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Transcript / Minutes
Transcript from 11/18/09 General Meeting
Transcribed by Chrisann Hyland and Linda Cancilla
BUFFALO IMPLANT GROUP MEETING,
NOVEMBER 18, 2009
JOE KOLIS: Hello everybody. Thanks for
coming out tonight. We appreciate you guys coming out
and looking at what our group has to offer for all our
cochlear implant users and also from our speaker from
Advanced Bionics.
We'll talk about a couple of very pertinent issues
to us. I just wanted to go over a few things before we
get started with Kristine.
For those of you that don't know me, I'm Joe
Kolis. Kathy Maroney is the Vice President. She
couldn't make it today. Our secretary is Jennifer
Hill-Nowacki. Her husband is getting home late from a
business trip so she's going to try to be here. Our
treasurer is Sam Spritzer back here. Our Board of
Directors: We have Craig and Jackie Carpenter back
here. Shirley Jaskier and Gale Cronin couldn't be here
tonight.
Along with being on the Board of Directors, the
newsletter that gets put together each quarter, Craig
and Jackie do a lot of the work on it along with
Shirley. So we owe them a lot for all their time,
getting the articles together, getting it laid out and
getting it all mailed out from Buffalo Hearing and
Speech. So we always appreciate their efforts.
We have our 5-K race coming up on Saturday. It's
at 11:00 at Grace Lutheran Church in Hamburg. You saw
some of the baskets that people brought in. Part of
the race we get a portion of the registration fees, but
we also get to keep the money that we raise on the
Chinese auction. So these baskets go a long ways to
raising money. That keeps our expenses as low as we
possibly can. We have the use of this room and we also
have all our newsletters for the paper, postage,
publishing, it all adds up.
And our membership fees are $15 a year to continue
to get the newsletter. If anybody needs to know if
their membership is current, just look on the back of
your newsletter, the date will be on there. At any
time you can forward the $15 over to the PO Box that's
on the website.
A few months ago we had a survey to talk about the
future of our group. And overwhelmingly the results of
it were that people want our group to continue. We did
hear suggestions from the group, from the responses
about things we need to do in the future.
One of them for example was to provide more social
time. We have the summer picnic; that's pretty much a
very social atmosphere. This year the weather was
iffy, but it turned out to be a great turnout. The
food was catered from Desiderio's and it was very good.
All the desserts were great. No one went away hungry.
And it was good to see not only our old friends, but
several new people showed up as well. So we were very
happy with the turnout there.
Along with that, Advanced Bionics has agreed and
is sponsoring our pizza that's arriving in about a half
hour or so. So again thanks to Advanced Bionics for
that.
So we're going to take all the survey results and
take it to heart. Your Board of Directors and the
officers are all looking at ways of applying the
suggestions that you all made. So we do appreciate it.
I do want to mention a couple volunteers as a
result of the survey. Father Bob McCarthy here has
taken over our website. If you haven't gone onto our
website lately, go on. It's totally up-to-date. Great
directions to this meeting, to this building. We
really appreciate Father Bob stepping up and doing
that.
If you recall, Lisa Hill-Nowicki works at Rich
Products and they recycle all the cans. She collects
them for us. In the past we've kind of rotated that
duty around. The Shefflers with the twin girls that
are cochlear implanted, they volunteered to take over
for a while. We had other volunteers to help with
that. So we'll rotate that around quicker so not
everybody has to take a long time on that.
The officers for 2010 wanted to let you know that
we've agreed to stay on for another year. And it was
really Sam back here as well as the other officers.
And it really is a result of us being able to get more
people involved. The baskets alone save us a lot of
time and help spread that duty around, Father Bob
getting our website current, the Shefflers taking over
the pop. That really spreads out a lot of our duties
that a few of us were running around doing. So we
really appreciate you guys stepping up and taking care
of that.
As our speaker, we have Kris Rafter from Advanced
Bionics. She's back there and she's from Philadelphia
and she's graciously agreed to come and talk to our
group, and here she is.
KRIS RAFTER: Well, thank you. And I am from
Philadelphia most recently, like the last 30 years that
I've been an audiologist. But just so you know I did
go to college in Rochester, so I'm partially a Western
New York person. So I hope that counts too.
