A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Wednesday, March 20, 2013

A Letter to My Doctor

Dear Doctor,

I must start this letter by saying I am exceedingly grateful to have had the opportunity to be treated by you.  I recognize that you have studied Meniere's disease ad nauseum, published hundreds of articles about it, and traveled the world to attend and present at conferences on the subject.  When I read about the struggle other sufferers have just in getting a diagnosis, much less appropriate treatment, I feel a bit guilty to have had the sheer luck of living close enough to be cared for by someone as competent as you.

But, as the person living with the frustrations of this disease, I feel compelled to tell you that I wish there was one more thing you would have encouraged me to do a long time ago: get a hearing aid.

Shortly after getting my last gent injection, it became apparent that my hearing had reached a new low, to the point that I now fell into the "severe hearing loss" category in that ear.  I don't fault the gent, it gave me my life back by stopping the relentless vertigo I was experiencing.  My hearing stunk before the gent anyway.  So, at my follow-up appointment with you, I asked if I qualified for a hearing aid.  You winced.  I think you felt badly about the possibility that the gent may have stolen a little more sound from my world.  I appreciate your compassion.  You stated that some of your patients found that hearing aids made them feel dizzy.  Considering what I had just been through, Lord knows I didn't want to do anything to make me feel dizzy.  You also went on to say that hearing aids don't always help people with Meniere's disease due to the fluctuating nature of our hearing loss.  All that being said, you kindly referred me to the audiologist in your office anyway.  I must have looked pretty pathetic.

I met with the audiologist.  A stoic woman, very matter-of-fact, but pleasant enough.  She confirmed that my hearing loss was significant and proceeded to discuss a couple of models of hearing aids that might benefit me.  After asking some technical questions, I asked about cost.  I already knew my health insurance did not cover the expense of these little devices.  She took a deep breath and said, "$1800 to $2000 - for one."  Fortunately, I only needed one, but at that point I abruptly said I needed to think about it and walked out of her office, disgusted.

Three stikes: potential for dizziness, questionable benefit, and cost.  So I groped for sound for the next two years.  I kept a stiff upper lip while experiencing exhaustion, brain fog, hyperacusis, and further progression of my hearing loss.  Somehow I managed.

Then last summer I had a new job opportunity handed to me on a silver platter.  It was all but my dream job, working for a well-respected company and putting my years of professional experience to good use for the common good.  This meant a new office with new coworkers.  My previous employer and colleagues had lived my Meniere's journey with me and had been very accomodating.  Coincidentally, my desk had been positioned such that my hearing environment was almost ideal and although I still had some difficulty hearing, I got by well enough.  I had made the decision not to tell my new employer about my diagnosis.  My interviewer informed me of the company's stringent physical exam requirements and an off-handed comment was made about a candidate who was once turned down for employment due to a heart murmur.  As my current employer was going through some major changes at the time, which put into question my long-term job security, I felt I needed to do everything I could to secure this new job, so I didn't mention my hearing loss.

Two months into my new position, I was struggling terribly.  Not only was I frequently asking people to repeat themselves, but I couldn't ask for any accomodations for my condition.  Eventually, I did lightheartedly mention to a few people that I had some trouble hearing out of my right ear and could they please get my attention before speaking to me, but they quickly forgot and continued to talk to me with their head turned away from me or from behind my back.  When I worked in the clinic with patients or taught group classes, I couldn't understand what was being said.  I couldn't ignore my hearing loss anymore.

I'll skip the details of being evaluated and shopping for my hearing aid, but I eventually took the $1800 plunge and here's what I learned after getting this little beauty that I wish someone had told me sooner:

1. Stimulating the brain with sound improves hyperacusis, the condition of being hypersensitive to sound.  It was hard the first few weeks, but I was persistent.  Rarely did I take the hearing aid out, despite sound grating on my nerves at first.  Eventually, the sensation virtually disappeared.  Only recently did I read that avoiding sound actually makes hyperacusis worse.  The brain becomes super sensitive to noise when it is deprived of sound stimulation.
2. Correcting single-sided hearing loss makes the brain feel more balanced.  This is hard to understand until you experience it.  Basically, I was always favoring my good ear, tilting, twisting, and relying on it to understand what and where sounds were.
3. A hearing aid helps drown out some of the annoyance of incessant tinnitus.
4. The cost of a hearing aid takes into account the multiple appointments with the audiologist usually required for adjusting the hearing aid, not only in the beginning, but for the life of the device.  I have probably used up half the cost of the HA already with visits for fine tuning, excessive feedback, and questions that have arisen with day to day use.  Considering this and the huge improvement in my quality of life that I've experienced, it feels like a bargain.
5. Hearing aids can most certainly help at least some patients with Meniere's disease, such as yours truly.  My hearing isn't perfect, nor is my hearing aid ideal in all environments, but I most definitely hear better than I used to.  I can sense where a sound is coming from more so than before.  I ask people to repeat themselves far less often than I used to (a real plus for my family!).  I can understand conversations better, even in noisy environments.
6. I did not experience any increase in dizziness.  In fact, I felt more balanced and much less fatigued at the end of the day.

So, in hindsight, Doctor, I wish you had encouraged me from the very beginning to get a hearing aid.  It seems you might have read an article or two along the way about the effects of hearing loss on the brain, as well as on the quality of life of people who are living with it.  I understand, though, that you are in the trenches of this disease in your own way.  You have focused your career on treating the worst this condition has to offer: vertigo, balance disorder, and extreme physical discomfort.  I don't really fault you.  But I hope in the future when the next patient asks you about the pros and cons of getting a hearing aid, you might have a more balanced discussion with them about some very real benefits that can be achieved by wearing a hearing aid.  Most major manufacturers of hearing aids have a 30- to 90-day return policy.  So what does your patient have to lose?  What do they have to gain?

Someone who lives with Meniere's disease


  1. Excellent points Angelea! I think one of the most important things we can do is be our own best advocates. Having said this, I don't do it very well myself. Canadians in general are too nice and too afraid of hurting the feelings of other people...doctors or otherwise. I will use your advise on Tuesday at my next appointment and when this is all said and done....I'm getting that hearing aid!! :)

  2. Great! Btw, I was able to purchase a remote volume control for my HA (Phonak Audeo Smart). It's the size of a pager, has a clip, and fits in my purse. It made a huge difference in the beginning, as it allowed me to start off on a vert low volume and increase it at my own tolerance level or vary the volume on a better or worse day and not have to wait for an appt with my audio. It was well worth the extra $140. Tolerance to the amplified sound took a few weeks, but it's so much better now.

  3. I can't believe I've been missing all of your posts, i thought you just weren't posting. But no....here's a post from a few months ago, but I'm just now seeing it because I searched for you.

    I'm glad the hearing aid worked. Mine worked well for me too when I was able to use them. I'm looking forward to having more balanced hearing when I get my second CI, you are very right, having hearing on just one side is hard! and so tiring!!

    Keep us posted on the new treatment. I'm sorry your vertigo hasn't been nice lately. I'm having the same problem. it's not horrific, but I'm having vertigo about every day. It's rough. I am hoping the CI will help, as I won't feel as fatigued trying to hear with one ear...ect.

    good luck my friend.