The Decision Process: Choosing to Hear Again

In late January 2022, after thorough evaluations of all my assessments and scans, the cochlear implant team at St Thomas’ Hearing Implant Centre, led by the compassionate Isabelle Jones (a speech and language therapist), proposed a right-sided cochlear implant. Despite my concerns about potentially aggravating my Tinnitus (a known risk of the surgery), they scheduled a follow-up discussion with the surgeon, Miss Pai, to ensure all my worries were addressed. This thorough approach reassured me that I was in capable hands.

Surgery Day: July 8, 2023

The operation occurred on a warm summer day, and by the evening of July 8, 2023, I found myself navigating the first hours post-surgery. The effects of anaesthesia slowly faded, and I began a regimen of pain management that started with 5ml of morphine administered every four hours. Thankfully, this helped keep the pain to a manageable level, and I was able to maintain a somewhat foggy awareness of the goings-on.

The First Night Alone: A Symphony of Sensations

Later that night, alone at home for the first time since the operation, I experienced a variety of sensations that were both intriguing and unsettling. At 19:55, I felt a sharp pain radiating from the inner lobe around my head, with acute sensitivity even to the touch of my hair. By 22:30, the discomfort escalated into a heavy migraine, prompting me to take 60mg of Codeine. This dose took me on a surreal journey. I found myself floating in thought.

A Rough Awakening: The Morning After

The effects of Codeine lasted well into the early morning and by 3:30 AM, I had finally settled into bed, the echoes in my ears and the strange sensation of a sound delay while rinsing my mouth still vivid. The following day, however, brought a rude awakening at 9:30 AM. It felt as if someone had struck the back of my head with a piece of wood. The dried blood in my ear, the throbbing pain from the scar, and the inner ear's persistent aches convinced me that more rest was needed.

Emergency Care and Continued Recovery

That evening, overwhelmed by the persistent and excruciating pain, my friend Amanda rushed me back to the hospital. After undergoing some tests, including one for meningitis, and being reassured there was no severe damage, I was able to focus on managing the pain without fear. This episode underscored my condition, superficial siderosis, which heightens my sensitivity to pain and its physiological impacts.

Through this challenging and eye-opening experience, I've learned the importance of patience, the comfort of having support, and the bizarre new world that now comes with my cochlear implant. Each sensation, whether painful or peculiar, marks a step in my journey to regain a sense we often take for granted: hearing. This is just the beginning, and I'm ready to embrace whatever comes next, one sound at a time.

 

Hospital Visit and Continuous Pain Management

The intensity didn't subside. By the evening, overwhelmed by pain and fearing complications, I found myself back at the hospital. After checks and reassurances of no permanent damage, I started a regular regimen of Oramorph, 5ml doses, to keep the unbearable pain at bay. Each dose brought temporary relief, and yet, the cycle of pain seemed relentless. Over the following days, I clung to this regimen, marking each dose and its fleeting respite in my journal.

Days blended into one another, with nights marked by Oramorph and days filled with attempts to wash my ear and manage the side effects. Tinnitus became a piercing constant, a reminder of my body's struggle. As I noted each medication, from Oramorph to ibuprofen, I sought patterns that might lead to longer-lasting relief. The solace of sleep was often my only reprieve, providing a break from the relentless pain and the invasive sounds that now filled my days.

A Glimmer of Improvement

Despite the ongoing challenges, there were moments of profound relief. Occasionally, a sharp sensation in my inner ear would give way to a sense of release when I clenched my teeth a bizarre but welcome distraction from the pain. Washing my ear became a routine that offered moments of normalcy, though the sensation of padding from an old surgery reminded me of the complexity of my medical history.

Reflections and Resilience

By July 17, as I documented my journey, I began to reflect on the resilience required to adapt to such a life-changing device. Each entry in my diary, each note about the timing and effect of my medications, was a step toward understanding and eventually mastering this new part of me. The journey was far from over. However, I gathered more strength, insight, and determination to overcome each day.