So thank you for having me. I am an audiologist
and my background is primarily in adult audiology and
medical audiology, but I've worked with cochlear
implants since the single charge. So I hope I can be a
resource to you tonight.
I heard suggestions that you might be interested
in just working with your audiologist when you go for
programming, how to get more out of that, and also
maybe a little bit about bilateral implants these days.
So I thought I would bring that together and talk with
you.
And then just about a week ago I had some feedback
from a recipient of an Advanced Bionics' device who had
been implanted for over nine years. And I had attended
her programming session at the very end of October.
And she sent me an e-mail and she said something with
the word "wow" in the subject line of that e-mail.
So in putting this together and thinking about
what you all might want — you have different devices.
I think some of you have may have had your implants
longer, 22 years someone, and some shorter periods of
time — you've reached a certain level of benefit, but
you want more, you crave more.
So I'm going to talk a little bit about maybe
pursuing that wow that's possible even when you've had
an implant for a while.
So I asked this recipient if I could tell a little
bit about her story while I was with you. And I said,
"I won't say your name or anything too specific." She
says, "No, if I can inspire anyone who's had an implant
for a while to get more out of it, I'm happy for you to
say whatever."
So this is what we're going to talk about tonight:
Getting more from our audiology programming visit.
Does that sound like something that would be of
interest to some of you?
Getting more from others, others in your group.
Getting more from the manufacturer; we're happy to
help. And then do you get more from a second implant.
So this is what was in my subject line.
All I can say is wow. And I'm going to summarize
this because I think if I talk a little bit about her
experience, you might see yourself in some of that.
You may have a different processor, the details may be
different, but you may be able to relate to this.
I can relate to this. I have normal hearing.
I've never worn any kind of hearing aid or processor,
but I could feel the scenario.
So first she's referring to her Platinum sound
processor. That's a body-worn processor.
"I received it when Advanced Bionics offered me
the upgrade." Frankly, she never liked it. She never
liked patching into it. She put it in the drawer. She
liked the older sound processor better. It's an
S-series processor.
And I know there is someone in the room who is a
SAS user so you know what I'm talking about. This
particular woman also uses SAS.
"Since you put the latest program from my BTE…" —
we programmed her ear level processor into the PSP —
"…I wear the PSP sometimes around the house so I can
use the batteries. I have to keep them charged." So
she did that after the programming.
"I'm completely amazed that finally I can patch
into it. It's wonderful to be able to use my old Audex
cordless phone and hear like I did in the old days. In
the past we just couldn't get it right.
"And now for the BTE. I can tell you now that I
love it. It's a bit powerful so I find that lowering
it one click on the volume control is just fine.
"One of my favorite things is hearing a car length
behind me. In my community I walk Blackie — her dog —
in the road. We have no sidewalks. I didn't realize
until now how close a car had to be before I could hear
it. What a relief to see the difference.
"I definitely lowered my TV and can understand it
better without reading the captioning. I'm very
pleased there too.
"Yesterday was my HLAA State Association annual
meeting. Normally I would have worn my old S-series so
I can patch into the infrared system and listen. After
hemming and hawing, I chose to wear my BTE. I used the
headphone over the T-Mic." The T-Mic. is a microphone
we have on the Advanced Bionics ear level processors.
"Imagine my surprise when I heard beautifully. No
sizzling, no muffled sounds. I do need more practice
with the telephone, but I think now most of it is just
in getting my confidence back."
So this is a lady who had had a system for nine
years and was doing well but was looking for a wow and
through a change in her programming and the way her
programming was done she actually achieved it. So
that's what I'm going to share with you: What kinds of
steps; how you approach your programming session with
your audiologist to get more of what you want and
better results.
And I'm just going to say "Please do this
discretely." I don't want all the audiologists in
Western New York, I don't want to be on their bad list.
So I mean this in a positive way, and I would like your
thoughts as we go along.
So the number one thing: Before you go for an
appointment, whether it's a six month or one year
appointment, do keep a log of your experiences in the
short term regarding your programs and your processor,
which ones you use, when you use them, how you may
alter the settings in a particular listening
environment. If at the last session they made a
program and it never worked, you absolutely detested
it, say that and then the audiologist will know what
parameter changes to avoid at this particular session.
