the world through my ears

This is a long one.

I was terrified of thunderstorms as a child.  My parents always joked that I could "hear a thunderstorm in the next county" and anyone in our house would know if it was going to storm because I would be standing in my parent's bedroom looking out the window just waiting for the storm to come upon us.  It was the thunder that scared me the most.  The anticipation of it.  You knew what was to come after that initial lightening strike.  It would sometimes take a few seconds.  And other times it would be instantaneous.  The noise.  A noise so loud it would shake the entire house.  I would dive into the safety of my father's arms.  I'm still terrified of thunderstorms.  I fear them.  But my fear has been significantly minimized in recent years.  You see most of the thunderstorms in this region occur at night.  I'm asleep at night.  And now the loud thunder is actually more like a quiet rumble in my ears.  Actually there really is nothing that is "loud" to me these days.  My children are fairly quiet.  Their laughter amongst each other but a blip on the radar.  The people around me are quiet.  I no longer watch television but I instead read the words on the bottom of the screen.  There are no noisy restaurants.  My already introverted personality has only gotten worse.  And I actually cannot remember the last time I listened with the window open and heard the birds speak to one another.  My world is going silent.

You would think that the moment I noticed this silence I would have hightailed it to a doctor.  But for the most part the reduction in my hearing has been a very, very slow process.  It might have even started as a teenager.  But I’m not 100% certain.  I distinctly remember failing a hearing test in high school.  I’m not sure why the school never pushed the issue.  I was a teenager.  I know it was the last thing I was going to bring up with the parental units.  And plus with a gradual decline in any of your major senses your body just adapts to the situation.  I just had a new normal.  All I know is that my hearing got significantly worse shortly after the boys were born.  I distinctly remember during the delivery of the boys having a moment of panic because Kara was not in the operating room yet.  And then I looked over and realized that she was indeed in the room with me.  I didn't realize it because she was standing on my left side.  I never heard her enter the room.  I thought that was strange but then I forgot about it in the craziness of being a parent to newborn twins.  And in recent months my ability to hear in my left ear has all but gone to the wayside.  I have gotten scared multiple times because I don’t know that someone is standing next to me.  I'm also quiet certain that our car accident this past winter could have been prevented had I heard the fire truck approaching the intersection prior to actually seeing the fire truck approaching the intersection.  That has been the hardest realization during this journey.  So I guess you can also say that there was a huge denial factor at play.  I’m learning that this is common too.  It’s especially true in hearing loss among young professionals.  I’m 33 years old.  It’s really hard to face a hearing loss at such a young age.  It’s such a taboo subject.  I work in the corporate world.  It is an extremely competitive arena.  I already have one strike against me being a female in our financial division.  I did not want another strike against me.  A hearing loss is a major strike.  I have a family for which I am almost the sole provider.  But in recent months I had to suck it up and deal with the fact that I am indeed losing my ability to hear the world around me.  The fact that I can no longer hear a lot of the conversations in my workplace, and that I rely on instant message tools and e-mail almost entirely for communication, is actually now a bigger strike against me.  I realized several months ago it was time to deal with the situation.

I initially started this journey with my PCP but after no luck I found myself sitting in the waiting room of our local ENTs office.  I began with a hearing test.  The moment I started discussing my symptoms with the audiologist, prior to my hearing test, she began to nod her head in agreement, almost like she had heard this all many times.  I mentioned, at the end of the conversation, that I noticed a sharp decline in my hearing at the time I got pregnant with the boys.  I immediately followed that statement up with, “I know that is super strange.  And probably just a coincidence but I swear it’s when I lost most of my hearing.”  So needless to say I was blown away when she responded with, “Nope.  It’s not strange at all.  I can almost guarantee, based on your symptoms, that you have Otosclerosis. And we might be able to fix it.” Let’s just all pause at this sentence.  I dragged my feet for months and months and months on this problem.  We need to remember that the boys are now two years old.  My sharp decline in hearing began when I was pregnant with the boys.  I guess denial was a much bigger factor in my brain.  And within a few minutes of meeting with an audiologist I had a tentative diagnosis.  Not only a tentative diagnosis but the audiologist casually mentioned that it might be fixable.  The room may have started spinning just a bit.  I was a bit thrilled.  The audiologist proceeded to do the hearing test.  And I failed it.  I was blown away to learn that I had approximately a 80% hearing loss in my left ear and a 20% hearing loss in my right ear.  Crap!  I even had a hearing loss in my “good” ear.  Talk about your ability to adapt to your surroundings.  However, my hearing test indicated that I had a mix of sensorineural hearing loss and conductive hearing loss.  A sensorineural hearing loss involves the nerves in your inner ear and it typically cannot be fixed.  It can only be improved through the use of a hearing aid.  A conductive hearing loss means that something is preventing the sound waves from getting to the nerves in your inner ear.  It can sometimes be fixed.  I next met briefly with the ENT.  And within a matter of just a few minutes this doctor managed to take all the positive air out of my newly inflated balloon of happiness.  Way to go dude!

