tech talk

Expectations

Lindsay beat me to writing about her first post-op week. Isn’t it remarkable how little doctors tell you about surgery that you’re about to undergo? When I had my tonsils out at age 30, they warned me that having such an invasive procedure at that age would be “pretty painful”. Ha! Understatement supreme.

She’s feeling stronger every day, and we’re rapidly approaching the moment when Processor meets the Implant for the first time. As she said, we’re still waiting to hear that the new processor from Advanced Bionics is approved by the FDA. Frustrating, but hopefully worth the wait.

In the meantime, I thought I might write a little about the expectations for what a cochlear implant might do for Lindsay. She has already gotten a few messages from friends and family asking if she can hear. This is one of her big worries: to have people think that this implant will cure her deafness. She is afraid that people that have known her all of her life will come up and ask, “Can you hear me now?” like a Verizon commercial circa 2002. She doesn’t like to disappoint people.

I know this is a little difficult to understand, it took me a while to get it, but the cochlear implant is not a cure for deafness. It’s not a replacement for the cochlea she was born with, nor does it physically attach to her brain in any way. In fact, the actual implant is completely worthless without an external processor. When she disconnects the processor from the implant (again, with the magic power of MAGNETS!) she’ll always be profoundly deaf (the clinical term, not mine).

The technology gives her an approximation of hearing. While the quality of hearing that these processors produce has advanced dramatically (in the 20 short years that the cochlear implant has been in use), she’ll still be missing many “layers” of sound that people with normal hearing experience. And we won’t know what she’ll actually hear until they switch on her processor. It’s important, for her and for people that know her, to think of this technology as a potential improvement to her hearing experience, rather than a cure for being deaf.

There are many blogs that detail various experiences people have had with a CI. They are all interesting, in their own way. To some, it’s a magical device that returns hearing to people that have lost it later in life. To others it’s just a upscale hearing aid. Some people can talk on the phone, and others never learn to. Some start to enjoy music for the first time, ever, and some feel lucky to learn that music is playing almost everywhere you go. Even in grocery stores. (Which, when you really think about it, is kind of strange…)

Lindsay might have one of those overwhelming emotional reactions that some people have, but most likely she’ll just hear a series of “beeps”, at first, as her brain struggles to “re-learn” sound. And that’s another concept that is incredibly hard for someone that has always lived with hearing to understand: Lindsay’s brain, most likely, barely remembers what Sound is. At least, with a full range of auditory frequencies. It has been about 30 years since she could hear enough to not need hearing aids, and at this point without her aids she cannot hear anything naturally. For being implanted, it helps that her hearing loss was somewhat gradual – it increases the chances of her brain remembering sound. But this next year with a CI is going to be a challenging one for her, while she has to process the new sounds she’ll be hearing, through a device that is doing it’s best to replicate sound like a fully-functioning ear would. Again, the processor can’t fully simulate natural hearing. But the doctors think that at the very least it’ll be an improvement over her hearing aids.

Lindsay says that she imagines that hearing with a cochlear implant will most likely be similar to looking at a pointillistic painting. If you take in the whole painting, you get the full picture, but take a step too close and all you can see are a series of unrelated dots. One of the reasons she’s willing to wait for the newest processor is to make sure that she has the very best tool to make sense of every “dot” of sound that will be coming to her.

The irony is that thanks to ever-improving tech, her hearing will get better and better.  My ears, however, bombarded by years of high-decibel snare hits and electric guitar chords, will worsen. Ha! So…it’s exciting, and important, at the same time, her getting this cochlear implant. It’s a journey for everyone involved…Lindsay, especially, and me, too, but also in part the people at Advanced Bionics – we’ll both be giving them feedback as to what works and what needs tinkering.

In the meantime, maybe, instead of asking her if she can hear…just talk to her, as you always have. I’m pretty sure she’ll let you know if there’s a difference!

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post-op

Getting “Turned On”

Lindsay hates the phrase (when applied to the implant process), but it’s what everyone uses.

The moment when the audiologist attaches the processor to the implant for the first time is known as “turning on” the device. Getting “turned on” marks the first time a deaf or hard of hearing person experiences sound through the device. The implant itself does not provide the hearing…in order for the implant to send signals to the cochlea, you have to have an external processor, attached to the implant with a magnet through the skin.

Yep. A magnet. The implant has one, and the processor has its match – currently (depending on the maker or processor), a little disc that accepts input from the microphone (usually inside an over-the-ear device) sends signals through the magnet into the processor, and then to the cochlea and brain. Here’s a more in-depth explanation.

