"On Being Deaf"



Intro

My experience being deaf

My cochlear implant surgery and recovery

The big "Turn-on" event

My life with the implant






Intro

This web page was started in January 2017, the month of my first cochlear implant, and is a work in progress, and will carry on all the way through the hearing relearning months ahead of me. (I will be 72 next month, and have worn hearing aids for about 25 years.)

I will ramble on about my experiences in becoming deaf and living with it among people who can hear ("the hearies"). My motives are to get some things off my chest, to share my personal perspectives on my experiences and thus to educate anyone who cares to be educated on this topic. Not everything you read here will please you - so be it.

I can recall, as a kid, being overwhelmed with a group of people (big family dinner) who were all talking at the same time and all (apparently) understanding each other, while I wondered how they could be doing this. I have never been sure if this was a hearing problem or a brain problem - I know for a fact I have a hard time trying to do or think about 2 things at once. I still screw up moving things around in the kitchen if I have 2 things to do - put the milk back in the fridge and get a bowl out of the cabinet. So possibly, my brain has never been able to "multi-task"; so I could never keep track of two simultaneous conversations, whereas other people seem to thrive on doing that. (I was in a group of eight people 2 days ago and 4 of them were talking simultaneously. How is that possible?? Really.)

I have much natural anxiety knowing I'll be in a group of people. If Deb were not here, I would never put myself in that situation today. I have to sort of meditate my way through that anxiety: "You'll be fine" / "You have done this many times before." / "It will be over in a few hours, then you can relax" / "It is never as bad as you anticipate."

In truth (ask Deb), my brain burns out after 2-3 hours if I try to understand what people are saying. I am exhausted at that time. (I'll explain more later.)

I have a poetic phrase about this anxiety: "I am never so alone as when I am with a group of people".

And it gets even lonelier when someone says "Dave's deaf" or "Talk slower, Dave can't hear you" - suddenly there's no faking it. There's everyone else over there and way way over here there is Dave.

Let me close this intro with high praise for Deb. She makes some mistakes sometimes (more on this later), but in reality she is my hearing connection / my translator / my ambassador with the world of people.

The topics below are in no special order. I will just get them down here, and re-organize the whole thing whenever (if ever) I finish it.



My Experience In Being Deaf


WITH MY HEARING AIDS IN PLACE
What I *can* hear - vowels
What I *can't* hear - consonants

If someone were to speak the very first sentence of this "Being Deaf" page, here's approximately what I would hear:

O i age I i ale o aou y eeiees i eoing ea a iing i i aong eole o a ea ("e eaie", e a e).

If the person speaks louder, I will hear:
O i age I i ale o aou y eeiees i eoing ea a iing i i aong eole o a ea ("e eaie", e a e).
because people only make vowels louder, the don't make the consonants (sh, t, s, c, th, f etc etc) louder.

I may infer some of the unheard consonants by the vocalization of the vowels, by reading lips and from the context of what the conversation is about. But for the most part, I would not actually hear consonants. And while my poor brain is racing to assemble possible words and then construct possible sentences, the speaker is racing onto the next sentences, while the crowd is laughing or starting to talk on top of what he/she is saying.

Try doing that for a few hours.

I can last 2 maybe 3 hours by turning my brain on and off ocassionaly, but eventually it overheats, smoke starts coming out of my ears, and I kick Deb under the table and twitch my eyes toward the door.




Why hearing aids don't work for me any more

Hearing aids are amplifiers. They work for ears that are working properly, but poorly. The poorly working ears simply need a boost of the input sound levels, they need the amplitude turned up and most often especially for the higher frequency sounds (consonants like sh, k, t, s, th, c, ch, f etc etc). Once the poor ears get the amplified sounds, they do a decent job translating those into nerve signals up to your brain.

People who suffer moderate to severe hearing loss have "poorly working ears."


