Cochlear is collecting information about the experience of cochlear implant recipients with the National Disability Insurance Scheme. Sharing your feedback is easy – simply go to the link below. Thank you for your consideration and please spread the word.
These are some of the challenges faced by every hearing impaired person. In my own experience, the majority of hearing people never think about the relatively simple things that can make life easier for all of us. This poster illustrates a few of them.
Pat. Mitchell - Bi-lateral cochlear implantee.
CICADA celebrated International Cochlear Implant Day on Sunday 24thFebruary (though the official date is 25thFebruary). It was a fantastic gathering of almost 200 people. Cochlear Ltd assisted with sponsorship for this event, cupcakes, a Coffee Cart and DARE the wonderful magician who roved around entertaining us with astounding tricks. RIDBC/SCIC staff came to the party with their valued help and CICADA would like to thank SCIC for the continued use of the premises at Gladesville, which are so well suited to holding these gatherings.
We had a number of other stalls to really add to our day and I am grateful to those who attended and shared their resources- MEDEL implant company, Deaf Society, Hear For You, Pauline Findlay with her book “Can You Feel It?” about a teenage girl with hearing loss, Andrew Stewart with his new business HEARING CONNECTIONS.
We began with some presentations in the Conference Room. Polly Templeton was there to do the live captions and Steve Pascoe generously offered his services to LIVE STREAM for us.
This was a FIRST for CICADA !! Steve captured the live presentation, which can be viewed on this link:
Our presentations were captured LIVE so there are a few typos in the captions that cannot be corrected.
Professor Cathy Birman spoke about the services of SCIC and Cochlear Ltd introduced us to a lovely young man, Kunal Amalean, from Sri Lanka, who has just celebrated 20 years with his implant. The surgery was performed by Prof Bill Gibson in Sri Lanka when Kunal was 9 years old. Kunal came to Sydney a couple of months ago to have bilateral surgery so he is still adjusting to the sound from his new implant.
Here at last is our 2018 revision of the "Hearing Loss and Hearing Solutions - A Guide" that we have published in PDF format for the enjoyment of users. Our original version was reviewed very favourably and attracted a lot of viewers. We now have this Guide in two formats: Desktop or Tablet version; iPhone/Android version.
You can view/download it from these links:
For desktop or tablet - Hearing Loss and Hearing Resources - A Guide (91 pages, 2.4 MB size).
For smartphones - iPhone or Android - Hearing Loss and Hearing Resources - smartphone version (101 pages, 1.6 MB size)
Here are some of the professional comments about our new 2018 version.
Overall Reactions to Second Edition:
Monica Bray (Cochlear): I’ve just discovered the wonderful Hearing Guide. It's an awesome resource.
Jade Parr (Advanced Bionics): What a great resource.
Roberta Marino (Fiona Stanley Hospital) with permission:
I really enjoyed reading the guide! It's brilliant. So comprehensive, easy to read and relatable. I'm really impressed with the level of detail and can only imagine the hours you've spent researching new updates. The guide will positively impact so many people including professionals. I can see it being so useful for instance, at our hospital when new medicos have a rotation in the Ear, Nose and Throat Department or when we have new Audiology students in our Department who are new to implant devices. Again - well done! It's fantastic there's people like you who are so pro-active and care enough to put in the hundreds of hours required to develop such a useful and thorough guide.
Overall Reactions to First Edition:
Margaret Anderson: It's going to be a great resource for consumers and all sorts of people. Well done for tackling it!
Marie-Louise Hekel: Congratulations on this most thorough publication. You have done a splendid job. It would be a very valuable resource, not only for hearing impaired people, but professional audiologists in particular.
Roberta Marino: I think you’ve done a brilliant job. You really have a great understanding of how the different devices can be applied. If you don’t mind, when the product is finished, I’d like to pass it on to training ENT’s at the major teaching hospitals here in Perth and also the upcoming Audiology students.
Sarah McCullough (Advanced Bionics): Well done on all your hard work
Linda Ballam-Davies (Cochlear): It looks great and you've done a top job.
