1 - My Cochlear Implant and Reimplantation Experience

 Hello All,

Firstly, I would like to briefly introduce myself. My name is Shobana Ramesh, and I am a 22 year old student from Ottawa, currently enrolled in a Bachelor of Arts program in Child Studies with a minor in Disability and Psychology Studies at Carleton University. When I was 10 months old, I was diagnosed with profound hearing loss in both ears. In 1998, when I was born, there was no hearing screening for newborns in Canada, so I am unsure whether I was born with hearing loss. 

After being diagnosed, I was put on a waiting list to undergo the Cochlear Implantation surgery. During this period, I wore hearing aids on both ears. My parents recall my unwillingness to wear the hearing aids at all times. I saw them more as toys and would constantly take them off and play with them! So, we came to a compromise and my parents decided to let me wear hearing aids inside the house and take them off when we were out and about. 

Finally, it was time to get my Cochlear Implant surgery on June 2000. I was 22 months old and don’t have much recollection of that time. I was told that when the doctor took me from my mom's arms, I cried at first. When the doctor gave me his stethoscope, I started playing with it and left with the doctor to the operating room (OR). Dr, Schramm was my surgeon for my first implant and 21 years later, he performed my reimplantation surgery. After the surgery, I got a big bandage wrapped around my head and stayed in the hospital for two consecutive days. When it was time to go home, they removed the big bandage and replaced it with a smaller one on the surgery site, behind the left ear on the side of my head. 

Before talking about my first switch on, I would like to mention a brief history of Cochlear Implants. William F. House and Ingebourg Hochmair first discovered the cochlear Implant. The first cochlear implantation was performed on December 16, 1977, by Professor Kurt Burien in Vienna, Austria. Currently, four companies manufacture cochlear implants. They are Cochlear Americas (formerly known as Nucleus), Advanced Bionics, MED-EL, and Oticon Medical.

On July 2000, I got my left ear Cochlear Implant switched on. I got a Platinum Series processor from Advanced Bionics (AB). The internal Implant was the C1 model, the first-ever Implant manufactured by AB. Also, I was the second recipient in Canada to receive the AB C1 implantation. At first, the sound was very odd. I will explain this more in detail when I discuss my right implantation surgery and my reimplantation. It took me a while to get used to the sounds and soon after, I started babbling and talking. 

Hybrid implant surgeries is when the patient receives two cochlear implants on both sides in one surgery. Since there were no hybrid implant surgeries in 2000,  I was on the waiting list for a while to get my second cochlear implant surgery for my right side. Then fast forward to May 10, 2010. Early in the morning, I got surgery done for my right side. I was 11 years old at the time. I remember waking up on surgery day, feeling very excited, with a massive smile on my face. My cousin and uncle came from Maryland to be by my side and help make the experience better. My dad was permitted to go into the OR to watch me fall asleep, so we both put on our hospital gowns and caps. I remember being excited until it was time to go into the OR and the excitement quickly turned into nervousness and anxiety. As soon as I got into the bed, the nurse gave me the mask to put me to sleep. I was breathing extremely hard since there was a weird and almost intoxicating feeling in my eyes and body. This feeling lasted for only a minute, and then I was unconscious. I remember having a dream during that time in which I was watching a pixelated Mario Bros. game with an interesting twist!

Then, at around 1:00 pm, I woke up feeling loopy from the medication I was given and the inside of my mouth felt like sandpaper. All of a sudden, I see this clown dancing around, making silly noises. The clown was always present at the hospital since it is a children's hospital. She gave me some great laughs for sure! A moment later, my dad came in and saw me with a massive bandage around my head. I stayed at the hospital for the next two nights. My cousin and I went into the playroom during the day, did some painting, played with our Nintendo DSi, played games together, cracked silly jokes and had a lot of fun. The food was not bad either because my family got pizza for lunch on one of the days.  It was a fun experience! Then on May 12, it was time to go home. My cousin made this massive sign on the front door to welcome me. How nice of her! Unfortunately, my neck was stiff, turned to one side, and I could not even move it. A few times, my uncle would jokingly imitate me walking around with my neck tilted to one side. My neck got better within a week. I went back to school within a week and a half. However, as soon as I got back to school, there was a mandatory Ontario school testing for a couple of days known as the EQAO. So, I was writing the EQAO test while feeling a bit heavy and uncomfortable from the surgery. It was not a good experience! 

