Carrie's Cochlear Implant Birthday!

Happy 1 year CI Birthday to ME!!  Join me today as I reflect on the past year and celebrate the joys and challenges of my cochlear implant journey.  In this episode I share about the “what ifs”, the little voice in my head, the phone call, the consultation, the surgery, and activation.  What an amazing year it has been and I am excited to celebrate my CI birthday with all of my listeners today.

For more about my CI journey, visit my blog at www.hearingspanglish.blog

Engage with me on Facebook at:

https://www.facebook.com/empowearaudiology

For more information about Dr. Carrie Spangler- check out her LinkedIn at https://www.linkedin.com/in/carrie-spangler/

For transcripts of this episode- visit the podcast website at: https://empowearaudiology.buzzsprout.com

Transcript

Welcome to the empowEAR Audiology Podcast. My name is Dr. Carrie Spangler and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for ALL of my listeners. Many of us learn and grow by being in communication and connecting with others. It is my hope that all of my listeners will learn something new and be empowered after each episode. Whether you are a professional parent, individual with hearing loss OR just want to be inspired, I am glad that you are here with us today.
I would be grateful if you take a moment to subscribe and give a positive rating for this podcast. Also, like the facebook page, empowEAR Audiology and engage in a conversation about each episode. A transcript of each episode is also available on the 3C Digital Media Network webpage in the section of podcasts.
Happy CI Birthday to me!! I cannot believe that it has been a year since my surgery and activation day. Birthdays are always a reason to celebrate, so why not celebrate the birthday of my CI.
This journey really has really forced me to be vulnerable and step outside of my comfort zone. I have always been willing to share my hearing challenges with those I work with and families, but the start of the cochlear implant journey was a way to be vulnerable in who I was. Brene Brown talks a lot about being vulnerable in her book Dare to Lead. I am empowEARed by the amazing quotes that she has. “Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome. Vulnerability is not weakness; its our greatest measure of courage.
This podcast episode is again being vulnerable and sharing with all of you MY own cochlear implant journey. Come join me as I take you on this rollercoaster adventure.
Before I get deep into the CI journey, if any listeners would like the backstory of my hearing loss, I encourage you to listen to the first empowEAR episode “What is Your Purpose”, I took a deep dive into growing up with hearing loss and the life tests that developed as a result of growing up with hearing challenges in this vibrant hearing world.
How did the CI journey get started? All of you listeners know that I am a passionate audiologist with hearing loss. I work in the public schools as an educational audiologist. I work with a multitude of students with CI’s, their families, and educational teams. I have at times suggested to families; have you considered talking to your clinical audiologist and ENT about the possibility of CI? Your child is working really hard to listen and understand with hearing aids.
Flip the table. Now it is me personally who is working really hard to hear and understand what people are saying. BUT, in the beginning, I did not want to believe that this was happening to me. I was in complete denial. I started making up excuses in my head for what I will now call “unfocused hearing”. I would blame not hearing well on my attention to something else. I would blame unfocused hearing on someone mumbling. I would blame unfocused hearing on hanging out in the local coffee house with poor acoustics. I would blame unfocused hearing on not getting enough sleep the night before. I had an excuse for unfocused hearing when I knew deep down it was more than unfocused hearing.
If I had to be honest with myself, how long did I put the blame on unfocused hearing?? I admit it took me about 2 years to come out of “denial” that my ability to discriminate speech was not external, it was internal. AND I am an audiologist. But I am also a human being with feelings about loss. Losing more hearing is a loss, even if it is gradual. I was going through this denial, anger, and detachment with my unfocused hearing because quite frankly, it was getting more and more difficult to understand what people were saying.
What changed? Do any of you have a little voice in your head? The little voice, birdie, in my own faith...God, kept telling me….Carrie, you need to build up the courage to make the phone call. The phone call to set up an appointment for a CI consult.
While the little voice was getting louder in my head to make the call I was also trying to ignore this voice. On the other hand I was dialoguing with MANY resourceful colleagues and friends. I feel like different people were strategically placed in my life so that I could have another seed of courage planted to make that call. I talked with CI audiologists, CI surgeons, CI manufacturers, and most importantly...my audiology peeps who also have HL and have CIs. All of these people along the way have given me their personal cell phone numbers and said to call at any time.