As I adjust and heal, each day will bring me closer to a new sense of normalcy, where the world's sounds can be embraced rather than feared.

Navigating Uncertainties and Managing Pain 

After my cochlear implant surgery, the recovery process introduced me to a series of challenging days and nights filled with intense sensations and a relentless quest for pain relief. On July 18, 2023, I found myself grappling with an unexpected residual hearing sensation, prompting immediate questions about my auditory status. Compelled by these concerns, I scheduled a doctor's appointment to investigate the sensation further and examine a noticeable bump on my head.

During a visit to the emergency room, I was reassured that the bump was harmless, but to address the persistent pain, I was prescribed Tramadol 30 mg, switching from the 5ml Oramorph I had been using. That night, at 23:50, I cautiously took the Tramadol, aware of its powerful effects from past experiences. Though effective for migraines, I resolved to use this medication sparingly. Thankfully, the pain subsided significantly despite that it left behind a dull mental fog that seemed to cloud my thoughts.

Experiencing New Sensations

By July 20, the auditory hallucinations took on a new turn, with digital-like noises echoing in my head, followed by intense bouts of Tinnitus that persisted throughout the day, rendering me incapacitated with a headache. The following evening brought about an unusual clicking noise in my ear every time I swallowed, likely a fluid buildup post-surgery, yet another layer to the already complex recovery process.

Days merged as I occasionally lost track of time, overwhelmed by the physical and cognitive adjustments my body was undergoing. The evening of July 22 was particularly rough, with sharp, stabbing pains near my eardrum so severe that I had to administer 5ml of Oramorph to quell them. The relief was profound, and for a moment, I could hear my thoughts clearly, if only briefly.

Embracing Moments of Relief

As I adjusted the dosages and times of my pain management regimen, I encountered days when I could manage the pain just enough to avoid the more potent Tramadol, fearing its side effects. On July 23, I endured a day devoid of hearing, accompanied by sharp pains that were somewhat alleviated by the judicious use of Tramadol. The relief was enough to consider it a success for the day.

By July 25, a sharp pain struck my eye, an unexpected symptom that tested the limits of my tolerance. My peripheral hearing, tested with ear buds, seemed worse, yet it was still present, an ambiguous sign that puzzled me as much as it reassured me.

Reflecting on the Journey

This journey of recovery and adaptation is filled with moments of intense pain and surreal auditory experiences but also with small victories that offer glimpses of the potential that lies ahead with my cochlear implant. Each dose of medication, each symptom and each doctor's visit are steps on a path that will lead to a better understanding and, eventually, a better quality of life.

As I navigate through this transformative phase, documenting each step helps me to process the immense changes and to prepare for the adjustments still to come. It's a testament to the resilience required to endure and thrive amidst the challenges of such a profound life change.

Journey to Sound: The Days Following My Cochlear Implant Activation

As my journey with the cochlear implant unfolds, each day brings new challenges and surprises. On July 26, 2023, I awoke to the peculiar sensation of a clicky ear, a reminder of my recent changes. Despite the busy day ahead, I knew rest was essential. I planned to sleep longer, hoping to shake off the discomfort before heading out to Wetherspoons for a much-needed change of scenery.

The Activation Experience

The next day was significant. On July 27, my son Syd accompanied me to the hospital for what would be a pivotal moment in my journey: the activation of my cochlear implant. The atmosphere in the recovery ward was bustling, with nurses attentively tending to patients. When I met my physician, Ms Pai, she apologised for the minor incision made during surgery, to which I lightheartedly responded, "You can't make an omelette without breaking eggs." 

The dose of Oramorph I received afterwards eased me into a restful state, allowing me to retreat into the digital world on my phone as I recuperated.

