Resilience in the Face of an Unexpected, Unusual Diagnosis
A recent (and ongoing) health scare helped me realize the healing power of persistence
My first appointment in ENT was for a hearing test, where the audiogram revealed a hearing loss in my right ear.
Hearing loss! Who, me?!
I stared at the audiologist in disbelief, as I gasped for breath under my mask. A flood of questions rushed and roared through my mind. What the…What caused this? Is it connected to menopause? I have not even been sick since last February… Aha! I knew it. I knew it! It was Covid! Covid caused this!
The audiologist gave the condition a name — Sudden Sensorineural Hearing Loss — and handed me a flyer with more information. Weak in the knees and still processing the diagnosis, I grabbed the flyer and my belongings and stumbled back into the lobby for my appointment with the otolaryngologist (ear specialist).
Diagnosis
In January 2021, I was diagnosed with Sudden Sensorineural Hearing Loss in my right ear, after I developed symptoms such as fullness, muffled hearing, and tinnitus. The first hearing test indicated a hearing loss of 30dB, or as being in the “mild” loss range. To put it into perspective — a whisper is about 30dB.
Inflammation of the inner ear is generally thought of as the underlying cause of this condition.
What causes the inflammation? A number of things, including head trauma, loud noises, neurologic issues, vascular abnormalities, toxic substances, virus/bacteria, or tumors. Because there were no identifiable causes in my case, the condition was deemed idiopathic.
Naturally, my immediate question was whether Covid was indirectly responsible for it. I had been sick a year earlier with what I believe was Covid, in late February of 2020, just prior to Covid becoming a pandemic.
The “flu” part of the infection had been brutal, to say the least, followed by a horrific upper respiratory infection that resonated in every cell of my ears and sinuses. The constant sneezing had resulted in a nerve pinch in my neck!
At the time, shortness of breath was Covid’s singular identifying symptom, which I didn’t experience, and thus it was labeled the seasonal flu.
Considering that the infection had occurred a year earlier and there hadn’t been any testing or hospitalization and therefore no evidence, its relation to the hearing loss was difficult to assess.
The unexplained nature of this diagnosis was distressing. For a 52-year-old health-conscious, thriving individual with no medical conditions, a hearing loss outcome was not one I had ever considered.
Hearing is a primary sense. When aroused from bed, the first sound to greet the ancient human was the bright crowing of the rooster; most modern humans wake up to the angry blare of the alarm clock. Hearing assists the safe and efficient completion of movement-oriented tasks: crossing a street, driving, dancing, playing an instrument. Hearing prompts us to think, communicate, follow instructions, steer clear of danger, make decisions, distinguish voices, enjoy a performance, listen to music, and talk on the phone. Hearing helps us connect!
And I’m all about connecting and communicating.
Treatment
What ensued was an aggressive treatment regimen consisting of a tapered course of an oral steroid followed by three intratympanic steroid injections over three weeks and an MRI of the head/neck.
If you’ve taken prednisone, you understand its side effects: insomnia, hair loss, and a sluggish stomach, to name a few. No fun! The exiting prednisone launched a payload of withdrawal symptoms, which for me took the form of a sustained migraine headache that lasted ten long days.
A second hearing test upon completing the oral steroid indicated no change in the hearing.
Consequently, my otolaryngologist recommended proceeding with the next phase of the treatment — injecting liquid steroid through the eardrum, directly into the inner ear — in an effort to arrest the inflammation.
The needle perforating the eardrum is the freakiest thing that I have ever experienced. A numbing cream first desensitizes the eardrum, and then a thin needle delivers the medication by puncturing a tiny hole in the eardrum. The moment the cold liquid hits the inner ear tissue, it sends the brain into a vertigo-like frenzy, generating a feeling that the world around you is spinning. The spinning is brief, lasting only a few seconds, but is intense.
I endured all three injections, each leaving me as exhausted as ever. Side effects of this procedure can include an ear infection and/or a perforated eardrum. Luckily, I developed neither.
The MRI was anxiety-inducing and claustrophobic at first but turned out to be a fascinating first-time experience. In fact, upon my request, the MRI technician walked me through the technology and gave me a demonstration of how the machine works!
Education
Alongside the treatment, I plunged into research, reading every piece of literature I could find on SSHL.
My research indicated it is a rare condition, affecting only 1 in 5000, typically between the ages of 50–60, and generally occurring in one ear.
Studies overall have concluded the prognosis for recovery to be subjective: Some studies have shown one-third of the patient group experiencing partial or complete recovery after the oral steroid; a second third recovering after the three steroid injections, and the last third not recovering any of the hearing.