The little voice, I kept arguing with….and my biggest argument was “what if??” What if this is not the right decision? What if this doesn’t work? What if I hate it and never get used to it? Sometimes it is a sign from above that gives you the courage to move forward. I have to share this little story. I was getting ready to go to an audiology conference and looking for a book to read on the plane at the airport. The best seller, Girl Stop Apologizing” by Rachel Hollis caught my eye and I decided to buy it. The introductory chapter of this book was titled “What IF”....and Rachel Hollis asked “What if God put this on my heart for a reason”. I was immediately taken to my own “what if” question and knew this struck me so profoundly that I needed to make the “what if” call for a CI consultation. What if this call and outcome changes my unfocused life for the better?
After returning from this conference, I picked up the phone and called the Ohio State University Medical Center for a CI evaluation. Date set for July 29, 2019.
Leading up to this appointment, I would be remiss if I did not mention the importance of #sameselfpeers. As an audiologist, I understand the CI process on a more advanced level than the average patient. I thought I would be OK with this because this is part of my job. But it is not that way. When the seat at the table is turned and you are on the other side; you gain a really new and different perspective. I felt so blessed to have a network of AuD friends with CI’s that were my lifeline. I could ask any question and they shared their own experience. I just want to have a huge shout out to Stacey Lim, Karen McGiver-Lux, Tina Childress, Samantha Kesteloot, and Sam Atcherson for being my #sameselfpeer lifeline.
July 29th was finally here and Troy (my husband) and I were starting our 2 hour trip to Columbus with a quick run through Starbucks. Troy has never been to an audiology appointment with me, so this was all new to him. We arrived and got checked in. I remember having second thoughts and thinking...I am not sure why I am here...I don’t think that i will be a candidate but I need to rule it out.
My name was finally called and we went back to the booth. I was on Dr. Debby LaPrete’s audiology schedule that day. Troy stayed in the booth with me as she went through the multitude of unaided and aided testing. At times, Troy had to busy himself with his phone because the sounds were escaping the headphones and I was not hearing. I knew without seeing the results that it was not good. Seeing the results on paper; brought my unfocused hearing into reality. My hearing had shifted and my speech discrimination was not good. Both of ears looked the same audiometrically (for those audiologists out there, I have essentially normal/mild loss in the loss frequencies and steeping slope to a severe to profound in the mid and high frequencies. However, my speech discrimation for the left ear was much worse than my speech discimiation in the right ear. Dr. LaPrete confirmed my reality...audiologically my scores were in the CI candidacy range.
My next appointment that day was with Dr. Oliver Adunka, who is the director at OSU Dept of Otoloyngology, Head and Neck Surgery with a speciality in CI surgeries. My path had intersected with Dr. Adunka because of a professional collaboration for the state of Ohio. After waiting for a while, my name was called. Dr. Adunka and an entourage of medical students with him that day as well. After looking at all of Dr. LaPrete’s audiological testing, taking a case history...he confirmed that yes I would be a candidate for a CI and also explained that with my configuration of hearing loss, I would also be a candidate for hearing preservation CI surgery, which means that preserving my residual low frequency hearing could be a strong possibility.
After answering many questions, my final question to Dr. Adunka shocked me the most. What are the next steps for moving forward?? I actually left my July 29 appointment with a surgery date of Nov 15, 2019. What a huge step forward and all in one day!
August 29, 2019 I had another appointment with my CI audiologist, Dr. Debby LaPrete to select which CI would be the best fit for me. Based on my results and consultation with my CI team, the left ear was the worse ear and would be the CI implant ear. I was also able to talk extensively with Dr. Adunka about the 3 different choices and received valuable insight about the internal device (part that will be implanted) as it compared to my personal hearing loss and results of the CT scan. My audiologist (Dr. LaPrete) shared with me a device comparison sheet and manufacturer information and I was able to go home and look at this. For all of you listening who may be thinking about a CI, I encourage you to do your own research, talk with the CI team, talk with CI recipients, and go with what feels right for you. Putting on my “audiology hat”, I have had the opportunity to work with children who have CI’s and it is not the device that determines the success. It is the expert placement of the internal device by the surgeon, the CI mapping audiologist and patient relationship to establish baseline and continued mapping/programming, the hard work that goes into learning how to listen with the CI (yes, I am signed up for specialized listening therapy), and of course the village of support that is needed from family and friends. There are always going to be individual variables that will impede the success of progress that may or may not be accounted for and everyone is individual. Cochlear implants are a modern marvel and I am thankful for the engineers and scientists at each manufacturer who study this and continue to improve the internal and external devices so that individuals like me can benefit. After doing much research on my own and comparing the different devices as well as external options, I decided that the Advanced Bionics (AB) cochlear implant is the right choice for ME. On August 29, I was able to select my color and accessories! Another step closer on this incredible, decibel experience!!!