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Ears that are not working properly cannot be helped by amplifying the input sound levels. These people (like me) have a "profound hearing loss" - most often at the higher frequencies of the consonants in words. By the time the high frequency sounds are amplified to the level that they can be heard, it physically hurts - a LOT !. These ears (the inner ear mechanisms) simply are not working any more. They cannot translate sound input to the proper nerve signals. Cochlear implants, bypass the damaged ear machinery and translate the sounds electronically into proper nerve signals. The non-working ear parts are not used any more.




"Talk slower, Dave can't hear you."

This is a no-win scenario for poor Deb.
(My alternate first sentence was .... Some problems are not solvable.)

We'll be in a group of people and they're yaking away. She knows pretty much exactly what I can deal with (slowly, clearly spoken words) and what I cannot deal with (normally spoken words). And ..... she wants to help me fit into the discussion. But I know it's hopeless and I just want to stay anonymous and not burden the group conversation. This is an important point that I need to get across.

I very strongly do not want to influence how people carry on their group conversations because I am there. This is really important. Certainly, if someone needs me to hear something, they need to look directly at me and talk carefully. But I need people to behave and speak normally when I'm in the group - unless it is something that I absolutely must hear.

If I am quiet, people just forget I'm there, and I blend nicely into the room. But (bless her heart) Deb wants to help me and will drop the line "Talk slower - Dave can't hear." Now I no longer blend in. I am no longer anonymous. In fact, now I am the focal point of everyone's attention. I have no idea what they've been talking about, but everyone is now looking at me trying to figure out how to fit me in.

It's a no-win for everyone. I can't fit in without a major overhaul of how people normally talk in groups. And that is not reasonable to ask.

There simply is no solution.




Not Believing Anything That You Hear

Ultimately this characteristic of poor / defective hearing has a huge impact on your wanting (or not wanting) to talk to people. It is ocassionally laughable (you mis-hear a word, like "he has a gun" instead of "he had fun"); but it is awful most times.

After long years of missing words and mis-interpreting words, your brain quietly slips into the mode that it does not believe any words - even the ones you actually heard correctly. This is mentally devastating because you become (what I call) "brain deaf" - you really got 50% of the words correct but you believe that you got zero% correct. So ultimately, your brain throws away even the words you got correct, because it doesn't know which ones they are.

Identifying words becomes too hard. Takes too much brain processing and you're not going to believe what you think you heard anyway. Give up.

Again, there simply is no solution.




Deciding to Get an Implant

This was not an easy decision. I thought about it for 3 years, looking at it from every possible angle and asking myself all kinds of questions: "What if .....?" "What if .....?" "What if .....?"

I had to get to the point that, from a conversational / social / personal relations point of view, I had nothing left to lose. I could still hear some sounds, but had extremely poor word recognition / conversational abilities. Over the years, as that deterioratd slowly, it had definitely eroded my social "persona". No one talked to me - they talked to Deb, and if she felt I had to know it, she carefully repeated it to me. Over the long haul, that's gets to be a burden on everyone.

I was most afraid of the fact that the surgery would destroy any residual hearing that I had in that one ear at that point, and there is no going back from there. Being a guy who needs a "backup plan" behind every decision, that was a tough wall to get over.

I also had to come to grips with what I expected from the implant. I had read enough on the internet to understand that my hearing would never be the same ever again, and that the sounds from the implant would be mechanical, strange, very hard to interpret (and that is a very honest fact). So, I went into surgery expecting not to have an understandable conversation for at least 6 months, maybe 18 months. I warned Deb and everyone else about this "Don't expect me to hear again the way that normal people hear. It will take at least a year for me to learn to understand words". That's what I hoestly thought, and I had come to grips with that, before I opted for an implant. (Amazingly, happily, my hearing recovery has been very unusual in how fast and how much my conversational ability has progressed. But I did not know this when I went into surgery.)

But, as Dayna (my audiologist) says .... "Sometimes you have to take a 'leap of faith' to get where you need to go". So .... I gathered up all the faith that I could and leaped (leapt?).




