Hello - I'm back. I need to write a few posts in quick succession to catch the up with where the story is in real life....
When I introduced myself, I told you about the audiologist visit where I found out that my hearing had dropped 10-20 db and my speech recognition scores were at 40% in my "good" ear (and as expected, 0% in my other ear). It was definitely a shock seeing those numbers in black-and-white. I knew that my hearing was not as good as it used to be (after being pretty stable for my whole life), but I wasn't expecting it to be that poor. When I was talking to the audiologist, she mentioned that, based on my scores, I technically probably qualified for a Cochlear Implant, but I seemed to be doing OK, so it was something to consider for the future.
Now, I had heard of Cochlear Implants (CI) before, but I never thought they applied to me. I though they were something that was used on children who were born deaf, and that they only gave people the ability to hear just general sound/noise. That certainly didn't sound like a step forward, especially given that I was doing OK in face-to-face situations as long as there wasn't a lot of noise in the background. The audiologist said that she wasn't an expert in CI, so if I was interested, I'd need to talk to a different doctor. I didn't think much of the suggestion at the time, given my impression of what a CI was, but over the next few days, I decided to look into it. Thanks to the Internet - there is lots of information right there at my fingertips. I was surprised to find out that my impression of CIs was way off from reality - there are people who can achieve near 100% speech recognition scores after getting a CI.
Now, I'm the first person to admit that I like technology and gadgets, so this CI thing was starting to look interesting. I found out that there were three companies that made CIs for use in the United States: Cochlear, Advanced Bionics, and Med-El. Advanced Bionics was even owned by the same parent as the company that made my hearing aid (Phonak). The technology looked cool too - bluetooth streamers, waterproof kits that let you swim while still being able to hear, remote controls - gadgets galore. That side of things looked like it would be fun. On the other hand.. cutting the side of my head open, sticking some wires in my ear, and grinding away some of my skull to make a place to put the implant... that doesn't sound so fun. Then there is the part of the CI that has a magnet that you stick on your head right above the magnet that's been implanted in your skull. For some reason, that seems funny to me - I told my wife if I were to get a CI and we ran out of space to stick pictures on the fridge - we could always stick them on my head with a magnet.
I also found out that, while there are the "miracle" activations where people can hear and understand speech from the first day that they turn on their CI (those are of course the ones that you see on YouTube), there is still a long process of re-training your brain to hear when you get a CI. Some people say that they cry when their CIs are turned on the first time because they are so happy they can hear; other people say they cry because it sounds so terrible - beeps, boops, squeals, static - and they think they have done something terrible to themselves (those probably aren't the ones that you see on YouTube). Then there's the question of which ear to implant... if I decided to go for a CI, would they be able to implant in my right (bad) ear? That way, if it didn't work out, I'd still have my left ear to fall back on. Oh, I forgot to mention, when a CI is implanted, although the surgeon will do their best, it's generally assumed that you will lose whatever natural hearing you have in the implanted ear. If they want to implant in my left ear, I'd no longer be Hard-of-Hearing; I'd be deaf. That' puts a bit of weight on the decision, doesn't it? Based on everything I'd read on the Internet - the most likely recommendation would be to implant in my left ear. What if something went wrong or it didn't work? I'd go from "doing OK" to being deaf. Would I need to learn sign language? How would that affect my family?
I joined some online forums where I could actually talk to people who had a CI. I noticed a gentleman in a restaurant who had one and talked to him. My parents mentioned it to a friend who had, as it turns out, a friend with a CI. I emailed her to ask her about her experience. I started asking lots of questions about the risks - could things be worse off with a CI? There was one guy on the forums who was worse off - they think it was either an issue with the implant itself or a poor placement of the implant - he was about to go through "revision surgery" which basically means they were going to take out his implant and put in another one. However, apart from that one gentleman, everyone else I talked to was very happy with their decision. The most common "regret" that I heard was that they didn't get a CI earlier than they did. The stories (and of course the YouTube videos that the CI manufacturers posted) were overwhelmingly positive. Yes, it was hard work (as all challenges are), but the results were worth it.
Even while doing all of this research, I wasn't ready to take any concrete action just yet. I knew that the next step, should I want to take it, would be to undergo a specific assessment to see whether I even met the specific guidelines for getting a CI. The assessment was basically listening to 4 different people reading recorded sentences and repeating back what I heard. In the back of my mind, I was trying to keep my expectations in check - what would happen if I went in for the assessment and "passed" the test, meaning that I could understand the people well enough to not qualify for a CI? That would be a disappointing result for sure. How about if I failed the test but subsequent medical tests (such as the CT scan or MRI) showed that the meningitis had caused damage to my cochlea and that I wasn't a candidate? That would be an even more disappointing result - my hearing would be bad enough to qualify for the most radical treatment available (CI), but my anatomy prevented me from getting one. Would I be back to the sign language option? Could I handle that level of disappointment? What do do... what to do?