I walked away from the very brief meeting with the ENT with instructions to get an MRI and the words “tumor”, “rare”, “but more common these days”, “hearing aid”, and “as soon as possible” floating around in my head.  Those are literally the only words I really heard during my entire conversation with the doctor. Ha!  And there were a couple reasons for this.  (1) The ENT spoke softly the entire time.  “HELLO!  I’m here because I have a hearing loss ding-dong. It’s at the very top of my information sheet.”  I asked the ENT to speak-up several times before I just gave up. It’s not worth the battle.  (2) The ENT literally began the conversation with, “Hi.  It’s nice to meet you.  There’s a chance you have a tumor on a nerve in your brain.”  Um?  Do you really think it’s necessary to start this conversation with the word “tumor”?  Way to ease into the matter doctor.  The conversation actually ended with zero mention of Otosclerosis.  And in fact the conversation ended with my hearing loss only being able to be “helped” with the use of a hearing aid.  And that was assuming I didn’t have some rare tumor growing in my brain.  Sigh.

I think in the end Dr. ENT is just a bit socially awkward.  This was obvious.  And to be honest I want my doctor to be smart and talented in the end.  I don’t care if we can have a great conversation.  I’m not trying to make a new best friend.  I actually got a call from the nurse about 24 hours after my initial meeting with the ENT with instructions to get a CT scan instead of an MRI.  This was a relief as these instructions were now falling in line with what the audiologist had told me in our initial consult.  I think Dr. ENT just needed some time to review my records and my hearing test results.  A CT scan could be used to diagnose any abnormalities in my brain, such as a tumor, and it could also be used to diagnose Otosclerosis.  The doctor would be able to get a clear picture of what was going on.

I was scheduled for a CT scan the very next day.

(now time for a side conversation) The CT scan was actually being done at the same hospital where I gave birth to the boys.  This hospital had been a huge part of my life for so long.  I went to many prenatal appointments at this hospital.  I went into preterm labor in this hospital.  I learned at 26 weeks a newborn might not ever leave the hospital.  I eventually gave birth in this hospital at a very awesome 34 weeks.  I left my boys in the NICU in this hospital.  It was doctors and nurses who took care of my boys those first few weeks of their lives.  It was not their Momma or Mommy.  I learned to feed and bath my boys in this hospital.  And I had not walked into that hospital since the day we finally took Jakob home.  It had been two years.  I walked into the lobby of the hospital for my CT appointment and I immediately started to shake all over.  And I mean physically my body started reacting to the sights and smell of that place.  I thought for a moment I was about to lose it.  It didn’t dawn on me until I was taken back for the CT scan, in a room 100% like the triage rooms on the labor and delivery floor, that I was experiencing something probably very similar to PTSD.  I was all but was a puddle of mush in the room.  My mouth was dry.  My heart rate was through the roof and I had a few moments where I literally had to talk myself out of a panic attack.  I had to tell myself that I was okay.  That the boys were okay.  That Kara was okay.   I’m not sure my nerves ever really settled completely down during my appointment.  But I learned a lesson that day.  I might not physically or emotionally ever be able to handle another pregnancy.  The thought of premature births.  The thought of miscarriages.  I'm not sure it's worth it to me.  I'm not sure it's worth missing out on my life with the boys.  I could barely get through an appointment in a hospital.  How would I get though trying to get pregnant?  How would I get through trying to stay pregnant?

The CT scan itself was very simple for the most part.  It was a CT scan with contrast so the hardest part was getting poked in the arm in order for the contrast to be injected during the actual scan.  The problem was the nurse had to go take care of another patient and the actual radiologist decided to go ahead and start the IV herself.  Sigh.  I’m not exactly sure that the radiologist had had as much practice as the nurse.  Let’s just say after the radiologist went, “Geez.  I could be in here all day digging around for your vein.”  I kindly suggested that perhaps we have the nurse try the other arm when she gets back to the room.  The radiologist responded with a definite “That’s a good idea.”  I’m so glad she agreed with me because I was starting to get a bit woozy.  I think I might have been seconds away from passing out.  I've come a long way with my needle phobia but it still does exist.  And the radiologist had literally dug around in my arm for about 3 minutes.  It actually seemed like 30 minutes.  Needless to say the nurse, who does this probably 30 times a day, was much better with the task at hand.  The CT scan itself only took about 10 minutes and just required me to hold absolutely still and not let out any big sneezes!!.  Why does your nose always itch when you cant scratch it?  I walked away with a CD of over 1,200 pictures of my brain!  Sweet.  I still have yet to figure out what one does with 1,200 pictures of their brain.  Of course  I had to stick it in the computer when I got home to check out the pure genius that resides in my skull. (please stop rolling your eyes)  But of course I wouldn’t have been able to tell you my eye sockets from my ears on those pictures.  The good news … It looked like I did have a brain.  I think! I went home that night under the mindset “If I don’t hear anything in 24 hours it probably means I’m not dying.”  Please phone don't ring.

