The Joy of Meniere's.

Ménière’s disease /meɪnˈjɛərz/,[1] also called endolymphatic hydrops, is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, low-pitched tinnitus, and hearing loss. The hearing loss is fluctuating rather than permanent, meaning that it comes and goes, alternating between ears for some time, then becomes permanent with no return to normal function. It is named after the French physician Prosper Ménière, who, in an article published in 1861, first reported that vertigo was caused by inner ear disorders.[2] The condition affects people differently; it can range in intensity from being a mild annoyance to a lifelong condition.[3]
— wikipedia entry for Meniere's Disease
Blindness cuts us off from things, but deafness cuts us off from people.
— attributed to Helen Keller

Back around 2007 or so, I made an appointment with my GP at Kaiser-Permanente seeking treatment for sporadic dizziness.   My doctor ran me through some physical diagnostics and sent me home with the advice to reduce my salt intake.

Over the next several months, I repeated my visits as the dizziness increased in severity, frequency and duration.  The most-oft proscribed treatment received seemed to be a form of yoga exercises the purpose of which remain unclear to me.  Eventually other symptoms began to emerge such as, at night, when the house was asleep, I could hear faint ringing in one or both of my ears.

About six months after my initial visit,  I made an innocuous comment about how much I enjoyed alternative music - but, I asked, when did it become popular for singers to mumble the words of songs?  I received a puzzled look and the comment: they don't mumble the words; maybe you should get your hearing checked.

Cartoon light bulb appears over my head.  Aw....shit.

Another appointment with my GP and I get a referral to the EENT clinic on the Kaiser campus for my first audiology exam in more than 20 years.

Sitting in the booth, staring at the anechoic paneling, I press a button when I hear a  tone.  First the left, then the right ear.  There are gaps in the timing of the test.

When I am released from the booth, the doctor hands me a copy of my audiogram and bluntly tells me that I need hearing aids.  I have slight-to-moderate loss in my left ear, moderate-to-severe loss in my right.  She starts to turn away from me, heading to the next patient.  I stop her and ask what the next step is.  She thrusts a pamphlet for Kaiser's Hearing-Aid clinic into my hands and informs me that I will need to purchase hearing aids on my own as my insurance doesn't provide coverage as they're considered to be cosmetic.

I didn't have the money to purchase hearing aids as I was informed that my out-of-pocket expenses would be approximately $3,000 to $4,000 dollars.  Cosmetic.

I make a couple trips to the Kaiser's Hearing-Aid Clinic in San Jose - one of the best medical care facilities I have every visited - and over several examinations including one with the chief of surgery of the EENT clinic, I am finally and officially diagnosed with atypical, bi-lateral Meniere's.

Fast forward a year, and I am working for a company that supports pre-tax medical spending.  I maxed-out my contribution giving me an effective budget of $4,000 for the year manifesting in the form of charge card, the total balance becoming available to me on January 1.

My Uncle, Jon Shallop, a renowned doctor specializing in cochelar implants and hearing loss,  called in a favor on my behalf and set me up with a doctor in SoCal who agreed to see me for the costs of the hearing aids.  

I zipped down to L.A. (living, at the time in San Jose), to meet with Dr. Dennis Colucci in Laguna Hills.  It's been over a year since my first visit to the doctor, and about four months since I was diagnosed with Meniere's.

I meet Dr. Colucci and tell him that he doesn't need to give me the family special - I have (or so I thought) the money to pay full price.  He looks at me and gently informs me that this visit, including the hearing aids, would normally be billed at around $6,000 but he's going to sell me the hearing aids at cost: about $800 each.

I am fitted with a pair of low-end Oticon's BTEs using open-end ITE tips.  He tells me to sit quietly, that the HAs are factory-configured and he needs to adjust them to the results of booth test I just took.

Dr. C's office is on the second floor.  Being SoCal, there's palm trees outside his window and I can hear the rain falling and the wind scraping the palm leaves against the window.

Wait... what?

Part of the problem of gradual hearing loss is that you lose hearing so slowly, you don't realize what sounds you're no longer hearing.  The sudden (and complete) shock of hearing rain and leaves in the wind stunned me - not that I was hearing it, but that I realized I hadn't been hearing these sounds in a long, long time.

Once Dr. Colucci got my HAs dialed-in to my loss, he walked down a hallway, about 20 feet away and, with his back to me, asked me if I could hear him.  This would have been impossible without my new hearing aids but, yes!  Yes, I could hear what he was saying.

On the drive home and in the weeks to follow, I replayed a lot of alternative music and was stunned - they don't mumble the lyrics!

Unfortunately, Meniere's is a progressive, fluctuating disease.  You have good days and you have bad days.  You also have absolutely horrible days.