This site is from Consumer Affairs in the USA. It compares the features of a range of hearing aids, some of which are not available in Australia. Users may find the reviews of the different brands helpful when deciding to choose what hearing aid to get.
These are some of the major brands currently offered in Australia. Oticon; Phonak; Unitron; Hansation; Starkey; Widex; Resound; Signia; Bernafon.
This is the link here: Consumer Affairs - USA
Nov 2017 Huffington Post
Tracy Murphy, Au.D., a member of the American Academy of Audiology Board of Directors
In September, I was contacted by a representative of the American Academy of Audiology, who wrote that the AAA “is working on educating the public of the many factors that can contribute to hearing loss and the seriousness of that loss.” The message recounted the story of Teresa Jennings, who was diagnosed with Lyme disease in 2011. “As if chronic fatigue and other Lyme symptoms were not enough, within a year and a half after her diagnosis, her hearing in both ears began to severely decline.” Her story continues:
“Jennings started treatment at a clinic in Washington, D.C. where she traveled from Illinois every three months for medical care. When her hearing first began to decline, she saw several audiologists for hearing aids but the cost was not affordable so she went to a large, national big-box discount store and purchased hearing aids.
“After wearing the hearing aids but struggling to hear sufficiently, Jennings finally decided to again see an audiologist in 2015 and she found one in Highland Park, Ill. She is the executive director of the Barrington Park District in Barrington, Ill., where she has been since 1992. Her hearing loss was having a serious impact on her work and her confidence. She was also starting to experience depression. The Highland Park audiologist was willing to work with Jennings on a payment plan. Because her Lyme medical expenses were so high and she’d met her deductible, her insurance covered some of the cost. With this financial assistance and flexibility, Jennings purchased hearing aids and suddenly realised the tremendous difference—she could actually hear! She took out a loan to pay off the balance.”
Tracy Murphy, AuD, is an Illinois-based clinical audiologist who works with North Shore Audio-Vestibular Lab and a member of the American Academy of Audiology Board of Directors. Murphy is the audiologist who treated Jennings.
Murphy referred Jennings to an ear, nose and throat (ENT) specialist, who ordered an MRI to rule out a brain tumour or other brain-based cause of hearing loss. “Since the hearing loss was so rapid, which is unusual, we just wanted to rule out other causes,” Murphy explained in an email. “The MRI was negative and it was determined that Jennings had neurological Lyme. Many Lyme patients lose their hearing from the disease,” Murphy said. “Teresa’s hearing loss was severe to profound.”
I spoke with Murphy by phone in September to discuss her knowledge of Lyme-related hearing loss. “There’s a huge connection,” Murphy said. “And one thing we say in our practice is, ‘if we’ve seen one patient with Lyme disease, then we’ve seen one patient with Lyme disease.’ There is no template to the disease. Especially if it goes untreated for a long period of time, there’s no way to know how it’s going to affect somebody,” Murphy said.
I explained my personal experience, beginning with moderate fluctuating hearing loss in my left ear shortly after I was treated for Lyme disease at age 19, and its progression to profound, total loss of hearing, often accompanied by loud tinnitus and ultimately by vertigo attacks and a diagnosis of Meniere’s disease.
“Some research shows or suggests an association between susceptibility for autoimmune issues in reaction to Lyme disease. I don’t know how hard and fast that stands, but it is something that’s talked about. So there’s that question. As far as hearing loss, it could be anything. It could be asymmetric—in your case, it was on one ear, it was unilateral. It can fluctuate. Vertigo can certainly be a symptom. It can affect every system in your body, not just hearing loss. It’s really a frightening disease from a global standpoint in terms of what it can do to your body. And the deer population growing, I think it’s becoming much more prevalent. Did you have that bull’s eye target, that red rash, when you were diagnosed with Lyme disease?”