My Cochlear Implant Surgery & Recovery


Jan.13.2017

This was a 2 hour surgery. Piece of cake (I was "out" for about 3 hours total). Last thing I remember was saying "goodnight" to the nurse in the OR. Waking up was awful. Double vision, felt like a really bad hangover. An hour later, it was gone, but I was still shaky. Mike and Deb got me home and into my recliner, where I stayed until the next morning. Slept amazingly well.

They gave me prescriptions for antibiotics (2500mg / day !!) and pain. Night of the surgery, I just took one tylenol. I had to take half doses of tylenol for 3 - 4 days. Pressure / pain was not bad, but was very annoying.

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They put a plastic cup / protector on the ear and told me not to touch it for 5 days. It's feels like a tight headband on top of an earache. One of the written instructions says "Don't blow your nose for 3 weeks". I have no noticeable swelling anywhere, but my jaw and neck ache a little and I can't open my mouth all the way, my jaw hurts back near my ear when I do that. Minor stuff.

Lexie (my cat) is very nervous about my head gear.

After 2 days the head cup got to be irritating around the edges, but I was too concerned to take it off. Both the doctor and nurse told me to leave it alone for 5 days.


This will be important when they activate my implant

jpg The doctor said he was able to insert the wire very far into my cochlear, which means there are more electrodes in there now. These are all along the wire and used to tune the sounds going into the nerve to your brain. The more electrodes that get into the cochlear, the finer they can tweak the nerve signal. This is very good news.

Each electrode is stimulated by the microphone and electronics that make up the implant package. The electrodes are somewhat similar to piano keys, ranging from low frequency bass notes to high frequency trebble notes.
jpg For example, if they can get 20 electrodes into your cochlear, they have 20 "piano keys" that can be tuned (by computer programs). Upon receiving the total sound input from the microphone & electronics each key will stimulate the nerve cells at a specific frequency. Your brain (hopefully) reconstructs the sound that went into the microphone, using the 20 little (digital) frequency packets sent to it by the elcectrodes. It's not a perfect replication of the real world analog sound, but if there are enough electrodes, it can be good enough for your brain to eventually learn how to interpret correctly. It is reported that this re-learning takes from 6 to 18 months, and has varying degrees of success, in terms of word recognition. (Almost everyone with implants, still needs to read lips.)

So, with this cochlear implant package example, your brain can now only recieve 20 specific frequencies. The ears of normal people recieve almost an infinity of frequencies, because normal ears are analog (continuous frequency spectrum) while cochlear implants are digital (a small number of chopped up frequencies).

Note: The auditory nerve does not atrophy.
This is the key to how deaf people can hear by using a cochlear implant.
Despite that the auditory nerve of a deaf person has not been used (or has been seriously under-used) for years (or decades), the nerve does not atrophy (wither away). It remains "ready to serve" whenever you give it a signal to send to the brain.

Is it better than being deaf - YES IT IS!
Is it as good a normal hearing - NO IT AIN'T !


3 Weeks post-op visit:Doctor said that he got all 22 electrodes into my cochlear, which is the best you can get (in today's technology). Looking forward to activating this thing (3 weeks from now).


5 Days After Surgery

My ear felt a little "tight", and the skin was wrinkled from being bandaged for 5 days, but things look pretty good to me. There was only a small amount of dried blood on the gauze pads they had applied. (I didn't know what I was going to find under that plastic cup.) The incision scar is well hidden by my ear.

There is a purple-ish bruise streak for about 6" down my neck, from the surgery. (After 7 days it started to fade away.) The purple mark on my ear is a marker the doctor put there to be sure the guys in the OR picked the correct ear !! I cannot wash it off. Hopefully it wil dissolve in time.

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8 Days After Surgery

jpgThe implant ear feels plugged all the time; like I have a head cold (I don't). I can temporarily unplug it by titling my head. Probably due to the coil moving inside my cochlear? Will this effect go away?