I didn’t have any other appointments until my actual surgery date of Nov 15. Thankfully I did not have much time to really think about the surgery as the beginning of the school year had begun and I was fully immersed in my educational audiology responsibilities.
Then all of the sudden it was November!! My surgery date was in 2 weeks and the countdown was real. The roller coaster ride of emotions came flying back. On the professional side, I knew that this was the right decision. On the personal side, I felt anxious, nervous, excited, and scared. I am a person who LOVES order and structure in my life. This is going to be a test of trusting the unknown and having faith through this process. I also know that this process is going to be a test of my patience, perseverance, and positivity.
November 14….Troy and I headed to Columbus for an overnight stay before the big surgery day on the 15th. I have to say that the roller coaster of emotions and anxiety had actually subsided and I felt a peace about the whole process. Troy and I had a wonderful dinner with some wine (before the 11 pm pre surgery instructions) and had a good night sleep.
I woke up extra early on the day of surgery and actually experienced a little sadness when I realized that my left hearing aid which has been a part of me for over 40 years was no longer going to be part of me. At 6:45 AM we arrived at the Ohio State Brain and Spine Hospital to get checked in. Got all prepped for surgery with IV’s, heart monitor, and other prep. Met with the anesthesiologist to go over health history. Also met with Dr. Adunka prior to surgery and he was ready to roll. By 9:15, I was being wheeled back into surgery and next thing I know it was 11:45 am, I was being “woke up”. The anesthesiologist asked if I knew where I was and I was able to tell her the hospital. They asked me a few other questions and wheeled me back to recovery.
I found out in recovery that Dr. Adunka had called Troy. The initial report was all positive! No complications during the surgery and he felt confident that the internal device was inserted without complications and he felt that he was able to save some of my residual hearing! It will be hard to tell exactly with all of the fluid and packing, but I am hopeful for this! I have now been initiated into the BIONIC ear world!
In recovery, I was in localized pain (obviously) on my left side. I did end up taking a high level pain pill to help with the initial shock to this side. The nurse also wanted to be sure that I was able to walk. The moment of truth to see if my one fear of dizziness after surgery was going to be there. I was able to get up with a little unsteadiness, but overall, I felt pretty good! I got to see what I looked like too. A big white softball sticking out the side of my head and some really crooked glasses
By 1:45 we were on the road back home to recover. By this time, my appetite had returned some, but my jaw and throat were hurting. The only thing that sounded good was a Wendy’s frosty and some French fries! Something soft and something cool! By 4:00 I was on the couch with my wedge pillow, lots of meals from my mom and friends, flowers and cards of inspiration, and ready to take a nap. Kept up on Tylenol every 4-6 hours and drank lots of water and hot tea. The first week I experienced some good and not so good recovery days; each day I felt physically stronger and more energy. I continue to have the feeling of pressure/fluid in my left ear. I also experienced some blurry vision (when reading), which also can be a side effect of the surgery and vestibular disturbance. The vision cleared up about 5 days after surgery.
One thing that I knew as an audiologist and as a patient, was that I am going to be without hearing (or very little!) post CI surgery. However, nothing quite prepares you to have a sudden unilateral hearing loss. All of my life I have experienced the same degree of symmetrical hearing loss in both ears (audiogram). These past 10 days have created a “profound unilateral” challenge by taking away all of the hearing in my left ear. At first, I did not notice it too much because the physical pain of post surgery was on my mind. After 5 days of being in the house and getting stir crazy, I felt well enough to venture out. Getting out of the house immediately challenged my “profound unilateral” loss and what a challenge it was! I quickly become hyper aware and alert of my surroundings. I could not localize where sounds were coming from and kept scanning my surroundings to be sure no one was actually trying to say something to me. Listening fatigue is REAL and emotionally and physically drains. Each small venture out resulted in a nap! Maybe this is God’s way of preparing me to embrace the little wonders of sound when I am activated with the CI.
Remember listeners, at this time in the journey, I have not been activated. I remember the feeling of discouragement creeping back in my mind with those initial questions...Was this the right decision? Is this going to work? Except now, there is no turning back. Timing is everything. I was watching Netflix and the episode “The Call to Courage” by Brene’ Brown popped up on shows to watch. In this episode, Brown talks about vulnerability. She describes vulnerability in this way; it is not about winning or losing, but it is about showing up when you don’t know the outcome. She also talked about choosing courage over comfort and the need to be brave in our own arena. If we deny our story, the story defines us. If we own our story, we write a brave new ending!