“I did,” I told her. “I’m 39 years old now. When I was first diagnosed, I was 19. I don’t actually have much of a memory about it, but my mother tells me that I had ‘a really bad flu.’ She took me to the doctor, and the doctor called her into the exam room and said, ‘I want you to look at this rash on his back. That’s Lyme disease.’ So that stuck out in her mind because she thought it sounded so exotic. So I was kind of quote-unquote fortunate in that I did have a rash and so the first diagnosis was easy and definite.”
Since I was diagnosed with Meniere’s disease—a progressive, irreversible hearing disorder—and then recovered my hearing and experienced no further vertigo episodes following antibiotic treatment for Lyme disease, I wondered whether audiologist pay attention to non-hearing-related symptoms that co-occur among their patients.
“Yeah,” she said emphatically. “An audiologist has a huge responsibility to draw that information out. Part of how we approach hearing loss is as a symptom of something else going on. My personal opinion is that people are too often diagnosed with something like Meniere’s disease or Meniere’s syndrome when that really probably isn’t the case, but I think it’s easy for physicians to want to find an answer and lump patients into a category so they can treat them. There’s a responsibility on the patient no matter what specialist they’re seeing to be an advocate for themselves and report the symptoms they’re having, but every healthcare professional including an audiologist has a huge responsibility to take a very thorough case history and put those pieces together. Because when you’ve got flu, malaise, headache, fever—you may not have the rash—audiologists are aware of Lyme disease and have a responsibility to refer elsewhere, especially with the hearing loss. And not just with Lyme disease. With any pathology that is found.”
What about, I asked her, a patient like me who had a wide array of other health problems? I have always been anxious filling out medical intake forms because I know through experience that many doctors react to seeing so many unrelated boxes checked—neurological problems, anxiety and depression, rashes, allergies, etc.—by assuming that their patient is a hypochondriac. I’ve been asked by more than one doctor, for example, why I wrote down neurological symptoms on my intake form when I was not at a neurologist’s office. “Because,” I told these doctors, “your forms specifically ask for this information and I don’t like to lie.” I’ve also been asked by a neurologist why I mentioned joint pain and rashes, when that’s not his specialty. Same answer. “Because you told me to tell you all of the life-affecting symptoms I have had in the past few years, and those have affected my life. If you only want the neurological ones, that’s fine, but you didn’t specify that and I thought the others might be relevant.”
So I asked Murphy: When you see tons of boxes checked on an intake form, do you sometimes see this as a “trouble” patient or a potential hypochondriac? “Hmm,” she said. “That’s a really good question.” I was a little afraid of what might follow, but it sounded like it was going to be forthright. “I guess,” she said, in 24 years of practice, I’ve never witnessed a patient that I believed was a hypochondriac. Your symptoms are your reality, and part of my job as an audiologist when you come to me and you have this list of symptoms is to figure out why you’re feeling the way you are and to get you to the people who can help figure it out. In the case of Lyme disease, what I find unfortunate is that there’s a blood test that can help diagnose it. And I’m not a treating physician, I’m not an MD, but I would think that for a physician lab work would be the first thing to do.* I think Lyme is often overlooked or easily dismissed. And your story is a perfect example. You need to be your own advocate. I’m sure you have your medical history documented pretty thoroughly in terms of when symptoms started and all of that. Nobody can argue with the fluctuating hearing loss. Nobody can argue with all of these neurologic symptoms, and these are the patients I love to work with because I want to help find an answer to what’s going on. So you can be persistent, and if any provider doesn’t seem to be hearing what you’re saying, then you need to see a different provider. Since Murphy mentioned blood tests, I asked whether she was aware of the two-tiered Lyme disease blood tests’ notorious shortcomings. Varying studies have shown the sensitivity of the two-tiered testing process recommended by the CDC to be between 18% and 67% sensitive—meaning that many patients who live with Lyme disease will receive false negative test results. Virginia and Maryland, states profoundly affected by Lyme disease, have passed laws requiring physicians to inform patients about the insensitivity of the blood tests as a result of advocacy by the National Capital Area Lyme Disease Association, or NatCapLyme.
