A Year in Review - CI Scores

There, I was today at the Audiology Department of the Hospital University of Pennsylvania, sitting cross legged in the same chair that I sat in 364 days ago when I had my cochlear implant activated. Time is a funny conundrum of sorts because some people claim it is relative, others absolute but the fact of the matter is that it just – flies. My temperament was flickering with nostalgic moments of how just a day shy of a year ago I was reintroduced to the noisy world of sound. I still remember how I wanted to commit mass genocide of anything with the consistency of paper. I remember trying to harbor laughter when anyone – man, woman and child spoke to me as if they were practicing to become an extra in an Alvin and the Chipmunk movie. I remember how a helicopter dangled fifty feet above my head and heard not a thing. I remember my emotions running amok – one day I was on a high, the next I was depressed and one-second I would be savoring a sweet melody and the next I would frown at gosh awful noise. I remember my eye twitching because I was too hasty with my volume and I praise the day it was resolved. I remember people telling me to be patient and that I will eventually reap what has been sewn in my head. I remember all of tedious and trivial details as if it were yesterday and yet I can’t remember what I had for breakfast this morning.

It has been a while since I had a mapping, seven months to be exact. I have developed quite a few gripes over the past couple of months. I have completely maxed out on my volume. I still have the utmost difficulty understanding men and some women. I can understand women with no problem but that can be a bad thing because I understand them too well sometimes. When a man says bosom, it sounds like booze. When a woman says thirteen sounds like fifteen and vice versa. I used to be able to hear the airplanes from in the house and now I can't which is disturbing because I live right near a military base and there are constantly flying overhead. I used to be able to hear better in noisy conditions but I think that is due to my CI needing a tune up badly. Edelweiss sounds like anal rice or anal vice depending on who is saying it and lip reading doesn't help me in the least little bit. I walked in and plopped down and unleashed my tiny list of tasks to be tinkered to my dear audiologist.

Right off the bat, she raised my volume which was a dire improvement. With raising the volume, she raised distortion also. She flattened the lows and tweaked the high frequencies. I was able to hear the sizzle of the S’s and rushing air of the SH sound. It sounded nice and crisp. Amazing what just a little bit of tweaking can do. I am happy to report that Edelweiss now sounds like idle vice which is a drastic improvement over anal rice. Whew! It was time to go into the booth!




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.

Patience is a beautiful thing when you have it and you definitely need it with a cochlear implant. I got 364 days of certifiable cochlear implant experience notched in my head and I can’t wait to see what tomorrow and the next day brings to me. Each tick of the clock leads to a more enjoyable experience. Put it this way, getting a cochlear implant is like making a fruitcake – it Is a lot of hard work but the longer it sits, the better it is and my bionic fruitcake has gotten better and better with time! :)

Auditory High of Activation

Reminiscing over the past seven and half months, I realized how wet I was behind the ears as I was learning how to hear with a cochlear implant. Now still in reminiscent mode, I find it hysterical but I did not then. When this super uber technology was turned on into my dormant yet primitive ear, I realized that six trillion months of researching wouldn’t have helped in preparing me for activation.

Sure, I read all the technical details of a cochlear implant!

Sure, I read the software manual that maps my implant!

Sure, I talked to hundreds of people that went through the same thing!

I thought I had an idea of what was to come but – woo-wee my brain had other plans. I was downright disappointed when the audiologist flipped the switch. I had an archive of every single email, forum message, conversation, IM messages that was relative to activation stored in my noggin and none of it made sense. Right off the bat, I couldn’t believe how loud I sounded but realistically I was talking as soft as a mouse. Everything that I wanted to hear – I couldn’t, like cars or a helicopter so close that I could count the rivets. On the other end of the frequency spectrum, what I never heard was coming through in monumental volumes, blinkers, forks against the plate and paper! I quickly found how paper, a material made from pulp dictated my life for the next month. It was interesting that I was super sensitive to the silliest sounds. I could not understand the distinction between a twang and a pop or a hiss and a tick but I was hearing – something. Something was better then hearing nothing at all but I was enjoying the magic carpet ride of digitalized auditory stimulation.