Now some times when I see folks come into their
programming, they sit down and sort of hand over their
processor and immediately it's coupled to the
programming equipment. You wouldn't do that when you
bring in your car and you shouldn't do that with your
cochlear implant equipment.
The first thing you have is a conversation about
your recent hearing experiences, you review what you
have in your log, and you try and express what your
goals are for this point in time going forward. You
want to share with your audiologist what your
expectations are or that you think you need for
yourself. Because they can't read your mind and they
can't know unless you articulate that.
Now sometimes when people start talking, there's
too much information. And that will cause the person
on the other end maybe to back down and not be as good
a listener. And if you understand that audiologists
really aren't reimbursed very well and their time
schedules are very pressured, and in addition to doing
their work, there are reports, there are e-mails, there
are phone calls, there's the exchange of your
equipment, those RMAs, there's a lot of pressure on the
audiologist and the time is really very precious. So
the goal is for every one to make the most of your time
together.
Now how many people do actually keep logs or write
down notes when they go for their appointment? Sam, do
you?
SAM SPRITZER: Yes.
KRIS RAFTER: Anyone else?
Okay. I think it's really important. And there's
nothing wrong with that. You don't want to walk in
with seven pages because then your audiologist will be
scared. But really the important thing is what you're
doing with our processor and how you need to modify it,
and your listening environment.
Then sometimes even at the company we get the
call, "Who is the best audiologist." Well, I think
there's some really terrific audiologists and maybe
there are some newer ones that don't have quite as much
experience. But I don't think there's really a best
audiologist. There may be a best fit for you and
that's something you have to figure out.
Now accessibility is an issue. So you don't have
too many choices in most towns of audiologists that
have ability to work with your programs. So it's
incumbent on you to make the most of that relationship
with the audiologist, and that starts really with
building the communication between that person and
yourself and really understanding what each of you are
after and what your hearing experiencing is.
And that's really the number one thing that an
audiologist tries to do in working with someone with a
hearing loss, but particularly with a cochlear implant
system: Is to understand their hearing experience.
And we go about it in some interesting ways and some of
that I'll talk with you about.
Now with the lady I introduced you to earlier,
this is probably the most important do or don't that we
worked on in her programming session to get a
spectacular program. And I can be pretty tough. And
people put up with that because they figure I know how
to program. But when I'm in a programming session and
I ask for something, that's what I want, and if I don't
get it, I get a little mean.
So when your audiologist asks for your response,
give that response. And the most important thing that
we want is "What do you hear", "How do you feel," "What
is this to you."
And normally when we're playing — and you know we
have lots of parameters to put together your programs
and to make those unique programs — the worst thing you
can say "You made that louder" because I sure know if I
upped the current, it should have made it louder.
That's not what we're after. You don't need to guess
what we did, we pretty well know that.
The precious piece of information we want is what
did that change mean to you. And that's a difficult
thing for lots of folks to do is just to give that
response of how my perception changed when you made
that change.
Now sometimes it's just "That made it better" or
"That made it worse." and it's hard to understand or
articulate what it meant, but that is where right here
is where you'll get your very best programs: If you
just react and give your gut response to what you're
listening to and not analyze it.
So when you think about it, do some of you try and
analyze what your audiologist is doing when they are
programming? No? Doesn't anyone try and do that
rather than listen?
I think you know, Marge. I think your name is
Marge.
>>>: Well, I'm kind of new at this.
KRIS RAFTER: You seem to be like, "Okay.
I'm getting what you're saying."
>>>: I've only had my implant for three
months. So far whatever my audiologist is doing she is
doing the right thing.
KRIS RAFTER: Great. And you're going to get
to the point then when you're going back less
frequently — it will be six months or nine months —
that you're going to want the changes. Right now
you're getting huge changes. Every time you get a
program, it's big and you notice something new right
after that programming.
As time goes on, that sometimes is not so
impactful, but you still look for it. And that's what
we're talking about here: Is just over time you want
to hear a little bit more. You want that ability like
you had earlier on to make all of these gains with your
hearing.
But even if you don't think you do that, lots of
folks do. And it's really remember: We're really
interested in how you perceive the sound, the speech,
whatever it is that you're listening to.