“That I did not know,” Murphy said. “In my job, I would refer you to have a physician order it.”
I asked Murphy how commonly she sees Lyme disease patients in Illinois. “I don’t see it that often in practice,” she said. “We don’t see it as extensively as in some other parts of the U.S. But we have a handful of patients that we’ve treated.” I had recently met someone who lives in a part of the country where Lyme disease is not thought to be common, and she was told by multiple doctors that she can’t have Lyme disease because, the doctors said, “we don’t have it here.” She thought she may have acquired it during travel. “Oh,” Murphy said. “It’s everywhere.”
Just a few days ago, on November 19, the CDC issued a report cautioning healthcare professionals and the public that despite CDC surveillance maps that suggest Lyme disease primarily affects the United States east coast and Great Lakes region, “clinical suspicion of Lyme disease in a patient should be based on local experience rather than incidence cutoffs used for surveillance purposes,” because Lyme disease has begun to “emerge in neighbouring states.” In other worse, Lyme disease may be contracted even in areas where it is thought to be uncommon. The Bay Area Lyme Foundation has discussed how the CDC’s problematic geography-dependent case definition makes life difficult for Lyme disease patients and the doctors who treat them in states such as California. Author Amy Tan (The Joy Luck Club) has been outspoken about her experiences with Lyme disease, including that “the doctor said it was impossible for me to get Lyme in California.”
Since my hearing loss came and went for years before becoming generally poor with fluctuating-volume tinnitus, I wondered whether hearing loss can be related to seasonal allergies in any way, or whether it might come and go with seasons for any other reason. “That’s a hard question to answer,” Murphy said. “I’ll answer it the best I can. There are people who have hearing loss that fluctuates, but they don’t have their hearing tested seasonally to see if it fluctuates seasonally or not. So if someone says that they have fluctuating hearing loss, I want to see it documented that it’s fluctuating. So that’s a tough one. There are things seasonally that can affect one’s perception of one’s hearing, such as allergies that causes a clogged sense of hearing. That’s usually a qualitative change in hearing and not necessarily a quantitative change in hearing, which is again why I want to see the test results.”
“But,” Murphy said, “there’s a large group of people who can have fluctuating hearing loss. And whether it fluctuates on a seasonal basis or a monthly basis, my suspicion when I hear that—and you might find this interesting—is that it typically comes from some sort of an autoimmune process. And I find that link between autoimmune susceptibility and hearing loss interesting as well. And the link between autoimmune and Lyme disease, hearing loss associated with Lyme disease can fluctuate. It can also fluctuate with Meniere’s disease, and so I can see why they wanted to put you into that category. But that’s why that thorough history going back as far as you can can be critical. I don’t often see hearing loss where it’s a sensory neuro-hearing loss seasonally with someone unless it’s someone who has documented fluctuating hearing loss that changes with barometric pressure. But that would fluctuate anytime there was a change in barometric pressure and not just spring.”
I told Murphy that her suggestion of an autoimmune connection was particularly interesting. I was diagnosed with mast cell activation syndrome/disorder (MCAS/MCAD), which can be associated with Lyme disease. Treatment with a combination of H1 and H2 antihistamines has had a profound positive net effect on many of my symptoms. Doctors such as Elena Frid, a neurologist and neurophysiologist who treats Lyme patients, believe that autoimmune illness often is a major component of Lyme disease. Autoimmune disease as a component of hearing loss “is being introduced” to the audiology field “in terms of what research is being done,” Murphy said. “Audiologists are diagnosticians for the most part, and we work on the rehabilitation of patients. But in terms of medical treatments and studies involved in what can help or hinder improvement—we might be involved in the testing to see if it’s improved. I can’t answer how much is going on in terms of Lyme disease specifically. We were just at a regional conference in Chicago and one of the ENTs that I work with presented some case studies and specifically highlighted Lyme disease and its effects on hearing. And we are making audiologists aware of that as an issue, and it does have to be ongoing and pervasive.”
