Tag Archives: high frequency hearing loss

…all the better to hear you, dear…

Its been 3 years since our son was diagnosed with sudden onset sensorineural hearing loss and tinnitus.  Its been 2.5 years since we acquired his hearing aid that serves as a tinnitus masker.

The tinnitus masker was a life saver for him.  In the beginning he wore it all the time.  He was not timid or embarrassed being seen with it.  He knew it helped and he didn’t care what people thought.  Very few people commented on it, in fact.  Like everything else, over time, he grew accustomed to the omnipresent ringing in his ear and learned how to block the sound and prevent it from affecting him.  His annual checkups have been uneventful, the hearing loss unchanged.  Even the evaluation he had this past April.  One time he thought he was hearing the tinnitus in his unaffected ear, but it was unfounded.

What began as an “observation” on his part, gradually, but steadily became intense concern.  He merely commented that he thought the frequency in his tinnitus had changed.  Every day he was more vocal about how distracting the ringing was at night and how it interfered with his sleep.  By the end of the month, he was now asking me to please make an appointment to get his hearing re-tested by his audiologist.  He had tried in vain to get the hearing aid to help, but the frequency was so disparate that the hearing aid was in effect, useless.  It would need to be re-calibrated to match the new frequency in his head.

My son has been super-mature and super-responsible with this hearing aid since the day he got it.  He had never misplaced it.  At all times, he always knew where it was (even if it didn’t belong somewhere) he always knew where it was.  Up until a day or two before his appointment, he was still trying to use it at night.

About one hour before his scheduled appointment, he called me at work to ask me if I had seen his hearing aid.  Naturally I was upset.  How could he not know where it was? He ALWAYS knew where it was!  He and his dad looked for the hearing aid relentlessly.  All to no avail. **POOF**     **GONE**

The audiologist evaluated him without the hearing aid and confirmed his suspicion.  The frequency of the ringing in his ear did change, but so did his hearing.  Three short months ago, he fell squarely into the category of having moderate hearing loss.  Now his hearing loss fell into the moderate-to-severe spectrum.  I won’t lie.  I cried.  A lot.

So now we are waiting for the replacement hearing aid.  My son and I have had intense conversations about what his life is like with hearing loss and tinnitus.  It is hard for someone who doesn’t live with hearing loss or tinnitus to understand.  Conversely, I can only imagine that it is difficult to explain if it is something that you have become so accustomed to that you hardly recognize it for what it is.

We have been sparring about his ability/inability to hear properly.  Because my son has adapted to the changes in his hearing, he keeps telling me he can hear just fine.  In fact, he has told me that *I* have the hearing problem, because I am not listening to him.

In an effort to understand how he hears, I took a deep dive into educating myself about sensorineural hearing loss and tinnitus.  I scoured the internet to gain knowledge. I think I finally learned how to decipher the hieroglyphics of the audiogram.  I came across a wonderful website, http://www.hear-it.org where you can hear what it is like to have hearing deficits.  Impressions of Hearing Loss

Thinking that I struck gold, I asked him to listen to the various sound files of hearing loss and tinnitus to see which matched his.  He listened with interest, but in the end said that none of the samples were comparable.  He asked why was I bothering to look at websites like this.  I explained that I love him and I want to help him.  But first I want to understand what he is experiencing.  If I can better understand what, and how he hears, maybe I can be a better advocate for him.

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Sensorineural Hearing Loss and Tinnitus – Our Story

One Saturday night, when he was 12 years old, my son was at a sleepover at a friend’s house.  He started serial texting me around 11pm that night because there was a ringing in his ear that was distracting him and keeping him from having fun.  Puzzled, I switched on my medical-to-mommy remedy brain and came up empty.  He didn’t have pain, so acetaminophen would not help, nor would ibuprofen.  I was at a loss.  My best offer was for me to pick him up from the sleepover, but that was quickly declined. But the texting continued as his friends were finally falling asleep and the room grew quieter, the noise grew louder.

When I picked him up Sunday morning he said he had a lot of fun, except for the ringing in his ear.  Again, I didn’t know what to do.  I suggested he take a shower and get cleaned up from his sleepover, after all 12 year old boys needs showers, like all the time, no joke.

I heard him get into the shower and I started washing dishes when all of a sudden I heard him screaming for me, with terror and panic in his voice.  I feared the worst as I raced to the bathroom half expecting to see blood, or worse.  He was screaming, quite hysterically that he could not hear out of his right ear.  When I finally got him to calm down, he explained that when he turned his left ear to the shower, he could hear the shower clearly.  But when he turned his right ear (the ear that was making the ringing sound) toward the shower, he could only hear it distant and muffled.

