noisy silence

A belated Christmas present arrived at the tail end of 2021. I went to bed with normal hearing and woke up with a blocked feeling and no hearing in my left ear. I thought that the tinny mono experience that remained in my right ear was a testament to a misspent garage band youth spent standing next to a drum kit while perfecting covers of Pearl Jam, Smashing Pumpkins, Rage Against the Machine, Radiohead and the Stone Roses. Long summer days spent playing music with friends interspersed with soccer and the benevolent hospitality of our singer’s angelic mother. Through subsequent hearing tests, I found that I had normal hearing on the right and profound hearing loss on the left with all but the highest of frequencies at extremely loud volumes gone. The initial poor hearing on the right was either due to the loss of the summation effect or both my ears being affected differently by whatever caused my hearing loss.

I’m now in headphones discovering stripped-back versions of my various playlists that transport through time and space while reading about likely outcomes following sudden sensorineural hearing loss. Something sinister has attacked my inner ear or the nerves serving it. Apart from a vague array of noise incorporating some high-pitched tones, the only sounds that get through my beleaguered left ear are crackles, remnants of the loudest and highest-pitched squeals, laughs and songs that come from my children. You could call the constant hum or cacophony ‘tinnitus’, but I’d prefer not to put a name on it yet. Acknowledging it might only make it grow and become more perceptible.

I go for a wet winter walk with headphones to survey the damage. It shows that there are big chunks of songs missing. Long familiar songs are changed utterly when you are forced into listening to only one side of a stereo audio experience. The intro to the Beatles Here Comes the Sun is missing. I get the faintest tingle of what I know is there before the dropping notes and organ chords that join John Lennon’s opening line. Poor George Harrison has disappeared altogether. In a few days, I’ll figure out that Apple have amazing accessibility settings on the iPhone and I can push all the sound to one side with their mono setting. 

This is about more than music. This is a traumatic, isolating situation that changes every aspect of your daily life and relationships. You’ve lost a significant amount of your hearing and it is replaced by severe tinnitus and extreme sensitivity to sound (hyperacusis). In the depths of all the initial introspection, the dominant feeling is one of relief that I can hear something. The acute total loss of hearing is hard to fathom and I am grateful that I still know the sound of a whisper, provided that the whisperer is on my right. The support of family and friends that grasp the impact of substantial hearing loss and the ability to place yourself in the soundscape of everyday life also makes the process easier. There is the odd person who tries to help, but makes a bad job of it- “sure you can hear in your other ear” or “my uncle had that and he’s grand” or “sure we’re all a bit deaf- you’ll get used to it”. 

The health system gets moving when something as important as your hearing is acutely at risk. I knew something was seriously wrong on day one. As it was a public holiday I went straight to my health insurance out-of-hours service. Unfortunately, I was initially treated with antibiotics for a suspected middle ear infection. As the days went by, I knew that I was making no progress and needed expert help. This is the most crucial part of this story. I didn’t know then that sudden hearing loss was an emergency that required review by an ENT specialist within 24 hours. If I had better awareness of this, I could have advocated for the care I needed and possibly avoided this whole story. This is something that audiologists and ENT specialists are exasperated with. Better public and health professional awareness are badly needed to save people from potentially avoidable harm and life-long disability. 

I came to this problem from a position of privilege. I’m a health professional. My friends are health professionals. I could access help and advice. I could advocate for myself. Health systems need to be navigable for all including those with layer upon layer of deprivation decreasing their chances of getting the care they need. My experience involved getting through the gauntlet of the emergency department on a COVID-speckled New Year’s Eve to meet an Ear Nose & Throat specialist registrar and consultant in an abandoned outpatient department on New Year’s Day. They knew that sudden new hearing loss should be assessed urgently. A delay might be the difference between being able to return to work as normal or to a new role, yet to be defined, that gets around the inability to tease apart multiple strands of audio input when you can only hear some of it. The audio equivalent of the loss of depth perception when someone loses an eye. They got the implications of a profound loss of hearing on everyday family life, on the music lover, and on a job that necessitates picking up important details and assimilating information from multiple sources in a busy setting. Unfortunately, everyday life won’t always provide what my family can in terms of supportive soundscapes. There’s a definite reluctance to go out into the world and find out what I can and cannot hear and what limitations this will place on me personally, socially, professionally and academically. I’m prescribed a hefty course of steroids with the hope of turning the hearing loss around. 

