The surgery for a bilateral cochlear implant, in my case, was a lengthy decision. It was only three years after the first cochlear implant and after my mother’s death that I could seriously start considering the possibility of hearing with both ears again. Just as I did with all the material I wrote about the first cochlear implant, in this post, I gathered everything I’ve already written about the journey towards the bilateral cochlear implant surgery, which took place in Rio de Janeiro, Brazil. **this post was originally written in 2016.

I want to start with a reflection: What profound hearing loss means? No one is doing great or hears everything with profound hearing loss, even with the best hearing aids available. That is illusion and denial. No one is obligated to get a cochlear implant if they can and have the chance, but we have to understand what profound hearing loss means in our lives.

In my life, it meant not understanding human speech, hearing noises and having a notion that something was happening but not knowing what, having a panic of being in the dark (a person with profound hearing loss in the dark becomes deafblind), going through an endless number of embarrassing and exhausting situations, being dependent on other people for a thousand basic things like hearing the doorbell or sorting anything out over the phone; in short, profound hearing loss only brought me distress, made me lose great opportunities, and isolated me from the world.

This talk of ‘I hear everything, I just don’t understand’ is almost like saying ‘I’m 100kg overweight, I just can’t fit into my size 38 pants.’ Can you see the connection? I didn’t get the bilateral cochlear implant right away out of fear, as it was a big novelty, and I was guided by other people’s accounts and experiences – who hasn’t freaked out thinking about possible Donald Duck voices? Today, when I think about my 2013 reasoning that if one ear didn’t turn out well, I would still have the other, I laugh to myself, because it was only after the CI that I understood that neither of the two ears was still useful for anything back then. If one didn’t turn out well, the other, with profound hearing loss, wouldn’t be my salvation.

Why I decided to do a COCHLEAR IMPLANT

What made the second CI different was the special involvement of my husband, who is an ENT specialist in hearing loss and hearing surgeries, Dr. Luciano Moreira. I had the surgery at Copa D’Or Hospital in June 2016.

Reasons for Getting a Bilateral Cochlear Implant

How did I make the decision to get the bilateral cochlear implant? Since I’m counting down to my second cochlear implant, let’s talk about it. I remember as if it were today when I left the surgery and went online, and there were thousands of messages from you all to read and reply to; there was so much love and care involved. This was a very difficult decision for me; I postponed it for two and a half years until I finally made up my mind.

My Mother’s Passing When I Decided to Get the Bilateral Cochlear Implant

When I was sure of what I wanted, my mother passed away. My mind was a mess because I was not only traumatized by the hospital (4 months in the ICU + 2 months in the CTI) but also (still am) sad and depressed about not having her by my side.

We went through the entire saga of the first CI together, going back and forth from Porto Alegre, rushing everywhere, late nights talking, crying while waiting in the doctor’s office… and suddenly, life pulled the rug out from under me, and my greatest companion left.

I think I have the strength to face this without my mother, but I confess that when I think about it, it feels like an elephant is sitting on my chest. For me, the cochlear implant is almost synonymous with her, who was my greatest supporter, who immersed herself in this world, made friends with hundreds of blog readers, became friends with my doctors and audiologists, and showered everyone with thank-you gifts. In short.

Furthermore, it was complicated because I used to call her and tell her about my wish in the last few months, and she, knowing she was weak, sick, and unable to help me, would ask me to think carefully, ask me why I wanted to go through all that again when I was hearing so well with the right ear (OD), and tried to talk me out of it; these were a mother’s fears and desperation at being unable to care for her daughter as she always had. (Okay, I’ve already cried buckets writing this paragraph).

The day she passed away was the day I found out that CASSI (health plan) had authorized the surgery request, which I had submitted three months earlier. I also had the first CI through CASSI – I remember an audiologist asking me who had given me the surgery and the N5 ‘as a gift’, and I replied, ‘my health insurance, who else?’

