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The Butterfly Effect
Every so often, I get a request from Advanced Bionics to mentor a person who qualifies for a cochlear implant and has questions, or would just like to talk to someone who already has one. It’s strictly volunteer; I don’t get paid for doing it and I can choose whether or not to accept the mentoring opportunity. The majority of my mentoring has been done online, via email. This past weekend, though, I got the chance to talk with a fellow who lives in the area and was hoping to talk to a CI recipient face-to-face.
He and his wife came by and spent a few hours talking to me and Dave. We really enjoyed talking to them, and we found that we had a lot in common regarding this invisible ‘disability’ of ours. We were the first hard of hearing/deaf people he had ever met in person. I can remember what that was like, meeting my first hard of hearing (HOH) friends. Growing up, and into my early 30s, I had no friends or even acquaintances with hearing loss. I was the only person in school with a hearing loss (that I knew of, anyway). All of my family members, friends, boyfriends and my first husband were all ‘hearing people.’ It is such a relief to finally talk to someone who gets what it’s like to have people assume you’re stuck up or rude because you don’t respond to them, someone that knows what it feels like to have people assume you’re doing fine because you can hear a certain sound…but they don’t get that just because you hear it doesn’t mean you understand what you’re hearing.
In late 1996 through 1997, I was a single mom with two young children, working full time and getting used to doing things on my own. I was going along okay, feeling pretty proud of myself for my coping skills, when I got a raging, horrible ear infection in my good ear. (At this time, I had a severe loss in my left ear and was profoundly deaf in my right ear; I wore a hearing aid in my left ear, which was my ‘good’ ear.) I used to get periodic middle ear infections from having an ear mold in my ear all day long; they were painful but I could deal with them. This one, however, was beyond anything I’d ever experienced. I was running a high fever and in so much pain that all I could do was cry. I saw my ENT, and he actually had to place antibiotic-soaked cotton down inside my ear with some kind of instrument (I cringe just remembering this!) because my ear canal was so swollen that drops would not go down inside to where they needed to be. He also prescribed antibiotics, as well as Vicodin for the pain. Usually I can’t take Vicodin; it makes me sick to my stomach. I broke the pills in half and, let me tell you, it was the only thing that would even bring me a touch of relief.
I was off work for a week as I dealt with this, and my parents took the kids for me. The cotton deep inside my ear, combined with the fact that I couldn’t wear my hearing aid, rendered me completely deaf during that time. It was my first experience with total deafness, and it scared the crap out of me. I realized I was not really that far away from being deaf, and that I had no coping mechanisms in place for it. That’s when I got my bed shaker alarm clock, and started looking into online support groups for people with all forms of hearing loss. That’s when I got my first deaf and HOH friends.
I joined a mailing list, which still exists today, called the Say What Club (SWC). When I introduced myself, I explained my hearing history and what I was currently dealing with, and expressed an interest in learning sign language. Everyone was so welcoming and friendly, and I was amazed at how good it felt to talk to other people who knew what it was like to deal with hearing loss. One of the people who welcomed me was Dave, and that is how we met. He sent me a huge box filled with books and videotapes on sign language, since he used to teach it. I was blown away by his thoughtful gesture, and I really liked the way he expressed himself in writing, so we became fast friends.
At the time, I was casually dating (a couple guys from work, a couple people I’d met online) and really having no luck with it. I was getting fed up with dating in general and was about to swear off any kind of love life for a few years, until the kids got older. It wasn’t worth the hassle. Dave was just a few years out from his bone marrow transplant, and he felt it wasn’t fair to get into a relationship with someone because who knew if his leukemia would come back or if he might have some other complication. So we were just friends, writing emails and meeting up with other SWC friends in chat rooms. I can remember kind of yelling at him about his reason for not dating somebody – I mean, we could all die tomorrow…is that a reason to pass up an opportunity for love if you find it?
As 1998 came along, I could tell he was starting to like me as more than a friend. We hadn’t met in person, and I tried to discourage him because I knew what it was like to meet someone in person after knowing them online. You kind of fill in what you don’t know with your ideal image of what you want in a person; once you meet them for real, it’s kind of hard for them to live up to that imagined ideal. He basically blew off my warnings, sure that everything would be just fine. I was nervous, worried that he’d meet me in person and be truly disappointed, and then our friendship would be awkward and weird. I didn’t really tell anyone about our burgeoning relationship; this was back when meeting someone online was fairly rare and everyone was convinced that the only people who would do that were serial killers and psychos.
We made some tentative plans, and then our actual meeting ended up being really spontaneous. It was the end of March, and my plans with a friend from work had fallen through. It was early Friday night, the kids were at their dad’s for the weekend, and Dave called. As we talked, I mentioned my now-free evening and he said, “How about if I come over?” I thought he was joking, but that’s exactly what he did! He drove from his apartment in Michigan which, at the time, was over four hours away. He got a little lost so he didn’t arrive on my doorstep til nearly 11:00. This was before the days of cell phones (especially for hearing impaired people) so I just had to wait and wonder if he would ever show up.
When I opened the door, I was so scared. I mean, what if I hated this guy in person? And he was there, in my house…how would I get rid of him? It wasn’t like a date in a restaurant, where I could make an excuse and leave. My first thought was that he was shorter than I pictured; I was standing a little above him in the doorway, while he stood further down on the porch. When he stepped in, smiling broadly, I realized he was actually the perfect height for me (I’m barely 5’1” and he’s 5’8”). We hugged, he proudly showed me the WebTV device he’d brought along (this was how he accessed the internet — no computer for Dave) and we started talking. It took me about five minutes to realize everything was going to be just fine; he was basically the same in person as he was in email – funny, articulate, interesting and kind.
That was nearly fifteen years ago and the rest, as they say, is history. We dated long-distance for a couple of years, and then Dave moved here from Michigan. We got married Feb. 2, 2002 – we’ll be celebrating our eleven year wedding anniversary in just two weeks. All of that from one chance gesture, reaching out to connect with people in the same boat as me. Ain’t life grand?!
Being Bionic
I realized the other day that there’s a lot of things about having cochlear implants that I assume everyone just knows. When I first started this blog, I think my main ‘audience’ was other people with cochlear implants or who were considering one. As the years go by that’s no longer the case, and there are certain questions that I frequently get asked, so I figured I’d write a little bit about being bionic.
