Gosh!
There are SO many questions, and each one is as important as the next one, and being the guy I am, I couldn't delete anyone's question, so I put them all together here and will bang away on the keyboard for the next few hours or so!
FIRST...let me give my disclaimer...the opinions you are about to read are STRICTLY my own. I am not paid by anyone to give these opinions. They're mine, from the bottom of my heart . . . and they'll eventually find their way into a book I'm hoping to write.
A little background for those of you who don't know me:
Born hearing
Spinal meningitis at age 7 (1962)
Profound deafness
NO hearing aids
Raised orally until 1970 in public schools
1971 entered mainstream school and learned ASL/SEE signing
1973-1975 NTID, Rochester, NY
So here goes:
Zero. Absolutely nothing.
Fascinating. Personally, I don't think "hearing" is all it's cracked up to be! The word "hearing" has different connotations to each individual.
"Hearing" to some is enjoying environmental sounds.
"Hearing" to others is understanding speech, and nothing less.
I have learned through this process to NOT let other people's definitions cloud my own. THAT has taken some time getting used to, understanding, and being able to state that clearly.
Music...aahhhhhh...is absolutely awesome! Now let me give you some background....
I played in an orchestra when I was in elementary school (prior to becoming deaf) and music is dear to my heart. I've enjoyed music over the years, as a child of the '60's and '70's and attending concerts at every opportunity. I played my music LOUD...which was a "cool" thing to do back then (and even today, but more people are aware of the damage that can result from loud music). For me, hell, ya couldn't hurt my hearing, because I didn't HAVE any to hurt!
Now, I can distinguish vocals mixed in with music. That is, I can tell when the vocals start OVER the music. I cannot understand the words, but my CI is now a "tool" that helps me realize when the vocals start and I can sing along to the music of my time.
Ice cubes falling into the ice tray! Oh, my god. . .I CANNOT get used to that sound and it freaks me out every time I hear it!
Now let's go back to birds for a moment. I'm fascinated with well meaning hearing people who ask: "Can you hear the birds?" Yes, I can hear the birds. The birds that squawk on the golf course have not improved my game!
Ironically, it's birds that you cannot stop. You cannot shut them up. After about 5 minutes of hearing the birds outside my office window, I am thinking to myself: "OK, thank you very much for those bird sounds...now shut up."
Oh yes...for me, the surgery was a piece of cake. I had no real serious complications as a result of the surgery. The ONLY thing I had was, the left side of my tongue was "numb" and not working for about 6 to 9 months. That didn't stop me from eating, though.
Hmmm...several things: I complain more about the noises that are made in this world. The world is a very noisy place! 90% of what I hear is NOT important.
I find that when I am walking, for example in a hotel, and someone behind me says something, I'll look around and seek out the voice. Prior to my implant, I was WAY more observant of my surroundings. I may be a little less observant, and thus, depending on what I hear for clues rather than being visually aware.
No. I asked my wife if my voice or speech has changed since receiving my implant. Her response was nope. It should be noted that I have good speech, implant or not. So that's not a fair judgment. The people I grew up with, whom I have met post-implant, still consider me deaf, and thus, "forget" that I have an implant.
I wear the BTE (behind the ear) processor for the very simple reason that I absolutely HATE the wire from the BWP (body worn processor)
Curtis asks:
Yes. I had a very good command of English and speech prior to implant. There are still words I come upon that I mispronounce, but most people will correct me and we'll just go on with it.
No...not a single one
None. I must say that I REALLY did my homework on this matter. I researched for about 2 years before I took the plunge. I sincerely have not researched anything so deeply that I can recall in my past. I was mentally and physically ready for the process. I knew exactly what I was getting into, and what I might NOT get into, and was ready for whatever fate came my way.
It was many of the above. I had every emotion known to humankind flow through my mind as I was being hooked up. I was excited to see if it would really work. I was bummed that the sounds didn't sound like I remembered them. (I KNEW they wouldn't...but hell, I'm different...I wanted to be an exception to the rule!) I didn't get depressed. That, I was very ready for. Let down...a little...I still want to be able to use a cell phone, and at this point, I cannot. (Call it Cell-Envy!)
Oh absolutely. I had the luxury of hearing for the first 7 years of my life, so I had a background of sound recognition. Having NONE of that, I'm sure would be a very challenging adventure. I have several friends who have CI's now and they came from DEAF families, born DEAF, etc. They're enjoying their own adventures.
Most of my incision was directly behind my ear. Right at the curve of my ear lobe. It was VERY hard to see. I had a good surgeon!
Yes...it is extremely tiring at first. The BEAUTY of it is that I can take off my CI and enjoy my world of silence. There are DAYS when I do not even put it on, simply because I don't feel like it.
Hearing people climb mountains, drive for hours to find solitude. I can simply take off my CI and be in the moment. THAT, is something that I truly enjoy about this adventure. I have a choice I never had before...hearing or silence.
