The first time I even heard about
a cochlear implant was 4 years ago after my mom watched a TV special. She was busy telling
me about this wonderful new miracle surgery that would let me hear again. And I was busy
laughing. I’ve been hard of hearing and then deaf since I was a teenager. Its the
only life I’ve ever really known. I have never LIKED being deaf, and yet I was used
to it. And here she was telling me about all these *wires they put in your head* and the
whole thing just seemed like another quack cure to me. I laughed and teased her. I told
her she just wanted to put wires in my head to control me. I laughed that with wires in my
head, I’d be able to pick up the Martian signals when they came back to earth. I had
my brother and sisters cracking up, and my mom gave up and dropped the idea.
Then a couple years later I joined the SWC mail list. And several of
the people on the list had CI’s and were quite pleased with them. But still I
thought, "Well they haven’t been deaf as long as I have, and they were really
unhappy with their hearing loss. It probably wouldn’t even work for me." But the
seed of hope was planted, and as much as I tried to ignore it, it began to grow.
I tried my best to avoid the whole topic of cochlear implants. I was
afraid to get my hopes up. I’d tried many things over the years as my world drifted
into total silence, even faith healing. Nothing had helped, and the let down afterwards
was very hard to deal with. So I kept telling myself things like, "Well even if they
DO work, and even if one would work for me, the insurance company would NEVER go for
it."
Then I talked to a guy on IRC that lives near me and has a CI. He gave
me the email address of his cochlear implant audiologist. I wrote it down on a
post-it-note and stuck it on my computer monitor, but I still wasn’t ready to really
believe there was something out there that would help me. I’d just been disappointed
too many times in the past. I didn’t talk to any one about the possibility of a CI.
But every morning there was that email address looking at me. I found excuse after excuse
to not write the CI audi, and yet I couldn’t quite make myself toss the paper either.
Finally I ran out of excuses and decided what the heck! I wrote the CI
audi and told him a bit about my hearing loss history, and also that I was almost positive
my HMO could never be made to pay for such an expensive surgery. After all they had balked
even about giving me an ENT referral for my youngest son when I wanted him tested to be
sure he hadn’t inherited my hearing loss.
I got back a very fast reply from the CI audi. I was surprised that he
seemed to think my type of hearing loss was one that could be helped by a cochlear
implant. I was also surprised at how much he cared. His enthusiasm about cochlear implants
was contagious, but he was also very careful to keep my hopes and dreams in check.
Cochlear implants don’t work for everyone, and without the testing there was no way
to be sure if they would work for me. He also reassured me that my HMO had paid for some
implants in the past, and that if I was willing to really stay after them, that the
implant center would do all it could to help me.
I have had the same HMO for 15 years, I know how they work, and I knew
I would have my work cut out for me just getting even the referral for the testing. The CI
audi and I had by this time emailed back and forth quite a bit and became friends. Because
of this he offered to do the first round of preliminary testing without charging me. That
way if I was a candidate for further testing, and he was pretty sure that I would be, then
I would have some ammunition to take to my insurance company when I requested an
authorization for the testing. If not they wouldn’t charge me for the first round of
testing. I had nothing to lose, and I was starting to let that little seed of hope into my
heart. I was going to try just one more thing!
The preliminary CI testing was one VERY long day of sound booth tests.
But just as my audi predicted, they showed that I was *deaf* enough. The next step was
getting the authorization from my HMO for further testing. I made an appointment with my
primary care physician, a doctor I’d seen for the last 15 years. The first thing my
doctor said when he came in the room was "Why on earth do you THINK you want a
cochlear implant? They don’t work." I was more than a little surprised. I said,
" I’m not sure what your basing your information on, but you're misinformed. The
new multi-channel cochlear implants work very well." He then says, "No no no I
mean they won't work for YOU." Ah, now this I’d expected. It's every HMO’s
first line of defense. You don’t need it, or it won't work for you. I simply smiled
and handed him the paper work from my CI audiologist showing him that the preliminary
testing showed that I was in fact probably a very good candidate for a CI. He read the
papers and then said, "Ok let me see what I can do, but its not going to be
easy".
It was a struggle, it took me 6 long months of constant phone calls. I
got lots and lots of run around. The one that seemed to be everyone’s favorite was
"Its going to take longer, if we can do it at all, because your making an out of
network request". Say what?? The CI surgeon/implant center that I was requesting the
authorization for testing from is the ONLY one in Oklahoma that is part of my HMO’s
system! Of course when I pointed that out, they said "Well yes, but he’s not in
Tulsa" Sigh. Finally after much run around, I was at the point of totally losing my
patience, but a long ways from giving up. Then I got the letter that the rest of the
testing had been authorized. I really have no idea why after dragging their feet for 6
months, suddenly it was all go. I think there were several factors. I know that my implant
center was very very helpful. I also know that my primary care physician and his office
staff was pushing them hard for me. And I had just offered to take my story to the Tulsa
World Newspaper, which I honestly think made at least a small difference. I’d done
that once before when they refused to pay an ER bill for my son's asthma attack. I meant
it, and they knew it.
My CI audi got the rest of my testing scheduled very quickly. The CT
scan and ABR were simple and painless, but the hours in the sound booth were totally
exhausting. I met and talked to my surgeon, and he checked my head to see if there were
any problems there. All my test results came back as they should and YEAH! I was a
cochlear implant candidate. I was trying to be realistic, but I was walking on air!
