Castle with bro

Castle with bro

I was determined to ride my bike on this trip to Japan because my brother had put so much effort into planning it. And I wanted the adventure with him! My brother was a gem and rearranged our schedule so that for the first few days we didn’t ride (so I could continue regaining balance by walking walking walking). Then he scheduled one short ride south to Naha, the capital of Okinawa, where we were going to base ourselves again for a few days. He also carried all of my gear on his bike, leaving me with just my bike and myself to handle.

Making the most of the ER

Making the most of the ER

We broke our ride up with visits to the oldest house on Okinawa and castle ruins! Still, I managed to eat pavement from over the handle bars on a busy road after just four miles on the bike. My brother was across the street when it happened, and later he gave a fairly entertaining recount of the incident which involved me sliding on my face with my feet in the air. After taking the spill, stubbornness and adrenaline got me back on the bike for about a mile until I just couldn’t bear weight on my left wrist any longer. I finally accepted that we would spend the rest of our trip off of the bikes. I flagged a taxi, broke down my bike, put it in the trunk, drove to our hotel, ran hot water over my stinging abrasions, and waited for my brother to arrive on his bike. The next day – Christmas! – we got Xrays of my wrist (no break – yey!), and officially launched our eating-taxi tour of Okinawa.

Eating our way across Okinawa

Eating our way across Okinawa

The scrapes and bruises, particularly on my face and hands, were startling to look at. Compared to the vertigo, however, they were manageable. And honestly, I wasn’t opposed to some attention after feeling so isolated, frustrated, and even ashamed about the vertigo. Physical injuries speak for themselves in a way that hearing loss and vertigo just don’t. It has been 10 days since the bike spill, and my face, shoulder, and hands are healed up, my wrist (and thumb it turns out) are on the mend, and I’ve probably got another week until my leg is fully healed. On January 1st I strapped some new running shoes to my feet and went for my first run in ages. It felt amazing! Slowly by slowly the balance returns. I hope I’m always able to stay active.

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The experience of vertigo is a physical-mental-emotional triathlon that you didn’t train for, but have to be perseverant enough to finish. The experience is physical because every turn and tip of the head sets the world in motion. Mental, because (a) that’s how you feel, and (b) because you have to talk yourself through every mundane activity. “OK, Dana, you are going to shower now. Hold on to the wall, reach for the shampoo. OK – good. Now you are going to pivot and lean against the wall, then stabilize your feet against the opposite corner of the tub. OK – good. Now you are going to squeeze shampoo into your hand, place the bottle somewhere – anywhere, then close your eyes before you… woaw, steady… steady…” And emotional, because it requires nothing less than bravery to navigate each overwhelming and potentially humiliating moment, often without the understanding of the people around you.

It has been seven and a half years since I lost my hearing and balance, and seven years since my last really bad bout of vertigo. For the most part, Sudden Sensorial Hearing Loss has been manageable, hence the long break in posts. I went on my first hike within a few months of SSHL, I was able to stay on a bike by six months and started bike-commuting again after a year, and I ran my first marathon in May 2013. My last and only really bad bout with vertigo was after the 2007 holiday season, just six months after experiencing sudden deafness. I was excited to have contract work that kept me at home for the better part of three weeks so I did not have to ride the roller-coaster city bus, navigate long Washington, DC escalators, or even shower if I didn’t want to. By the time that I returned to my normal life on buses and escalators, though, my world had developed into a torrent of tumbling and screaming moments.

Some people describe vertigo like walking on “sea legs” or a merry-go-round. I experience vertigo like a roller coaster; or more precisely as that feeling you had when you were six after an adult held you by the hands and spun you until centripetal force lifted your feet high off the ground. Only they kept spinning beyond the moment it was fun. And you are no longer six; you are a fully grown functional adult who suddenly feels helpless and overwhelmed. When you appear to be a perfectly healthy adult who rides a bike and runs marathons, this is a really difficult physical-mental-emotional experience to communicate to others.

My circumstances make this bout of vertigo particularly lonely. I divorced and located to Rwanda a year ago in pursuit of my passion for global health research. I am surrounded and supported by an amazing community here, though none of these folks witnessed my initial recovery, and that bout of vertigo. This bout of vertigo was brought on by being in bed for a week with Typhoid. The Typhoid itself could have been a lot worse. I felt weak, headachy, and “out of it” for a few days with a slight fever; but there were no gastrointestinal issues or vomiting. I slept a lot, and did not move much in between. By the eighth day my head started to clear. It was a Sunday, my guard and housemates were away, and the power just went out. I realized that I did not feel stable enough on my feet to walk to a cafe, or even drive. This was compounded by uncertainty about my Typhoid diagnosis. I had been vaccinated against Typhoid twice and my symptoms were not typical, so I worried that maybe something else was wrong? Furthermore, I was scheduled to fly to Japan in a week to visit my marine brother, and for three months we had been planning a bike ride around Okinawa. The frames on the wall screamed by with my thoughts as I sat on my couch alone in the dark, and I felt helpless.