Physical lack of Hearing on the left side

I started seriously thinking about the bilateral CI because I began to feel a physical lack of hearing on the left side. My life in Rio de Janeiro is very different and more dynamic than it was in Santa Maria. Here, I talk to people all day long at the SONORA Clinic, I’m always out solving communication-related problems, I live on the phone, I go out to dinner several times a week for leisure or meetings, and I travel a lot.

In other words: I communicate a thousand times more and in a thousand times more challenging ways than before. I’ve even caught myself unintentionally switching the phone to the left side (!!!) to give the right ear a break after 40 minutes stuck on a toll-free line, can you believe it?

Sound localization

When I go anywhere, I need to carefully choose where I sit because of my sound localization, and sometimes that’s annoying. Not to mention that in many situations, I realize I’m all turned to the side trying to catch the sound of someone’s speech—someone I wasn’t expecting, who suddenly sat to my left and started talking to me.

Another recurring situation: I can’t identify which side the sound came from when I’m in front of two elevators or when someone rings my doorbell (which has two doors, one to the right and one to the left, about 5 meters apart).

Tinnitus and cochlear implant

The tinnitus on the left side remains the same: uuuuuuuuuuuuuuu, very low-pitched and unpleasant. If I didn’t have tinnitus, I might not want the bilateral CI, but since I do and since I am living proof that the CI improves tinnitus by almost 100%, this was another key factor in the decision.

Some days I get absolutely irritated when I realize I hear wonderfully well on the right side, and on the left, I have this incessant uuuuuuuuuu.

Thinking about ‘killing’ the tinnitus once and for all brings me enormous happiness. While I’m using the CI, my right tinnitus completely disappears. When I take it off at night, if I concentrate and pay attention to it, I can perceive it less intensely than before. I would say about 80% less intense.

Hearing aid

Because the first CI had a very fast and satisfactory evolution compared to the hearing aid, I ended up not using a hearing aid on the left side as I should have. My residual hearing plummeted. With use, I realize that the combination of hearing aid + CI can be wonderful if both are in sync: my voice is better, people’s voices are even clearer and full of detail, the low-frequency sound arrives powerfully and differently, and any noise is louder.

It’s a shame it didn’t exist in January 2015 when I did the upgrade… If I had a moderate or severe hearing loss in the left ear, I wouldn’t get the second CI.

But it’s already profound in a way that even with the hearing aid at maximum volume, I only hear some unrecognizable noises. Not to mention that I’ve become unaccustomed to the molds inside the ear and even more so to the stratospheric tinnitus after use.

Financial aspect of a cochlear implant

The financial aspect was something that made me wait so long, after all, the hearing industry is like Apple: you barely acquire one, and they already launch an even better one. Being unilateral, it’s ‘easier’ to afford an upgrade, but being bilateral, it’s practically impossible.

I started losing my apprehension when I realized I never had to replace any parts. I never broke a cable or bought new batteries in almost three years. And the CI I have today is only not perfect because to have an MRI, I need to remove the magnet, and it’s not waterproof…

Loss of taste

The issue of losing taste on the right side also held me back. I was terrified of doing the left side and losing my sense of taste for good – imagine hearing everything and no longer tasting anything?? My taste buds on the right side have come and gone since I had the surgery.

For several months, I couldn’t taste food. For several months, my tongue felt like a live thing, and it was difficult to deal with because, after all, a tongue is something you don’t even remember you have. It would tingle all day. At one point, my sense of taste returned, and I thought I was ‘cured’ forever.

Then it went away again. Today, I taste things but still have the sensation of a live tongue, although much less than before. I don’t say I’ve completely lost my fear, but I decided to take the plunge.

Psychological aspect

The psychological aspect also weighed heavily. 2015 was a very tense and complicated year in my life, and I didn’t have much time or peace to think straight. I met Dr. Lavinsky in July 2015 at a congress in São Paulo, and he asked me about the bilateral CI.

