Wednesday, April 23, 2008

My Hearing History

This post is going to right back to the beginning of time – my time at least. I am going to answer the ever-popular question about my hearing history. It has come to my attention that I have been vague about my hearing loss history and that is going to be cleared up... right now!

*slaps hand on desk* :)

My little hearing biography starts in the womb.

  • My mother was hospitalized with pneumonia during her first trimester and was given antibiotics. I have no clue what kind of antibiotics they were.
  • When I was a year old, I contracted E. coli, which brought on 106-degree fever. I was hospitalized for three weeks.
  • When I was two years old, I became sick with a high fever. I was hospitalized. Again. This time diagnosed with Anemia. I required two blood transfusions and a three week stay at the lovely Children's Hospital of Philadelphia. This is the year that I started talking and have not shut up since.
  • When I was three years old, somebody gave me the year off because nothing major happened. :)
  • When I was four years old, my grandfather had a slight noise induced hearing loss, so everyone would talk loud. But when he passed away my parents started talking normally. I kept turning the TV up louder and louder. I kept coming down with reoccurring tonsillitis and ear infections but that is not all, my hearing loss was finally detected and I was fitted with a pair of Widex analog hearing aids. In addition to my parents being told I had a hearing loss, they were also told I was mentally retarded. Nice, right? My parents sought a second opinion and it was confirmed that a hearing loss was my only problem. At this age, I was able to equate my hearing loss with my grandfather passing away by saying “my ears died a little like pop-pop.” After that, hospitals and dying was one and the same for me.

To sum it up: I am pre-lingually deafened and no one had any idea what caused my loss because it could have been half a dozen things and one of the other. A psychic did tell me that she felt I was born with a loss (and I didn't utter a word nor did I ask anything about my hearing loss.)

*** See update at the bottom of the post.

  • When I was five years old, I was hospitalized and had my tonsils removed. I was surprised when I woke up that I still had that hangy ball thing in the back of the throat.

Audiogram: 5 yrs old showing moderate sloping to severe hearing loss.

  • I managed to stay relatively healthy for the next couple of years; it must have been all those green vegetables. When I was ten or eleven years old, I stopped wearing a hearing aid in my left ear because it sounded like I was under water and Darth Vader was talking to me.This is the year that tinnitus started but it lessened as the years went on.
  • When I was 16 or 17, I went through DVR and managed to squeeze a Siemens digital hearing aid out of them. It was an improvement but it broke down a lot. There was no significant change to my hearing but to my know it all attitude was a different story. :)
  • Around 21-22 years old, I started to experience these episodes of tinnitus or whatever the heck it was. It would sound like everything was underwater. At first, I would go to sleep with an episode and wake up fine. As the years went on, the tinnitus episodes started increasing in frequency and lasting longer.

Audiogram: 17 yrs old showing severe to profound hearing loss.


  • By the time I was 26, I was up to having an episode once a month for sometimes as long as two weeks.The strangest things brought them on, a strange movement on my jaw, landing hard on my feet and the cold.I stopped chewing on hard candy, attempted to walk softly (which was difficult because I am like a cow in a china shop wearing heels) and wrap myself up in dozens of scarves.Nothing worked.I abstained from coffee, tea, salt, sugar and my favorite, RED WINE. Do you have any idea how hard it was for me to abstain from drinking crushed grapes?! Staying away from all the good stuff near drove me in the ground but it had no effect on my tinnitus. It came and went as it pleased.
Audiogram 26 yrs old with severe to profound hearing loss.
  • In February 2007, I decided to have surgery to repair a deviated septum and upon waking up in the recovery room, I had tinnitus so loud that I could not hear anything. I was completely deaf. My hearing stayed that way for the next seven months. You can read about that day here.

Audiogram after the deviated septum Surgery

Note: This isn't the most neatest audiogram ever because it was a sloppy Audi.

  • In August 27, 2007, I had surgery to receive a cochlear implant. When I woke up, the tinnitus was gone. Hallelujah! I was able to hear subtle little sensations of sound through my hearing aid like my dog barking and dishes clanking but it was something!
  • On September 17, 2007, they flipped the switch and it has been amazing ever since.

Audiogram: Pink line is five weeks post activation with the CI.