I still use a hearing aid in my other ear, and hearing is a little strange now. I hear zero out of my right ear of course, so my "total" hearing is down (to half?). When I crank the left hearing aid up so I can hear better, it physially hurts BOTH ears and my head !! I expect this will work out after we turn the implant on and I can hear without cranking the left hearing aid so high. But until then (next month) we have to live with even lower hearing levels than before. (Poor Deb.)

The discomfort has decreased steadily since day #3.

I am sleeping with a knit cap to protect that ear. About 1000X more comfortable that that plastic cup they gave me.

Deb has been a wonderful "nurse" and Mike worries too much about me :)


3 Weeks After Surgery

Checkup showed all is good and well-healed. He saw some fluid behind my ear drum. That is not unusual, but until it goes away, that ear will get blocked up from time to time - meaning it will feel like I am under water or like I'm in a descending airplane. I have already felt that effect and it is really annoying.

We are not activating the implant for another 3 weeks, as planned. Don't know why they wait so long after the surgery.




The Big Turn-On


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Yesterday was the big day.

I expected very little of this event, and to go home worried about the future. In fact, the appointment went just great, the experience was not disappointing and I went home very optimistic.

jpg For sure, what I hear is a buch of noise. Nothing like "normal hearing". I will try to describe this: all real sounds ("Hello Dave") are wrapped in weird other-worldy cyborg-like metallic noises, chirps and squeaks that are as loud as the real sounds. This is not "background noise"; it goes completely away when the real sound stops. It is noise added to the real sound. It is not "white noise" - like I said, it's squeaks, chirps, beeps, chimes ..... sounds like that. If I concentrate I can hear the real sounds, but it's not easy to pull it out from the noise. However .... (1) at least I can hear something (2) this is much better than I expected, and (3) they say with training and practice, I will get better at interpreting what it is I hear.

The instructions were to leave the new device on and my other hearing aid 100% of every waking hour. The brain has to re-learn the signals being sent into it. They are now very different in character from the signals it has been getting for years, and also there are signals it hasn't received in half a lifetime. Also need to learn to live constantly impacted by sounds - now, it is NEVER quiet - that is really getting to me. No complete silence - there is always some kind of sound. It's kind of annoying, really.

It is strange, but I hear my voice better, and recognize the words better, when I whisper (!), rather than when I speak normally.

At this moment (early morning, day #2) I feel the device is too sensitive. I have the volume turned down to the very lowest level, and I hear EVERYTHING - my breathing, keyboard and mouse clicks, the fan in the next room, my slippers touching the floor, the floor squeeking, tissues sliding out of the box, the water faucet sounds like a train of chains banging together. And the "cyborg noises" that surround the real sounds are just as bad. It's actually very annoying, and I'll ask the Dr to dial it back next week.

What it Looks Like

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That gizmo above is the processor that sits outside my head and is held in place by a magnet that links to one inside my head (outside my skull, under my skin).

The safety clip goes to my shirt collar to catch the processor if it gets bumped off your head (which is not hard to do).

Footnote: There is nothing (like a connector of any kind) that sticks out of my head. The inside electronics and outside processor hold each other via magnets. People dont know this, and a few times when I reach up and take the processor off to show them, they cringe or jump because they think something is going to come out of my head or that there's a big hole in my head! There isn't!




My Life With The Cochlear Implant


Two Weeks After Turn-On

The brain is an amazing thing (even old brains). Mine is getting very used to the sounds (signals) coming in from my audio nerves, even though the normal (with hearing aid) ear sends in signals very different from the cochlear implant ear.

I am taking off my "good ear" hearing aid for about an hour a day, to just hear only the sounds from the implant ear. Very different, very weird, but understandable if I concentrate. And together, both ears are doing really well. The normal ear sounds "natural" but it's missing the higher frequencies; the cochlear ear sounds very mechanical robotic, but accurately picks up the higher frequencies. The brain combines them, and it's kind of amazing how well it does.

jpgI have to comment: I have "post linqual" deafness, which means that I knew words and the language very well before I went deaf. This is a big factor in how fast I am adjusting to recognizing words with an implant. I already know what to listen for, when people speak.