Next, it was time for the switch on in June. I felt anxious since I was not sure what it would sound like. I was asking myself a bunch of questions: "Will it be loud? Maybe uncomfortable? What if I hate the sound and would it make me regret the surgery?". I received a Harmony Cochlear Implant from Advanced Bionics. As soon as my audiologist turned on the Cochlear Implant, I was surprised with the sound. It was significantly different from the left ear which was stronger. The audiologist told us that the left ear will always be stronger than the right. It is stronger because I got my left in 2000, so my right ear was in the dark for 11 years. During one of the tests where the audiologist measures each of your electrodes, you typically hear beeping sounds. For me, it sounded like a woodpecker pecking on the tree. It sounded very muffled and it was difficult to hear what people were saying at first. After multiple therapy sessions, it got stronger. I will talk about therapy in the next little bit. 

Fast forward to 2020. I was 21 years old and was living my regular life: going to school, going to the gym, etc. Then, one time at the end of January 2020, I started hearing a loud, constant, annoying sound from my left Implant while listening to music. I got scared. I tried changing the microphones, the battery, the headpiece and even the magnets. I tried replacing every single part of the Cochlear Implant. Still no luck. I emailed my audiologist about the issue. I could only talk about my problem in great detail to one of my good friends that I have known all my life. She also wears a Cochlear Implant, so she knows what I was going through better than anyone else. She also gave me useful advice that I did not even think about before. Even if I was spending time with another friend, she would always wait for my message in case I needed her. I thank her for supporting me throughout the years and especially during those months. Since then, our bond became much stronger. After trying to fix the issue, I got emotionally drained, so I slept it off. 

During my appointment, my audiologist reduced the volume on my Implant so that it would be more bearable. However, it did not help much since the annoying sound got louder when the surrounding sounds got louder. At that time, we got invited to a wedding in Chicago. However, since parties are loud and would give me a headache, I could not attend the wedding.  I also work at a daycare and one day, I came home from daycare with a horrible headache since I could not tolerate the kids screaming, so I took a break from daycare. I also had issues at school, so I had to take a break from school until we got my Cochlear Implant issue fixed. During this time, my mental health deteriorated due to this stress to the point where I started inflicting self-harm one day.

We ran through multiple tests. The audiologist found that two of my electrodes malfunctioned and suggested that I would need reimplantation surgery. By the time they told us about the surgery, I knew that I would need the surgery as well. I looked at the mirror and said to myself, "this is best for me. It will be a hard few months, but in the end, it will be worth it. Just be patient and it will all work out". I gradually got better mentally thanks to talking to myself and my good friend, patience, writing, and my resiliency. Besides, the newer Cochlear Implant technology is much better than my old one, so I was excited to experience the latest technologies. However, due to the COVID-19 pandemic in 2020, my surgery, which was supposed to be in April, got cancelled. So, we had to wait until we got a new date. I got better mentally each day, and it was the best bounce back I've ever had in my life. I felt mentally stronger than I have ever felt. 

Finally, after a long two months of waiting, my surgery date was set for June 10, 2020! I found out only four days before, so I was doing lots of hearing stuff before the surgery: listening to music on loop and watching videos. I was doing lots of hearing things because I would not hear as I used to for several months after surgery. I remember listening to my favourite song for the last time for several months. I had mixed feelings of sadness and happiness at the same time.

Then, the surgery day arrived. I was filled with excitement, sadness and anxiety all at the same time. It was a crazy feeling! I checked in, and the wait was not long at all! I remember my mom packed her bags since we thought that she could stay for the night. However, she was turned down last minute due to COVID-19 protocols at the hospital. She felt emotional and anxious (like all moms do). The doctor prepped me, gave the hospital gown to wear, put me on IV drips and checked my medication. I am a type 1 diabetic, so they had to keep track of my blood sugar levels. Then they gave me Tylenol and anxiety medication and I was all set! My audiologist came to see me and stayed with me the whole time during the surgery. When I saw her, I could not recognize her since she was wearing a mask and a face shield. Then she showed me her name tag and I was surprised and relieved! My implants were off, so they had to communicate with me purely in writing. 