Now this is another interesting topic: Is how you
describe what you hear. So for the most part
audiologists have fairly normal hearing and we have a
vocabulary of sound that comes out of our training. So
that when I hear the word "echo" or "tinny," "base,"
"harsh," I make certain connections relative to all
I've studied about sound. I suspect that's not the
same when someone who's had a hearing loss, maybe a
long term hearing loss, and says the word "harsh" or
says the word "tinny" or "echoey".
Have any of you used those terms when you've had
your programming?
So what do we do? Well, sometimes if I were in a
rush, maybe I would say, "Oh, tinny. There might be
too many high frequencies" and then I would lower them.
Or "Echoey. Maybe there's too many low tones, I
need to bring those down a bit."
Yes?
>>>: In the beginning when I first got
implanted, I was expecting this. I did not put that
much greatness in the whole system. So I knew I had to
work on my high-pitch frequencies. And, sure, in the
beginning I knew this was going to happen. Like they
explained it to me pretty heavily beforehand.
KRIS RAFTER: I'm going to try and summarize
what you're saying.
>>>: What I'm trying to say is this:
Instead of complaining to the audiologist, your brain
has to get used to those sounds. And it's not blaming
any one person; it's just you have not heard those
sounds in maybe 40 or 50 years.
KRIS RAFTER: Or ever. So he's talking about
in his own experience, probably early on, heard tinny,
but understood that he needed to hear those sounds. So
he wasn't complaining. It's not a negative; it's a
description.
It's helpful because we do want to hear, we don't
want you to put up with things. And even though high
frequencies may be important and critical for hearing
speech, and especially consonant sounds, you may not
need it all at once; you may need to work up to that.
But this vocabulary thing is pretty significant.
In trying to come together with what the term
"echo" means when you say it, it may be really a
different direction to the audiologist when someone
else says the word "echo."
So part of developing that communication with the
other person — the audiologist and the individual with
the implant — is working through this vocabulary.
Because ultimately you're going to want to fix the
quality; you're going to want to improve the quality.
You can have a 100 percent discrimination on a test and
you probably would be satisfied, but you will still try
and resolve those quality issues.
So by working on this vocabulary with the other
person, they're going to come to understand what they
need to change in the program to solve that quality.
Has anyone had an experience like that; where you
were trying to explain what a certain sound meant or a
sound was wrong and they were just not getting it or
not clarifying it?
>>>: No. But what you said about scoring
100 percent, in a sterile environment that's fine, but
the real world isn't like that.
KRIS RAFTER: Yes, absolutely.
So I also just should mention that these terms —
like echo, sizzling, harsh — that we think of them as
relating to pitch and we actually oftentimes do change
your M or your C levels depending upon which device you
have at difference parts of the array, the electrode
array, in your ear.
Most of the audiologists will have — and you might
have seen them in the office — laminates with different
sounds of speech and the different frequencies of those
particular consonants or vowels. And they may actually
look to those to see if you have specific harshness or
that sort of thing, what part of the array they're
going to modify.
Sometimes it's not about pitch; it's about the
array. We can also change how quickly or slowly these
things stimulate. And these words like "sizzling" have
a lot to do with that.
I don't know what your experience is with this,
but do any of you when you're sitting with the
audiologist sometimes do sentences? They'll give you
some sentences and they'll cover their mouth with the
screen, or they may give you vowel/consonant/vowel.
They may say "a ma," "a pa" and see if you can hear
those fine consonant differences.
Every one has their own sort of material and their
own yardstick for doing this and there isn't one item
that's better than the other. But don't let this make
you uptight. Sometimes people don't want to be tested.
They feel they're doing well and they don't want to
fail or miss or get something wrong.
Do you think that's partially true some of the
time; that you would rather just get your program and
you don't want to be tested? I totally get that.
But generally when an audiologist is doing this
kind of informal testing, it's really to check on their
program and to see whether there may be certain aspects
of the program that could be modified. And if they
make a couple of programs — usually get a couple of
programs, they try different things — they may want to
see which one gives you the sharpest understanding.
And sometimes those tests like "a pa" "a ka" — does
anyone ever do that with you? They probably have
something else — that will tell them exactly where they
need to work on your program.
So if they're doing that, that's a wonderful
thing. That's really going to get you a better
program. And don't be concerned if you miss. Because
if you miss it there, you sure would miss it when
you're in the real world and there's background noise
and more than one person talking. So let it happen
there and let them try and correct that and tweak it
for you.