Word recognition is very good, but noise recognition ("what is making that noise?") is still really bad. I cannot tell what is making the noises I hear. The implant is very sensitive to picking up sounds (MUCH more than I had expected), but all noises still sound the same (chirps, squeaks, clangs, chimes, beeps). They say this will get better over time. I hope so.


Tweaking My Hearing Aid (The "other" Ear)

Went to show off my implant to the wonderful audiologist who started me down this path, 2 or 3 years back. "Sometimes you have to take a 'leap of faith' to get where you need to go", she says. I agree. (Actually I think that Thomas Aquinas said that 500 years ago, but for 'blogging purposes, I will credit it to Dayna.)

Anyway, she is modifying both the mold and the wire of that hearing aid to fit into my ear better, and it should help with how my own voice sounds in that ear. We are definitely fine-tuning things at this point.




This is roughly what voices sound like through the implant processor. But (as noted above) there is also a "telegraph key" pinging sound over every vowel (not heard in this audio file) plus the squeaks, chirps and chimes that are the other room sounds:





Music

What music sounds like through the implant is a real tragedy, and I don't see any future solution to this problem.

Listening to music with both ears (one hearing aid, one implant) through my basement stereo system, all I hear are the base notes (I mean the REALLY low thumpings) and everything else sounds like ukeleles. Ironically, I do have one CD where a uke is the lead instrument (with bass and drums behind it), and it sounds very much like it should. That one CD is enjoyable. But all other music sounds awful this way.

To listen to music, I remove my hearing aid and use ambient-sound-deadening headphones (just the one side of the headphones for that ear). That is still a pleasure, but of course it's monaural.


One Month After "Turn-on"

We did a soundbooth hearing test today. Listened to beeps of various frequencies and loudness, single words (male and female voices), complete sentences (with and without background noise). I scored 35% - 50% for the word tests; those are up from ZERO before the implant, and the doctor was happy with these results at only one month.

I don't feel the tests are a very accurate quantificaton of my actual experience. In reality (around the house), my word recognition is enormously improved from before the implant; my participation in normal room conversations is greatly improved. I would call it 1000X better than before; so I don't quite buy the low test scores. I explained this and we discussed why this may be so.

They tweaked the programs in my implant, and even gave me one designed for music. I haven't tried this out at home yet, and I don't have a lot of hope, but then again, we are only into this for one month now.

I am scrounging around on-line for hearing exercises, and for good computer speakers, but this may get into Pandora's box - is my little netbook sound card capable of driving good speakers to replicate high quality sound???

Update (next day at home)

I went to the library and got a few audio book DVD's to play on my basement stereo system. One is playing now, and I hear it perfectly well, word for word. I expected to be struggling with this for weeks, as I expected it to sound horrible - like the tests we did yesterday. But in terms of word recognition it sounds just fine. I don't mean it sounds like normal hearing (it's still mechanical and robotic and noisy), but I understand virtually everything that is spoken on the DVD at a normal speech rate. (And I am not reading lips in this case!!) Keep in mind that the basement has no background noise, as you have in a restaurant or at a party. And again, around the house, having a one-on-one conversation is easy and about 1000X better than it was before.

I still cannot understand people who talk much faster than normal. Probably never will. It's partly my "old man" attitude - I say "slow down or shut up".




Six Weeks After Turn-on

Making continuous but slower progress with hearing / interpreting through the implant. For normal conversation in a quiet room, it is just fabulous. Even in a car that I am driving, listening to the front passenger (my implant is on the right side). The electronics have some kind of a white noise reduction feature, that mutes wind and driving noises somewhat. This helps enormously. I don't have to turn to the passenger (to read lips) and she doesn't have to turn toward me.