I remember waiting at the OR at around 7:30 am, wide awake, staring at the lights turned off above me. I was forcefully trying to not look at the sharp tools that were laid down next to me. I saw the surgeon walk in and say hi to me. I felt a huge relief since he was the same surgeon from my first surgery. After they finished their checklist, I felt a needle coming through my left arm and a nurse holding my shoulder to relax me. I closed my eyes and was thinking to myself, "This is it. This is the beginning of a new chapter of my life and I am ready for it".

I woke up at random times after the surgery and felt so giddy, so I kept dozing off. Finally, at 2:30 pm, a nurse woke me up and I saw many nurses and assistants standing around me. At that time, I felt my bandage around my head and felt relieved that my surgery was over. All the nurses were so kind to me.  However, my mouth felt like sandpaper and my head felt heavy.  I remember feeling extremely hungry since I did not eat the previous night. I did not eat until 6 pm after surgery, so it had been almost 24 hours since I last ate. When I got the food, I got super happy and was drooling. It was a cold egg sandwich with cheese and crackers.  The sandwich was horrible, but I did not care. I just wanted to eat. When I finished, I felt satisfied and my mood became normal again.

Next, I got transferred to a large room and was assigned another nurse for the night and the next morning. She was super kind to me. I remember trying to visualize what she looks like without her mask. The following day, when she took it down for a second to talk to me, I was shocked because I imagined her looking very different. That night was uneventful because I slept throughout with the exception of a few medical checks overnight.

The next day, on June 11, I was getting ready to get discharged at 6 am. I changed back to my regular clothes, and my nurse removed the bigger bandage around my head and put a smaller one behind my ear. I noticed my partially shaved head on my surgical side, so I touched a bald spot and it felt so prickly like a porcupine trying to stab me. I also felt numb in my surgical area throughout. 

My mom and dad finally arrived to pick me up. They saw the nurse and got some information about the recovery process. As soon as I got home, I took a nap because I was super tired and my head felt heavy. I remember that I would take naps twice a day for a whole week. I could not eat solids yet since when I chew on food, it will bother my ear. I received get well soon gifts, food and packages from my sister, her husband and our family friends. They made my day! My sister and my brother-in-law visited me that weekend and the weekend after as well. I was not comfortable visiting other families not only due to the COVID-19 pandemic but since I would not be able to understand them, even with my Implant on my weaker side.  Before the Cochlear Implant switch on, the recovery process took three weeks. However, sometimes it can be up to a month, depending on the individual's healing process. 

On July 6 morning, I was getting ready for my Cochlear Implant switch on. I had so many feelings coming at me all at once. I was excited, nervous and anxious. I was asking a bunch of questions to myself: "Will it sound the same as my right side or better? Will my hearing improve over the next few months? Will the annoying sound happen again and the surgery would have been for nothing?" I tried my best to focus on the present moment rather than the future outcome since you can only control what is currently happening. After checking in, my audiologist came to see me. I saw my new processor lying on the table, and it looked the same as my right Implant. I got the Naida C1 Q90 Cochlear Implant from Advanced Bionics for my left ear. My right ear got upgraded to the Naida as well a few years prior. it was no longer the Harmony. The only difference is the shape of the headpiece. I was thinking to myself, "Wow, after all of these years, I am finally getting a decent technology on my left ear!". I put the Cochlear Implant on my ear. When the audiologist turned on my processor with her computer, I was shocked by what it sounded like. I was thrilled that it sounds so much better than my weaker ear! It sounded like a broken microphone when you were trying to talk or sing into it. The audiologist checked to ensure that each of the electrodes was working and kept it at a lower volume to give me time to get used to the sound. I also got a starter kit with few batteries and other items to take home. The audiologist also gave me a hearing therapy manual to work on at home every day.

I have never been this curious in my life. I was wondering what things sounded like and I started using the booklet right away. The booklet's first step was to detect sounds from the environment, such as the car horn, microwave beeping, toilet flushing, etc. It was able to hear the louder sounds. Then eventually, in few months, I started to hear softer sounds. On that day, I was finally comfortable to start seeing people. However, of course, only a few people because of the COVID-19 restrictions. Besides, it was perfect timing since that day was my brother-in-law's niece's first birthday, so we went over to their place to celebrate. One of the environmental sounds mentioned in the booklet was a baby's babble, so it was perfect to see whether I was able to hear her babble, and I did.