Just as a quick refresher, for anyone who doesn’t already know, I am profoundly deaf. I lost my hearing three separate times during my life, for reasons nobody has ever been able to figure out. So I didn’t grow up deaf (I wore hearing aids). When I lost my hearing the third time, in April 2008, it left me with no usable hearing – I don’t respond to anything on hearing tests, and there is nothing that I hear, even with hearing aids.
I received a cochlear implant in each ear in July 2008. Instead of thousands of little hairs in my cochlea waving around and helping me to hear, I now have a teeny strip of 16 electrodes that do the job. The sound is interpreted by my brain after it’s routed through an internal micro-computer to the electrodes. The signal is transmitted via the headpiece/antenna connected to a processor (also containing a micro-computer) that I wear on my ear; it looks like a big hearing aid. There’s a magnet inside my head, and there’s one in the headpiece that is attached to my CI processor via a wire. The magnets are of opposite polarity. I put the magnet headpiece up to my head, feel around until I can feel the magnet pull, and let go. It clings to my head via the magnet in my skull. Here’s a couple pictures:
My Left Side CI (purple metallic color)
A better view of the processor on the ear.
So that’s what I mean when I talk about “having CIs.”
I didn’t have brain surgery. I won’t get graphic (because I don’t know enough to!) but basically they make an incision behind your ear, along the curve, and then (for me, anyway) up and back a bit. They thread the electrodes into the cochlea and they shave/drill some of the skull to fit the magnet/radio antenna component, which is a couple of inches up and back from the ear. (I think this is slightly different for everyone, based on skull thickness.)
When I attach the magnet, it doesn’t hurt; I don’t feel anything at all. Once it connects, there’s a pause and then a woosh of sound as I begin to hear. (If the magnet is not attached, I don’t hear at all.) Now that I have a program called ClearVoice on my CIs, there’s another change as any loud, steady background noise (fans, etc.) gets suppressed.
If I run my fingers over my scalp, I can feel bumps – very, very slight on the right side and very, very noticeable on the left side. They did shave a bit of hair for the surgery, right behind my ear. Since my hair is long, it covered the shaved areas pretty well. For about 6 months after my surgery, I had my mom (a hair stylist) and my husband use clippers and keep the hair trimmed where the magnet connects. Your head stays swollen for quite a while and the less hair in that area, the better the magnet can connect.
I don’t wear my CIs in the shower and I don’t wear them to bed. I usually take them off if I’m going to nap, because the magnets get knocked off anyway when I lie back. I can get my CIs slightly damp (I don’t freak out too badly in the rain) but they aren’t waterproof like the latest offering from Advanced Bionics, the Neptune.
I find it really difficult to do anything that requires lying back if I have my CIs on. The weight of the processor pulls it off my ear and if the magnets bump into anything, they slide off. This makes going to the doctor and the dentist a bit of a challenge (especially the dentist), and makes things like yoga and sit ups fairly tricky unless I take my CIs off. I have a contraption that helps keep the processor on my ear so I can use that, but after a while it makes my ear ache…plus it’s really hard to put on!
Because I don’t sleep with my CIs on, it’s a catch-22. It’s very easy to sleep because nothing wakes me up…but it’s hard to wake up if I have to be up at a certain time. I use an alarm clock that can do a few things: it can connect to a light and flash it to wake me up (this would never, ever wake me up), it has a very loud alarm that can be made higher- or lower-pitched (this would never, ever wake me up), and it connects to a little disc that you can slip under your mattress or pillow, which vibrates/shakes the bed when the alarm goes off. THIS wakes me up. Boy, does it wake me up!!
The cochlear implants didn’t cure my deafness; I will always be deaf. Thanks to my CIs, I have a foot in the hearing world and a foot in the deaf world, which is pretty cool.
My CIs use rechargeable batteries. (This is different by brand – I use Advanced Bionics CIs.) There are two sizes – a smaller SlimCel and the larger Plus, which lasts longer. I started out with the Slims because the Plus size was too heavy for my ear, especially while I was healing. After a while, my left ear was able to handle the Plus size but up until about a month ago, I wore mainly Slims on my right ear. Now I just use a Plus on each ear, and the batteries usually last me the entire day. If I’m staying up really late, I might need to switch them out. With the Slimcel, it was getting to where I had to change batteries at least once, sometimes twice. (I need to get new batteries, since these are now four years old!) I keep two backup batteries in my purse, and I have four on my charging station that are always ready to go.
When my batteries die, there is no warning. With hearing aids, I could usually tell when the battery was about to go…my hearing would get slightly worse. Now, you could take the CI off, slip the battery off and then back on, and see how many lights flash on the processor. (Four lights means it’s fully charged; one means it’s almost depleted.) But as far as just wearing it and having the battery die, it just goes. I mean, one second you hear and the next you don’t. It’s a little weird, but I’m used to it now.
The CIs have enabled me to hear things I didn’t hear with my hearing aids. Before I lost all my hearing, I wore bi-CROS hearing aids because my right ear was completely deaf. So I wore a ‘transmitter’ on that ear, which looked like a regular hearing aid, and it wirelessly transmitted the sound coming in on that side over to the hearing aid I wore on my left ear. Now I actually hear things in each ear, which took some getting used to. I always used to position people on my hearing side, the left. It took a long time to stop placing myself in position to hear (sitting or walking with people to my left, that is). I never used to be able to tell what direction sound was coming from. It took about two years to start to really be able to do this with my cochlear implants, but now I can often discern which ear “heard” the sound. It is very, very cool!! I also hear more high-pitched sounds, things I never knew even made noise…like bubbles popping, for instance. I have still never heard a mosquito or fly buzz. I suspect my hearing loss is such that I just will never hear that.
I do have some electrodes in the higher pitches completely turned off (two or perhaps three). This is different with everybody – we all have different reasons for our hearing loss. When I hear the higher tones, it makes me very, very dizzy. I can’t tolerate it at all. I think this is probably why I have trouble on the phone. Many people with CIs use the phone, but for me it is very difficult. I can understand computer voices (the voicemail menu, for instance) but when a real voice kicks in, I often struggle to comprehend what I’m hearing. I have a phone that captions the conversation on a screen for me. There’s a bit of a delay, and many times the words are captioned incorrectly, but it’s definitely better than nothing! I can handle a very short conversation but I no longer use the phone about 95% of the time. I stick to texting and email. I think missing those higher pitches makes it harder for me in that situation, since that’s what helps us understand voices.