You’ll find lots and lots and lots of videos of people getting “turned on” online. And they’re either tear-inducing…or vaguely uninteresting. Only because the experience is different for everyone, and personal reactions vary, we’re told. We will be able to report more on this in a couple of weeks.

And of course we’ll have our own “turn on” vid, in a couple of weeks, whether the world wants it or not.

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tech talk

Waiting for Tech

Waiting for new technology to arrive on the scene feels like a new phenomenon. At least, at the rate that it has been going in the past ten years or so. Growing up, I don’t remember waiting for the new iPhone every year. But I do, now. I’m not the type to whine and moan about our world becoming a place where we’re addicted to the newest technology, because I have found that you’re either interested in the newest and greatest gadget, or you’re not, and it doesn’t have to rule your life.

That being said, it’s interesting that LJ is in a situation where she’s waiting on technology before she gets the CI. In May, Advanced Bionics came out with some  upgrades that were approved in the States, upgrades that have been OK’d by the rest of the world for a year or so. (That darn FDA! Keeping us safer, but taking a lot more time doing it?) The biggest improvement is the newest implant device, which they are calling the Hifocus MidScala Electrode. The names that AB comes up with are super-confusing to me, still, but from what I gather this electrode is smaller, less intrusive to the cochlea (which means that there is a larger chance that the operation won’t affect LJ’s natural hearing), and more “future proof”. It has 16 current sources, where other companies offer up to 22, but they advertise this thing called current steering, which is a bit complicated to wrap my head around. From what I understand, the electrodes fire at different current levels, which stimulate sections of the cochlea differently, better approximating what is happening in a hearing person’s ear. Instead of more electrodes firing only in one place in the cochlea, the current steering tech sends the more current to where the sound frequency might be, and less through electrodes nearby, which might provide a fuller sound?

Once again, I’m hoping that anyone that knows far more about this than I do can chime in and educate others as to the function of these devices. And I’ll certainly be learning a lot more as I go along…I’m really excited to be able to correct my ignorant self in the future.

So that’s the new implant, and it’s great timing for it to be out and approved a month before the operation. However, the downer is that there is also a new processor that has been released everywhere but here, and as of today (July 6, ’13) it hasn’t been approved. Lindsay got an email from the audiologist asking her to choose which processor(s) she wanted to start out with by next Monday. Otherwise, she’d have to postpone the surgery, because they have to have one processor in hand for post-op.

The new processor is the awkwardly-named Naída CI, but it really looks like a huge upgrade to their last over-the-ear model, the Harmony CI. It’s smaller, comes in nicer colors, has a better microphone. With add-ons, it has a sync capability to Bluetooth devices. It’s also the first device that is coming out of the Advanced Bionics/Phonak collaboration; Phonak being one of the leading hearing-aid companies, there is talk of the two companies being able to build a cochlear implant/hearing-aid hybrid and will especially be nice for those that either are bi-laterally implanted or have a CI in one ear and a hearing-aid in the other. LJ doesn’t have Phonak hearing aid, but could get one in the future. This is another reason she went with Advanced Bionics; at this point in time they just seem to be ahead of the game.

This Naída CI is the obvious first choice to go with, but the danger is that it won’t come out in time…at this point, less than 20 days away. And she has to tell Mickie the Audiologist which processors she wants to start with by Monday. The original plan was to get two of the same processor, so that parts can be interchangeable (batteries, cables, etc.), but there is no point in getting two of the older processors. Once she starts using one, it can’t be returned.

Mickie suggests that she get one of the current processors, and choose a certificate that can be traded in for the newer one when it’s ready. The only other AB option is the Neptune. Completely waterproof, it’s built for highly active people (and marketed mainly to kids, who are more active, I suppose) and people who like long baths. Lindsay only falls into one of those categories, so the Neptune wasn’t really a viable option, at first. But if the Naída takes longer to come to the States, it might be a good start. There are other nice things about the Neptune, besides it being able to be sweated on: it doesn’t have an over-the-ear element to it (which would be a nice thing for her since she’s lived with OTE hearing aids for her entire life), it can be worn a bunch of ways (with clips and headbands and even a lanyard), and it can be color-coordinated to her outfit with a series of snap-on covers. Sexy.

LJ asked for my advice and I really couldn’t help. So I went to the source.