I called a good friend, an American medical doctor and who had been coaching me through the medical process all week. Within an hour, he paid me a home visit and assured me that Typhoid was a reasonable diagnosis, and that I should just continue to rest. Some version of this response came out: “REST! I can’t rest any more! Rest is crippling me!” My panic was out of place, and he rightfully inquired whether I had been experiencing depression or anxiety before Typhoid. I had not. But my alarm, then his alarm, and then my alarm to both of our sounding alarms helped me to place the puzzle pieces in my mind: vertigo was back.

The next day, I emailed half a dozen friends explaining a little about SSHL and vertigo, and asked them each to visit my house and spot me on a stroll around my neighborhood. They each did, which felt amazing. And my boyfriend, who had been motorcycling his mom around Rwanda, cut their trip short to be with me, walk me around Kigali, and prepare for my Japan trip.

I am now an hour away from touching down in Okinawa. I am thrilled to spend the holidays with my “little” brother (who will celebrate his 30th birthday on this trip). It was just over two weeks ago that I came down with Typhoid, and a week since I emerged from the throws of Typhoid with vertigo. This recovery has been by the skin of my teeth. If my flight had been any earlier, I don’t think I could have walked through airports by myself for two days. As it is, I used carts as crutches, and had to ask a fellow passenger for help stabilizing myself as we waited to board this morning. I am not sure if bicycling will happen on this trip. Each day I push my body and mind as far as I can, while also trying to be patient with both. I know that this experience is full of growth opportunities. An opportunity to recognize my amazing support network. An opportunity to be humbled by the simultaneous fragility and resilience of our bodies. An opportunity to refocus and reinvest in my own balance – mental and physical. And an opportunity to reconnect with you all out there also managing hearing loss, tinnitus, and vertigo – invisible disabilities – and let you know that I empathize.

Thanks to reader Arb, I just learned that soon a new Magnetic Bone Anchored Hearing Device will be available through Cochlear soon. The device will work like the BAHA – using bone conduction to transfer sound from the ‘bad’ side of your head to your ‘good’ ear – but rather than attaching the hearing aid to an abutment, the hearing aid will attach via a strong implanted magnet. This could reduce issues around infection at the abutment site and awkward moments at the barber shop. Please share your experiences if you are one of the lucky ducks who gets to try this device soon.

It’s been two and a half years since my original post about BAHA, and I’m thrilled that it has garnered so much conversation. Getting a BAHA is a large (and expensive!) commitment that comes with expectations, and folks seem eager to weight all of this as much as possible before committing to the surgery and a lifetime with a peg-head.

I still think it comes with minor hassles (occasional ooziness at the implant site, getting cold faster than the rest of my head in the winter and aching a bit, and changing my hairline). I discussed these in my original April 2010 post.

Important Update

I have to make an important update to the second part of my post, though, where I discussed what I thought was a design flaw: in my experience, the BAHA only picked up sound in one direction (to the side), and didn’t pick up sound in front of me, often where I needed it the most. I stopped wearing my BAHA for the most part early-on, and since, I’ve adapted fairly well to having one ear. As a result, it has been ages since I’ve seen an audiologist.

I visited an audiologist this summer to discuss alternatives to Devino, the device I have, and discovered that one of my two microphones has been broken this entire time!! I feel rather silly – it makes much more sense to have a broken microphone than for the company to design a useless product, but since I didn’t know what to expect from the device, and since I had just spent thousands of dollars on this thing and don’t remember doing anything stupid with it (like jumping into a pool), I expected it to function just fine. And so it never occur to me. An important lesson – these devices are very delicate, and according to the audiologist, you should expect to get repairs every year or two.

BAHA Repairs

BAHA has a mail-in repair center. Each repair costs a flat fee – something like $800-900. I’m not sure if this is the same for all customers depending on insurance and what not. The company stops supporting repairs on devices after a few years; so the Devino model that I have will stop receiving support soon. It doesn’t add up for me to repair my device now, but the next time I switch jobs, I might consider trying out a new device to help with the transition. What is cool about having a BAHA is that hearing technology is constantly improving, so you can expect some improvement from your devices throughout your life.

Daily Life with BAHA

It is still my experience that I do not use my BAHA 95% of the time. I work in a quiet office, and my friends and colleagues are not phased when I ask to switch seats at a table, cup my good ear to listen, or ask them to repeat themselves occasionally.