Same with the TV – I do still need captions when I watch TV or movies. It’s hard to explain, but unless I can see a face and read lips, it just sounds like…sound. If it’s very quiet, the person is not speaking quickly and their voice is very clear, I can sometimes follow along. But there’s almost always some kind of other background noise – music, laughter, gunshots, what have you — that get in the way of understanding what I’m hearing.
I’m not disappointed by this, or apologizing for it. I mean, my gosh—I’m deaf, hearing via a little computer I wear on my ear, and I can talk a bit on the phone and hear music, television and movies. So I still need some help with captions – so what? I was going to be happy even if all I heard was environmental sounds…anything other than 24/7 tinnitus and no real sound other than the crazy noises in my head. So I’m extremely pleased, thrilled even, to be watching TV with captions and cautiously, sparingly, using the telephone.
After I had the surgery, I could not hear. I had to wait a month before I wore the external parts (the processor and magnet headpiece) and got them ‘activated’ so I could hear. This is different with every CI clinic; some places do activations a week after surgery, some wait longer than a month. I was glad to wait a month because my ears were definitely too sore to wear the processors before that. I really did need that time to heal. My skull was still swollen even a month later and I had to use really strong magnets to keep the headpieces in place (I’ve since switched out to lighter magnets).
To activate the CIs, the audiologist will hook you up via a cable to his/her computer. (They take the battery off the CI and replace it with the cable.) You listen to beeps and tones and tell them what sounds most comfortable. At first it all sounds weird and robotic; some people just hear beeps instead of actual sound. As days go by, your brain adapts and you begin to hear things in a more normal way. Voices sound strange, like Darth Vader or the chipmunks.
I go back periodically for “mappings,” where I get connected to the computer and the audiologist adjusts the volume and fine-tunes electrode-related things. In the beginning I went every week, then every month, every 6 months, every year…now I just go when I feel I need an adjustment because my hearing seems off. I can get future improvements via the computer programs they put on my processor, without having my internal component replaced.
The surgery usually makes you lose whatever residual hearing you had. This was not an issue for me – I had no hearing to lose – so being deaf during recovery was just more of the same. But you don’t have to be completely deaf to get a CI – you just have to score low enough, wearing a hearing aid, on the hearing test. (How low your score needs to be depends on insurance and/or the clinic.) It used to be that you had to be pretty much deaf to get one, but over the years that threshold has changed and now there are many people who still have hearing and get a CI in order to improve upon that hearing and be able to hear voices again. There are many people who wear a CI and a hearing aid. Incidentally, Dave has looked into getting a CI because he is completely deaf in his left ear and wears a hearing aid in the right. He gets his medical coverage through the VA, and right now he tests too well with his hearing aid on to qualify for a CI for his left ear.
Styling my hair can be a little bit of a pain – I have this cord running from my ear back a couple inches on my head to the magnet. I can’t run my fingers through my hair to fluff it up or smooth it out without catching on the wire. I take my CIs off to style my hair, and I have to be careful when I put them on to keep the wire from flattening a big section of hair. (This is a girly thing…I’m sure guys don’t have this problem!)
View from back, wearing both CI’s
I don’t try to hide my CIs. I think they’re really amazing and I like to show them off. I very rarely get asked about them. I never notice people looking at them although Dave has said he’s seen people behind me looking at my head (I have colorful covers on the magnets). Only once have I had someone ask me about them; it was in Target, and a lady walked past me and then doubled back. She asked if I had cochlear implants and we began talking; it turned out that her daughter had a CI as well. I also saw one guy with a CI at my daughter’s school her senior year. (She won an award and they had a breakfast for the kids and their families.) Afterward, when people were mingling, I saw him talking to somebody and it was very easy to see his CI. When there was a lull in the conversation, I went over to him and we talked a bit about our CIs. I never did this with people who had hearing aids! :)
I just realized how absurdly long this is, so I’ll wrap it up. I know I didn’t cover everything, so if anyone is reading and has a question about CIs, I’d be happy to answer (if I can…I’m not really up on the technical aspects of things, for instance).
Perspective
Three years ago, I woke up on this day and put on my hearing aids. I didn’t really expect to hear anything; the day before was my doctor appointment/hearing test when I found out I was totally deaf in both ears. But still, there was that little hope that maybe they were wrong, maybe my hearing was coming back.
Just the act of waking up and remembering my hearing was gone made me sick to my stomach. Another day of working so, so hard to understand what everyone was saying. All I had to rely on was my speech reading skills, with a few signs and finger-spelling tossed in. My mind was just in constant turmoil; I wanted to curl up in bed and cry and refuse to believe this was happening to me, but I had my kids to think about, candles to make and ship.
The first entry in my blog was called “Hindsight is 20/20.” In that entry, I was looking back at that day, wondering if it would have mattered if I had realized all those ‘weird hearing’ moments were actually a sign of things to come. Maybe I would have gone to the doctor sooner…would that have helped preserve some of my hearing?
Now, though, I’m thinking that I wish I could have looked forward from that day, or that time in general. If I could’ve seen myself today, right now, sitting here typing and hearing the keys as I hit them, hearing the door slam as Dave goes out to the garage, hearing Toby’s doggie nails as he walks across the floor…well, I could’ve been spared so many days of sadness. I would still have grieved losing my natural hearing, because nothing can bring that back. But if only I had known that this absolutely amazing technology would let me hear things I’d never heard before!
I was talking to Dave about the fully-implantable CIs they are working on –you have to have surgery every 10 years to replace the implant because the batteries only have a finite life (of course). As we debated the pros and cons, I realized that I really like the situation I have now. I really don’t mind being in my ‘natural’ (deaf) state when I’m sleeping, for instance. If I had the added input of noise and sound, I’m not sure how well I’d be able to sleep. Even when I still had some hearing, I took my hearing aids off at night and had a much reduced level of sound coming in. I’ve basically never had full hearing while I slept. I definitely wouldn’t want to have surgery every 10 years!! On the other hand, it would be awesome to be able to hear while I was swimming, and to not worry about getting my CIs wet if it’s raining.
Right now I feel like I have the best of both worlds. Who knows what the future brings? Someday I might write another blog entry referring back to this one, talking about all the wonderful advancements I wish I had known about back on April 17, 2011. 
Get the Balance Right
It’s been a year since my last mapping, which is CI-speak for reprogramming my cochlear implants. When I first got them, I went to the audiologist weekly for new maps. Then I progressed to every month, then 3 months and finally, 6 months. This is the first time I’ve gone a year between mappings.