 After a week of listening to environmental sounds, I started doing some word listening exercise with my family. The booklet begins with vowel sounds since they are higher frequency and are easier to hear than consonant sounds. Later, we got recommended to a therapist, who does hearing therapy for adults only. I meet up with her via zoom call twice a week. We could not meet in person due to COVID-19 regulations. She would come up with fun activities that require listening and give me some exercises for me to practice every day. I also started practicing on my weak ear (my right side) since we always thought it would not get better because it was unstimulated for 11 years. However, with practice on my weaker ear even today, it became a lot better than before. We started to realize how crucial hearing therapy is, even for my weaker ear. If there was an issue in mapping and I could not catch a sound even with multiple repetitions, my therapist would write to my audiologist. My audiologist would tweak the mapping a bit to help boost the sound that I could not hear before. 

After a few months of working hard on my listening skills, I noticed that my listening skills improved drastically. I continue to do therapy today. It is currently almost the same as my listening skills before reimplantation. I also began to notice some sounds that I have never heard with my old (stronger) left Implant, such as certain aspects of music that I have been listening to for a long time. I started to listen to the bass and the beats better than my old Implant. I can also pick up softer sounds that I could never pick up before the reimplantation. Finally, the new Cochlear Implant came with a waterproof case and my previous Cochlear Implant did not have that feature. We have a hot tub in our backyard and I heard the sound of water for the first time in my life. I was so curious and was splashing in the water for 2 hours straight. I even went to my friend's house for a swim (the same girl who wears a Cochlear Implant), and I submerged my head into the water with my Cochlear Implant for the first time. I was so curious about the environmental sounds underwater. When my friend's dad took a picture, I was impatiently waiting to put my head in the water. My lack of patience ended up with the picture of me disappearing underwater and my friend looking at me with a puzzled face.

I started school again in January of 2021, after a year. I was so excited to be going back since I was eager to learn again, meet new people on zoom calls, and was starting to get bored at home due to the COVID-19 pandemic. I was mentally and almost physically fit to start school again.

Now that I have shared my journey, let us discuss some tips that I have learned from my experience. These tips are: the importance of hearing therapy, the importance of asking for help when needed, not treating your impairment as a disability and not letting your hearing impairment define who you are.

Importance of Hearing Therapy

I recommend those considering reimplantation or getting a new implant at an adult age to do some listening exercises every day to boost your hearing skills. The therapy is crucial to improve your hearing skills, rather than just wearing the Cochlear Implant for everyday activities. You can grab a book lying around in your house and let someone else read a paragraph, sentence or word and ask questions. The listener cannot look at the reader's lips since this is hearing therapy and not a lip-reading competition. I remember the old days in middle school where we had lip-reading competitions, and I would win every time. You can also grab a source from the Internet. Whatever you are looking for, the Internet is there to help you. There are also some free hearing therapy activities that you can do online. You can get creative and make it fun! Suppose you have been a Cochlear Implant user for a long time. In that case, I encourage doing some hearing therapy since this will improve your listening skills. 

Think about working out at the gym, for example. Will you ever reach a level of physical fitness that you desire? No, but you do improve every time you go to the gym, and you can go to the gym for as long as you want. Let us say you think you reach your desired body and fitness goals. You would still need to maintain that by working out every day and eating a well-balanced diet for the rest of your life. These become a part of your lifestyle. The same thing applies to hearing therapy for Cochlear Implant users. It is crucial to introduce hearing therapy as part of your lifestyle. You will see sufficient progress and maintenance with your hearing skills. Keep this tip in mind while we move on to the next one.

Hearing Therapy for Safety

My therapist recommended that it is essential to listen to environmental sounds for as long as possible, especially sounds originating in the kitchen and the bathroom for safety reasons. For example, suppose the shower keeps running and you don’t notice where the sound is coming from or even what running water sounds like. In that case, it can end up with a flood or water leakage. Also, if there was a sound coming from a rice cooker, and you do not notice, the rice can potentially burn and, in worse cases, cause a fire. Thus, it is crucial to recognize what those scenarios sound like so that we can react timely.

Always Ask for Help!

People who wear Cochlear Implants, including me, can sometimes have difficulty following group conversations and eventually get lost. It is okay to ask people to repeat what they are saying to understand the conversation. Therefore, I naturally prefer hanging out with my friends individually or in smaller groups. Still, sometimes you can be stuck in a group, at a party for example. Reach out and do not be hesitant to ask for help! 