My otolaryngologist said other studies have shown spontaneous recovery, i.e., without any treatment in a third of the candidates; a third recovering with the oral steroid; the final third recovering with the injections.
In either scenario, timing is critical in that the sooner you start the treatment (following symptom emergence), the higher your chances of recovery. Another important recovery factor is the impact of co-morbidities such as hypertension and diabetes.
Based on the literature review, and considering my overall good health, diet, and lifestyle choices, I was statistically convinced about the prospect of a complete recovery.
Side Effects & Symptom Management
Meanwhile, with the treatment underway and the original symptoms still simmering in the background, new symptoms began to emerge.
Bloodshot, smoldering eyes characterized my look. Bursts of sharp pain shuddered through my right ear at random. My forehead felt weary and heavy. My memory seemed foggy at times and I’d be unable to recall words mid-sentence.
A normally active person, I struggled to find the motivation to stretch or step outdoors. When I did go out for a walk, I’d return home exhausted and spend the rest of the afternoon kneading achy, throbbing glute, thigh, and calf muscles. A routine, 3-mi walk in the neighborhood had somehow turned into a Kilimanjaro trekking expedition!
Snippy bouts of dread would seize me unawares, filling me with confusion and unease.
A mild rash broke out on my face, which triggered the prompt discarding of the moisturizer I’d been using. When the scaly, itchy red bumps erupted forcefully a few weeks later, I had to question whether it was a side effect of the steroids.
The beast, tinnitus, was a relentless, 24/7 phantom noise that only I could hear. It wasn’t always debilitating, and it didn’t always interrupt my work, but it was always there.
The volume of the tinnitus varied in pitch, rising and falling at random throughout the day. When low, it sounded like the distant howling of traffic on a busy freeway — audible and annoying but not disruptive. When high, the noise rocketed up several notches. It was as if I was driving on that busy freeway with the windows rolled down. It wasn’t just annoying, but downright draining.
The vilest emotional impact occurred in the middle of the night when the tinnitus exploded like a pressure cooker whistle. I’d jolt out of bed and waddle around the dark house for hours in a half sleepy-half hallucinating state, trying to assuage my nerves by alternating breathing, pacing the entryway, or laying down on the couch, conscious not to rouse the family.
The whole experience had me spooked! Popping a painkiller, getting a massage, or engaging in physical therapy exercises wasn’t going to make it go away.
This problem was literally “in my head!” I couldn’t control it, nor could I escape it!
Dribbling streams of frustration, fatigue, and anxiety began to converge into a river of stress. A friend provided a timely reminder to enhance my meditation practice and practice self-compassion.
Engrossed in the multitude of roles we play as women, we often forget that we are an integral part of the whole, and tending to the part with as much counsel and care as we do the whole is not a privilege, but a necessity.
I made my otolaryngologist aware of the new symptoms. He assured me they were not steroid side effects and would settle, and he further advised me to remain focused on completing the treatment. Reassured, I decided to follow through on his advice.
A few new developments flared into existence around this period.
The good ear (left) started to feel funny. It emitted a faint but constant percussive noise that resembled a muffled drum. I would hear my breath in my ear at times.
The volume on the television needed to be turned up. Family members started repeating themselves to me. I needed to lean into the laptop to hear my students while on Zoom. On the phone, the speaker or my left ear became my choice of audio.
Deep down, I knew what this meant.
Prognosis
Upon completing the injections, a third hearing test confirmed my suspicion. The hearing in my right ear had declined, falling from “mild” to “moderate!”
The only good news was the MRI was normal, thereby ruling out any tumors.
Later that morning, during the consult with the otolaryngologist, I informed him about the intensifying symptoms in my left ear. He was dismissive of it at first but proceeded to inspect the ear, adding that he couldn’t detect anything out of the ordinary. There was no reason to question his judgment; after all, he is an ear specialist. Added to that, the hearing in the left ear had been normal through the three tests.
But my concerns remained: Why do I have symptoms in my other ear when the condition is supposed to occur in a single ear only? And what does it mean? Eventual hearing loss in both ears?
For my right ear, he continued, it was the end of the road, medically speaking, and gave no explanations for the drop in hearing or the obstinate inflammation or the perpetuating symptoms.
He handed me a couple of flyers, one for a free tinnitus management class and another for the hearing center to explore the use of a hearing aid, and then asked me to schedule a hearing test six months out. It felt like a sympathetic but inadequate gesture. He wished me well, and just like that, he stepped out of the exam room.
What followed was a moment of silence so profound it seemed the bustling hospital complex fell into a trance. The lifeless ear anatomy charts on the sidewall, the monotone cabinets on the back wall, the sterile sink and lackluster mirror, the expressionless door, the stiff exam chair in which I was sitting, the entire exam room itself — everything froze over like the surface of a lake during a harsh winter.