This week I focused on my left (hearing aid) ear. The "other" audiologist made a new ear mold that fits better, and she boosted the amplitude of the lower frequencies (250Hz is the lowest the hearing aid can go). This had a very good effect on the combined sounds that I hear from both sides now. I haven't heard this well in 30 years !

Listening to the TV through it's own speakers is greatly improved from before these "fixes". Although it is still not great.

It's all kind of strange. I can hear the keyboard clicks of my wife texting on her cell phone two rooms away! But still do not understand every word spoken to me. I still read lips a bit and infer the words, based on the topic. (see below).

Inferring individual words from a sentence

This is a fascinating topic that hearing people never think about.

Did I hear "blue" or "glue" ? .... well what your brain does without thinking about it is it decides what the word was based on what you were talking about. If you asked someone "What is your favorite color?" and you hear "_lue", your brain automatically fills in the "b" for you. This is how ventriloquists can talk without moving their lips, yet you think they are saying all the correct letters - they are not. They substitute "g" for "b" and "n" for "m", etc etc because (1) they wont have to move their lips and (2) your brain will fill in the correct letter, based on what it thinks the dummy is saying. The ventriloquist says "Klease nove gack" but your hear "Please move back" because that's what fits the conversation.
Deaf people have to do this very much more and much faster than hearing people, because we hear so many more garbled letters.

Is't knid of wierd hwo yuor brian wroks.

Very cool stuff.




Batteries

There are two batteries in the processor, and it eats batteries at the rate of 2 batteries every 2 days. So, if I live another 10 years, the processor is going to use up 3650 batteries. They gave me two boxes of batteries, but they are going fast.

I was recently told that what eats up the batteries is the power needed to transmit the signal through my hair and skin. So .... next week I am shaving a small circular spot on my head to hopefully use less power. Not sure how much of a difference that will make, but it's worth a try. I must have thick skin because the holding magnet had to be the strongest one they make, so I have a battery drain problem because my skin & hair are too thick.

There are other designs with rechargeable batteries that sit in an additional unit behind your ear. I opted for this newest streamline design.




Telephones ... an ongoing problem

Trying to listen to a land-line phone recever is basically impossible on the implant side or hearing aid side. Removing the hearing aid can sometimes work if the person voice is clear and the line quality is good, but that's hit or miss.

Turning the land-line phone speaker on and holding it away from my head is do-able, but I can miss a lot of words and the conversation easily gets to be a problem, and I generally hate it. "Hi Mr. Leo"..... "Did you say Hi Mr. Leo?" .... "Yes" .... "Oh, Hi".

Cell phone is worse. Texting to my cell phone is the only possible option, and it's my favorite !

My talking-on-the-phone option is still the captioned phone that I have in the basement. Most people (on the other end) get used to it pretty quickly once I explain why there is this 6-7 second lag before I respond each time. Most people talk slower and clearer when I tell them, and I can sometimes understand them before the captioning is finished - by the way, the captioning makes mistakes, just like TV closed captions, and that really screws things up. Happily that's not too often.





15 Weeks After Turn-on

This was the "3-month" exam. They did tests: (1) beeps, (2) single words with no background noise, (3) sentences with no background noise and (4) sentences with background noise.

My test results: (1) I didn't ask; (2) zero words understood; (3) all sentences understood; (4) zero sentences understood.

We talked a lot about this. I told them again that my every day conversational hearing is wonderful. In a quite room, I have no problems talking / listening to conversations. Noisy room are a lot harder (better than before, but still very hard for the noise.)

I told the audiologist the volume (loudness) of the impant was too loud. I keep it on the lowest possible loudness and wish it was lower. We talked and talked this over and over in light of today's test results. She ended up actually increasing the volume and making me promise to keep it at "level 6" and never go lower than "level 4". I reluctantly agreed. She also tweaked the 4 programs in the implant for lower frequencies, background noise and some other magical stuff, and gave me this card for my wallet. I promised to do as told, but I was (am) skeptical; she was (is) confident that it will help.