I currently wear the cochlear implant on the left side with a Siemens Triano SP hearing aid on my right. My hearing aid is programmed to the max. I cannot have the volume all the way up because I experience sharp shooting pains in my ear. I don't hear anything substantial from my HA except for noise. Why do I wear it then? It keeps the tinnitus at bay and brings a sense of hearing in stereo. I can understand much more with the cochlear implant without the HA on.


You will graphically see as I provided that when I was tested for CI, I bombed every single test with my left ear – zero’s across the board. Quite pathetic I know but what did you expect from an ear with no stimulation for over 15 years.

A month after my CI activation, I was plopped in the soundproof jail and I scored an average 44% on sentences in quiet. The harder test is the words which I scored 8% on, but I managed to score 33% on the phonemes. I get points for phonemes because that means I was able to guess part of the word. For example, the man in the speaker said tick and I said kick – I get points for ick. :)

Five months after activation, I got stuck in the jail again and I scored an average of 79% in sentences in quiet which was well – a 79% improvement. :) My audiologist Jennifer decided that I progressed enough to do the HINT (Hearing in Noise Test) test. She gave me the +10 HINT which means the voices was raised 10dB above the noise and I scored a pathetic 34% on that. Now my one year mapping results – I scored 79% on the sentences in quiet which is not a major improvement from my last test, but I was never one of those people that was aiming for 100% because all I wanted to was to hear something. I feel that I perform much better in real life and the following tests scores prove that. These are the result of the +10 Hint – 74% which is a great improvement from my last score of 34%. My audiologist decided to give me the hardest test – the +5 HINT test which means the voices is raised 5dB above the noise and I scored – 65% :)

Some of you might go, you went through surgery and got your head cut open and you can’t even get over 80% comprehension in quiet! When it comes down to it, I didn’t get the cochlear implant to hit hundred percent in a soundproof booth; I got it to gain anything over zero percent. I was happy with the 44% a month after activation and I am happy with 80% now. However, in all actuality these test scores do not reflect how I feel that I perform in real life. I can see how well I perform just by what I am picking up.

*** UPDATE ***

On December 23rd, 2008, I was diagnosed with Enlarged Vestibular Aqueduct Syndrome.

To be updated...

23 comments:

Alex said...

Finally we get an answer!!!

Great humor in your story, lots of laugh out loud moments. I also finally understand a lot now of how you became who you are, and how you got to be in this situation now!

Great read!

Alex

kw said...

I was just wondering about you on the way home tonight. I remembered you said you lost your hearing after a surgery, but you also said you had hearing loss as a child. This certainly explains it more clearly. Thanks! It's really fairly common they can't pinpoint exactly what caused a hearing loss.

Jennifer said...

Bless your heart! Just a little here and there until last year, eh? I think that would have made me nuts! I wish I had those old audiograms...I don't know if ANYONE has them anymore. I asked my old audie for them several years ago and she didn't have any of them...if Mom doesn't have any socked in a closet somewhere I'm out of luck. Think mine looked about the same for about 30 years, though...just about flat at around 100 decibels in the right ear, nothing in the left.
I loved hearing your story...I didn't know that you'd worn hearing aids since you were a little bitty thing too! Awww!! :)

Seek Geo said...

Wow.. what a great story and it was interesting how you lose hearing twice (hearing hloss as a child and lost hearing from the surgery. Who actually have that kind of story like you out there?! :-D

When I was born, the doctor told my mom that not only I can't hear, I'm mentally retarded. I guess it's common back then. If it happens like that now, they'd easily lose their licenses! :-)

Thanks so much for sharing with us, you are amazing person!!

Hugs!
-SG

Candy said...

Nice post! So, your hearing went downhill over the years! And so much stuff happening too! At least you have a sense of humor about it all. Cool!

Sam said...

How did you lose your hearing to begin with??? (j/k) That is an interesting story and I am sure mine is in parallel..that is, no one knows when or how!

Abbie said...

Alex,

You finally got it :) Thank you for bringing it to my attention that it needed to be cleared up! :)

Abbie said...

KW!

I gave up a long time ago bothering doctors for an answer. I got tired of watching them look at me with their eyes saying, "Child, you are so naive, I have no answers because there is no question. What is done is done." I'm so glad I did this post because now everyone understands! :)

Abbie said...

Jennifer,

My sweet bionic belle, I'm surprised I haven't gone off the deep end :) I'm surprised that my ears don't stick out like dumbo :) I think I have a picture of me as a little one with them... I was rather a geeky looking kid :)

Abbie said...