Sandra from Scotland asks:
From day one, I have been listening to music and it has gradually become more enjoyable. It was not for almost a year, before I could distinguish vocals over the music. Now, I CAN tell when the vocals start, and that, to me, is progress.
It might...it might not. That's the interesting thing about CI's. There is no guarantee in this process, and until there is, many questions are "shots in the dark."
NO respectable Doctor or audiologist will promise you the missing notes. Granted, the technology works, but technology is not the only thing that comes into play here. It's your brain, your "wires" if you will, and the cause of your deafness that all factor into the big picture.
Now this is a really fascinating thing for me. Your question brings me to my own "belief" that I can hear things. You see, there are times when I am listening to the TV (without captions) and I "hear" a word here and there, and turn to my wife and ask for verification. Many times I'm right! But I simply don't BELIEVE that I heard it. So I am lacking in my own confidence of understanding speech! Fascinating, eh?
Yes...and I simply take my CI off.
Yes, absolutely.
Pearl asked:
Let me correct here: Can people who get IMPLANTS, not "cochlears."
As I mentioned, I had good speech prior to my implant. With the type of implant I have, I CANNOT have an MRI. I knew this prior to implantation, and had my MRI done for my medical records prior to surgery.
My relationship with the deaf community has not changed. I am as deeply involved as I have always been. I have only had ONE person give me any "grief" about my implant to date. Most people who are D/deaf will ask about my process, how much I hear, etc. and then very subtly sign "Shhhhh I'm thinking of getting one too." I find it sad that they feel they have to be subtle about it, but as I've learned over time: "We fear the most, what we do not understand."
Kat asked:
I've thought about it. But, my pockets are already full of batteries, I don't need any more! Smile! Truthfully, if they could GUARANTEE that the next surgery would be COMPLETELY different than what I have now, then I'd go for it. If it's going to be the same as what I hear now, nahhhhh...enough already.
Well, in my case, without my CI I have about an 110db loss. With my CI, I have about a 20db loss. Would it be harder to cope? I'm sure I would miss many things, but I don't think it would be as difficult for me as it would be for someone else who's entire life is dependent on their CI. I don't put mine on the minute I wake up in the morning. Matter of fact, I find it fascinating that I walk out the house and completely forget it, UNTIL...I get in my car and start the engine...and don't hear the RADIO! THEN...I realize, Damn, I forgot my CI!
I am deaf. Period. On paper, I am hard of hearing, but I don't identify myself as such. Who am I kidding? When my battery goes dead, I'm deaf. When I sleep at night, I'm deaf. When I'm swimming, surfing, or sailing, I'm deaf (I don't wear my CI in any of these activities), so therefore, deaf I am.
I personally do not endorse implanting children.
I say this for several reasons:
1. There's no guarantee
2. Hearing parents of deaf children are given the false sense that their child will be "hearing" with a CI. This is not necessarily true.
3. Children cannot articulately describe what they're hearing, so it's a crap shot for the audiologist to "guess" what's going on in the child's hearing process.
Until there's a "guarantee" that all the above are resolved, I'll remain with my decision about children.
Jazzy asked:
I love music. Plain and simple.
I love silence. Plain and simple.
With my CI, I have these BOTH, and I can choose when I want each one.
More questions from the list:
For me, this is not a factor.
Personally, I feel the audiologist is the most important person after surgery. In my case, I only saw my surgeon twice. Once prior to surgery and once after. I wanted to see if he had steady hands! Smile
The audiologist, on the other hand, you will work with VERY closely and for many years to come. THAT, is where I'd put my time and effort researching. INTERVIEW them. I found that I could NOT get along with one of the best, most highly recommended audiologists at the center where I got my implant. So I sought out others. Fortunately, I was able to hook up with one that worked with ME.
As for resources, there are MANY boards on the Internet that are filled with people sharing their experiences. BE AWARE, and take each one with a grain of salt. (MINE INCLUDED!) Do NOT be persuaded by one's claims of miracles. There ARE miracles out there, just as there are lotto winners. I've yet to meet a lotto winner...get my drift!
You're welcome. I think I've answered what you've asked above.
It doesn't "HURT" in a sense of pain. It has, though rubbed the hair off the side of my head where my headpiece connects. There is no earmold for a CI, so THAT is a blessing!
Your brain "interprets" sounds. So in a sense, I have to re-learn what sound is what.
New sounds that I "recognize" are what I call "AH-HA's." As in "AH-HA...that sound is a helicopter, AH-HA that sound is my wife calling me from downstairs. As for environmental sounds, I enjoy being able to IDENTIFY what I'm hearing. As for speech, I am still not understanding words, but I can "figure out" that it's my wife calling me.
I change mine about every 4 hours.
If you saw my audiogram, you'd be shocked. It was at 110db (Flat line on the bottom) and now it's at 20db (way up on top) yet, I do not understand speech.
I think it's VERY important for everyone to realize that simply hearing, and UNDERSTANDING what one hears are two very different things.