Over the next several years, I watched helplessly as my hearing loss advanced in my right side.  The tinnitus is especially annoying and I learned to gauge the progress of my loss by associating that with the increases in frequencies and volume of the ringing in my right ear.

I changed hearing aids several times, eventually settling on the ones I currently wear - they're Phonak's and, according to my Audi, they're about the strongest HAs I can get.  They also set me back $6,000.  Cosmetic.

My right side loss progressed to profound loss leaving me only the very low frequencies starting around 60db. The loss progression in my left side was much slower and stabilized within a year or two to medium-severe loss.  My speech discrimination on my left side remained very high usually between 88-100% depending on how I was doing the day of the test.

Last November, almost a year ago, I qualified for a cochlear implant on my right side - I have less than 2% speech discrimination on that side although I can still hear some very low frequency noises.  My hearing aid on that side transposes frequencies to those low ranges which helps me distinguish sound origins.  

I've not pursued a cochlear implant because the cost ranges from $40,000 to $60,000.  Even with insurance, which considers CIs to be a prosthetic device and eligible for coverage, my out-of-pocket costs through my company's insurance at 20% means that no, I won't be getting an implant.  Probably ever.

There's also the risks to consider:  probability of facial paralysis, no guarantee that the CI will perform/work - even though my evaluation as a candidate is high, it's not a promised fix.  The surgical process is irreversible as well.

Starting about a year ago, I started noticing a ringing in my left ear.  There's a fairly significant probability that Meniere's will jump to the other ear - and it would appear that having ravaged and destroyed my right-side hearing, the disease is not focusing on my left.  At first, I would have to strain, in a completely quiet room, to hear the ringing.  Then I could hear it without straining.  Now, I hear it over all but the loudest noises.

I know from my experiences with my right side that, if the disease progresses at the same rate, I'll have some fluctuation in the tinnitus - but eventually it will surge to match the levels I "hear" on the left.

Several doctors have opined that the tinnitus is analogous to the phantom-pain of a lost limb.  That the brain is compensating for the lack of neural input by generating a white noise.  I feel more fortunate than others as I find my tinnitus more comforting that I do a annoyance.  

From my reading, the only cure for tinnitus is a labyrinthectomy - and this is where I get annoyed at the situation...because the process destroys the residual hearing, you're not considered to be candidate for the surgery until your hearing loss has progressing to the extent where it's no longer "useful to the patient".

Imagine - I have to endure another 1-3 years of gradual hearing loss, increased tinnitus, and all the wonderful symptoms of Meniere's, before I can get corrective surgery to eliminate the effects/symptoms of Meniere's.  

Every day that passes in those next few years, I will get to listen to the increased ringing in my ears while I wonder how much hearing I've lost today, if I'll hear everything I'm supposed to, whether or not I'll fall down again today from the vertigo (and, hey - we're approaching that hip-breaking age group so double-joy!), will I be able to stand-up at my desk and work today, will I be able to sleep the entire night through.

I am more fortunate than most - I learned ASL about 30 years ago and I am infinitely more comfortable in the deaf community than I am in the hearing.  I'm not afraid of my hearing loss or my inevitable total deafness.  I don't consider myself to diminished - I can still write software, I can still romp with my dogs, drive a car, watch a movie.  

I can't ride my motorcycle anymore - not until I get rid of the vertigo symptoms from Meniere's.  I can't participate in conversations in noisy rooms.  (With my hearing-aids, in a perfectly quiet room, my left-side speech discrimination a year ago was evaluated at 80%.) I can no longer tell where sounds are coming from.  I don't climb ladders.  I don't use a telephone although I am a texting bandit.

I overcame some personal embarrassment and ventured risk - I asked my company's HR rep, and our CEO, if they could please provide an interpreter at company events so that I could participate.  As California is a state of "reasonable accommodations" when it comes to disabilities, I was told that "someone would take notes" for me.  A one-hour meeting usually generates about 3-4 bullet points, if that, and if I ask for the notes.  So, I don't attend meetings anymore.

I've accepted the way of things which includes the ignorance or casual cruelty of hearing people.

If you've not picked-up on the thesis statement, please, allow me:

People with hearing loss are generally regarded as an inconvenience to hearing people.  I can see your heavy sighs and I can definitely see your eye-rolls when you're put in position to "deal" with me.

If there's anyway to make a deaf person hear, no risk is considered to be too great.  We'll implant babies with cochlear implants, we'll risk a plethora of medical complications from the surgical process across all age groups,  we'll burden the recipients with soul-crushing debt (thank you, insurance companies!), or make you endure years of debilitating symptoms from your disease just to keep you teetering on this side of hearing.