Geo dear,

What I wouldn't give to go and tell that doctor that they were wrong for thinking that! We are far from mentally retarded! We have all of our x and y's all lined up in a row.

*stomps foot*

You are such a sweet and inspiring person Geo :)

Abbie said...

Candy,

One of my many mottos in life is if you can't laugh at yourself, who are you going to laugh at? Life is so fully of irony and contradictions and I love playing on that.

Its the philosophical trait in me, forget Aristotle, its Abbistole!

Somehow that sounded much better in my head.

Abbie said...

Sam,

That means we are...

terra incognita :)

and how did you lose yours again? :)

kw said...

Abbie and Geo,
It's not just HH/Deaf kids who get labeled "retarded" My oldest son had an unusually small head measurement as a baby. A doctor told us he "might be retarded." Thomas started talking at seven months-- real words. By the time he was a year-old I was pretty sure he wasn't retarded. He sang Happy Birthday to himself-- the entire song on his first birthday!!

Ulf said...

Great summary, and very interesting! Thank you for summarizing it... An example that ought to be followed, I guess...
My surgerydate is still in the blue. I will go to the hospital next week and ask what my status is...
Cross your fingers for me...

Jim said...

What a great story and I love your attitude. Your blog inspires me in many different ways and I love your sense of humor.

Abbie said...

Jim,

Oh my gosh! I just realized how someone might think that I just implied that no one else could lend encouraging words of encouragement, golly no I didn't mean that at all! Besides, you might not have a CI but I think you are a bionic superperson! The information, your genuine thoughts and clear-cut common sense that you churn out on your blog is truly a blessing to read! You are one cool dude for being a Red Sox fan :)

Suey said...

Wow nice story... I have been searching for information to find what is happening to me. I think I know now.

I wear hearing aid all my life, grew up oral and learned ASL in college. Over time I have lost some hearing bit by bit but just this past month was a big drop.

Currently, I am unable to wear my hearing aid as it makes is dizzy and it sounds more muffled. Once I take off my hearing aid I get tinnitus all day til I go to bed. ENT doctor says it's a sudden hearing loss. I think I am seeing more of this and don't think I will get any of it back. Ugh...

Abbie said...

Hi Suzy!

I am so sorry that you are going through this but I want to say this to be comforting but it is common that this happens, just – like – that. I didn't know it until I went to the internet for information. It's frustrating because when that happened to me, I was looking for answers and the answers I found was from other people that it happened to. What made it worse for me was the variations of hearing coming and going, it was like waving a water bottle in my face if I were stranded on a desert island.

Did the doctor do a pressure test or prescribe decongestants? I hope to hear back from you!

Suey said...

Hi!

It's Suey...

My hearing test showed I am now profoundly deaf. There are no fluid in my ears. Pressure test is normal. mri is normal. I just finished steroids to see if I could get some back. (what do I have to lose?) But after reading your blog and looking back, I did lose some over time and went through three more hearing aids in the last ten years. Currently with the muffled sound, I'd have it turned down, it still makes me sick. I have been avoiding it. I should know more next week.

Abbie said...

Suey,

All my hearing test came back normal too and I sat there and disputed that until I was blue in the face. Every time my ears would go off and do their thing, I *felt* fine otherwise. Only a few time could I say I was suffering from a sinus infection. Since I was 16, I went through three major upgrades in hearing aids and nothing helped. The louder they got the more sensitive my hears were. THe muffled noises is the worst, especially when something loud and high pitched happened. It felt like someone was driving a needle right to my ear. It would turn my stomach at times.

How are you feeling after reading my experience?

Suey said...

Hey just saw your cover, will switch back to read it. You look great!
I am doing ok. Just the waiting stinks. I wondered why the muffled? Something I have never heard of. So in your case your hearing test was no normal as in no change? Or your ears just became more sentitive to noise?
I have to avoid hearing aids so I don't tinnitus.

Sharlotte said...

I find your blog rather interesting and useful. Hearing aids is still a way out for those who have hearing problems. However, certain people are deprived of a chance to hear the sounds even with the help of hearing aids. I have learned from www.pissedconsumer.com that they are very different and diverse depending on the level of the deafness. There are numerous hearing aids manufacturers in the world which present their products on the US market.

Faith said...

Very helpful Journey. Thank you for sharing it with me.