We are so lucky to have a pediatrician who answers calls 7 days a week.  I was able to speak with the chief pediatrician who happened to be on call that weekend.  He surmised that it was probably an ear infection or built up wax giving him trouble.  I assured him it was not an ear infection.  He chuckled and ask how could I be so sure.  I told him “I checked his ear with an otoscope that I own.  Don’t ask how I acquired it, but just know it’s not an ear infection. And I don’t see too much wax either.” My pediatrician must think I am crazy, but he takes me seriously enough that he scheduled my son to be his first patient of the day Monday morning.

Monday morning I got my son ready for his appointment and made him breakfast.  As I was getting dressed to go to work (hubby was taking our son to the appointment) I heard my son vomiting up breakfast.  Panic started to bubble in my chest.  My brain started screaming “Heavens forbid, but this is a sign of a brain tumor!”  Stifling my panic, I calmed him down, helped get him cleaned up and then headed to work.  I called the pediatrician before my son got there and reported the incident.

The pediatrician looked him over and gave my husband strict instructions to go directly to an ENT.  Within 2 hours my son was prescribed a short course of steroids and was told to return in 10 days to re-evaluate his hearing.

Ten days passed with no change.  I took my son to the 2nd ENT appointment.  The ENT looked at the results of the audiogram and remarked “Oh, it’s a shame that he has failed his hearing test again.  We will need an MRI of his brain.”

“WHOA! What?? What do you mean he failed his hearing test? AGAIN?? What do you mean again? I didn’t know he failed the first test?  And an MRI? For what, exactly??”  She assured me that I should not panic [too late, lady].  The MRI was just to make sure that ‘things were in place.’  My brain was screaming “She is saying she wants to make sure he doesn’t have a brain tumor!”

I took a copy of his audiogram and tried to make heads or tails out of the triangles, “X”‘s and circles and how everything seemed to be on an even plane, except for the last column.  The last column took a serious nose dive.  It was the first time I read the words: Sensorineural Hearing Loss and Tinnitus.

The MRI revealed that everything was in place and thank goodness – no brain tumor.  But the MRI did not give us a clue as to why, out of the blue, he would suffer hearing loss and tinnitus.  The ENT was happy with the negative MRI results and scheduled us for a follow up visit…in one year.  WHAT?!?! In one year?? How about finding out why this happened?  What else could happen?  How do we protect the remaining hearing he does have?  So many questions….so few answers.

I immediately reached out to several friends and doctors and I was referred to an incredible audiologist who took the time to help me understand what sensorineural hearing loss and tinnitus were.

She explained that while a majority of his hearing was within normal limits and intact, he did suffer from high frequency hearing loss.  She further explained that the hearing loss and tinnitus is permanent, and could potentially, and typically does worsen over time.  The inability to hear high frequency sounds prevents him from distinguishing between certain speech sounds such as F, S, TH and SH.  Example: without facing him, he may not be able to determine if someone were to say fifty or sixty.

At her urging and recommendation, we sought the advice of a rheumatologist and endocrinologist. We connected with a fantastic Otolaryngologist and Professor of Molecular Medicine who ended up inviting us to partake in her genetic research to try to find the cause and potentially, a cure for sudden hearing loss in otherwise healthy children.

The months following the sudden onset of the tinnitus was the most challenging.  The ringing in his ears at night was simply awful.  He tried with all his might to overcome the overwhelming sound in his ear, but it was too much for a young boy to manage.  The most heartbreaking moment was when, in the middle of a sleepless and frustrating night, he sobbed how he would never know what it was like to have quiet in his head.  For the rest of his life…

The relentless high pitched ringing was wrecking his boy.  He slipped into a depression and his anxiety at night was overwhelming all of us, most of all, him.  Again, through the patience and goodness of practitioners who listen and care, his audiologist recommended we get him a hearing aid with a tinnitus masker.  The hearing aid is not used to amplify sound.  Rather, it generates a sound that nearly matches the frequency of the tinnitus.  In theory, the sound of the hearing aid is soothing and is supposed to cancel out the irritating sound of the tinnitus.

The hearing aid helped him a lot in those early days.  These days he does not use it as much, as he became accustomed to the ringing and learned how to drown it out.

Until recently………..

Images courtesy of https://www.audicus.com/hearing-loss/signs-and-types/