I fully expected my insurance company to put up another battle for the
authorization for surgery, but they surprised me, and a week later my surgery was
scheduled! My emotions were this huge mixture of excitement and fear and so many
questions. Would it work? Would it change me? How were people going to react to me?
Before I tell you about my surgery, I want to stress that only 1% of
all people who get CI’s experience the intense pain that I did. Most people have very
little pain, some nausea from the anesthesia, and some dizziness for a few days. As my CI
audi put it "You just have to be different!"
Finally surgery day arrives, and I’m strangely calm. We get to
the hospital at 7 for the preop stuff and the receptionist is a mumbler who when I ask her
to look at me when she speaks, looks at me like I’m stupid, then looks back down at
her paperwork and asks me another question. Sigh, I know its going to be a long morning.
From check in I go to the lab for blood tests, where much to my surprise they are
excellent to look at me when they speak. A few vials of blood later I’m on my way
back upstairs. From there things moved very rapidly. I was soon in the preop preparation
area where an IV was put in, and I was given some drugs to relax me and started on
antibiotics. My surgeon came in to make sure I was ready and to answer any questions that
I had. He’s a great guy and I found his visit reassuring. Next the anesthesiologist
came in to explain what he was going to do. Then it's off to the surgery room. It
doesn’t take very long for them to put you under, there’s really no time to be
afraid.
The next thing I knew, I couldn’t breath, at all. This was
absolutely the scariest feeling I’ve ever felt in my entire life. Then a paper
appears in front of my eyes that says, "COUGH HARD!" And wow, such relief. I can
breathe again! Another sign. "Good," it says, "Your doing great!" I
don’t feel great for sure. I feel like I’ve been kicked in the head by a mule.
More signs, they ask things like nausea? Dizzy? I answer No to all of them, saying only
that my head really hurts.
The pain in my head is starting to grow, and I ask for pain
medications. The nurse says, "As soon as we get you to your room." A long bumpy
ride on a gurney to my room. Standing shaky legged and into bed. The pain in my head with
every movement is like someone’s slamming me with a baseball bat. I tell the nurse
again. She says "I’ll go get you something for the pain." Another nurse
comes in with a needle of stuff to put in my IV. She says, "This is valium for the
nausea." I say "I’m not nauseous, my head hurts, bad!" She says,
"We’re bringing you something for that."
They come to get me for x-rays and I say, "Wait I want my pain
shot first, I really, really hurt." And they say, "This will only take a couple
minutes." I say, "NO", but no one listens. The pain is now very intense, I
feel every bump of the gurney wheels. After what seems like hours I’m finally back in
my room and I grab the first nurse that comes close and say, "I want a pain shot
now!" Ahhh finally, sweet relief.
The next day my surgeon checked and rebandaged my head and I was on my
way home. The first week I was really in a lot of pain. After that I had no pain at all.
Just a VERY long 4 weeks wait until hookup!
Finally hookup day is here! My CI is connected to my audi's computer
and he does some things. "Hey that sounds just like scales on a piano", I say!
Its so neat, every note so clear. Then he tells me that he’s going to start talking,
and he wants me to turn the volume up till I can hear his voice. I’m really scared.
What if I can't hear anything? What if I went through all this pain for nothing? I turn it
up very very slowly. My audi is frowning just a little. He looks over at the volume button
and laughs. "Turn it UP" he says! Okay okay, time to be brave. I turn it up
farther and I hear bubbling and gurgling sounds, a really weird noise. My audi smiles and
says, "Keep going!" Then wow! Oh those are words! Not sounds or bits and piece
of words or the robotics I expected! I can hear him! I’m amazed! I’ve been
totally deaf for 15 years. And now suddenly here are these words just there. Like reading
a book the words are there. No more taking bits and pieces of words and sounds and putting
together to try and figure out what’s been said to me. I just know! I can hear! And I
know at that very instant that the pain was worth it. That if this thing ever needed to be
replaced, I’d be banging on the hospital doors begging them to implant me again.
And it's only gotten better since then. I spent a lot of the first few
weeks saying, "What’s that?" There were so many sounds that I’d not
heard in so long I’d forgotten what they were. I’m now at 6 weeks post hookup.
Most people's speech is very clear to me talking one on one. In a small group I never lose
track of the topic, but sometimes miss some of what is said. Before my CI I avoided groups
at all cost because I felt so stupid sitting there not having the faintest idea what
people were even talking about. I can hear music again! Not just the noise, but the lyrics
and most of the instruments. When I found I could hear music again I sat for hours and
played all my tapes of my favorite oldies, and cried. My use of the phone is still pretty
much limited to family members and friends. People that I know will be patient with me.
I’m still rather afraid of it, but I’m getting there.
I wish I could put into words what my CI is like. It's given me back
so many things that I’d learned to live without. It's given me back my family. I can
now sit around the table and talk to all of my sisters at once. I can be part of the group
again. It's made my job so much easier to do, the stress level is so much less. It's given
me back my music. And the sound of my sons voices, and water, and wind, and birds. I
expected the CI to sound mechanical but it doesn’t at all, and for me never has. I
expected outside sounds to be amplified much as my hearing aids had amplified them, but
the CI doesn’t do that. It brings words to the front of all the other sounds. It's
been, for me, nothing short of a miracle. It's given me back life.