The audiologist who did my last 2 mappings was out on maternity leave, so this time I saw Kathy. She did my original hearing tests when I first lost my hearing in 2008, and also did my CI assessment. However, she was on maternity leave when I had my surgery and was activated, so she has actually never done a mapping for me before. I was excited to work with her again because I really liked her and she was so nice and helpful when I was going through my evaluation process.
Kathy was still with another patient when I was brought back, so a different audiologist (Kris, who did my activation and most of the early mappings) and intern/student got me started. They took me right to the sound booth for testing (my favorite thing, whee). There doesn’t seem to be a set pattern with this – sometimes I’m given the hearing tests before my mapping and sometimes they wait and do it after I’ve been mapped.
I started with the tones, and they let me choose which ear to test first. I opted to go with my right ear first, which is the one that’s been deaf the longest and performs worse on these tests. It stresses me out the most to have this ear tested by itself, so I figured I’d get it over with and then my results would get better from there on in. This actually took away some of my ‘perfectionist’ stress – the hearing tests always make me feel like a bit of a failure, even though I know that’s ridiculous. (I mean, if I was tested without my CIs, I wouldn’t be responding at all – I looked at my hearing tests from when I lost my hearing and the marks are almost all along the 110 db line with little arrows down to 120 db, and a couple around 100 db.) But starting with the worse ear and working my way up made me feel like I was accomplishing something as my responses got better. Just one of my weird personality quirks, I guess!
They tested each ear separately and then both together. I always forget to ask for the results of these tests (so I don’t have official results in front of me) but they did mention that I didn’t give a response for some of the higher frequencies. These are still almost impossible for me – if I get anything at all, it’s just the sensation of the CI processor compressing the sound down because those high pitches set off the noise compression program. This time I didn’t even sense that – I guess I just wasn’t hearing the higher pitches at all. I think this was with my right ear – I know she said it happened with one of my ears, not both. (I was using my regular listening program, not the background noise compression program, but even the regular program will compress.) We did work on the high pitches later on during the mapping; more on that later.
After the tones, I listened to the man speaking sentences. Last time I was tested, the audiologist spoke the sentences and I did much better than normal, especially once they added in the static/background noise. This time, I did pretty good in quiet – I’m not sure about my right ear, but I got 100% correct with my left ear only and with both ears. In noise, I think I just caught a couple of words with my right ear – it is very, very difficult for me to pull his voice out of all the background noise – and I did better with my left ear, and then FAR better with both ears.
I was quite relieved to get out of the sound booth and go back to the office for the official mapping! Kathy started by asking me to just talk to her about my hearing for the past year. I explained that for at least the past 6 months, I had been using the background noise program pretty much exclusively. (My cochlear implants can store 3 different sound processing programs or strategies. I have one for regular listening in Slot 1, one for background noise compression in Slot 2, and one for the Direct Connect earhook in Slot 3.) The regular listening program was just too loud; I felt like it was overwhelming, my voice sounded very loud and echo-y to me, and the background noise compression program was just more comfortable.
I had really not used my Direct Connect program at all – I was mainly using this to connect to my mp3 player when I was using the treadmill, and now I walk with Dave on a daily basis and almost never use the mp3 player. So I asked if I could try a T-coil program on that third slot instead (to help with the phone and utilize things like FM and loop systems that usually use T-coil).
When I get mapped, I have to take off the CI that is not currently being mapped. I hand the other one to the audiologist and she removes the rechargeable battery and slips on a connector that connects my CI to her computer via a long cord. Then I put the CI back on. During all of this, I don’t hear anything at all so I rely on speech reading. She hands me a chart to use to indicate whether the sound I’m hearing is too loud, too soft, comfortable, etc. There are probably 8-10 different levels of sound I can indicate on the chart. This time, I also got a chart to use for comparing the volume level of two different sounds. This was totally new to me and I really liked it – she was using it to try to make sure all the electrodes were at a similar, comfortable volume.
So I’m sitting there in total silence and then all of a sudden I hear a “boop boop boop” sound coming into my ear. I listen for a second and then indicate if it’s comfortable, too soft, too loud, etc. Then I hear a different tone for a few seconds, then the original one. Now I have to report whether one sounds louder or softer than the other. It’s kind of tricky, because they are different in pitch – some are high pitched, some are low – and I need to just think about how loud they sound. Most of this mapping was done with comparing the volume of two different electrodes, and it was really interesting to do it this way. I felt like it really helped to be able to compare the volume of two different sounds rather than just listening to one and reporting whether it was too loud or too soft.
Once all the electrodes are mapped (and I’m still connected to the computer), the CI is turned on and I have to listen and let the audiologist know how things sound. My initial reaction is to always say it’s too loud, partly because when I first put my CIs on, the big rush of sound is always a bit loud and overwhelming. If I wait a couple of minutes, things settle down and sound okay. So Kathy reminded me of this, and suggested we just talk for a few minutes. I had Dave talk, so I could see how his voice sounded, and the four of us just chatted for about 3 minutes. I was surprised to find that I didn’t need the sound lowered after all – things started to sound really good and comfortable volume-wise.
The right side was mapped the same way – I took off my left CI, was connected to the computer and, again, I compared the volume of two different tones for the majority of the mapping. I still have some high pitched tones that just make me completely dizzy – I hear them and my eyes feel like they are spinning around in my head. I discovered that I already had one electrode turned off on the right side (there are 16 electrodes on each side) and Kathy ended up turning off two more. If I remember correctly, I think she said that they were probably in a part of the cochlea that wasn’t effective and if they stayed on, things would sound worse (and I would get that vibration/dizzy feeling). When they turn off an electrode, the frequencies get allotted to another electrode so it doesn’t affect the quality of what I hear. I hadn’t even realized I had one electrode already turned off on the right side, so this was a very informative mapping session.
Things sound really good now – she worked on those high frequencies to make sure I’m getting more of them. Even though I don’t like the sound of high frequencies, they are really important for speech and clarity. Now I’m using the regular listening program 90% of the time, and I only switch to the background noise program if I’m in a really loud situation.