Murphy wasn’t aware of much of the controversy surrounding Lyme disease, which in many cases lead doctors to dismiss patients who have been treated for Lyme disease and then never recover. These patients are determined to have “post-treatment Lyme disease syndrome,” which according to the CDC occurs after the infection has been eradicated for unknown reasons. Among recommendations for patients, the CDC recommends that patients “talk with a counsellor who can help you find ways of managing your life during this difficult time.” As a result of this sort of language, many healthcare providers infer that these patients may be hypochondriacs, may be attention seeking, or may be mentally ill and in need of psychiatric interventions. Lyme disease specialists, on the other hand, cite hundreds of studies documenting Lyme disease-causing bacteria that persist in laboratory settings following antibiotic treatment, and believe that many patients require longer-term and different antibiotics to fully cure their infections, and call for increased federal research into the nature of Lyme disease and how to treat it.
Murphy said that Lyme patients who are not physically ill “hasn’t been my experience…but that underscores my comments at the beginning of this conversation. If you’ve treated one patient with Lyme, you’ve treated one patient with Lyme. It is not a cookie-cutter disease in terms of symptoms, in terms of how it affects one’s life, in terms of how pervasive the sequalae of that disease will be for an individual. Ideally, you’re going to take your antibiotics and it’s going to go away before that later-stage diagnosis when it’s going to have those neurologic symptoms, cardiac symptoms, pain and all of that. But you can’t cookie-cut any diagnosis because one thing I’ve learned is no two patients are the same, including how they respond to treatment. I can take that down to a hearing loss level. Someone who has age-related hearing loss is going to respond very differently.”
In my case, I was diagnosed with Meniere’s disease and told by an ear, nose and throat specialist that my hearing loss was progressive, potentially to the point of total deafness, and likely irreversible. The hearing in my left ear has been almost totally restored following antibiotic treatment for Lyme, and I haven’t had a single vertigo attack since then. Hearing loss was among the least severe and therefore among the least of my health-related concerns when I was being ravaged by Lyme disease symptoms.
Murphy underscored the importance of not neglecting auditory health, however. “There are correlations,” she said,” between hearing loss and early onset dementia.”
Whether or not you have any tickborne illness, if you have significant hearing loss or balance control problems, visit the American Academy of Audiology website at audiology.org and click “find an audiologist.”
Nov 2017 Huffington Post
David Michael Conner, Contributor
Going all the way back to my early 20s, this has been an unlikely catch phrase of mine. In my early 20s, my boss would summon me into his office to tell me something. More than once—hell, more than several hundred times—I would have to make a split-second decision: Nod as if I knew what he had said, determining it to have been of little importance, or confess that I didn’t hear him. When you’re that young, people don’t believe you could be hearing impaired. Even I had a hard time believing it.
By my mid-20s, I was accustomed enough to my body’s strange short circuits that I didn’t try to hide them. I knew as spring approached every year that my hearing would fluctuate from perfectly fine to sounding as if I were listening through drywall. It came and went. I explained to myself that in my clubkid days I danced too closely to the club speakers and damaged my hearing, and that somehow spring allergies temporarily exacerbated my problem.
My grandmother had profound age-related hearing loss by her 70s, and our conversations were punctuated by many exchanges of “Huh?” and some laughing. All of us knew she couldn’t hear well. I would tell her that I couldn’t, either, and she would chuckle and, I’m certain, assume that the kid was trying to make her feel better about her condition. Nope. I couldn’t hear. And I learned from her. I would watch her at holiday dinners as she directed her attention to whomever was speaking, stealing quick glances at others for cues. If everyone laughed, she laughed. If everyone grimaced, she did, too, and would glance around with concern but wouldn’t always ask what was wrong. I felt terrible for her, but I quickly ended up in her predicament and recall especially during writing workshops in graduate school nodding and laughing as people said things I never heard.
Ah well, c’est la vie. Life goes on.