I said I hadn’t decided yet. I waited until I was absolutely sure of my personal desire, as everyone who came to talk to me about this subject already had a fixed opinion of “but how can you not do the other side?”, “why the heck haven’t you done it yet?”, etc.

I talked to many users, and the opinions are quite distinct. I remember one who told me he was very happy with the unilateral one, zero complaints, and when he got the bilateral, he started ending the day extremely tired and irritable. The majority say they have a better understanding of speech in noisy environments and that sound localization improves.

Next challenges

Finally, I kept thinking about the next challenges I will still face in life and in which ones I would like to already be ‘bilateralized’. Then I realized that if I become a mother and am still unilateral, I think I would remain unilateral forever – I imagine the fear of going under the knife after deciding to have a child. It’s better to be prepared in case this happens, after all, I’ve reached the crucial age to make this decision – I turn 35 in September, help.

I am fully aware that the first cochlear implant revolutionized my entire life, revolutionized my existence, my soul, everything. The second one will not do that.

Someone made an interesting analogy for me the other day: the first was like the first child, the second was like the second child. You already know what it’s like, you already know the joys and the annoyances, and you already know what to expect.

Therefore, no grand emotions. LOL! Of course, I will be very emotional if everything goes well and if I hear something on activation day. It will have been worth going through the experience again. Luckily, there are only two ears! ?

The second cochlear implant will be another new beginning for me, but new beginnings no longer scare me. It was them that brought me happiness and made me realize that, with courage, life is zillions of times more interesting. To conclude, I’m having surgery on the 28th in Rio de Janeiro (2016).

06/06/2016

I apologize for my absence! Those who follow me on the Crônicas on Facebook FanPage know that on Saturday, May 28th, I had my second cochlear implant. The surgery was very smooth, lasting 1 hour and 30 minutes, all the electrodes were inserted, and the telemetry was excellent. I was discharged the same day and returned home so well that it didn’t even seem like I had just had surgery. I would like to register my thanks here to the entire team and especially to my wonderful husband: Dr. Luciano Moreira.

That photo of Luciano helping me wake up at the end is beautiful, isn’t it? <3

Everything was different. It’s a bit strange to try to explain, but this time I went to the hospital so calm that I didn’t even recognize myself. I already knew what to expect, I already knew how I would feel, I already knew the probable adverse reactions – perhaps the excess of knowledge gave me peace and serenity. However, the psychological part always plays tricks on us, there’s no way around it.

The days after the surgery

Two days later, I was feeling super normal, and, defying express medical orders, I decided to take a walk around Rio de Janeiro with my grandmother and my brother. I overdid it, walked a lot, in the sun and everything.

On Tuesday, I woke up a mess! Dizzy, sore. I spent the day curled up in bed taking painkillers… Luciano said I should write a post titled “Everything You Should NOT Do After CI Surgery” because I was not obedient at all this time.

On Thursday, I woke up in the middle of the night with a terrible auditory hallucination: I ‘heard’ my mother calling me very loudly. I almost had a heart attack from the scare. On Friday, still somewhat terrified by what had happened, I spent the night waking up from a repetitive dream in which I heard a power saw tinnitus, exactly like the one from the first surgery.

On Saturday, it was even worse: I spent the night with auditory hallucinations. On Sunday, I woke up breathless, thinking I was hearing my own breathing, and that this was preventing me from sleeping properly. The human brain is truly a very crazy thing.

I am writing this post on a Monday afternoon. Nine days have passed. I didn’t feel much dizziness, but for a few days, I’ve felt my tongue tingling 24 hours a day. I have almost no sense of taste, which has come and gone a few times since the 28th. The bump has deflated a bit, but I still feel pain.