Exploring London with Loved Ones

The morning of July 28 brought an adventure; Amanda, Roxanne, Syd, and Mariana swept me off to explore the vibrant streets of London. Our day out was filled with laughter and lively conversations, starkly contrasting with the solitude of recovery. Surprisingly, I could hear everyone, though not clearly. Maintaining my composure amidst the bustling city was a triumph. That night, my newfound auditory sensitivity had me glued to the television until the early hours, captivated by each sound.

Adjusting to New Sounds

By July 29, the sounds around me began to feel less alien. I was engaging in conversations without the robotic interference I initially faced. However, my voice echoed back to me with a metallic tinge, a reminder of the synthetic nature of my implant. The day was punctuated with moments of revelation. I heard an alarm on my phone, a sound I hadn't recognised in years and found myself quickly following TV shows, discerning voices and tones that once eluded me.

A Quiet Reflection

As the month drew to a close on July 30, the recurrent click in my ear was a niggling annoyance that morning. My breakfast was simple, and the dizziness and a vague headache loomed over me, reducing my motivation. After taking two paracetamol, I attempted some meditation to find a semblance of peace. The day, however, slipped by unproductively. A text from Amanda interrupted my rest, hinting at plans that never materialised. It was a stark reminder of the isolation that sometimes comes with recovery and the need to be proactive about my rehabilitation and social life.

Embracing the Future

 As I navigated these early days of my new hearing, I became acutely aware of its profound impact on my perception of life. Each sound was a discovery, each interaction a test of my adaptability. The artificiality of the sounds I heard was slowly becoming a part of my narrative that I was learning to control and make sense of. Though initially foreign, the implant was gradually becoming a gateway to a richer, more connected experience of the world.

Looking Ahead

Reflecting on this transformative phase, I am filled with apprehension and excitement. The journey with my cochlear implant is just beginning, and I am curious and eager to see how it unfolds. The promise of better hearing has already started to materialise, bringing with it the potential to reconnect with the world in ways I had almost forgotten.

Experiencing New Sounds and Challenges 

As July drew to a close, my journey with the cochlear implant brought both joy and challenges. On the evening of July 21st, I struggled with voice recognition while trying to enjoy a television program. The voices sounded unfamiliar, making it hard for me to follow along. Frustrated and overwhelmed, I decided to freshen up, hoping a shower might reset my senses. It’s a strange sensation, showering with what feels like a computer inside your head, and the Tinnitus that screams into life each time I activate the processor only heightens this bizarre new reality.

The following day, on July 31st, I faced a poignant moment while still grappling with the Dalek-like distortions of sounds, including the now-alien tone of Jackie Chan's voice on television (who, for some reason, sounded like Arnold Schwarzenegger). My visit to the neurologist brought news of his impending retirement due to ill health, a bittersweet revelation given his support over my auditory journey. He expressed satisfaction with my progress but suggested we reconsider my medication, specifically Ferriprox, leaving its continuation in the hands of my new neurologist, Dr James Gratwicke. 

Continued Adjustments and Encouragements

As August began, I enjoyed an early breakfast with my son Syd at Wetherspoons. Despite the comfort of routine, the exhaustion from constantly translating sounds made me yearn for rest, yet sleep seemed elusive as I struggled to keep up with my schedule. By August 3rd, amidst the confusion of lost days, a ray of hope shone through during my second mapping session. The encouragement from the audiologists, pleased with my adaptation, spurred me on to embrace another mapping adjustment despite the initial difficulty in distinguishing the familiar from the robotic tones of my new hearing.

Zoo Adventures and Personal Reflections

On August 7th, I went to the zoo with Amanda and Roxanne, and the cacophony of animal sounds and visitor chatter tested my auditory adjustments. Although the animal noises eluded me, the clear communication with my companions marked a significant improvement. This outing underscored the ongoing adjustments and the slow return of life’s familiar rhythms.