Edie Gibson is an Audiologist and Senior Consumer Specialist at Advanced Bionics. She also lives in Atlanta, and it was great to hear her slight Southern accent when I talked to her on the phone. I was able to ask her any question Lindsay and I had about the three processors AB offered at this time, and really appreciated her frank and candid answers. Edie told me that the advances offered in the new processor (the Naída) were so great it just made sense to wait for it to be approved by the FDA and take the chance that it’ll be ready by her “turn on” day. And that it’s currently an option to pre-order two certificates that can be traded in for the new processor, and not have to have an older one at all. IF it takes far longer for the FDA to say “yes” to the Naída, Lindsay can still choose one of the older processors and it’ll be in her hands the next day. Probably the Neptune, for both bath-times and the color-matching options.

So we’re set. After the operation there is a two week healing time before you can attach a processor to her implant, so hopefully the timing will work out. Crossing fingers! If someone reading this has any pull with the FDA, would you mind putting in a good word for approving the Naída CI Q70 for us?

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pre-op

Pre-Op Thoughts

I was as surprised when she said that she wanted to go see an audiologist about a cochlear implant. She had turned the operation down twice: once when she was little and another time during college. She just wasn’t ready for it, and maybe the technology wasn’t quite ready for her either.

Like most of the hearing world, I didn’t know what a cochlear implant (or “CI”) was before I met Lindsay. A device that simulates hearing in deaf or hard to hear people. A “bionic ear”. I just knew that she didn’t want one. She remembered a classmate getting one, and not liking it. Invasive, and scary. But she wanted me to watch the fascinating movie Sound and Fury, about a two brothers, one deaf with deaf children, and one hearing with deaf children, that become estranged over the subject of cochlear implanting.

After the movie, which is neither pro-or-con CI, I read up on the device. There are some excellent books on the subject, and particularly the subject of getting implanted later in life. Here’s one. And here is another. They give fairly honest and unbiased views. I also read Oliver Sack’s amazing book about deaf culture and the importance of sign language (and of language, in general), Seeing Voices.

We would talk about it, a little. About why she hadn’t wanted to get one, and whether she would ever consider it. Those conversations were a little uncomfortable for me; I had to be as careful as I could not to sound like I wanted her to have one, even if a part of me did. If she was more involved in a deaf community, if she was fluent in sign language and preferred to communicate with it, I’d be learning ASL now, and she probably wouldn’t be considering a CI. But Lindsay does not have many deaf friends. She has always been assimilated into a hearing world. For the most part she is fine with that situation, and we are definitely fine with her. She accepts that she’s handicapped, but it is rarely an issue in today’s world of texting and closed-captioning. As she says: “It’s a great time to be deaf!”.

Every once and a while, though, it hits her. Very rarely. But sometimes I find myself consoling someone that is in-between worlds: not a part of a Deaf community by choice, but not completely able to be a part of the hearing world, either. After spending hours trying to call a government agency using TTY, or when trying to follow toasts at a wedding and finding it impossible, or having to constantly ask what people are talking about at a dinner party. And I’m always surprised when she needs a shoulder to cry on in these situations.

These are rare times that she feels this intense frustration at a world that she can’t fully experience due to her handicap. And they are the only times that I have wished that she could hear. And that is the truth. Because even though Lindsay does not choose to be a part of a Deaf culture, I know that her deafness is a large part of who she is. It defines her as much as being from Chicago defines her, as much as having a sense of humor defines her, as much as being a beautiful brunette does. And, in the way that all of those things fade into the biological makeup of one’s personality, I don’t look at her and think “I have a deaf wife.”

This cochlear implant will not magically make all of these frustrations go away. Neither of us believe that. She will most likely always have to rely on reading lips to communicate. There is no promise that she’ll be able to talk on the phone. But if she works at it, there is a chance that she could improve her speech recognition – hearing and understanding words without reading someone’s lips – by 50%. She might, with practice, be able to enjoy music more. And if it can make her life a little easier, if it can take some frustration away, it’s worth a try.

She’s a perfect candidate. Her brain may remember some sounds that she heard at a very early age. She is young and very intelligent. But more than anything, she is a determined person that works very hard, and has a hunger for learning new things. She is the most positive person I have ever met. She can do anything she sets her mind to do, and she does it well.

This blog is a chronicle of the experience of being implanted with a cochlear implant, from two sides: hers and mine. I hope it helps anyone thinking about getting a cochlear implant, and anyone that is in love with someone thinking about it, too.

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