The left ear remains numb. I feel like the left ear is full of fluid, and this makes the hearing through the CI in the right ear feel strange, muffled. The result: I spend a good part of the day without the CI. And look how crazy this is: my tinnitus in the right ear, which had basically disappeared, is super loud!! I’m not going to lie: I’ve been irritated and have zero patience. If they let me, I’ll stay home quietly in bed for a few more good days…

A new beginning with the bilateral cochlear implant

I keep saying this, and this second surgery gives me the approval to repeat it again: the struggle is in the psychological part. The pain passes, the taste returns, the ear stops tingling, the dizziness goes away. But how to deal – correctly – with the fact that there is a new beginning right in front of my nose?

Not wanting to anticipate hardship or suffering, but what if it doesn’t turn out as good as the first or causes me a lot of physical/emotional exhaustion until the two signals merge and become one? See how far the mind goes? The process is quite long until everything stabilizes, and this brought back many memories of my first months with the first implant.

Nowadays, I feel so ‘normal’ that there’s a certain fear of destabilizing this ‘normality’ achieved with so much sweat and effort.

I know it’s just a down moment and that this festival of auditory hallucinations in the last few nights weakened me, I know it will pass, and I know I’m strong and everything will be alright. But lately, I’ve allowed myself to feel things, digest them, understand them, and only then try to transform what I’m feeling. I decided to get the second CI at a moment of extreme emotional fragility, but I don’t regret it. It was now or never!

In this week of recovery, I had a great babysitter: my grandmother Tereca. It was very nice to be pampered by her during this time, and it served to bring us even closer. Grandma (avid reader here): I love you!!!

My activation was scheduled for June 16th. I think this time I’m more anxious to know what it will be like to resurrect my left ear. On the 16th, I’ll come back to tell you the details. Root for me! ?

06/16/2016

June 16, 2016, was a special day, one that will be stored in my memory just like November 11, 2013 – the activation of my second cochlear implant. Today is my fourth day as a bilateral cyborg, and I finally feel like I can start writing a little about this experience! As I write, I’m only using the CI in the newly activated ear, as recommended by the audiologist. And I’m here hearing the sound of the computer keys, happy as can be. ?

I went to SONORA with more expectation than the first time because I already had a good idea of what might happen. When the audiologists started working, I was super happy because the test noises for each electrode before the activation itself were loud and clear, which made me think that as soon as the CI was actually turned on, I would hear it that way.

But… I was completely wrong! The audiologists’ voices were faaar away, I was hearing very softly, only some parts of my own voice. When Luciano arrived and started talking to me, my reaction was: “Oh, my goodness! Your voice sounds exactly like a woman’s voice here!”

The second cochlear implant made me learn what I teach every day

First, that activation can be a very frustrating moment. Second, that we shouldn’t have any kind of expectation regarding that day. In fact, today I see activation in a completely different way: it is merely the starting point of a journey that will lead our brain to work in a way it doesn’t yet know. Nothing more than that. A moment of novelty and the beginning of the decoding of that novelty.

When I activated the first one, my feeling was different, as I just wanted to confirm my theory that the CI would allow me to hear a little louder than I heard with hearing aids. When I activated the second one, I went wanting to prove my theory that right there, I would hear with my left ear in a way quite similar to how I was already hearing with the right. The disappointment was instantaneous because this smarty-pants here wanted MORE than she got.

It turns out that the human brain is indeed the most interesting and surprising thing of all. In less than 10 minutes, my brain ‘clicked’ and understood that it is better to hear with two CIs than with just one. When the audiologists would turn off the left one and leave me with only the right, I felt an instant agony! That strange little bit I had just gained was already missing.

I left SONORA a little downcast, I confess. We don’t control what we feel, although we like to think it’s possible. When I got to the street, my brain understood that I was now hearing with two implants. I bet other implant users also have this same sensation when the whole body recognizes a newly learned novelty by the brain. It’s indescribable – you have to be a cyborg to understand the wave of energy and enthusiasm that the whole body releases at that exact moment.