So did your audiologist ever just say "Just talk"?
"Go ahead and talk." Anyone ever do that? Maybe
they're tired, maybe they need to write a note.
But also when you're programming, listening to the
other person, listening to the person with the implant,
we can hear differences. Right, would you agree? You
can hear differences with different programs. It can
be that immediate.
And we sit and listen. We don't always say what
we're doing because it takes too much time to explain
what we're doing, but we're listening to see the
overall level, the articulation, listen to specific
speech sounds. And that way we can maybe decide upon
which program we like better, you seem to do better
with; we are going to put in Slot Number 1 because Slot
Number 1 is the program you're going to use most often.
So go along with your audiologist there.
Any questions, comments?
>>>: On vocabulary.
KRIS RAFTER: May I give this to you?
>>>: Sure.
KRIS RAFTER: Because I'm not good at
paraphrasing other people.
>>>: Many of you may have had the same
experience I did when I first got my implant. The
vocabulary I used was that voices sounded like R2-D2,
very compressed or very high-pitched. And over the
years — I've had this one 11 years now — it has leveled
out beautifully.
Five, four years ago I got the Auria and it
started out the same way with the very high-compressed
tones and is still that way. And I don't know whether
it's programming or whether it's the brain needs to
adjust or whether I have to only use that and not use
my other one in order for it to adjust.
KRIS RAFTER: Well, that's an interesting
question. So the question I would ask would be: Were
your ears similar before your implants?
>>>: Yes.
KRIS RAFTER: And are your programs similar
or are they different?
>>>: Well, they must be different because
this one's much newer technology.
I will tell you, if I hear a sound, it sounds
different out of one ear than the other.
Music, very familiar Christmas music, sounds
melodious but it's not the music I remember. It's
different.
KRIS RAFTER: Well, I would say that if your
central auditory system adjusted for Ear Number 1, I
don't think it's something in your central auditory
system that's lacking now.
Generally one reason that things sound
computer-robotic in the beginning, one reason is this:
That there is a wide spectrum of sound out there with
respect to intensity.
So for people with normal hearing, our range of
hearing is probably a hundred decibels or more: From
the very quietest we can hear to where we're
uncomfortable. Cochlear implant system doesn't capture
as wide as a normal hearing system. So that window of
sound that's captured by an implant is narrower than
normal hearing, but it's pretty wide. And the
different technologies have different input ranges, so
those vary.
Especially when you first start hearing, your
range — and you all know what the programming you have,
your thresholds level and your comfort levels —
especially in the beginning that's very, very narrow.
So whatever system you have, you're taking a wide
range of sound in the environment and putting it in
this almost minute electrical range.
Now over time that generally widens up as you
adjust to the hearing, so that the range of
environmental sound is not so exponentially great
relative to your comfort range. And that's why also
your central auditory system adjusts, so it sounds good
after a while.
It could possibly be that the electrical range in
your left ear for whatever reason is much narrower than
your right if your ears were the same to begin with.
That may be one reason for that. But I don't really
know because I don't know you. But that may be.
>>>: I have a music program.
KRIS RAFTER: You're not going to let me
paraphrase, so I want them to hear your question.
>>>: My Audi gave me a music program for one
of the programs I have. And what it is it's like a
wide open.
So if you catch a full range of sound, it really
helps me out, but I can't really be the one to
determine that because I wear a hearing aid over here.
The combination of hearing aid and my cochlear implant,
music sounds great to me. It's never sounded any
greater.
(Applause).
>>>: Some people with cochlear implant and
if I shut the hearing aid off and just listen to music
through there, it's a real letdown. It's like someone
pulled the plug: What happened, you know?
KRIS RAFTER: I'm going to ask, now that
program that you have for music, if you wore it in the
car or walking around, what happens to you?
>>>: With music?
KRIS RAFTER: Not for music, I mean just for
other environments. If you use that music program,
what happens? Not music, other than music I mean.
What would happen?
>>>: I don't use it for anything else.
KRIS RAFTER: What would happen? That's what
I want. See, this is what I mean: Just answer the
audiologist's question.
>>>: It's only for certain environments.
KRIS RAFTER: What's your name? I should
know you because you have Advanced Bionics. What's
your first name?
>>>: Jimmy.