By August 8th, my focus intensified on distinguishing the underlying voices from the mechanical noise. This task proved crucial during moments of solitude, like noticing the sharper, crisper sound of a flushing toilet, a mundane sound that now marked progress. That evening, as pain radiated across the back of my head, I reluctantly took a dose of Codeine to ease the discomfort. The brief return of a piercing noise in my head was a reminder of the delicate balance I navigated between relief and dependency on medication.

As night fell, the pain persisted, particularly around my scapula, challenging my ability to find comfort in bed. Games of solitaire and Scrabble were a distraction before I attempted to sleep, hopeful that the pain would subside enough to allow a few hours of rest.

Embracing the Journey

Each day with my cochlear implant brings new challenges and revelations. From the mechanical distortions of sound to the vivid clarity of everyday noises, I am learning to navigate this new auditory landscape. Every adjustment, struggle, and small victory reminds me of my profound journey of hearing and rediscovering the world and my place within it. As I adapt and adjust, I remain hopeful and determined to make the most of this incredible technology and the second chance at sound it has given me.

Struggling with Side Effects and Seeking Solutions

August 9, 2023, marked another pivotal day in my journey to adapt to my cochlear implant. I had scheduled an online appointment with Isabelle, my trusted speech therapist, to discuss persistent issues that were becoming increasingly bothersome. My main concerns included a clicking sound behind my eardrum, an alarmingly loud tinnitus when activating the implant, and an unrelenting pain radiating from my back. During our session, I hoped to gain insights into managing these symptoms effectively.

Later that day, while trying to unwind with a movie featuring George Clooney, I noticed something peculiar: his voice bore a striking resemblance to Will Smith’s, as processed through my implant. This odd similarity sparked my curiosity about the implant's voice recognition capabilities. However, the relaxation was short-lived as I grappled with severe pain. In an attempt to alleviate it, I resorted to self-medicating, followed by Tramadol 50 mg to combat the discomfort that was now extending down to my hands. After applying heat spray to the affected areas by midnight, I felt relief, hinting at a possibly quieter night ahead.

Navigating Daily Challenges and Adjusting Medications

The following day, August 10, the pain persisted, mirroring the discomfort of the previous evening. As it radiated down my arm, I prepared myself with 30 mg of Codeine, a decision dictated by the need to mitigate the side effects I typically experienced from prolonged use of any single painkiller. That night, as the Codeine took effect, I applied a deep ice pack to my shoulder, hoping for a respite that would allow some sleep and a break from the constant auditory training to differentiate voices amidst the mechanical noise of my implant.

By August 13, I enjoyed an evening filled with family chatter and laughter, though the background noise sometimes overwhelmed my processing capabilities. This incident prompted me to question whether auditory overload, a phenomenon where too much noise can cause discomfort and confusion, was a potential complication of my new hearing environment.

Continued Recovery and Sound Adaptation

Over the next few days, my routine was disrupted by pain and irregular sleep patterns, highlighted by a harrowing night on August 16 when I was forced to take tramadol at 3:10 AM. Despite these challenges, my hearing experiences were slowly evolving. By August 27, after employing various remedies, my shoulder pain finally subsided, offering some much-needed relief and allowing me to attend a garden party. The noisy environment underscored my difficulties with group communication. Unfortunately, the male voice sounded like I could understand clearly what women were saying however Unfortunately, the male voice sounded very rough and barely comprehensible. September rolled in with ongoing struggles to fine-tune my hearing. An appointment for another mapping session revealed the complex nature of my auditory perception as I continued to strive for clarity amidst the cacophony of everyday sounds. My Tinnitus, again a constant unwanted she’s a fantastic companion, seemed to react unpredictably to loud noises, adding another layer of complexity to my sensory experiences.

Reflections on a Journey of Healing and Discovery

Navigating these weeks post-surgery has been a journey of discovery, challenges, and incremental victories. Each interaction, whether with my family, during medical appointments, or with my thoughts, has been an opportunity to understand and adjust to my cochlear implant's new sounds and sensations. As I continue to adapt and learn, I remain hopeful and committed to making the most of this technology, eager to embrace whatever improvements and hurdles lie ahead in my quest for better hearing and pain management.