By my early 30s, I was nearly and sometimes fully deaf in my left ear, now accompanied by a mild high-pitched squelch or a maddening squeal heard at all hours of all days. At the time, I lived in Washington, D.C., a block away from a police station and a different block away from a fire station. Rarely did 10 minutes pass without sirens wailing past my window on Florida Avenue. One night I awoke with absolute terror when a siren suddenly came out of nowhere at full volume. I had been sleeping on my right side, with my ear to the pillow, and between the hearing loss and the deafening tinnitus in my left ear, I didn’t hear the siren approach until I turned over and suddenly heard it at full volume.
By then, hearing loss, as profound as it was, wasn’t my greatest problem. My body was short circuiting and shutting down in ways I never imagined were possible. Electrical shocks in my feet and lower legs. Killer pains in my elbows, my shoulders, my knees, my neck, that would jump from one place to another, sometimes staying for a few days, sometimes setting up residence for months. My vision would unhinge and produce double-exposure images. I was a mess, an absolute mess. Doctors thought I might have multiple sclerosis, and then after a couple years of arduous and expensive laboratory tests, one neurologist concluded I was either stressed or crazy, and another concluded that “something is definitely wrong” with me, but that his tests couldn’t define whatever that was. Both dismissed me.
Eventually, a new, disturbing symptom came for an unexpected visit. As I lay on my bed drinking coffee and reading through emails just before leaving for work, I suddenly felt a wave of heat move through my body, followed by a series of strange waves of disorientation. It’s difficult to describe exactly, but it’s like the feeling of falling suddenly inside a vehicle, like a sudden dip in the road or a decline in a roller coaster. The falling feeling isn’t an entirely bad one; it’s fun, in a way, as long as it goes as quickly as it comes on. Usually when this happened it did. This morning, though, something else happened.
The room began to spin around me. I had heard this expression before, but I never imagined that the expression was meant to be understood literally. The room literally looked as if it were beginning to spin around me, and I felt, literally, as if I had suddenly fallen through a trap door. Within minutes, my body felt as if it were in a no-gravity environment—and yet there was gravity. I could orient myself, just barely, by sight, but in a moment the sight of the spinning room caused an eruption of vomit. I clumsily fell off my bed and crawled on my hands and knees into the bathroom to continue vomiting—for how long, I had no idea. My body became so hot that I crawled into the bathtub with my clothes on and turned the shower on. Cold water soaked into my clothes and made them heavy. I sat with my face in my palms, falling, falling, falling as a full-volume constant whine buzzed in my ear. This is it, I thought. They’re going to find me in the bathtub, clothed and soaked, and not know what happened. What is it? Is this a stroke? The falling feeling was also a numb feeling. It lasted for so long that I had plenty of time to wonder what, exactly, this process was. Is this what a blood clot in the brain feels like? Is this what a seizure feels like? I wasn’t flopping around. Is it none of those things, just the feeling of leaving one’s body? Eventually, after an amount of time unknown to me—hours, I figured—it passed, and I was left with a tingling, “sparkling” sort of feeling. I was able to open my eyes, and found that I was able to see. The bathroom looked normal. I was still nauseated and felt weirdly empty. I left my wet clothes in the bathtub and stumbled back to my bed. I sent a short email to my office telling colleagues something had happened and I wouldn’t be able to come in, and then I passed out for hours. When I woke up, I felt normal, including the by-then “normal” buzzing and whining in my left ear.
I had no idea what happened to me. Because so many aberrant things had happened by then, including my left leg having fallen paralysed while walking down a broken “stairway to heaven” length escalator at the Dupont Circle Metro station, that I didn’t know what to do and so I chose to do nothing. I told people about it, and I got over it. Until I had brunch one day with an old friend whom I hadn’t seen for years. I tasted the hot eggs and hashbrowns that had just arrived, and as soon as I swallowed, my body was overcome by heat. Within seconds, I knew what was coming, and I told my friend I needed her to walk me to the bathroom. She didn’t understand what was happening. By the time I explained, I couldn’t walk without help—I was walking without the benefit of being able to tell up from down—and she steadied me as we proceeded to the bathroom. I threw up as soon as I got there. I threw up a lot, and assumed eventually that I had no more contents in my stomach, and so I stumbled back to the door and told her I needed to go home. It was two blocks away, but she had parked more closely than that and offered to drive me. I threw up outside of her Jeep, and then several times inside of it. I threw up outside of my building, and then inside my apartment as soon as she dropped me off.