KRIS RAFTER: If you put that music program,
let's say when you're out and about, let's say to the
mall, what would happen?
>>>: I could hear, but it's too intense.
KRIS RAFTER: Right. It's too much.
>>>: It becomes ten times louder. It's not
suppressed.
KRIS RAFTER: Exactly.
>>>: But I mean in certain environments it's
good to have. Not in all environments.
KRIS RAFTER: So what Jimmy is actually
telling you is that quality — because music is really
quality sound — that that gets better when his range is
wide — and I bet it's 80 decibels — which is nearly the
same as the acoustic input — and the quality gets
better.
That's sort of what we're talking about with
things being narrow and wider. The problem is you
can't do that all around because there's so much
ambient noise from all these noise sources. So 80 db
walking around the mall, you know, would make you
nervous. So it's interesting.
Now this is a topic that makes a lot of people
uncomfortable: And this is about eliminating
electrodes from your program.
In our society somehow more is better most of the
time. And with cochlear implants there is sort of the
sense that the more you have, the bigger the number,
all of that is better, but that's not necessarily so.
And there may be instances where a particular electrode
is not working for you and is actually sabotaging the
way you hear. It could be because it creates static,
it may be a little uncomfortable.
And your audiologist will say, "I'm going to make
a program and I'm going to eliminate that electrode."
That can be a very good thing. Because if the device
has a little problem at a certain electrode or maybe
your cochlea has a dead spot and there's no point in
stimulating that part of the ear, you're better off
without that electrode. You can take the frequencies
that were being stimulated at that place and put them
somewhere else where they can do more for you.
So if they make that suggestion, it may not be the
best result for you, but don't think of it as a
negative; think of it as another possibility and
another possibility to hear better.
And then of course talk about your specific
listening environments, needs and goals. So that can
be anything for noise, the environment you're in,
music, telephones, specific workplace needs or
educational needs. And that's where the duplicate or
the secondary programs are going to be really
important.
Everyone has different demand and experience. And
the audiologist, it's fun for us to make programs for
these other kinds of environments. And the software
allows us to do this. But we really need to know what
it is that you're listening for or needing to connect
to, that sort of thing.
And I just want to make sure that the folks with
Advanced Bionics are familiar with all the earhooks
because that's a big basis for some of our
connectivity.
I know I've seen almost every one that has
Advanced Bionics has a T-Mic. on in the room. Is that
correct? Lots of you have T-Mic.?
Anyone use a direct connect? Anyone patch in?
Sam, you use direct connect too?
Okay.
And, Jimmy? He has his T-Mic. I don't know if he
uses direct connect for music and iConnect -- yes.
>>>: Kris, what about us ancient types who
don't have T-Coil, T-Mic. and are still using an AS
processor? I use what's actually a telephone pickup
that works as a T-coil. Is that all I've got?
KRIS RAFTER: What's your question? For a
body-worn processor what are your options?
>>>: Right.
KRIS RAFTER: For microphone, it would be
either a Direct input or as you use an auxillary mike.
But hopefully we're going to get you into a Harmony one
of these days when they're available in the United
States.
But if you use a BTE, you would have access to a
T-Mic. or a direct connect with your generation as
well. We developed the T-Mic. for the very first ear
level.
Then for all of you different processors,
audiomixing. This can have a big impact on how you
hear. There's input to your processor and its old
microphone. And the way the input is divided up can be
varied. It can vary from one program to another and it
makes good sense to experiment with that.
Are people familiar with the mixing of their
processors? Did you ever have that discussion, know
what it is? No?
For folks with T-Mics. you might want to know what
your audiomixing is. Because what that refers to is
the contribution from your T-Mic., which is the
microphone in the bowl of your ear, and the microphone
on the processor. It can be 100 percent of one or the
other, or mixed of both. And the sound will vary.
So if you have a question, you could ask me while
we're having pizza.
Getting more from others and the manufacturer.
Well, I don't want to go into specifics of any of the
devices, but devices are upgradeable. And for Advanced
Bionics we're very much upgradeable through software.
And when we have an individual with a new software
possibility — think all the generations that I've been
involved — it's at least a 90 percent acceptance rate
embracing the new software, the new technology.
So don't be afraid of upgrading. I can't really
address the other two manufacturers in that regard.