I also found out that my background noise program was only at 40 IDR (Input Dynamic Range, which basically is how many sounds are allowed in). Normal IDR is 60 (I believe she said it used to be 70). You can have your IDR set up to 80 if you wish – it’s all about what you feel sounds best. But 40 is pretty low! She changed the IDR to 50 on my background program and made my other programs 60, but said I can have it increased if I want (or lowered). Right now I feel like it’s a good setting for me – I can tell I’m hearing more on the background program, but the loud noises are still compressed so it’s kind of nice to get a bigger variety of sound.
I will probably go back sooner than a year if ClearVoice is approved before September 2011. That’s a new software strategy that is currently in FDA trials and is awaiting final approval. I know quite a few people outside the US that have it already and really like it, so I asked Kathy to email and let me know as soon as it’s available here. She said they are going to start training on it in October (next month).
One final note – my SlimCell batteries were starting to last for only about 6 hours, which is really short. I’ve noticed since my mapping that they last longer, which is kind of weird – but it’s a nice side effect, so I’m not complaining!
Bilateral CI Seminar in Chicago, March 6th
If you’re wondering about bilateral cochlear implants (either you have one already and are thinking about another, or you’re wondering whether to go for it and do both ears at once) and you live near Chicago, there’s a seminar coming up that you won’t want to miss!
This seminar is being held by the Bionic Ear Association (BEA) on March 6 (a week from today!) at the Museum of Science & Industry in Chicago. In addition to the seminar, you’ll get a chance to tour a new exhibit at the museum: YOU! The Experience. Per the museum website, this exhibit brings the elements of your choices, your personality, and your environment together into an interactive exhibit examining and celebrating the experience of life itself. It is one of the first and largest exhibitions to showcase the connection between the human mind, body and spirit in the 21st century.
Advanced Bionics is a permanent part of the exhibit (I haven’t seen it yet, but I imagine it’s part of the High Tech Human section). How cool is that?!
Here’s the official invitation from Advanced Bionics – if you’re interested, be sure to click the link and register so they have a wristband waiting for you on the 6th, to give you admission to the museum and to the seminar:
Invitation to the BEA Bilateral Seminar
I’ll be there, one of the people answering questions about being bilateral. This is one of the things I really love to do, because being bilateral has made such a huge difference in my life. Getting the chance to share my experience and to answer questions about it is so exciting!
I’ve learned something about myself when I do this sort of thing – I totally start shaking when I talk. It doesn’t matter if I’m just sitting at a table with other people or if I’m standing in front of everyone; it has nothing to do with being nervous or scared. It’s total adrenaline from the excitement I feel when I talk about this sort of thing. I noticed it when I was part of a similar seminar at my doctor’s office in November. This was a seminar about cochlear implants in general, for people who qualified for a CI but weren’t sure they really wanted one (or two). I was there, along with another lady who had a Cochlear brand CI, to answer any questions people might have.
This was totally informal, and I was really comfortable – it was in a conference room where I had no problem hearing the questions people asked, and I just stayed seated (didn’t have to stand up in front of people). But once I started answering questions, I was literally vibrating – teeth chattering, totally shaking. It was bizarre – I was just so full of adrenaline and excited about sharing the details of how my cochlear implants changed my life. So if you do happen to come to the seminar and you see me quaking in my boots (or sneakers, LOL) then you know why!
Seriously though, I’m really looking forward to it and can’t wait to see the exhibit. It’s been probably 4 or 5 years since I’ve been to the museum, even though we live less than an hour’s drive from Chicago. On top of that, the topic of the seminar, bilateral hearing, is so near and dear to my heart. Since I got both CIs at the same time, it’s sometimes hard to separate the benefit I got from cochlear implants and the benefit of bilateral hearing. Not only did I get the joy of hearing again, but the absolute mind-blowing effect of hearing well from both ears (something I really had never experienced)…amazing! It would have still been great to get one CI but getting both at once (and I can really hear the difference if I’m just wearing one CI or the other) has brought me a level of hearing I never thought was possible.
And yeah, I’m shaking as I type this…I can’t help it. 
I Can Hear It In Your Voice
“You don’t sound like you’re deaf.” Since I’ve gotten my cochlear implants, I get this a lot.
A few weeks ago, Dave and I were talking with someone about hearing loss. I was explaining how my CIs worked and that when I take them off, I’m totally deaf. He looked amazed and said, “If you hadn’t told me, I would never have known you had any type of hearing loss at all.”
“Hang on” I said, as I slipped the magnets off my head and let them dangle down to my shoulders. Then I continued speaking. “I can’t hear myself talking now, but Dave and Paige tell me that my voice changes when my CIs are off. They can tell when the battery dies or I’m not wearing my CIs at all. Can you tell the difference now?” He looked stunned. He could obviously hear the difference.
One of these days I’ll have to tape-record myself talking with and then without the CIs, so I can hear the difference too. It’s like my little parlor trick, to actually prove that I’m deaf. Does anybody else ever do this?
An Amazing Year of Sound
It’s been a year since my initial CI activation, the day I was first given my external processors and my brain was introduced to sound through my cochlear implants.
My Activation Day was August 20, 2008, and it was crazy-hectic because it also happened to be the day my daughter was registering for her freshman year of high school. This year, she was scheduled to register for sophomore year on August 20 again. Even though she was currently living at her dad’s for the summer, and had told us she wanted to make a permanent move to his house so she could go to school out there, I still hoped she’d change her mind. So I told Dave to make the appointment for my one-year mapping on the 21st and to keep the 20th free, just in case. I didn’t want to chance another repeat of trying to fit too many things into one day.
Paige came home the weekend of August 14, for her first visit all summer. We celebrated her 15th birthday and went to the movies. And she gave me a gift: she asked to come back home. Of course, we welcomed her with open arms, and finally the house feels normal again. To say that I am thrilled is putting it mildly!
So we all left bright and early Friday morning for my one year mapping. It had been six months since my last one in February. A mapping, by the way, is done with an audiologist who is trained to program cochlear implants. Each of my processors is hooked up to a computer and programmed based on my responses to the sound that I hear. Each of my implants has 16 electrodes that can be manipulated with this software.
I told my audiologist, Jill, that things have actually been sounding too loud the past couple of months. I’ve noticed I’ll start the day with the volume around 10:00 and some days never make it louder; other days I might go up to the 11:00 mark but very rarely 12:00. If I go up to 12:00, everything sounds very loud and like it’s echoing. (Usually the CIs are programmed with the volume wheel at 12:00, which is like “0”.)