December 4,2019 finally arrived. Troy, Hannah (my daughter) and I arrived at OSU for the long awaited day. My audiologist, Dr. Debby LaPrete and AB Clinical specialist Dr. Johnny Sabol were all on board. The appointment started with measuring residual hearing in the left ear and I am still astonished that Dr. Adunka through surgery was able to preserve so much of my low frequency hearing. After all of the preliminary testing and acoustic verification, THE moment of anticipation was finally here. Once the impedances/electrodes were checked, it was time to start the mapping (or programming) process. Dr. LaPrete hooked me up. This was the first time I got to experience what the magnet and cochlear implant processor would feel like on my head. I was surprised that the headpiece/magnet really was not tactilely noticeable once it was in place. I imagined some sort of magnetic strength that would feel uncomfortable on my head. Next each of the electrodes was tested individually through the programming software. I had to subjectively judge the perceived loudness of each of the 16 electrodes ranging from low to high frequencies using a loudness growth chart (ranging from no sound extending through too loud). Once I reached a subjective comfort level, I felt like I was at the eye doctor trying to figure out if “1 or 2” was clearer. Once all of the soft and comfort levels were subjectively determined, it was time to experience listening to ALL of the electrodes together…the real CI activation experience. It is REALLY hard to describe what you have never heard, EVER. At first I didn’t think that I was actually hearing anything at all. I kept thinking that I was hearing some sort of hearing aid feedback. This was the aha moment that I realized I was actually hearing sound from the activated CI. The best way for me to explain what I initially heard is feedback, bells, chirps, and whistles.
The activation continued with quite a few listening situations in which I would listen through the CI only (take out my hearing aid and plug up my ear), as well as listen with both the CI and hearing aid (bimodal) to make sure that I could tolerate both at the same time. At one point later in the mapping session, Dr, LaPrete turned off the CI for and I just had my hearing aid in. I know I was exhausted from trying to make sense of all of this sound and I made the spontaneous and fatigued comment, “oh, back to normal”. Debby and Johnny immediately asked if I could expand on my “back to normal” (hearing aid) and the CI. The analogy that came into my mind was that the CI would be like going to New York City for the first time. It is busy, noisy, full of activity, exciting, and overwhelming. The hearing aid would be like going out for a weekend drive in the country. It is a calm, quiet, leisurely, tranquil drive through back country roads.
One-week post activation and what a world of jingle bells and many more sounds abound! I am fascinated that with just one week of intentional, dedicated, full time use of the cochlear implant as well as auditory training my brain is creating a whole new network to make sense of the multitude of sounds and speech that I have never heard before. I can personally attest that I will need a lot of listening training to make sense of this whole new world. I am thankful for my Auditory verbal therapist Dr. Denise Wray who pushed me to make sense of sound and benchmarks listening skills to challenge me to train my CI and listening brain. Each day the CI sounds gets a little more focused and clearer, but the key is to have the mindset of intentional, dedicated, full time use of the CI so that it becomes more natural and part of who you are! I am sure that I am going to be learning more and more about the refining process, but one of my initial goals was to dedicate myself to full time use of wearing the CI during my waking hours.
With that being said, I had many initial hearing discoveries. Here are a few of the highlights!!
I had to take the dog collar off Josie when we went for a walk because the metal dog tags were annoying me, hence I have never heard dog tags clanged together
The turn signal in the van is audible! I could always see the light flashing knowing it was on, but it is audible too!
I heard the sound of freezing rain hitting my windshield as I was driving! (Ohio winter is on its way!)
My feet making a crunching sound when walking on salt that has been freshly strewn on the icy road
The carts at the grocery store are loud and squeaky (and quite annoying!). Does anyone spray these things with WD-40?
Christmas and Holiday MUSIC!
LIsteners, I could continue to share many more CI hearing celebrations with all of you. I encourage you to go to my blog, hearingspanglish.blog to read more about this journey over the past year. With all of the craziness in the world, I want to thank all of my listeners for celebrating my 1 year CI birthday with me.
Thanks for listening to the empowEAR audiology podcast. Make sure to visit the website at 3cdigitalmedianetwork.com and click on the empowEAR podcast where you can subscribe to the show in iTunes, Spotify, and Google. Also engage with me on my FB page at empowEAR audiology. While you are at it, if you found this show to be valuable, consider giving me a 5 star rating or simply tell a friend or colleague about the show. As always, thanks for listening and being empowEARed.