All in all, I'm delighted with my choice. And a choice it is!
I hope you've enjoyed reading this piece. It's been fun for me to write it out, and reflect on many things I've gone though the past few years.
Yesterday I posted a message relating that Larry Littleton, who is going on four years now wearing a CI is interested in fielding questions anyone might have about cochlear implants.
Of course we have a SWC list that focuses on cochlear implants, one that is composed of SWCers who have a CI and those interested in obtaining one. No doubt that group is the most informed and competent to answer any questions we have about CIs and suggestions for conducting research on the topic. I would urge anyone interested in a cochlear implant to consider joining that SWC list as an additional list to their home list.
In the meantime, if someone lacks the time to add another list to their agenda, or simply wants to see what kind of questions are being asked about cochlear implants, I shall post the questions being asked in this message and perhaps take the answers and post them (with a clear understanding that answers to such questions are strictly personal opinions and should not be taken as facts) either to the SWC lists or in the SWC Online Voices, our newsletter. (If you have yet to read a copy of the SWC Newsletter, check out the past issues at the following URL:
The questions which follow are raised in various messages in response to my post on "It Has Been Four Years." They are not questions by the same SWCer, but a collection of questions which I list in no particular order:
To date the questions asked at this time are:
1.) I have heard that hearing with a CI fluctuates, in that you have good days and bad days.... Is this true? Do you hear better at some times and worst at some times?
2.) Okay, here goes my question(s). What should I ask my doctor about CI's when I soon get evaluated for a cochlear implant? Are there literature and agency resources you recommend? Thanks for your wisdom. Newbie X
3.) I am anxious myself, to go bilateral...would if AB had a totally implantable CI! I would also ask if hearing loss would be harder to cope with now, if he were to lose his implant hearing for whatever reason? (device failure) and how do CI wearers refer to themselves...as hearing impaired, hard of hearing, deaf, etc...? I would ask views and opinions on implanting children.
4.) Can people who have cochlears get MRI's when needed.? How did getting a cochlear effect his relationship with the deaf community?
5.) I am relatively new here. I have been reading a lot of posts about Cochlear Implants and am curious. Did you wear hearing aids before and if you did, is the CI better than the hearing aids in terms of clarity of sound and amplification? Does it help you hear any better in noisy situations? Can you hear on a voice phone? I can't anymore and it is frustrating. I use a TTY and that works fine, but I am having a hard time finding employment. What level of hearing loss qualifies for the Cochlear Implant? Have you had any complications from it? Do you find anything really annoying about it? Are there things you really like about it?
I guess that is enough questions for you. Thanks for offering to write the article.
6.) I would be interested to know if CI helps with hearing music on a radio
7.) Does wearing a cochlear implant hurt? By that, I mean, I know when I put on my BTE and stick in the ear mold, there is discomfort (esp. when the earmold is brand new!!! Like the Rock of Gibraltar!! Ouch!)?
Are sounds electronically mimicked when the signal gets sent through the cochlear or do you hear actual true sounds?
How does hearing new sounds affect you? Since bird chirping bothers you, do other sounds bother you? How often do you change the battery?
8.) Well, as one who is approaching a one year anniversary of receiving a cochlear implant, I would like to know from Larry what he likes the most about using one, and what he dislikes the most.
9.) I would like to know how well one hears with a CI. In other words, I would like to see or read about a bunch, maybe a few at least, before and after audiograms.
10.) How big is the original incision for the implant?
The noisy birds (or whatever) is something I have wondered about. I think Iwould have trouble with that. - I love quietness. In that connection, too, I wonder about the difficulties of adjusting to the input of sound. Is it stressful? Stimulating? Tiring? I fancy that it would be very hard work and emotionally draining, dealing with the whole thing.
11.) Thanks for giving me the opportunity to learn about CIs! Here are a few questions to help get you started.
Is music easy to listen to with a CI - is it something you have to get used to gradually?
To explain why I ask: I have been HOH since birth, but there is evidence that my hearing is deteriorating further still. Just now I put on a tape I haven't listened to since I was 21. I'm in my late 30s now. The first song in the tape is 'Riders in the Sky' by the Shadows. I still love it; it's still wildly exciting, and it has a great thumping beat on that old hi-fi.... but I soon realized I don't hear it as clearly as I did. Sounds I knew were there.... aren't there any more. There was a sort of high-pitched 'pow, pow, pow, pow' in places - that was missing. Would a CI bring back the missing notes? I also wonder if there is difficulty concentrating on other people's words and 'recognizing' them even when you hear them clearly, or is that something that is built up over time? Does it ever get too much - too noisy, too harsh, too immediate? If you could go back and make your decision again, whether or not to have a CI, would it be the same? Thanks and best wishes!
12.) Do I have to have my good ear implanted? Can't they implant my deaf ear?
Everyone is invited to answer any or all of the above questions. I'll probably publish the responses in the next edition of SWC Online Voices.