We talked about how my brain must continue to get used to (what I consider) "loud annoying sounds". She says "the world is a noisy place"; (but I am used to a very very quiet world). I talked about "signal to noise ratio" she talked about me doing what she tells me to do, so okay let's go her way I figure.

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Today I have it set at "Scan / level 6". My voice sounds like God's voice in the CB Demille Bible movies.



Cheers for My Cochlear Audiologist

My poor audiologist, Dr. Nicole S., has to put up with my relentless questions and me explaining to her ( ! ! ) all about sound and vibrations and how the implant designers have to correct their software to do this and that.
She bares all of that with patience and a smile.
So here is a big cheer for Dr. Nicole who is guiding me through the jungle of new noises that the world is feeding into my head.




Background Sounds Erase Voices ????

Listen .... here is an observation I just made and a theory about implants, noise and spoken words.....

When I speak normally in the kitchen, my voice is *very* loud to me. Annoyingly so.

I just ran the food processor (it's like a blender" and it makes an awful loud noise).

While it was running I spoke some sentences in my normal voice.

I did not hear my voice at all. Not at all.

So .... the very noisy food processor, when heard though the implant, virtually erased my voice. It did not add noise on top of my voice. My voice was gone. Zero. I did this several times.

THAT is why I cannot understand words when there is background noise.... the background noise (through the processor) did not ADD on top of my voice, and it did not "drown out" my voice. The background noise was just about as loud as my voice alone sounds to me. It should have added on top of my voice and I should have heard both VERY VERY loud. But that is what not happened - the implant processor effectively erased my voice and the only signal I got was the food processor at it's normal loudness.

It's like instead of filtering out the background noise, it filtered out my voice ????

If this is how the processor works, I will never hear words in a noisy background.

?????????


Follow-up Comments on This Topic

I am going to leave my confused last paragraphs as they are written there. Truth is that my cochlear audiologist responded to this and her response is complex and detailed, and I don't understand all of it right now, but I hope to some day downstream.

I do think it's important for me to record my observations, confusions and questions here - we implant patients have entered a whole new strange world of sounds and mixes of sounds. It takes time for our brains to re-learn hearing things and why sounds don't add to each other, but they mask over each other.

People with normal hearing don't have to think about sounds, but we "deafies" have to throw a bunch of brain time into interpreting what we hear.
It goes along with the observation that everyone thinks a cochlear implant "restores normal hearing" -- oh sure it does -- like giving a blind person a white cane restores their sight !!

So let me leave this topic here, and come back when I understand the answers.




jpgSometimes It Pops Off My Head

The external sound processor is the button-like gizmo you see on the right. There is a magnet inside it that "sucks" onto a magnet that is inside the electronics under the skin. There is no connector that sticks out of my head; the external gizmo just pops off when you pull on it.

There are several strengths of magnets that can be used, depending on how thick your skin and underlying tissue is in your head. I have to use the 2nd strongest magnet availaible (I have a thick skull ??!!).

Several times, I have knocked the processor off my head by accident (scratching my head, using a hat, snagging the safety thread). Very smart to use the safety thread & clip attachment.

A few times, the processor has been sucked off my head by a metal car door frame and a window frame (porch storm window while I was pulling the screen up). It once got sucked off onto a metal post that I leaned against. This can be startling (you go instantly deaf again!), and if you're not careful and you move, it could pull the safety clip off your collar (this has not yet happened to me)

On the good side: the processor has fallen off my head onto a hard wood floor twice since I have it. No damage at all - still works fine.





Using Bluetooth Accessories: The TV Gizmo

I tried the TV bluetooth (TV-direct-to-implant) gizmo when I first got the implant. I felt it was useless at that point. Sounded like noisy garbage. This week decided to check it out again. I figured that I have since gotten used to the robotic mechanical implant sounds, so maybe I can use this thing. (This is 4 months after "turn-on".)