The first day

On the first day, besides hearing strange and very soft parts of things and my husband’s voice sounding exactly like a woman’s voice, I got a mixed blessing: a pianist bee started accompanying the arrival of every sound wave in my head! An uncomfortable and irritating buzzing all the time that sounded like a mixture of the sound bees make when flying with the noise those Indian camel bracelets (hello, Jade in Caminho das Índias) make when rubbing against each other. Imagine my level of irritation…

I only cheered up when I got home and came across the video my beautiful friends from Santa Maria made for me, all wearing T-shirts with the words “Paula’s Cochlear Implant Activation: #IWasThere.” If anyone wants to see the master cuteness, just follow me on Instagram because I posted it there. Michele Garcia, Jordana Freire, Dayana Paranhos, and Juliana Zuchetto, you are the best!

The second day

On the second day, I put on the left CI early in the morning and stayed alone in the room for a while. The buzzing of the possessed bee remained firm and strong at the slightest sign of sound, but my brain allowed me some small gigantic pleasures. When I sprayed perfume, I heard the sound of the perfume spritz. When brushing my teeth, I heard the sound of the brush rubbing against my teeth. I chatted and heard my voice better.

I spent the day without remembering I had two implants, but the left one was hurting me, very tight near my scar, causing an annoying discomfort and the urge to take it off because of it. Another funny fact is that I was, and still am, having a monstrous difficulty ‘dressing’ the left CI. My hands don’t know what they’re doing, being so accustomed to ‘dressing’ the right one. I get completely confused and waste a lot of time until I can fit it into the left ear (OE), connect the antenna with the magnet, and then turn it on – I feel just like the guy in this video.

I remembered that when I started using the right one in 2013, the sound of it along with the hearing aid in the first few days was very strange until one beautiful day I woke up, and the sound of the two had merged in my brain and become the same. I managed to use both CIs until the very end of the day, as the pain/discomfort was irritating me, and when I got home, there were 7 people talking at the same time. The tolerance of a recently activated bilateral implant user on one side is quite short…

The third day

On the third day, my friends took me for a walk again – the two kept asking me how the ‘bee’ was, hahaha. I said “HUH?” several times and, like every card-carrying person with hearing loss, I got mad about it; I think there’s nothing that makes me angrier with myself than blurting out a “HUH?” at this stage of the game.

In the evening, I ended up taking off the left CI again due to the annoying pain it was causing me, and I realized it has nothing to do with the scar, but rather with the contact of its edges with an unaccustomed ear. It’s no wonder that here at home, we say I have ‘crooked’ ears – there’s always a problem! The pain is in the exact spot of a part of the cartilage behind the ear that comes into contact with the end of the rechargeable battery. How much patience you need…

The fourth day

On the fourth day, I woke up and put on both implants. I spent the afternoon talking and didn’t hear the CI’s warning that the battery was about to run out. Result: I ran out of battery in the middle of a conversation. The good part is that my brain didn’t like this at all and made sure to show me how much more I was already hearing with both. I decided to spend some time alone and only with the left CI, to do the homework given by the audiologists (using only it for a few hours a day).

I grabbed the computer and sat down to write this post on the terrace, and that’s when I noticed I was hearing the sound of the keys very well, my dog barking, my voice also much louder, and even some noises that seemed to be from birds. And, the most sensational thing, the possessed bee disappeared (I hope I haven’t claimed victory too early and that it doesn’t come back to torment me tomorrow, but for now it’s gone). I spent a long time talking to myself to test my voice, and at this moment, I want to put Pikachu in time-out because he is screaming, barking at me. Apart from the bee, no sound bothered me. I loved hearing with the left ear again after so long without high-frequency sounds in it!

I am an anxious patient who wants to evolve more each day

I can’t stand waiting long, and if I could, I would see my audiologist once a week. That’s why I’ve already played around a lot with programs P1, P2, P3, and P4, and of course, I’ve already discovered that I hear much more with P4 – including the noise the Nucleus 6 makes to alert us to which program we are in. I don’t think I’ll want to go back to P1, and maybe my audiologists will abandon me forever after reading this post and realizing that I’m a terrible example of poor cyborg conduct. Márcia Cavadas, Sandra Giogi Santanna, and Lena Dutra, I love you, and please don’t kill me.