“End of the road” meant no more treatment, no answers to my questions, no chance for recovery, and potential deafness in not one, but both ears!
Runaway thoughts hurtled through my mind. I don’t possess any of the risk factors. I rushed to ENT within days of the symptoms emerging. I suffered through the treatment without skipping a beat. My prognosis for recovery was excellent. What happened? Why didn’t the treatment work? How could the studies have been so wrong?
I sat there with my head lowered, staring at the floor, heart pounding and body trembling as wave upon wave of cold disappointment enveloped me. This was a problem whose solution was beyond my reach. I strive to be an informed patient, but it doesn’t make me a doctor.
I felt helpless.
I left the hospital that day acutely aware of the lingering deafness and unresolved inflammation in my right ear, and a growing apprehension about losing hearing in my left ear. I drove back home, my spirit adrift in a vast ocean of uncertainty.
What do I do now? Where do I go from here?
I’d be remiss if I didn’t give a big shoutout to my family for supporting me during this difficult time, and to friends who listened.
Reflection
A brief hiatus from the hospital visits allowed me an opportunity to reflect. The grim reality of pandemic year will forever reside in the rear-view mirror of my life, reinforcing essential over trivial.
Over the years, friends and family have endured various medical crises; especially difficult were those involving children. Just thinking about them and the way they managed/overcame their challenge brings me strength and fills me with hope.
On the professional side, this mini crisis has inspired a deeper appreciation for the work that I do as an instructor, especially that which relates to accommodating differently-abled students.
I’m grateful for my overall good health; it’s an enduring asset that has sustained my wellbeing through my 52 years.
Further, hearing loss is not life-threatening. A hearing aid would allow me to live a full life, like the many million hearing-impaired worldwide.
In regard to the inflammation, available to evaluate is a plethora of alternative medicine options, an out-of-pocket expense I’d be willing to bear.
Next Steps
Fast forward to March 2021…I started working with an alternative medicine practitioner who proposed an herbal treatment program and recommended dietary restrictions.
Specifically, the practitioner asked me to eliminate four foods that aggravate inflammation — cheese, yogurt, nuts, and tomatoes — from my diet for three months. Other foods to cut out included alcohol and meat.
Quit alcohol? Really? Just kidding!
My immediate reaction to the proposed dietary change was one of resistance, for two reasons.
First, any dietary adjustment is dead on arrival unless embraced by the entire family. A life-long Lacto-vegetarian, I have always strived to make proper food choices relating to organic nutrition and balanced, wholesome eating. I cook a lot as my family and I enjoy freshly made meals. Over the years, recipes have been tried, tested, and adapted to suit each family member’s tastes. Deconstructing and reimagining an already honed diet is challenging, to say the least.
Second, the above food items are integral to Italian, Mexican, and Indian cuisines, among others. Excluding them, albeit temporarily, would severely limit vegetarian take-out choices — my lone pandemic indulgence whenever I needed a break.
Transforming pushback to agreement took both candor and dialog. Intellectually, the role of the herbs and proposed diet in containing the blazing inner ear inflammation was worth pondering. Could they help accomplish what the steroids were unable to do?
The alternative medicine practitioner was a qualified, licensed professional whose judgment deserved trust and respect, no different from the otolaryngologist. Could I afford it?
On a more practical plane, the time, effort and energy investment merited attention. For a treatment program to be successful, sincerity and commitment are as important as the treatment itself; a half-hearted approach wouldn’t work.
Ergo, the best response was to listen to my body and give the suggested guidelines a try, in concert with negotiating an acceptable meal plan for the rest of the family.
Looking Ahead
Within two weeks the changes became apparent — a welcome breakthrough. The first thing to vanish was the nighttime tinnitus whistle. Yes, vanish! The volume of the daytime tinnitus reduced considerably.
My abdomen shrank a size, which was exciting. What I had brushed aside as lockdown weight gain was belly bloat?!
My eyes are brighter now, the migraines gentler. The network of cells in the facial skin is delicate but healing.
I continue to suffer from walking fatigue and dread attacks, but I’m learning how to preempt them, so they are milder and less frequent. The ears still feel full, and the hearing remains unchanged, but on the plus side, I’m sleeping more peacefully, literally and figuratively.
Will an anti-inflammatory diet and botanicals help calm the inflammation?
I’m afraid to acknowledge but the aura of dawn is beginning to permeate the dark sky.
Will I be able to recover my hearing loss?
I don’t know, but I have recovered my positive attitude and hope that I’m on the path to recovering my equilibrium!