When I introduced myself, I told you about the audiologist visit where I found out that my hearing had dropped 10-20 db and my speech recognition scores were at 40% in my "good" ear (and as expected, 0% in my other ear). It was definitely a shock seeing those numbers in black-and-white. I knew that my hearing was not as good as it used to be (after being pretty stable for my whole life), but I wasn't expecting it to be that poor. When I was talking to the audiologist, she mentioned that, based on my scores, I technically probably qualified for a Cochlear Implant, but I seemed to be doing OK, so it was something to consider for the future.
Now, I had heard of Cochlear Implants (CI) before, but I never thought they applied to me. I though they were something that was used on children who were born deaf, and that they only gave people the ability to hear just general sound/noise. That certainly didn't sound like a step forward, especially given that I was doing OK in face-to-face situations as long as there wasn't a lot of noise in the background. The audiologist said that she wasn't an expert in CI, so if I was interested, I'd need to talk to a different doctor. I didn't think much of the suggestion at the time, given my impression of what a CI was, but over the next few days, I decided to look into it. Thanks to the Internet - there is lots of information right there at my fingertips. I was surprised to find out that my impression of CIs was way off from reality - there are people who can achieve near 100% speech recognition scores after getting a CI.
Now, I'm the first person to admit that I like technology and gadgets, so this CI thing was starting to look interesting. I found out that there were three companies that made CIs for use in the United States: Cochlear, Advanced Bionics, and Med-El. Advanced Bionics was even owned by the same parent as the company that made my hearing aid (Phonak). The technology looked cool too - bluetooth streamers, waterproof kits that let you swim while still being able to hear, remote controls - gadgets galore. That side of things looked like it would be fun. On the other hand.. cutting the side of my head open, sticking some wires in my ear, and grinding away some of my skull to make a place to put the implant... that doesn't sound so fun. Then there is the part of the CI that has a magnet that you stick on your head right above the magnet that's been implanted in your skull. For some reason, that seems funny to me - I told my wife if I were to get a CI and we ran out of space to stick pictures on the fridge - we could always stick them on my head with a magnet.
I also found out that, while there are the "miracle" activations where people can hear and understand speech from the first day that they turn on their CI (those are of course the ones that you see on YouTube), there is still a long process of re-training your brain to hear when you get a CI. Some people say that they cry when their CIs are turned on the first time because they are so happy they can hear; other people say they cry because it sounds so terrible - beeps, boops, squeals, static - and they think they have done something terrible to themselves (those probably aren't the ones that you see on YouTube). Then there's the question of which ear to implant... if I decided to go for a CI, would they be able to implant in my right (bad) ear? That way, if it didn't work out, I'd still have my left ear to fall back on. Oh, I forgot to mention, when a CI is implanted, although the surgeon will do their best, it's generally assumed that you will lose whatever natural hearing you have in the implanted ear. If they want to implant in my left ear, I'd no longer be Hard-of-Hearing; I'd be deaf. That' puts a bit of weight on the decision, doesn't it? Based on everything I'd read on the Internet - the most likely recommendation would be to implant in my left ear. What if something went wrong or it didn't work? I'd go from "doing OK" to being deaf. Would I need to learn sign language? How would that affect my family?
I joined some online forums where I could actually talk to people who had a CI. I noticed a gentleman in a restaurant who had one and talked to him. My parents mentioned it to a friend who had, as it turns out, a friend with a CI. I emailed her to ask her about her experience. I started asking lots of questions about the risks - could things be worse off with a CI? There was one guy on the forums who was worse off - they think it was either an issue with the implant itself or a poor placement of the implant - he was about to go through "revision surgery" which basically means they were going to take out his implant and put in another one. However, apart from that one gentleman, everyone else I talked to was very happy with their decision. The most common "regret" that I heard was that they didn't get a CI earlier than they did. The stories (and of course the YouTube videos that the CI manufacturers posted) were overwhelmingly positive. Yes, it was hard work (as all challenges are), but the results were worth it.
Even while doing all of this research, I wasn't ready to take any concrete action just yet. I knew that the next step, should I want to take it, would be to undergo a specific assessment to see whether I even met the specific guidelines for getting a CI. The assessment was basically listening to 4 different people reading recorded sentences and repeating back what I heard. In the back of my mind, I was trying to keep my expectations in check - what would happen if I went in for the assessment and "passed" the test, meaning that I could understand the people well enough to not qualify for a CI? That would be a disappointing result for sure. How about if I failed the test but subsequent medical tests (such as the CT scan or MRI) showed that the meningitis had caused damage to my cochlea and that I wasn't a candidate? That would be an even more disappointing result - my hearing would be bad enough to qualify for the most radical treatment available (CI), but my anatomy prevented me from getting one. Would I be back to the sign language option? Could I handle that level of disappointment? What do do... what to do?