Based on that, we started off by setting the sound levels again. To do this, I listen as tones are sent to my ear through the CI and I let Jill know when the sound is loud but comfortable. On the left side, which is my better ear that has been deaf the shortest amount of time, I had her leave most of them the same; I think there was one or two that she turned down a bit.
On the right side, I actually needed more volume for the first 3 tones I listened to. This makes me wonder if maybe the issue was more that I needed more volume on the right…and I had been turning the left side down to make things sound more even. The right ear is the one that’s been deaf far longer, so it has more work to do than the left.
However, the last 2 or 3 tones on the right side were super high pitched and just made me dizzy. I could hear them, but they weren’t loud — they just really made my eyes feel like they were spinning around in my head. So she turned those down until they didn’t make me dizzy any more but I could still hear them.
Once I got all the volume to where it was comfortable and clear at the 12:00 volume mark, we were set. It was time for the hearing tests.
Long-time readers of my blog know that I get really stressed out at hearing tests. I hold my breath, trying to hear the tones. I just can’t seem to go into the testing booth and be relaxed.
So this time, I tried to psyche myself out a bit. I decided to approach it as if it were a trial or study I was participating in. I mean, I always thought it would be cool to be part of a clinical trial, and I imagine it would consist of a lot of these tests. For whatever reason, I associate a trial or study with positive feelings. And it actually worked! I was able to feel like I was helping someone out by doing this testing, and just relax and listen. When we got to my worse ear, the right ear, I tried to just focus on the fact that it was so cool to actually be able to hear with that ear (for the past 15 or more years, they would test me and I’d never even respond on that side).
I still have a problem with super high tones just activating the noise compression program on my CIs, which makes the sound damp down when they are played, so for some of those I couldn’t give a response. I assume my hearing test with the tones was pretty much the same as always because Jill didn’t really mention those results.
After the tones, we did sentences. I sat in the booth and listened as sound came from the speakers (no headphones) and repeated what I heard. I listened in quiet with both ears, then each ear by itself. The CD player was broken (YAY) so Jill just read the sentences to me, covering her mouth so I couldn’t lip read. I got 100% with both ears, went from 96% to 100% with my (better) left ear, and from 60-something % to 80-something % with my right ear. (I should have written the numbers down…one of these days I’ll remember to do that.)
Then she added static. Now this is where I really don’t do well. With the man speaking sentences on the CD, it’s like his voice is the same tone and volume as the static, and it just gets lost for me. Last time, they had to turn the static down to get much of a response from me. With the original static level, using both ears at once, my Sentence in Noise result was 19%.
This time, I had it easier because it was Jill’s voice and not the man on the CD. The static was at the original, louder level though. I was VERY nervous because the static was so loud. She started speaking and it was just like her voice cut through the static and I could hear her just fine. I got 100% on the Sentence in Noise test, with both ears! (They don’t test me in noise with the individual ears.)
As we walked from the booth to the mapping room, Jill said, “Could you hear the static?!” I had to laugh, because it was so loud to me — but my results were so drastically different that I think she thought her static button was broken. (I did notice that at one point she stopped the test, turned the static off and then on again.)
I’m not sure how I would have done if I’d had to listen to the man on the CD instead of Jill’s voice, so it might not be a fair comparison. I have a feeling my results wouldn’t have been 100%, but I do think they would have been far better than 19%!
I had her program my backup processors with the new levels, and Dave asked if I should be switching between my regular processors and the backups. Jill said it would be a good idea to switch them out periodically so if I end up having a problem with the backup processors, I can get them replaced while they’re still under warranty. I like that plan, so I’m going to switch out my processors each month, just to give them all more of an equal workout.
I don’t need to go back now for another year, unless I have problems in the meantime. It’s been a couple of days since my mapping and I’m really happy with the way things sound and the volume levels, which I’ve been able to wear at the 12:00 mark all day long.
My cochlear implants make each day a little miracle, and I will never take them for granted. It’s been an amazing year of sound!
Sick Hearing
So last week my hearing got really weird. I realized things were sounding really loud again and I was tempted to turn down my volume. I thought, “Oh, maybe this new T-Mic is going out like the other one” and switched it with one of my back-ups. Nah, everything still sounded the same (and weird).
As the day went on, I realized everything sounded like it was echoing, especially voices (including my own voice). The volume stopped being an issue, and instead it was just the quality of the sound…echoey and almost like I was in a tunnel, hearing things shouted down to me.
It kind of freaked me out, so I went and changed out my headpiece (the magnet that attracts to the magnet inside my head). I even went to one of my back-up processors, but still, everything sounded weird and echoey.
This is one of the things I still need to get used to with my cochlear implants. When things sound different from what I’m used to, does that mean it’s an equipment/hardware problem? Do I need a new mapping (which is the software that the audiologist programs for me)? Or is it just a temporary change due to fluctuations in my health?
Maybe in time it’s one of those things I’ll just get a feel for, but right now I’m hyper-sensitive to any changes in my hearing…especially after the recent revelation that my T-Mic wasn’t working to full capacity. So my first move now is to check the hardware. I switch out my processor, T-Mic and headpiece to my back-ups and see if there’s a change in how things sound.
Since there was no change, I figured my next move would just be patience. If it was a health-related hearing change then I would expect to see improvement in about a week. If a week or so went by and my hearing didn’t improve (or got worse), I’d put in a call for a visit (and mapping) with my audiologist.
You know how your hearing gets weird when you have a cold? Usually it gets kind of muffled, and you feel like if you could just yawn and “pop” your ear, things would be clearer? I assumed that kind of thing wouldn’t happen to me anymore now that what I hear goes right from the electrodes in my cochlea to my hearing nerve. I figured I was bypassing all the stuff that makes your hearing get weird when you have a cold. But I’m not a doctor and don’t know the workings of the inner ear very well. A while back, I’d mentioned to other CI recipients that when I felt like I might be coming down with a cold, my hearing (with the CIs) got weird. Most said the same thing happened to them.
So I thought, well, a cold has been going around the house. My husband and daughter had it, and my son and his girlfriend stopped by the Monday after Mother’s Day and they ended up getting sick too. I never got sick, but I figured maybe my body was fighting something off and I didn’t have the usual symptoms (runny nose, sore throat) but it was still affecting my hearing somehow. I don’t know – maybe the Eustachian tube was swollen or something?