I figured out, thanks to the Internet, that this was classic vertigo.
I knew about vertigo. I had had motion sickness many times in my life and knew the feeling. I used to have a fear of heights and I knew the dizzying feeling that comes from ill-advisedly looking down. I didn’t know that vertigo episodes could come on spontaneously, or that they can be accompanied with other symptoms.
I should have known, but never really had thought about it, that the cause of vertigo relates to a physical disorder of the inner ear. In my case, I was about to find out, hearing loss and these nauseating dizzy spells were inextricably related.
I had seen over a dozen doctors in the preceding few years, all to no effect. I had had three rounds of MRIs in that time, EEGs, ECGs, EMGs, NCVs, evoked potentials, blood work for everything from HIV to syphilis to testosterone to anti-nuclear antibodies and just about everything else over that time—all to no effect. I had seen several general practitioners, three neurologists, one neuro-ophthalmologist, a rheumatologist, an allergist, a couple of ophthalmologists, and others I probably don’t recall. None had done anything to help me except a psychiatrist, who after several years effectively quieted some of my more mild symptoms with pharmaceutical drugs and far more importantly told me that I am physically ill, not imagining these symptoms as one doctor suggested outright and a few others implied, and gave me behavioural tools to cope with these problems.
So what should I do? One of the initial suspicions of my first doctor was that I may have an acoustic neuroma, a small tumour inside the ear canal, but the MRIs had ruled that out. What were the chances going to an ear, nose and throat specialist would be anything but a waste of time and money? I was a freak of nature: some of my medical labs showed physical problems, but none of them added up to anything doctors understood. What would an ENT specialist do? Look in my ear? Perform a hearing test?
The second question was enough to get me to an ENT specialist—curiosity more than anything drove me, as I had always wondered about the significance of my hearing loss. By now, all my experience with doctors had taught me to expect no real diagnosis—but at least I could find out how extreme my hearing loss was according to science. I hadn’t held a phone to my left ear for a decade because there just wasn’t any point. It was time to find out what the damage was.
As I filled out the paperwork in the ENT specialist’s reception room, I felt familiar pangs of awkwardness but willfulness as I checked off half the boxes of prior and concurrent symptoms. I wondered if this doctor would look at those pages, which I knew from experience many physicians would glance at and immediately classify me in their minds as some sort of hypochondriac, or else someone on death’s door. I was given an audiology test. Faint beeps in one ear and then the other. You push the button when you hear the beep. I heard few in my left ear, in small part because some of the beeps were set to about the same frequency as the tinnitus. I was nervous. How many was I missing? How many times had I imagined I heard a beep and clicked the button to the phantom? I hadn’t been given this test since I was in school.
I was taken to a consultation room to wait. As I waited, my phone buzzed and then buzzed again and again and again. Work emails—but also several emails from my mother in rapid succession.
Subject: You had Lyme disease
Subject: David get tested for Lyme disease
My mother had been telling me this for years. “Lyme can come back, David!” she would say. No, it can’t, I would think. I had read this countless times. It’s a bacterial infection. I had been diagnosed with Lyme disease when I was young. I barely had any memory of it—but my mother remembered it well. It clearly traumatised her, because she brought it up all the time. She had taken me to the doctor and I was evidently so ill I can’t remember much about it. My mother says I was “out of it,” and that I had a bad flu-type illness and joint pain. The doctor showed her a big red rash on my back and said “it’s Lyme.”
All this was running through my head when the doctor came in. I put my phone away.