Unusual Auditory Experiences

October 11, 2023, marked a curious day in my ongoing adaptation to my cochlear implant. A new and peculiar symptom emerged alongside the familiar low  "woo woo" sound. As I swallowed or coughed, a range of unexpected tones resonated, reminiscent of metallic clashes or a starter pistol firing close to my ear. Startlingly, one such noise jolted me awake before my processor was activated, leading me to wonder about the potential effects of environmental factors like sleeping near my phone.

Progress in Hearing and Speech Perception 

As winter approached, with an entry on December 13, 2023, my experience with Tinnitus varied widely. Nonetheless, my ability to discern spoken words improved significantly. I identified film speakers by concentrating on the underlying speech, a skill that emerged as the overlay of voices diminished. By the end of the month, I noticed a slight improvement in my understanding, distinguishing familiar voices from the robotic "Dalek" tone that had initially dominated my auditory landscape; however, at this time, I was still reliant on subtitles.

The new year brought with it new challenges and observations. On April 15, 2024, I encountered a recurring issue where voices sounded as if they were shouting, even at low volumes, leading to migraines and a desire for solitude. This hypersensitivity also affected my enjoyment of television and conversations, where I struggled to filter out the "death metal" sound and discern the actual voices.

Subtle Sounds and Social Struggles

A few days later, on April 20, I noticed a soft, intermittent bass sound that seemed to exist independently of my processor, a reminder that what I was hearing could be Tinnitus. This realisation was underscored on April 22, when familiar music and voices began to sound metallic and distorted, raising concerns about a possible regression in my auditory processing.

Facing Fears and Celebrating Achievements 

By late April, a visit from a friend who helped set up my stereo system unexpectedly triggered a fear response. The dissonance between the harshness of the sounds I heard and the mellow tones in my memory was disconcerting. Yet, this challenge also presented a new goal to reconcile these conflicting auditory inputs.

The highlight of my journey came on May 12, 2024, during a friend’s birthday celebration, including a cinema trip. Despite my apprehensions about being able to follow the movie without subtitles, I was pleasantly surprised to find that I could understand most of the dialogue, a significant victory given the typically challenging acoustics of a movie theatre. This experience was a testament to the improvements in my hearing and a moment of social reintegration, as I could participate more fully in the event.

 

As I continue navigating the complex world of sounds with my implant, each day brings setbacks and successes. The journey is fraught with highs and lows, from the thrill of catching nuances in conversation to the frustrations of unexpected auditory phenomena. Despite these challenges, the path forward is clear. I am learning, adapting and gradually finding my way back to a world rich with sounds, some old and many new.

Discovering the Everyday Magic

In the quiet of my living room, amidst the ordinary moments of life, the sound of bubbles fizzing from a freshly opened drink was nothing short of miraculous. It was late May, the 26th when I truly appreciated the intricate adjustments my implant was undergoing. Each pop and fizz was a symphony, a reminder of how far technology had brought me from the silence I used to know.

Despite the wonders I was experiencing, daily life still posed significant challenges. That same day, after spending hours on the computer without my cochlear implant (CI), I decided to watch television in the evening. To my frustration, distinguishing voices amidst the "yelling" from the TV proved more difficult than anticipated. It was a stark realisation that even without direct social interaction, the ambient sounds around me played a crucial role in understanding spoken language, shaping how I perceived and interacted with the world.

Phantom Sounds and Professional Consultations

Two days later, on May 28th, a peculiar experience caught my attention. I began to hear a consistent sound that seemed to exist only in my head. Experimenting by lying on one side and blocking the other ear, I confirmed it wasn't an external noise but something internal. I made a mental note to discuss this phenomenon with my audiologist, curious about its implications for my ongoing adjustments. However, once again, it was put down to Tinnitus.

