Unplanned, Unexplained, Unfortunate

This is the post that I never planned to write.  Writing is one mechanism that I’ve used to cope with unplanned life events in the past, so I’m turning to it again as I struggle with what I characterized to a co-worker in an e-mail as “yet another unplanned, unexplained, and unfortunate events of my 25th year.”  Posting this publicly also allows family and friends to tune in for the full report, so here goes.

On Sunday morning I met some Notre Dame alums at Mt. Tam for a hike from the Mountain Home Inn to the West Point Inn.  On select Sunday’s throughout the year the West Point Inn hosts pancake breakfast.  On 9/11, a half dozen of us assembled around 8:30 am.  The drive up Mt. Tam was very foggy.  When I pulled into the parking lot (early) my left ear popped.  I tried to equalize it by swallowing, yawning, and plugging my nose while blowing.  I assumed that the issue would resolve when we finished hiking and I went back to the city.

Not one that deals well with things like a “plugged” ear, I laid down and took a nap, hoping that I’d be okay when I got up again.  No such luck.  When I awoke, I had tinnitus (ringing) in my ear.  I went to church and I couldn’t hear myself singing.  Very annoying.  I apologized profusely to Eileen (the Bay Area Admissions Counselor at Notre Dame) when I met her for dinner on Sunday night at Wayfare Tavern.  When I got home, I took a Claritin-D, hoping that the pseudoephedrine would help.

On Monday morning, I was concerned enough to call my doctor in SF to ask for a nurse consult.  They called back and asked me to make an appointment.  A nurse practitioner said I had tinnitus (duh!), gave me a prescription for a steroid nasal spray (Veramyst), and instructed me to continue the Claritin-D.  On Monday night I went to a SF Giant’s game with several partners in my office to entertain a limited partner.  At this point I still had tinnitus, but I had partial hearing in my left ear.  My right ear was totally normal.

On Tuesday I decided to consult an ENT.  Menlo Park Clinic, a few miles from my office, was able to accommodate me the next morning.  Meanwhile, the Veraymst and the Claritin were not helping, so I sensed something more serious.  When on a conference call, I realized I was completely deaf in my left ear.  I heard no sound – no dial tone – no conversation.  Later, a free Siemens hearing test I downloaded to my iPhone showed the same.  I had normal hearing in my right ear… and no hearing whatsoever in my left ear.  On Tuesday night I represented Notre Dame at a College Info Night in Oakland.  In the crowded gymnasium with considerable background noise, I strained to hear from my normal ear.  I couldn’t hear anyone standing to the left of my body.  I went home upset and went to sleep.

When Wednesday morning came around, I went right to the ENT.  He simply said that I should start prednisone 60 mg the next morning.  He scheduled a 3:00 pm hearing test at Pacific Hearing Service.  The test was about an hour long.  As suspected, the results came back as follows:

• Profound sensorineural hearing loss from .25-8kHz with no speech understanding.
• Normal middle ear function; mobile tympanogram with normal static admittance, peak pressure, and gradient.  Reflex testing was attempted but patient was extremely sensitive to vibrating sensation despite lack of auditory perception.
• Distortion-product otoacoustic emissions tested and absent from 1-6kHz, suggesting poor outer hair cell function at those frequencies.
• Patient was extremely sensitive to the physical sensation of loud sounds despite lack of auditory perception.

After the hearing test, I picked up my prednisone and headed to the city for a board meeting.  On the way, the ENT called to deliver the results.  He was neither optimistic or pessimistic, but rather noted that some patients re-gain hearing spontaneously (or with drugs) and some don’t.  Since I am in the “profound” category of hearing loss, the likelihood of recovery is diminished, particularly relative to someone with mild hearing loss.  I inquired about bloodwork and MRI, but he indicated that even the results would not change the course of action right now, which is prednisone.  Concerned about weight gain, acne, blood pressure, and blood sugar changes, I asked how long I would need to stay on oral steroids.  The doctor recommended a week to start, then another hearing test, followed by additional weeks if indicated.  Another option is direct intratympanic steroid injection.  This is over 500 times more costly than the oral meds, not to mention painful and not demonstrated to be any more efficacious.

Pulled over on the side of the road, I started crying.  People were staring at me, probably wondering what awful news I had just received.  I called my Dad to give him the updates.  He consoled me, admitting that the news gave him a “knot in the stomach.”