My chances of winning this particular lottery were somewhere between 10 and 80 per 100,000 people per year, most commonly affecting those between 43-53 years old. I got in there a couple of years early. Recent estimates from European studies peg the number at about 20 cases per 100,000 per year. The doctor outlines the rule of thirds- one-third recover fully, one-third partially and the remainder have permanent loss. The prognosis depends principally on the extent of the initial hearing loss. Not good. I hope that I’m among the majority who have no explanation for their hearing loss and not among the minority whose auditory system is attacked, squeezed or starved of oxygen by cancer, their immune system or a variety of unsavoury chronic diseases including multiple sclerosis.

This is all happening at the peak of the worst wave of the COVID pandemic to date. Trying to get an MRI is up there with getting Glastonbury tickets. After Christmas and the new year the health system is walloped by COVID-related absences and increased demand. I’m likely among the majority who will have a normal MRI that gives no further information as the entity attacking my hearing is invisible. I would however like to know if I am among the minority where an MRI shows a tumour, benign or otherwise, blockages that are starving my inner ear or auditory nerve of blood flow or multiple sclerosis. Hopefully, this dance of arranging an MRI on an appropriate timescale ends soon. Thankfully, everything about the pace and quality of my hearing loss says that I am among the lucky majority for now. 

Who knows what the future holds? Generally, the majority can look forward to some degree of recovery. For my little slice of sensory deprivation, however, the lack of response to initial treatment and the fact that I have no hearing in the affected ear does not bode well for recovery. I’m fortunate that my vestibular system does not seem to be affected. This would lead to severe balance issues and nausea/vomiting. 

There is some hope that some signals still get through- there is a light that never goes out. I have a sense that I need to protect this pathway and keep it stimulated, even though very little signal gets through. The initial course of high-dose steroids is starting to taper down now with minimal response. I might get directly injected steroids that could help or some guidelines recommend a course of hyperbaric oxygen treatment. Usually reserved for the management of the bends in Divers and for complicated wounds in diabetic patients, a course of at least 20 sessions improved outcomes in a variety of clinical trials. I’m dubious, but Sheridan Le Fanu captured it best in Carmilla “But into what quackeries will not people rush for a last chance, where all accustomed means have failed, and the life of a beloved object is at stake?” My wife delivers the best treatment so far. A well-timed whisper “It’s going to be OK. Noli timere”.

I wear a path between West Clare and the University Hospital in Galway for a series of appointments to do baseline tests and monitor response to treatment. I’m started on oral steroids in the evening time on New Year’s Eve, so I’m awake late. On New Year’s Day, my dose is increased to a whopping 80mg of prednisolone. I chew them down with late lunch while listening to a documentary about the Sawdoctors on my way home. I have the sense to take my doses earlier in the day and try and walk/run off the steroid energy and avoid too much sugar in my diet. I get my wife to read the patient information leaflet and she will be on the lookout for mood changes that can be associated with high-dose steroids. 

At the next outpatient appointment a few days later, I ask the doctor about hyperbaric oxygen treatment. I don’t perceive any major impact of the oral steroids, although I can hear some sounds – from the noise of water in the shower to the sound of the cars on the rainy Galway streets. Treatment guidelines support hyperbaric oxygen treatment as a reasonable option. I get the first of a course of intratympanic steroid injections- a fine needle delivering a dose of steroids through the ear drum into the middle ear. It is not as bad as I expected, with the ear drum numbed in advance with local anaesthetic. I go home with a bandaged ear and the kids dress me up as Vincent Van Gough.

The doctor agrees that hyperbaric oxygen treatment is worth exploring and goes to see if the consultant is on board. There is an emotional moment of profound relief and appreciation when the ENT consultant says that I am a candidate for treatment in the hospital’s Hyperbaric Oxygen (Barometric Medicine) Unit. She thinks it is worth a try- it’s what she would want herself and she goes across the hospital to this hyper-specialised centre to see if the treatment is feasible. By chance, I have presented to the only acute hospital in the country with a Barometric Medicine Unit- a side effect of Galway’s maritime history and the adrenaline-seeking lifestyles of the scuba diving anaesthetists and other health professionals who often run these units. There is an instant yes from the director of the unit, a consultant anaesthetist and intensivist, provided that I am COVID-negative and that a roster of volunteers can be mustered to cover daily sessions through the weekend.

The drive home through sleet showers and past motorway hail storm crashes is tinged with positivity- there may be no benefit, but there would be significant regret if my hearing never returns and I don’t try.