The doctor had a manila folder with him, as doctors do. He introduced himself, asked what was going on. I told him about the longtime hearing loss, about the tinnitus, about the vertigo. I told him based on what I had read online that it’s probably benign positional vertigo because, basically, there’s no explanation for that and my whole body is defective with no explanation. He listened and then he took out a paper. “You’ve definitely been having vertigo attacks. That is true. But take a look at this.” He showed me a graph with little black dots moving across; they started high, dipped low, and then swung back up. “I’m afraid it’s not the best news. You have a distinctive pattern of hearing loss that is characteristic of Meniere’s disease.” I had read about Meniere’s disease, and it sounded like what was happening to me, but I had dismissed it because every other doctor I had seen for every other problem had not been able to diagnose anything with a name. “It’s a disease based in the inner ear. It can lead to permanent hearing loss, and in some cases permanent imbalance.”
He explained the disease, the common and rare manifestations, and he told me that I would continue to experience vertigo attacks now and again—it’s part and parcel with Meniere’s. But, he said, it’s not hopeless. He explained that the disease occurs because fluid gets trapped inside the ear canal due to a physical deformity and water retention. He put me on a low salt, preferably no salt, diet, and he gave me a diuretic. He said that it may or may not help, but if it does, my hearing and the tinnitus should improve before too long. He apologised for having to deliver bad news.
Characteristic hearing loss pattern (blue) of late-stage Meniere’s disease.
I was elated. As crazy as that sounds, I was elated because this was happening to me anyway, with or without a name—but being given a name, and having seen a graph documenting a specific pattern of hearing loss caused by a known disease process…after all these years and all these doctors…well, this doctor would have no way to know it, but when he said I have this disease, he gave me more confidence in my sanity. It takes a toll when a person’s body is failing and medical practitioners tell that person that it’s all in his or her head. One doctor told me that. It also takes a toll when a person’s body is failing and a dozen doctors tells that person yes, something seems to be wrong, very wrong, but…*shrug* Good luck!
As I walked back to my office, diuretic prescription in my pocket, I read my mother’s emails. The first one told me that I had been diagnosed with Lyme back in 1997. I knew the first part, but I didn’t know exactly when. She had gone through her filing cabinet and found a photocopy of the prescription that my doctor had given me at the time. That was the second message—a scan of the prescription. Doxycycline, the standard treatment for new Lyme disease infections. 100 milligrams twice a day for 10 days. I had read enough about Lyme at my mother’s urging by then to know that there was controversy about treating Lyme disease, and that the standard treatment is 200 milligrams of doxycycline for 14 to 28 days. As I walked, my mind reeled…every doctor who had ever given me an antibiotic had told me to make sure I take every single pill because not finishing treatment could cause the bacteria to regrow. Was it possible that the dose I was prescribed had been too short a course to fully eradicate the Lyme disease bacteria from my system? My heart raced—I had a diagnosis and an explanation for my vertigo and hearing loss, and I had a lead for making one more attempt to find out what the hell was going wrong with my body.
This was the day that changed the course of my life. I took the diuretic and cut back on salt for three months. I had a vertigo attack during the second month. My hearing and tinnitus continued unchanged. I also found a specialist who treats Lyme disease patients. After beginning a combination of oral antibiotics, all of my symptoms became a bit worse—before they became much better. Since I began taking antibiotics almost three years ago, I haven’t had a single bout of vertigo. Around the fifth month on antibiotics, I experienced sudden relief from many of my symptoms—especially the nerve and joint pain that had nearly crippled me for years, and including the hearing in my left ear. I still have mild tinnitus that comes and goes, but my hearing has restored almost fully. I haven’t taken an antibiotic in about six months, and so far, so good.
It wasn’t exactly my idea to tell this story about my hearing loss. In September, I received an email on behalf of an audiologist, recounting the story of a patient who experienced “extreme hearing loss from Lyme disease.” I spoke with this audiologist, and in the next instalment, I’ll share what she knows about the connection between Lyme and hearing loss.