HOWEVER, I will say, it is nice to have BAHA as a backup the remaining 5% of time – particularly when I meet new people, or enter situations where I have less control over when were I sit (conferences and large meetings). Even my gimpy 1-microphone BAHA helps in these situations. I imagine that anyone who works with customers/clients, or kids would find the (fully functional) BAHA helpful much more often than 5% of the time; without a hearing device, other people will struggle to get your attention, and you will have difficulty figuring out the direction that sound is coming from.

In my original post, I felt rather disappointed in the BAHA. It didn’t perform as I expected because (a) I apparently broke a microphone on day 2, (b) it was not a replacement for my good ear, and (c) there are some minor hassles associated with having a metal peg in your head.  On a scale where 0=not recommend and 10=recommend, I was feeling a 4 or 5 in 2010. Today, I feel 6 to 7 about recommending the BAHA. As long as you think of it like a walker or wheel chair, and not a set of brand new legs, and you keep up the maintenance, I think you’ll do just fine with it. If you think you won’t need it often enough to justify, you will be much richer and less likely to have fashionable hats!

I started this blog after becoming frustrated that most available information regarding SSHL is clinically focused; little information is available about how to adapt to this condition that, for many people, decreases quality of life due to hearing loss, tinnitus (ringing in the ears), and vertigo (dizziness). For these reasons, I’m excited to share this article from the International Journal of Audiology by Carlsson, Hall, Lind, and Danermark titled “Quality of life, psychosocial consequences, and audiological rehabilitation after sudden sensorineural hearing loss.”

OK, so it’s a technical article written for a clinical audience – BUT, it does get to the heart of the matter for many patients whose quality of life is compromised by SSHL: doctors need to treat our hearing loss AND speak to the life alternating impacts of our hearing loss, tinnitus, and vertigo.

Here are findings about how quality of life is impacted by SSHL. Overall, people with more pronounced hearing losses were more likely to report low quality of life. These findings are based on paper surveys mailed to patients after seeing a doctor for SSHL. People who had experienced profound or severe hearing loss were more likely to respond to the survey than people with moderate or no hearing loss, so the authors are keen to point out that low quality of life  may have been over-reported. In any case, the results provide context for what it is like to have SSHL and related symptoms such as tinnitus and vertigo.

From Table 1. Summary of patients in the study
Severe or profound hearing loss (PTA >= 70 dB): 40%
Hearing recovery: 31%
Tinnitus (always or often): 42%
Vertigo (remaining since hearing loss): 34%
 
From Table 4. Proportion of patients with tinnitus (always or often)
1-3 years: 22%
4-6 years: 23%
7+ years: 24%
 
From Table 4. Proportion of patients with vertigo (remaining since hearing loss)
1-3 years: 34%
4-6 years: 42%
7+ years: 29%
 
From Tables 5 and 8. Proportion of patients who used some or all of their sick time after SSHL
Immediately after SSHL: 29%
1-3 years after SSHL: 29%
4-6 years after SSHL: 35%
7+ years after SSHL: 27%
Of patients using 25%-100% of their sick time, the portion who always or often experience tinnitus: 61%
Of patients using 25%-100% of their sick time, the portion who experience vertigo: 47%

Three friends, each with a hearing loss, were taking a walk one fine March day.
One remarked to the other, “Windy, ain’t it?”

“No,” the second one replied, “It’s Thursday.”

And the third chimed in, “So am I. Let’s have a coke.”

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Would I recommend the BAHA? This is a question I struggle with because my personal experiences with the device are mixed. I find that 90+ percent of the time I am able (and prefer) to go without my BAHA hearing aid at work and in social settings, and I never use my BAHA at home.  There are some minor hassles with having a BAHA, and I’m not sure if they are worth it for me.

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In my experience, many websites provide information about Sudden Sensorial Hearing Loss (SSHL), but the information is of limited quality or depth. (This was also my experience at doctor’s offices.) Websites generally list the clinic symptoms of SSHL, mention that we still know little about its cause(s), and describe possible treatment options but warn they are largely experimental. Then conclude, if you experience any symptoms of sudden deafness, see your doctor immediately for treatment.

But I thought you just said we don’t know what causes SSHL and the treatments are experimental?!?

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By December 2007, I had been dealing with single-sided deafness for nearly six months. Within weeks of loosing my hearing and mobility, I was eager to plunge back into life to regain as much normalcy and control as possible. In September, I returned to college and started a new internship. For many weeks, I was exhausted and overwhelmed by the commute, meeting new people, and trying to engage my new classes and work.

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ONE – SSHL has improved my quality of sleep by keeping the world nice and quiet. Just put my good ear in the pillow and the noisy neighbors, barking dogs, and traffic noise instantly fade. Last summer I was on a camping trip with several people who said they didn’t sleep well from all the unusual noises in the woods. I had one of the most lovely nights of rest. In fact, I have a photo… believe it or not, this IS a well rested, very happy Dana.

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