As I mentioned in another post, I activated with a backup; my processor hasn’t arrived yet. I’ll try to find out the arrival forecast, but it’s still early. I can’t stop thinking about how much I want a bilateral audio cable to listen to music at the gym with both and how much I also want to connect both with the MiniMic soon – the wireless accessory to answer the cell phone and the one for watching TV will also be missed now. It’s a lot to think about, isn’t it?

The fifth day

Tomorrow I start the week on my fifth day as bilateral, and I already know that I’m going to start liking and enjoying every new discovery. Getting a CI is, in the end, learning to be patient and to value every miserable daily auditory achievement. From now on, no one can stop me! The stimulation here is intense, the anxiety is great, and the gratitude is even greater. My heart is kind of exploding with happiness and the desire to improve more!

Thank you to everyone involved in this new journey and a kiss to Mom, wherever she may be, who must be looking down at me from heaven and thinking, “that’s a wild girl!” ?

PS: Luciano just got home, and I told him I was on P4. He said three short sentences while I kept my eyes closed, paying attention to them. I got two right! \o/

08/16/2016

When I was investigating the possibility of being a cochlear implant candidate in 2013, my doctor said yes, and that I was a candidate for a bilateral CI. At the time, I was like, ‘hold on, let’s take it easy, one at a time.’ At the exact moment of activation, I looked at my audiologist friend Michele Garcia, who was there, and told her: ‘Geez, you were totally right! I should have gone bilateral!’

Let me explain. Like every profoundly affected person with hearing loss on the face of the Earth, I was very attached to the hearing I thought I had. Yes, thought! I only understood in plain words that what I had could not be considered hearing, much less satisfactory hearing as I used to think it was, when I started hearing with a cochlear implant. I used to tell everyone that I managed fine and was great that way, and the worst part is that I believed it myself. How could someone 100% dependent on lip-reading, who came home every day cross-eyed and destroyed by the mental fatigue caused by hearing loss, consider themselves ‘great’? Honestly…

When a person with profound hearing loss asks to talk to me, whether at SONORA or by email or Facebook, the discourse is generally identical to my 2013 pre-CI discourse: ‘I hear everything, I just don’t understand, I need lip-reading,’ or ‘I’m fine like this, I hear everything with my hearing aids.’ Folks, no. I understand and respect the fact that each of us has our own time, but facts are facts.

Follow your heart

You have to do what your heart tells you, of course. Mine told me to hold back, out of fear and insecurity. The moment I turned on my first implant, even with that initial strange and very soft sound, my brain already realized that it was infinitely superior to the sound I had with the combination of profound hearing loss + hearing aid.

Right there, the regret of not having done both at once hit me. It took me two and a half years to have the courage and true desire to go through it all again.

Actually, I’m currently ‘going through it,’ as on the 16th, I will complete two months with a bilateral cochlear implant, and I am still in the very initial adaptation phase. I’ve caught myself thinking several times that today I could have both ears like the right one already is, with total speech comprehension and sound, hearing at 5dB in some frequencies.

But I will never know if I would have had this result if I had opted for the bilateral in 2013. For now, I continue with a baby on the left side, who already hears and understands a lot without lip-reading, but who is still crawling next to the Usain Bolt on the right. 🙂

But don’t fail to be rational either

Evaluate your decision more rationally than emotionally if you are capable. Deciding on just one is already difficult, let alone two. If I can give one piece of advice to anyone with bilateral profound hearing loss who is a candidate for the CI, it is just this: do it!

You have nothing left to lose, but you have an entire sound world to gain, should everything go well, and the odds are in your favor – doctors are very rigorous in indicating this surgery! If I could go back in time, I would have gone straight for the bilateral, in 2013, without a shadow of a doubt.