I managed to pull myself together during the board meeting and drove home a friend, admitting to her what was going on.  ”I feel like I am falling apart,” I admitted.  She expressed concern, offered to have dinner, and gave me a hug.  It was really kind and in that moment, it was a relief to have someone so caring.

At home, I e-mailed the partners I work for to explain what was going on and request Thursday and Friday as “work from home” days.  Worried about starting 60mg of prednisone and how that might make me feel, I wanted to be at home in my sweatpants.  I’m now on day #2 of the drugs and seem to be doing as well as could be expected.

My “fix-it”/”do something” personality type has made me thirst for information about idiopathic (unexplained) sudden sensorineural hearing loss.  I sought statistics about outcomes, literature comparing oral to intratympanic steroids, and other complementary therapies.  I called integrative medicine practices associated with CPMC and UCSF… both were booked until October.  Dismayed I sought out other alternative practices.  At 2:30 yesterday I drove across town to San Francisco Preventive Medical Group (SFPMG).   I paid out of pocket for a consult and came home with a litany of information on a low glycemic diet to stabilize my blood sugar as well as a hair mineral test.

The supplement schedule I was given is as follows:

• Cox2Tame (to decrease inflammation) – 3 at breakfast, 3 at dinner
• Wobenzyme (another anti-inflammatory) – 4 upon rising, 4 mid-morning, 4 before bed
• Vitamin E 400 (to work in tangent with the prednisone) – 1 at breakfast
• Vitamin B12 (for nerve regeneration) – 1 at breakfast, 1 at dinner
• Food-based Multivitamin – 2 at breakfast
• Vitamin D3 (a supplement I normally take) – 1 at dinner
• Calcium-Magnesium (another supplement I usually take) – 1 at dinner

My kitchen table is covered in bottles.  I feel like an apothecary!  I have no idea if these supplements are going to help, but I am willing to try.  The osteopath at SFPMG that I saw also recommended several blood tests:

• C-reactive protein
• Homocysteine
• CBC w/ diff
• Vitamin D
• FT3, FT4, TSH

Today I am going to visit my PCP, who will hopefully decide to order some bloodwork and possibly an MRI (to rule out acoustic neuroma).  On Saturday I will visit an acupuncturist.  I’ve put the wheels in motion for hyperbaric oxygen therapy, another alternative that has been used with some success.  The San Francisco Institute for Hyperbaric Medicine has treated some patients with sensorineural hearing loss and is familiar with the science.  I am waiting for a telemed consult via Skype and may be able to start oxygen therapy on Monday.  Studies suggest that if initiated within the first week, the treatment has the best likelihood of helping.

What I am struggling with more than anything is the unknown.  Will I ever again be able to hear from my left ear?  If not, how will that impact my life?  I realized on Tuesday that being in situations with background noise (essentially any group setting, or even at home when there are noises outside) renders me unable to differentiate almost any sound.  Part of my reason for sequestering myself a home right now is because being in public is challenging and scary.  It reminds me of what I’m facing… and I worry about how that spirals into other areas of my life.  How will I handle work events (including the upcoming Health 2.0 salon dinner that I mastermined), or social situations?  What will people think of me?  Will I be able to go to grad school, if I choose?  Will I ever be able to explore dating relationships if I can’t hear when I go out and find myself in social situations?  How will this affect my learning ability?  Am I going to be perceived as dumb, slow, or stupid?

I grieve the ability to hear, I detest the ringing that hasn’t let up for days, and I am just plain scared.  I am young.  25 year olds aren’t supposed to go deaf without explanation.  Why would God let this happen to me?  Why when everything else could be so right, could this be happening?  Why can’t we figure it out, treat it, make it better, make things okay?

I need to find something to hold onto that helps me stay optimistic.  The mind-body connection is something I believe in and right now my mind is overreacting to what my body is experiencing, leading to a crazy imbalance that is difficult to manage.  I’m mildly comforted by the stories and experiences of others, who admit that the psychological burden is tremendous.  I refuse to take anxiety meds, so I will try to do some yoga, go for walks, rest quietly and listen to relaxing music with my “good” ear.  Fortunately I am sleeping well.

If you find yourself asking what you can do to help, please know that I don’t “expect” anything from anyone.  The last few days have been, as the subject of this post suggests, “unplanned, unexplained, and unfortunate.”  Thanks for reading.