person is willing to consider.  Jowan emphasized to me that, fortunately, it is extremely rare to have someone turned down permanently.  

Question: Who makes the referral to St. Paul’s clinic for my application for a CI?  Answer: Audiologists, Hearing Aid Practitioners, ENTs, and GPs can all make referrals now.  By opening up the referral sources, the clinic at St. Paul’s is trying to make the CI program more accessible to those that need it.  Once the clinic reviews all of the materials that you need to send in, they do an intake on the information.  If the information indicates that you might be a candidate, then they will contact you and book you for an assessment.  If you are clearly not a candidate then the clinic will also contact you and recommend that you work with your hearing aid provider by exploring ALDs and support from your local CHHA branch.  As a long standing member of CHHA, I can’t say enough for the support I have received from our CHHA branch.  I have been challenged many times to try yet one more coping strategy, to learn pleasing and assertive ways to understand what others are saying, and to not give up.  I have received encouragement and understanding by others with hearing loss that enabled me to feel less alone and hopeless in my circumstances.  Most of all, I learned that, even with a hearing loss, I have much to offer others and that life is about focusing on what we can give.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), September 2012, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK78.pdf)

December 2012, Issue 79 (13/13)

Many of us who wear hearing aids know about the T-coil and its benefits, especially when it is used with the loop system. The T-coil, or telephone switch as it was originally called, uses a simple, yet extremely helpful technology that enables a hearing aid wearer, who has a T-coil, to hear a speaker at a distance in specially looped facilities. The speaker uses a microphone connected to an amplifier and wire looped around the room. When you come to our meetings, you can enjoy hearing our speakers as if they are speaking right into your ears, without having to hear over noises that are made around you. I was able to use this technology for many years, even with my analog hearing aids, when my hearing loss was at the severe level.

A number of years ago, when we renovated our kitchen, we had a loop system placed in the ceiling of our kitchen so that I could listen to our favorite pastors and lecturers. However, by then my hearing loss was at the profound level, and I found it too difficult to understand the lectures that were fed into the system.  By then, to understand anyone, I relied heavily on speech reading.  But that all changed after a couple of years with my implant.  Recently I attempted to listen to lectures again using our loop.  I was pleasantly surprised to find that I could even understand speakers with accents or who spoke quickly.  My speech processor, the device that sits on my ear and is connected by magnet to my implant, picks up the speaker even when I walk outside the loop’s perimeter.  So, as I do my chores in and outside my house, I enjoy listening to a wide variety of speakers with relative ease.  

I am again reminded of the vast improvement in my hearing due to my cochlear implant. The loop is a wonder tool for us with hearing loss.  We at CHHA North Shore Branch often remind our members and friends how much this technology means to us.  Recently, I learned that there are some loop systems you can use in your home that are easy to install and/or are portable, so that you can take it with you to other homes where you plan to use a sound system (e.g., TV). Come and learn about this tool at our next Sound Advice meeting or call us to find out how you can obtain one for your home. 'Til next time, Flo.

(Repubished with permission from author. Source: Spratt, F.,  'Diary of a Cochlear Implant', Mountain Ear (online), December 2012, http://www.chha-nsb.com/Newsletters/ARCHIVE/SPEAK79.pdf)