Even at school, if you are having trouble with what the teacher or professor says in class, make sure to always reach out to your teachers and peers for help. Learning will not happen if you are not able to hear and understand what the teacher is saying. I use an FM system, a device that amplifies the speaker's voice with a microphone that the teacher wears. I wear a receiver. I have been using the FM system for my entire life and now it helps me better understand the material covered in class. I also make sure to ask the teachers for closed captioning for videos that they show in class. In high school, I had a fantastic teacher who would email me the material that we will be learning during the week to give me a heads up on what we will be covering, so it prevents me from getting lost. Hats off to her! Lastly, during most of my elementary school years, I had an Educational Assistant who would help me one-on-one with the material. She helped me learn the material so I would not fall behind. Therefore, it is crucial to always ask for help at school and outside of school. It is also vital to make sure that your accommodations are met as much as possible. The accommodations are unique for each person with a Cochlear Implant, so it is important to seek what is best for you. Now we will move on to some general social aspects of having a hearing impairment. 

Do not treat your Hearing Impairment as a "Disability."

Another helpful tip is not to view your hearing impairment as a loss of function but instead being able to have a role in society just like everyone else. I am taking a minor in disability studies at Carleton University, and we learned the difference between impairment and disability. Impairment is a biological term, which refers to lack of functioning in some regions of the human body. Disability is a social term in which one could not perform due to the social barriers they face due to impairment. Let us give an example based on my experience. I have a hearing impairment, and I am aware of it. However, the impairment becomes a disability if there was no closed captioning in a video. Everyone else can understand what the video is about, while I have no idea what is going on in the video. It is crucial to provide accommodations for us not to feel like we are "disabled" and excluded from the general population. Accommodations do not mean "cheating," but it is like a booster seat for individuals with impairments so that everyone, both hearing and non-hearing individuals, have equity. I hate getting called "girl who speaks in a weird accent, brave, deaf, and so on." These are examples of discriminatory acts against individuals with hearing disabilities that people do not realize. Being deaf is something that I was born with, or at least had hearing loss from a very young age, and I do not have any control over my impairment. 

For us individuals with a Cochlear Implant, it is essential to ask for help, as mentioned before and try not to feel helpless or say things like "I wish I were not deaf". Of course, we all go through moments like this, including me, when I wish I could hear without the use of Cochlear Implants. Still, it is crucial to rebound from those negative moments and learn and grow from them. In one of my dance performances, I was dancing and enjoying myself until my Cochlear Implant started to slip off my ear. I began to feel anxious, angry, and embarrassed. After our performance finished, I did not feel like talking to anyone or taking pictures with our dance team. I just sat at one corner on a chair, choked up, and was on my phone for the rest of the performances. 

These events will happen. You need to try to improve it next time to make sure it does not happen again. My brother-in-law told me that we tend to learn better from our negative experiences rather than our positive experiences. Let us say that I did the same performance, and I am happy that my Cochlear Implant did not fall off that day. Did I learn anything about improving in making the Cochlear Implant stay on my ear? No. There is always a way to improve and we often fail to recognize that.

DO NOT let your Hearing Impairment Define You

Not letting your hearing impairment define you is one of the biggest tips that I have been trying to stay away from all my life. This tip is very similar to my last one. Not only do I try not to view my hearing impairment as a disability, but I try to not let my hearing impairment define me. I do the things that other people my age do in general, such as going to school. I also have hobbies such as dancing and makeup artistry. I also love to talk to people, including children and making them laugh. Do I ever try to say, "look, I have a disability or impairment, so I am not allowed to do any of these things"? No, I do not, or at least I try not to. This statement is an act of self-discriminating. I recall a time back in elementary school. My classmates and I were doing a science experiment where we rub our feet on the floor and try to give out an electrical shock to another person by touching them. I wanted to volunteer, so I raised my hand, but my teacher told me that I am not allowed because of my Cochlear Implant. I was fuming after he said that. Again, this is a form of discrimination from another person. Still, as mentioned before, it is possible to discriminate against yourself.

Thank you, everyone, for reading about my experience, and I hope it benefits you in some way. Please feel free to contact me or comment below if you have any questions, concerns or anything else you would like to know more about.

-Shobana Ramesh