Baby Steps

Last Tuesday night, the evening that I came home acutely aware of my sudden deafness, I used a free Starkey iPhone hearing test to measure the extent of my hearing loss.

As you can see, the right ear was normal… and the left ear was a different story altogether.  But today, after noticing a pitch change in the tinnitus (ringing) and crackling sounds in my left ear (much like the old fashioned VCR static… if you can rewind your brain to the early 1990′s) upon being exposed to common sounds (like wind blowing through a car window) I bravely decided to try the test again.

You have no idea how excited these bar graphs make me.  I still can not distinguish any speech from my left ear (a Siemen’s iPhone hearing test confirmed that), but to see improvement makes me want to shout from the rooftop.  If you look closely at the gridlines, you will see that I went from 5.1 to 5.8 on low pitches, from 3.3 to 5.2 on mid pitches, and from 3.4 to 5.1 on high pitches.

Similarly, here is a plot of frequencies.  Last Tuesday my right ear was normal.  My left ear was a different case.  All frequencies (low to high) were poor, even at the loudest levels.

Now here’s tonight…

Again, you can observe the improvements across the board.  At 500 Hz, I went from a scaled score of 1.1 to 1.7.  At 1kHz, I went from a 0.4 to a 1.0.  At 2 kHz I went from 0.8 to 2.7 and at 4 kHz I went from 0.8 to 1.8.  By looking at the red band at the bottom, you can see that on three counts, I am still experiencing severe hearing loss, but that at 2 kHz I have made great progress.  (For reference, this is a 2 kHz sound…)

The improvements make me excited because if I don’t make a full recovery (and while I may sound pessimistic to admit this, I don’t reasonably expect to go from “profoundly” deaf to 100% recovered in this lifetime) I may be able to use a hearing aid.  It’s amusing to admit that the potential of getting a hearing aid at my age is exciting, but let me tell you, it sure would beat the alternative in the event that I don’t recover all of my ability to hear.  Profound deafness can not be aided by a device, which is part of why I felt so much despair and hopelessness after the initial diagnosis.  For analogies sake, I felt like my leg had fallen off without explanation and that the option of getting a prosthetic wasn’t even a possibility.

I really have no idea what’s helping in my situation.  It could be the steroids, it could be the variety of vitamins, the diet change, the rest/relaxation, the prayers, or simply the course of time.  Whatever it is that’s making this better, I selfishly hope and pray for more.  I have two more doses of steroids and a follow up ENT appointment on Wednesday afternoon, when the next seven days (and beyond) are likely to be plotted.

As for what might be to blame, I’ve been thinking about the doxycycline that I was on for a couple of weeks this summer when I was struck by a nasty gram-negative skin structure infection.  It wasn’t obvious to me that a drug I took three months ago could become ototoxic three months later (since presumably it has been completely eliminated due to an 18-22 hour half life) but some informal searching yielded an interesting post about the tetracycline family.

On the diagnostic front, I donated a nice nine vials of blood to the hospital lab this weekend and will be anxious to get the results.  My firm has again been outstanding through this ordeal, offering to foot the bill for my MRI (if insurance prior authorization was going to slow down the process).  I received insurance approval today, but somehow an “urgent” imaging procedure still has to wait for a week.  The women scheduling almost had me in tears.  I know it’s not always all about me, but it’s hard to wait an extra week when one is desperate for answers.

Alas, this experience has been one of intrepid growth.  Learning to navigate “the [medical] system” and seek solutions has been mentally exhausting and highly time consuming (I spent an hour today trying to process paperwork and receipts from the various visits I’ve been to in the last week).  It sure gives me a unique reference frame for seeking new efficiencies as a healthcare investment analyst.  But perhaps most importantly, I’ve also allowed myself to let down the front, talk about “feelings” and be scared in front of friends.  The support and messages of hope are really what is keeping me going through a tremendously tough time.  To everyone that has stopped by, baked banana bread, listened to me talk, replied to me on twitter and sent notes (and trust me, they are coming from near and far… including some from distant connections or total strangers), please know that I have saved every one of them.  I read them multiple times a day.

I suppose I shall end this update with an ironic anecdote.  Last Tuesday I received a call from the CEO of a biotech company in Oregon.  I met the company at a conference earlier this year.  The company is developing novel therapeutic peptides for treatment of… you guessed it, hearing loss.  Their science is new, exciting, and emerging.  And the timing of their call to poll for interest in joining an investment syndicate?  Man, they couldn’t have picked a more appropriate day.  I guess that proves that God has a sense of humor.

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