I was right - I find it much more useful now. I am not shy about turning up the volume (TV and implant processor) more than I did before, and I "understand" the voices better at this point, so much of the spoken dialog is clearer. I actually turn off the "annoying" closed captions now when I use it. Background music is still very annoying as I cannot "hear through it" to get to words being spoken. Background TV music is just useless annoying noise to me.

It took a few months of implant experience for me to warm up to the bluetooth TV gizmo. Now I use it whenever I watch TV or DVD movies. It works for streaming channels also, like Netflix, Amazon, etc.




6 Months After Turn-On

Well, it's late August (implant was turned on in late February) and things are going very well for word recognition and normal conversation. No big changes, just getting slightly better and better, slowly, subconsciously. Identifying noises is still nearly impossible - everything sounds like slight variations of a bunch of chirps, clangs, squeeks so it's hard recognize what the sound is coming from. About 50% of the time I can identify the hiss of wind and blowing air (like a fan) and also electric motor whirring, and the cats' meows, floor squeeks and water out of a faucet. But that means that 50% of the time I cannot identify those sounds. I actually don't think that will ever get better.

Music is an ongoing tragedy. Music sounds like a band of ukuleles, banging sticks, whistles, tweets. Using a headphone on my other ear (hearing aid removed) sounds 100000X better than the implant ear. I don't think the necessary technology (for music through an implant) will get better in my lifetime.

The implant eats up two batteries every 2 days. This goes for both processors (they gave me a backup processor). According to Dr. S they should be lasting 4 days - but that is definitely not happening. I went through all the batteries she gave me back in February and bought another 3 boxes. I never got it clear about what the actual cost is because I have Medicare plus supplemental insurance so what I paid out of pocket coud be just a small part of the price. This bothers me enormously - I mean the ecological mess of trashing batteries every day like this for the rest on my life. But ..... I have no options, and I'm very glad to hear again.




9 Months After Turn-On

My word and sentence recognition test scores, and my sound recognition, went up considerably, even though I don't notice any difference in everyday life. I still don't get the test data, but it doesn't matter to me because, in reality, I am very happy with this implant. I am now at the point that the perfect silence when I take it off makes me nervous, whereas I used to like the quiet.

The brain is an amazing thing. It is continually, automatically reprogramming itself to better understand the world around it. And it changes its own programming, as needed, when the input (like from your ears) changes.



My safety thread design

I have tried several ways to attach a safety thread to the Cochlear processor, to catch it when it gets knocked off (which it does because I am not too careful). Today I came up with this. Today I took an old (and now useless) hearing aid, drilled a few holes in it - had to do some supergluing when I cracked it - and did what you see here.

It is working very well. I am sure the Cochlear design guys could make a more elegant version of this. In fact I'll probably have my hearing aid audiologist (that's my other ear) make a new casting of my ear so I can improve on this.

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Computer / Cell Phone Speaker - WONDERFUL !!!

A burst of curiosity / inspiration hit me and I plugged my cell phone into my computer external speakers, and it is fabulous. Loud and clear !!! I highly recommend anyone who needs better cell phone hearing give this a try. I'd say, even if you don't have computer speakers, drop $30 and buy a pair to try this out - must be speakers that you power from a wall outlet.

I also have a captioned land-line phone and a bluetooth gizmo into my cochlear implant processor, and this speaker setup is much better than both of those.

Obviously this is only for at-home phone calls, but come to think of it, maybe a car setup would also work (?)

NOTE: you don't need a computer. Just get an inexpensive pair of speakers (BestBuy, Ebay, wherever). The computer is not involved in this. You can put the speakers anywhere in the house.

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The Cost of My Sound Processor Batteries

Like they say "your mileage may vary". but this is how much I personally need to spend on batteries. I eat up 2 batteries every 2 days. This is maybe only half the life that other people are experiencing, but I have a year's worth of experience and what I said is true for me.

I just got 180 batteries and the billing price is $108. That's 60¢ / battery = 60¢ / day at the rate I am using them up.

My insurance pays almost all of that (I will update this comment when I get their final billing).