When I went back for my second mapping, I decided that I wanted to pump up the volume! After many warning, my audiologist reluctantly obliged to my wishes. She wanted me to take it easy in the beginning. I had this whole philosophy laid out to justify why I wanted that volume cranked up, I had some hearing time to make up for since I just spent the past six months and 26 days deaf as a doorknob. It was pointless trying to talk some sense into me. If you remember the teacher from Charlie Brown with her incessant droning of, “Wah wah wah”, this is what my audiologist sounded like to me, literally and figuratively. Now I love her but it was just the fact that it was my ear. She pumped up the volume, fiddled with some settings and shipped me off on my merry little way to experience a wider range of sounds. Once again, I became super sensitive to sounds I didn’t hear the week before but everything was loud. It tickled me immensely that everything was amplified with depth and richness. Nothing sounded like my hearing aid used to but I was hanging sixteen on the super galactic auditory wave in an ocean of noise!

By the time I got back to my third mapping, I was really hungry for sound. I am sure my audiologist thought my magnet was on a little tight but I wanted her to crank it up. I wanted to hear everything and I wanted it amplified in amazing volumes! Since I read the manual that maps my processor, I read this little definition of what an IDR:

Input Dynamic Range (IDR) defines the amount of acoustic input that is mapped into the patient’s electrical dynamic range. IDR determines the intensity range (width) captured by the processor for input signals. The HiResolution Bionic Ear System has the capability to capture a very wide IDR of up to 80 dB. The default setting is 60 dB.

In laymen terms, it means that if you have a low IDR the window of sound around you is smaller and it compresses loud sounds more. If you have a higher IDR, the window of sound is a little big bigger and it won’t compress loud sounds as much as a lower IDR will. Anyway, all I saw was the word wide and the fact that it didn’t have anything to do with the width of my rear end, I wanted it. My audiologist warned me again but obliged to my incredibly inexperienced suggestion. As long as I knew that I had all the auditory input available downloaded into my processor, I was happy as a clam. The super hearing wave started to lose its gusto this mapping. Noises that were once so prominent started to fade into the background similar to how a hearing person tunes out sounds. This time, it wasn’t that booming loud sound that I loved so much before. As time went on, it was almost as though the collaboration of sounds started to equalize in my head. My brain was catching up with the new way of hearing. It reorganized the neural pathways to make sense that a click of the keyboard had an extra frequency, women have an extra resonance of high frequencies to their voice and that leaves tinker as they rustle in the wind. This was about the time I was coming down off the auditory high and start teaching my brain how to recognize speech and sounds.

My overly hasty goal of hearing everything that the world was capable of culminating led me to experience foreign sounds and sensations. I am a long-term hearing aid user and I have become accustomed having 80dB of sound being pumped into my ear for twenty some odd years. It is safe to say that I associate my hearing with amplification and nothing else. My wise wisdom for today: throw out that theory out the window when it comes to hearing with a CI – raising the volume on a cochlear implant is not the same thing as hearing aid. It is like comparing apples to oranges, Nordstrom’s to Wal-Mart and a BMW to a Ford Taurus. Some people that are conservative with how loud the volume is but not me, I was a greedy little audiophile and I paid for it.

Well, the auditory high turned into an auditory nightmare and I have no one to blame but I. I developed a multitude of minor issues such as eye twitching, sensitivity to high frequency sounds, white noise, static, and distortion. I’m usually the last to admit my shortcomings but I should have listened to my audiologist right from the start. I walked into my last mapping with my tail between my legs and I let her do whatever she wanted. I was desperate for some clarity. She changed the IDR from 80 back down to 60, which erased the white noise and allowed clarity to come through. The lesson I learned, more is not always better. In comparison between the two IDR’s, I am not missing anything but I am gaining clarity and comprehension. The eye twitching was eliminated by changing speech strategies from HiRes-P to HiRe-S and widen the pulse width significantly. Twitch free for me! Men’s voices were resolved with some gains in the lower spectrum. Finally yet most importantly, she lowered the volume. :)

So after all that I have experienced, I would think it is safe to say I have learned my lesson. After months of auditory rehab, some fine-tuning and finally giving in and letting my audiologist take control – I am very happy with the outcome. This map has been the best map so far. My hearing has gotten better then last month and last month, it was better then the previous month. Just think, if I listened to her in the first place I would not be sitting here sharing this with you. :)

My advice to all you newly activated implantee’s – Throw away what you think you know and listen to what you haven’t heard.

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...