So I waited it out. It was a little scary because the first day I noticed it (this was earlier this week, on Monday or Tuesday) I was actually having a hard time hearing by the end of the day. I had my volume up around 2:00 (12:00 is the normal level) and I never, EVER move it past 12:00. The next day it was a little better though…voices were still echoing a bit but my volume stayed stable all day long. By the third day, things sounded back to normal again.
I never did have any typical cold symptoms, other than being a little more tired than usual, but I’m going to assume this was a health-related hearing fluctuation.
If anyone knows why hearing changes when you’re sick even once you have cochlear implants, I would love to know! Or if you’ve experienced the same kind of thing, please leave a comment and share…I just find it really interesting that this happens (and I like to know I’m not alone, as well).
It’s Been Six Months Already
I had my six-month mapping on Feb. 6th. Six months! (Although, technically, it won’t be six months until Feb. 20th.) When I had my three-month mapping, the audiologist didn’t change any settings; she just gave me a hearing test. I could tell I was ready for some changes though…more volume and such.
As always, I was not looking forward to the hearing test portion of the mapping. It’s not like I majorly dread it or anything, it just takes SO LONG and I never feel like I’m doing it right, and I get so tense and forget to breathe and ugh, it’s just kind of a drag. Part of it is that it feels like it goes on forever. For this six-month visit I ended up taking…uh…I think it was 8 tests. I can’t remember if it was 8 or 10. But anyway, I do the tones/beep test with both CIs on. Then I take the left one off and do it with just the right side. Then I switch and test with just the left side. Then I do the same for the sentence test: both CIs, left CI, right CI. Then they add noise, and I did the loudest noise test with both CIs on (luckily not doing each side individually because I would’ve just sat there, saying nothing, the whole time). Then they dropped the noise down and I did that test with both CIs but I can’t remember now if I did it also with just the left and just the right side. Hmmm. I don’t think I did, though.
When they called to confirm the appointment, they told Dave I wouldn’t be seeing my usual audiologist. For whatever reason she wasn’t available that day; I could’ve seen her the day before, in the afternoon, but I like to be home when Paige gets home from school so I just kept my original 10 am appointment. We didn’t recognize this audiologist’s name and she wasn’t on their website, so I really had no idea who I’d be seeing.
I always kind of enjoy the waiting room at this doctor’s office because it’s the only place I’m likely to run into other people who are deaf or hearing impaired and/or who have a CI, hearing aid, or other device like the Baha implant. I just think it’s kind of cool, since I rarely even see people with a hearing aid out and about in the “real world”, much less a cochlear implant.
When we walked in for this appointment, there was nobody else in the waiting room. Then this older lady walked in, smiled at me and said, “I’m following you!” (She had been in the public bathroom at the same time I was.) It was great to actually understand this little comment that she tossed off so casually. Then a middle aged guy came in, and he’d obviously had surgery not that long ago. He was with the older lady (his mom, maybe?) and I heard them say they were there to see my doctor. A few minutes later he came into the waiting room to bring the patient back to the examining room, saw me and got a big smile on his face. I hadn’t seen him since my follow-up visit after my surgery. He asked how things were going and I told him they were fantastic, and I love my CIs. It was really nice to see him and let him know things were going well.
One thing I’m still getting used to is the inadvertent eavesdropping that I sometimes do now that I can hear better. I was never able to do that because I always had to read lips, and I wasn’t about to stare at people! 
Now though, I sometimes hear things without even meaning to. When this guy was done with his appointment, he and the woman were at the window scheduling another appointment. I heard him say he had his surgery one week before (it looked like it was for the Baha implant) and they set up another appointment for Feb. 20th. This was with their backs facing me so I couldn’t lip read even if I wanted to. It was really weird, realizing I was catching all of this conversation without watching their faces.
It turns out the audiologist I saw had started about six months earlier, right about the time I was initially activated. She had another girl with her, who turned out to be a trainee or student (I’m not exactly sure how it works there but there is often another person in training when I go in for mappings). Usually the trainees are kind of meek and quiet but this girl was so confident and pretty much took charge of the whole mapping, that I originally thought she might be a rep for Advanced Bionics! I think she must have just been very far along in her training and they were letting her take charge. Usually it’s the audiologist who does the actual mapping while the trainee sits next to her, watching. This was the opposite – the trainee did the mapping and hearing test, while the audiologist was there watching and answering any questions she might have.
I really liked both of them and they worked well together, so I felt pretty confident that it would be a good session even though it wasn’t my usual audiologist. They both seemed to really know the AB software too; there was no hesitancy at all. That’s the only thing I used to wonder about my other audi…I got the feeling she worked more with Cochlear Corp. software than Advanced Bionics. Even though they are both cochlear implant companies, they have different mapping strategies and software and I think it helps if you have an audiologist who really knows the software and how to use it.
The visit started with me telling them how things have been going the past three months – things I’ve been hearing that I never heard before, and the fact that I leave my CIs on the regular volume when I put them on in the morning. I used to have to turn the volume way down when I first put them on, and then I’d gradually increase the volume up to the zero mark as the day went on. I also figured out that if I was exposed to loud, constant sound then I would get used to volume faster and be able to tolerate it better. So I started turning the fan on in the bathroom, which to me is a really loud noise. I would leave it on while I washed my face, put on my makeup and fixed my hair. By the time I was done, I would barely notice the loud fan which originally had been so loud it would make me wince. Then all the regular noises of daily life sounded fine instead of painfully loud. It’s weird but it really does work for me…it’s like it wakes up my brain, after a long night of total silence.
Then I showed them my T-Mic and asked if it was the right size. (This is the ear piece that attaches to the processor, and it has a microphone at the end of it.) It kind of felt like it was so long that it rested against the side of my ear instead of hanging down into the middle of my ear like it should. They looked and agreed that it did look a little big for my ear. I also tend to get a lot of static on that side, which goes away when I tap the T-Mic. I wasn’t sure if it was a problem with the T-Mic or maybe the headpiece. So I asked if they had a smaller T-Mic I could try, and Jill (the audiologist) said she would call Advanced Bionics and ask.
After our initial chat, they started the mapping on my left side. I did the usual routine – listen for the tones and let them know when they were loud but comfortable. After we were all done I asked if there had been much of a change and Jill said yes, I did get quite a bit more volume. After that I had to listen and let them know when the sound was first audible to me. That is always tough because the sound is so slight, you really feel like you’re imagining it!