As June rolled in, with the 15th marking another milestone, I noticed a significant improvement. My voice started to echo less, and the voices from the TV became more precise and distinct. This progress was juxtaposed with a poignant scene from the TV series "New Amsterdam," where a character expressed a desire to remove their implant. Their decision stemmed from a life deeply intertwined with the Deaf community, a contrast to my own experience, where the implant had opened new avenues rather than closing them. This moment led me to reflect on the diverse impacts that technology could have, depending on one's life, before the intervention.

Embracing the New Normal

The journey with my cochlear implant was filled with moments of joy, frustration, and profound realisation. Each day brought a new layer of sound to explore and understand, from the most superficial noises in a quiet room to the complex layers of human speech. As I continue to adapt, my challenges become less daunting, and the world's sounds become less foreign.

Looking Ahead with Hope

Navigating through the soundscape with my CI, I learned not just to hear again but to listen anew to hear the texture and tone of life. Each day, I became more attuned to the auditory world, grateful for the technology that made this possible, and eager to see what other sounds I would rediscover next. The journey is not just about regaining a lost sense but about gaining a new way to experience the world, a testament to the resilience of the human spirit and the power of innovation.

As I prepared for my next appointment with the audiologist, I was armed with questions, experiences, and a cautious optimism. The road ahead is still paved with uncertainties and possibilities, each day a step further in my auditory adventure.

09/06/24

My processing of sound seems to be fluctuating quite a bit, and I’m not sure why. For a while, I even took a step back, and I could not understand speech that well. I am hoping the processor is figuring out what I like best.

10/06/24

I bought a Noise-Canceling Corded Headset With a Mic in the hope that I would be able to hear better on Web calls and talk to the computer better. I spent four hours listening to the TV with them. I had to turn the volume down by over 2/3 from what I usually had it. Other than that, there was no Great difference. I will be working with them tomorrow, so I will give you an update then.

12/6/24

The ear muffs need to be wider to encapsulate the hearing aid and the ear. I tried a pair of friends' headphones that did it capture. The end encapsulated the Ear and processor, which worked well. I have not checked with the doctor that this is Safe. I will do however, in the meantime, please ask your audiologist if this is okay

18/6/24

Yesterday, I had a great breakthrough. If I look at the person's lips on the TV at times, I do not need the subtitles, thinking back. I should’ve realised this was worth working on when I saw the film Planet of the Apes. 

It appears that over time when I know the sound of the person/actor well, I do not need the subtitles. Considering this, I need them only when people are talking and not yelling. I will test this out in a real-life situation in a quiet room with someone I can’t hear that well. The test will be looking at their lips, reciting what they said, and speaking behind me.

27/6/24 

My hearing went from low to high, and I did nothing to influence it. Two hours before, I had been with friends for my birthday, so I am considering that maybe the receiver of my implant had lowered the volume because of the crowd and then brought it back rather late. That’s one theory. Could it be acting like a hearing aid and muting when things are too loud? I will relate this to my audiologist, with whom I will be online this week.

29/06/24

I watched Bohemian Rhapsody so much, looking forward to hearing the sound of one of my favourite bands, Queen. The film was terrific and very enlightening. I could not hear the songs that were being sung, however, I did enjoy trying to listen along. Some people would find this very annoying, and I have even heard that someone refused to use their processor with their implant. The good news is that she did eventually start using it again. 

It has been a year and a half, and I still do not have the perfect Hearing. Most times, that does not come back. If you love music, I can imagine this would be your nightmare, my advice? Accept what you have and look forward to better days. For me, the one thing I wanted was to understand speech again so I could carry on with the silent bleed, and I have achieved that; anything more (and there are changes quite regularly) is a bonus. It’s so easy to see what you have not got or what you have lost; however, I find the best way to look at life is to be content yet strive for excellence.