And for Sam and my cohorts who are in Boston
tonight, I do want to mention the Bionic Ear
Association. They do an awful lot to help me, to help
my team and also the folks who have implants out there.
And we're trying to expand our outreach program.
If any one or more of you would like to work with
us, we would love to work with you: Either working
with us or working with candidates or other folks who
have implants, on the web, at meetings.
You know, we're busy people and we like to be busy
with other sorts of people. We also have web offerings
for education, seminars. The president of our company
has a chat every several weeks.
You can even go to your website or call in and get
assistance troubleshooting with your system.
So I have some information on the Bionic Ear
Association and I would love for you to take a look.
So just briefly — I think we have a few more
minutes. I don't know — let me talk about binaural
hearing or bilateral cochlear implants. And if you
think about a scenario, if there is a source of sound
that would be right there in front of me, that sound
would reach each of my ears probably in a similar
fashion if it's directly in front of me.
So there would be sort of a symmetric pathway from
that sound source to each of my ears. That rarely
happens.
What generally happens is the source of a sound is
more to one side, more to the other. And so the
pathway of that sound to each ear is very different.
The length of the pathway is different.
And the different lengths of pathway causes two
other things to change: The loudness that comes to
each ear is different, and the time it comes to each
ear is different. And those two pieces of information
contribute to a lot of the skills that you can have
when you have two ears implanted, or hearing aid and an
implant some of the time as well.
The kinds of things that people experience over
all is better speech understanding in quiet and in
noise, better ability to localize. And if you have
both ears implanted your best ear has already been
implanted.
Now I would like to talk just briefly about some
of the data we have from our adult bilateral study on
these topics. So this might be a little bit -- it's
not complicated.
Bigger is better, we said higher is better.
We have a situation of hearing with two ears
versus one or the other ear. Red represents just the
right ear implanted, just the left ear, black is both.
And this would be percent correct on a word recognition
test (indicating). Three months, six months, eight
months (indicating). And what a normal hearing
individual would score (indicating).
So most folks with normal hearing in quiet will
score close to 100 percent on a word recognition test.
You see basically the take-home is with both ears
implanted, the black bars, performance is better than
with either ear alone.
So even in quiet if two ears are implanted, the
hearing is better. And this is the data from a study
that we just completed.
There are three general topics when we talk about
binaural hearing: Head shadow, binaural redundancy and
binaural squelch. So let me show you what those look
like.
Head shadow really means your head and your face
are getting in the way. And so if you look at this
graph here, you can see that in the upper situation
speech is coming from the front and noise is on the
side of the implant. That's a problem.
If you have the same situation with both ears
implanted, there's less impact of the noise in the
situation because now you have an ear that's accepting
the sound.
And when you do these tests with individuals, you
see that there may be about 50 percent improvement in
the speech perception in these situations with the
addition of the second ear. So that's huge.
That is basically with both ears implanted, you
can only hear on the side of the sound source.
Now binaural redundancy. If you have speech in
noise and you look at how well people can hear with one
ear versus two ears, even when the speech and the noise
come from the same source, just having two ears gives
almost generally a 10 percent improvement in speech
perception. And if you did the same test with normal
hearing individuals, that's about the gain that you
would get.
Now binaural squelch is something that's difficult
to achieve with a cochlear implant because the central
auditory system is very involved with this.
Here you're comparing listening with both ears to
listening with only one ear on the quiet side
(indicating). And you see that there can be some
improvement here.
Now if you look at all the folks and the adults
who were in this study, you see that 100 percent of all
of those individuals benefited from having two ears
implanted with respect to head shadow, a large majority
with redundancy, and fewer with binaural squelch. But
the large majority of those implanted bilaterally did
experience those benefits.
With respect to localization, localization studies
are really hard, even for people with normal hearing
quite honestly. In this tests there were twelve sound
sources. This is quite a difficult test for anyone.
The signal is a gunshot and it was from in front. The
individual had to pick which sector that gunshot came
from. The fewer the choices, obviously the easier it
is.
So this is a little bit maybe complicated, but the
performance for normal listeners is up here. So this
is the fewest number of sectors (indicating), the
largest number of sectors (indicating). It gets really
difficult when you have twelve sectors even if you have
normal hearing in both ears.