I explained the way my programs were set up, and we kept them the same – program 1 is my day to day program, program 2 is to eliminate background noise (in the car, parties, stores, restaurants, etc.) and program 3 is half microphone and half Direct Connect for using my MP3 player. I did notice (when I first used my MP3 player after this visit) that my right side is 100% Direct Connect with no microphone. I wasn’t sure if I’d like that but the right side needs more work (it’s been deaf longest) so it’s actually kind of nice to have no distractions coming in on that side. I can still hear well enough having the microphone 50% active on the left side only, and it makes it a little easier to hear my music over the sound of the treadmill having the microphone turned off on the right side.
As always, after the ‘loud but comfortable’ levels were set, then they turned my CI on and I had to let them know how loud it was. It’s usually really loud and I have them turn it down a bit, but this time I didn’t need the volume turned down as much as I usually do. I’ve learned not to go on my initial reaction when the CI is turned on again, because it’s always super loud after sitting in silence for a while. I give it a minute and then form an opinion after I’ve gotten used to it a bit.
We switched to the right side, doing the ‘loud but comfortable’ settings again. This time, however, the third or fourth tone immediately made me so dizzy that the room was spinning. (This was the initial tone that she played, which is usually pretty soft and I have her go up in volume from there.) Although I could hear the tone, it didn’t seem very loud…it just made my eyes spin around in my head from the dizziness! They were both really concerned by this, so they turned the volume way down for that electrode (or whatever it was, LOL). I explained that it was not loud volume-wise, and I could hear the tone, but it was just really making me dizzy. So they told me for this tone, the goal was NO dizziness, and to let them know when it reached the point where it was the loudest volume and I wasn’t dizzy.
They switched to the program where I tell them when the sound is barely audible and set those levels, then went back and finished the ‘loud but comfortable’ portion. None of the tones after that made me dizzy, so that was a plus!
Once all of that was done and the volume was comfortable, they told me I’d be getting a hearing test. Dave told me later that he’d been planning to mention to them the stress I have over these tests, and I surprised him by speaking up before he could say anything! I said, “Okay, now, I have a question about the hearing test…” which just cracked us all up. After we finished laughing, I just came right out and told them how I tend to take the tests – that I hear the sound, press the button, and then hear it again, much softer, and I wait until I hear it again before I press the button. I explained that I’d had a test recently where my CI was shutting down for the high pitched sounds, so I was pressing the button whenever I sensed a change in the sound, and I’d been kind of sternly told to only push the button if I was SURE I was hearing the sound. So I wasn’t really sure how I should be doing it…push the button anytime I hear anything, even if I’m not positive? Or wait until I’m sure I’m hearing something before I push the button?
I think this was the best thing I could’ve done, because it opened up a great dialogue between me and the audiologists about hearing tests and how I react to them. The trainee (I never did catch her name, but I think it was maybe Leeann?) told me to push the button whenever I heard something and not to worry about it. They know a lot of people get stressed about the tests, but it’s just a way for them to measure how I’m doing. We laughed about my tendency to hold my breath and she told me to just relax as much as I can, because it’s not a pass or fail kind of thing. They were just so laid back and nice, and I felt so much better knowing that they knew my little quirks as far as testing goes. It was the first test I’ve gone into without that major sense of dread!
As I mentioned, there were LOTS of tests, first with both CIs on and then each ear individually. I think if I was just getting one ear tested (one-third the amount of tests) it wouldn’t be such a chore. But I did pretty well – they said for the tone test I tested in the “normal range” of hearing, which is their goal for CI patients so they were very happy with that. I think they must have changed something with the mapping because I even heard all but one of the high-pitched electrodes without my CI doing the sound compression thing!
The sentences in quiet went really well, even with my individual ears. I didn’t expect to do very well with my right ear but I think my score was 62% for that ear. It was something like 96% for my left. I know I got 100% on one of the sentence tests and I can’t remember which it was, but I think it was the sentences in quiet. Woo hoo!! Those tests are always so weird for me because I never expect to understand any of them without lip reading. Then if I can get myself to relax, I listen to the sentence and it just kind of clicks. Oh! I actually heard that!
Then they added noise…do we all hate this portion or what?! LOL This noise was LOUD and in the past, I don’t think I’ve ever gotten any of the sentences. I did actually get some of the sentences right with both CIs on, but not many. I want to say I was in the 20% range for that test, but I can’t remember…I should’ve written things down or asked for a copy of the results. Then they dropped the noise down and I did much better on that test….I think my result was in the 90th percentile somewhere. I don’t think they tested my ears individually for the noise tests…well, I know for a fact they didn’t with the loudest noise but I think even the quieter noise test was just done with both CIs on. And then it was over!
They did say that although I didn’t do fabulously on the loudest noise test, the background noise was very loud and a lot of people don’t do well on that. The sound of the sentences was only 10% louder than the sound of the noise. The quieter test had the sentences 20% louder than the noise, which is still difficult for a lot of people, and I got over 90% right. So I guess I’m doing better than I realize.
I never have high expectations for myself with the tests because my whole goal in getting cochlear implants was just to hear SOUND, any sound. I just didn’t want to live in that world of total silence (except tinnitus) any more. So it’s not like I had still some hearing and was hoping CIs would give me perfect hearing. I am just thrilled to hear anything at all, and being able to hear as well as I do is just icing on the cake!
While I was taking the hearing tests, Jill was on the phone with Advanced Bionics about my T-Mic. They do have a smaller, pediatric T-Mic. They aren’t cheap (I think they are $140) but the rep put it in as a replacement for a faulty T-Mic. He could only do it for one ear though; if I want a second one for the other ear I’d have to just buy it (which is fair enough). The ironic thing is that the T-Mic I was replacing really did turn out to have a problem. I got the pediatric T-Mic a couple of days later (they mailed it) which works great for me, and sent the other one back. Since I changed them, I haven’t had ANY static at all. So that solved two problems at once! The pediatric T-Mic is a little small and doesn’t hang down quite as far as it could, but it fits so much better than the large T-Mic and it feels better too – my ear isn’t as sore with this one. So it’s a winner! I’m wearing it on the left ear, which is my better ear. One of these days I’ll splurge and get a smaller one for the other side, but for now this is perfect.
Now my next appointment won’t be until August (unless I have problems before then, of course) and that will be my ONE YEAR mapping! Actually, two months from today is the day I was officially diagnosed as profoundly deaf…it’s been almost a year since I lost all of my hearing. It’s amazing how much can change in just one year!