How about my phone rang at 10pm the next night?  Yeah.  I thought for a split second that it must be time to bury me in the ground!  You would have too.  I mean.  I was all cozy under the covers watching my Downton Abbey when my cell phone starts ringing with a unknown phone number and it completely ruined my evening plans of solitude in a toddler free peace zone.  I may have silently begged for it to be a campaign solicitor or some crazy drunk dial.  It wasn’t.  It was the ENT doctor.  The good news was that within seconds of picking up the phone the ENT was able to communicate that I did indeed have Otosclerosis.  The audiologist was right all along.  Though I did chuckle when the ENT began with, “I got the results of your CT scan and you have exactly what I thought it would be …”  No Dr. ENT you made me think I had a tumor in my head.  The audiologist told me it was Otosclerosis.

So what is Otosclerosis?  I'm starting to learn.  I think that at the most basic level it is abnormal bone growth in the middle ear.  This "sponge" like material forms around the bones in your middle ear and it prevents your ear bones (that's a technical term) from vibrating and sending the sound waves to your inner ear and then telling your brain what you just heard.  So basically my inner ear, with all the nerves, has been on a really long vacation because very few sound waves even have the ability to reach my inner ear.

Dr. ENT gave me some options .  (1) We do nothing. (2) I get hearing aids. (3) We do surgery.

I made a decision to get a referral to a surgeon who specializes in this area.  Dr. ENT does not do the surgery.  I know very, very little about the surgery at this point.  The surgery, a stapedectomy, requires a surgeon to remove the abnormal bones and replace the fused bones with a prosthesis.  A prosthesis would then fix any conductive hearing loss that was being caused by the Otosclerosis.  The surgery would not however repair any sensorineural hearing loss  Dr. ENT indicated that my ideal situation, should I be a candidate for surgery, would be to "fix" the conductive hearing loss and then "treat" the sensorineural hearing loss with hearing aids.  The hearing aids would then be required to do much less work.  There is a chance that I could completely lose my hearing in any ear where the surgery is done.  I believe that is why doctors initially treat a patient with just hearing aids.  And I would agree.  However, because I have a very severe hearing loss in my left ear, there is really not a lot to lose at the moment.  I would probably just use a hearing aid on my right ear until my hearing loss became significant enough to warrant surgery.  But there is a fine balance.  There is a chance the Otosclerosis has done significant damage to the nerves in my inner ear and the surgeon would not deem me a candidate for surgery.  I am trying to remain optimistic.

So what caused this condition?  There are a lot of discrepancies in this area.  Dr. ENT indicated that it is a genetic condition.  It is a common condition.  Dr. Google tells me that 1 in 10 people have Otosclerosis but only 1 in 200 people are ever diagnosed with the condition as a result of experiencing a hearing loss.  An individual with Otosclerosis typically begins to lose hearing between the ages of 10 - 30 and the disease is most often diagnosed in Caucasian woman in their mid-30's who are pregnant or have recently been pregnant.  Does this sound like anyone that we know?  How about that for hitting all the risk factors?  It is also commonly diagnosed in families with hearing loss.  We do not believe there is a history of hearing loss in my family.    

My next steps.  I have an appointment with the surgeon at the end of the month.  I have high hopes that the surgeon will take on my case.  I am optimistic.  It's the only way to be at the moment.  I feel so much relief knowing that there is actually a "cause" to my hearing loss.  I'm lucky to be an extremely healthy woman and if this hearing loss is what I must deal with at the moment then I am completely okay with it.  I hope at the end of the day I'm able to once again truly hear the world around me.  I would be on top of the world.  But, if at the end of the day, I'm not able to hear the world around me, I will still be just fine.  I am loved.  I have my family.  It's that realization that made self acknowledging this problem the most difficult task over all these months.  It's why it took me forever to see a doctor.  My family is my world.  And as long as I am around, with them, there is nothing else that matters.  I still have never been happier.  I am truly blessed.

There is also so much relief with finally telling those around me.  I feel as if I can actually breath again.  There is some bounce back in my step.  I have told my direct supervisor and I have told the team I manage on a daily basis.  It was difficult.  But I survived it.  I have not noticed being treated any different.  And in fact, even though my team now knows the extent of my hearing loss, they seem to always forget that we had a conversation it.  But I now have a free pass to go "Seriously?" with a grin on my face every time they come up and start whispering at me.  But there are still the people that do not know.  And it makes life in the workplace difficult.  This is especially true when in conversation with executives at m company.  The people I have to impress.  The people that control my future in the company.  But I am simply trying to take it day by day.

And now I just told a world of virtual strangers (and some family and friends).  But just as with my reasons for documenting my journey to get pregnant and my journey to stay pregnant, it is my hope that someone searching for answers might find a few on my blog.  

Mary