This is the performance of the bilateral folks
(indicating) and then this, the right ear (indicating)
and the left ear (indicating).
So you can see those folks who had bilateral
implants, and bilateral implants turned on, did much
better on all aspects of that localization test. And
here it is displayed another way.
So this is a sizeable improvement when both ears
are implanted with localization.
So let me ask you: For those of you who had a
single implant for a while and then got a second one,
did that localization seem to happen quickly for you?
>>>: Oh, yes. My wife used to play games
with me. And she would call me from up on the balcony
and I never knew where she was.
KRIS RAFTER: How long did it take for you to
start localizing? Did you have to learn or was it
pretty immediate?
>>>: It was immediate.
KRIS RAFTER: Okay. How about anyone else?
He said pretty well very quickly the localization came
just by having the implant. He didn't have to learn
anything, it just sort of turned on.
Anyone else who is sequentially implanted
bilaterally?
>>>: I experienced pretty much the same
thing.
KRIS RAFTER: Okay. So you have two
implants. How far apart were they?
>>>: About a year.
KRIS RAFTER: Okay. So his implants were a
year apart.
Very good. And just last I would like to talk
about how people feel. Because it's not always what we
measure or what scores are that are important. They
are reflective of something or another, but also the
way a person feels about themselves, the choice they
made, how they're doing, those kinds of questions.
So there are a number of health utility indexes
that are used in medicine for all sorts of issues.
This is for having an implant. And you can see
this is really good (indicating), this is pretty
depressed (indicating), pretty much not there
(indicating).
So with no implant, this was the average score
(indicating). With one implant, you can see there's
really a doubling of the group data on their quality of
life from 33 percent to 69 percent.
With a second implant, I would say from 69 percent
to 81 percent. It certainly can't double any more, but
that is a significant increase with respect to judging
one's quality of life.
So I think from these objective measures of
ability to hear, as well as the individual who
participated in this study with respect to their own
feeling of self and quality of life was very positive.
So just to summarize: Getting a second implant
usually isn't a wow, it's a subtle wow. But overall
most people feel less tired at the end of the day with
two implants than one, they feel more confident and
safer. They have a built-in backup. Some people
really feel like they're meant to hear from both ears.
For some people that doesn't matter quite as much. I
guess that's why people make the decisions they do.
Some people stay with one implant because it's
okay and some people feel that there's something
missing if they only have one implant.
Thank you. I hope I didn't take too much time,
but I hope it give us something to think about. If you
have any questions, we can ask them here or talk
individually.
And I think we have some snacks that might be
getting cool.
JOE KOLIS: Kris, thank you very much for
coming. That was great.
Along with the bilateral my daughter, Jillian, is
bilateral, and she's been bilateral now for three
years. And first thing in the morning, they both come
on, and the last thing at night they both come off.
She's never without both of them on. She's totally
dependent on both of them.
The other thing that we noticed right away, she
doesn't do the head shaking. When there's a siren
going on, she knows where it is. It's not looking
around searching for the sound.
We were at Buffalo Hearing and Speech yesterday
for some mapping on her one side, and as far as working
with the audiologist and answering the questions, as a
parent it's real difficult to pull any of that
information out of a ten-year-old. And Kris is here
and she's Jillian's speech pathologist and she knows
how difficult it is to get some of the information out
of the kids to confirm is it better or worse, how does
it sound. "Yeah, yeah. "Are we done yet?" They're
just ready to go.
But as a parent I think it's — after hearing you
talk — it's very important to do a little bit more of a
self-examination before we get in there. Because
trying to pull it out in front of Joanne, and we had a
guest observing us as well, it was difficult to get any
confirmation out of Jillian to tell us specifically
what she's hearing and what she isn't. And that's why
we got involved in the group really, to hear what the
adult users were really saying about programming the
first time, programming with the bilaterals.
So as parents it's a difficult thing, but it gave
us a lot of good thought.
Again thank you. Kris will be available while
we're eating pizza. There's pizza back there. There's
pop and paper plates and things. Help yourself.
And we'll be lingering around for any kind of
questions or discussions. Thanks a lot.
KRIS RAFTER: And these are for all of you.
So everyone can use one.
JOE KOLIS: I also want to thank our court
reporters, Linda and Chrisann, for coming this evening
and recording this for us. We really appreciate it.
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