Cochlear Implant considerations
This is possibly one of the longest posts....EVER.
So for a very long time now, I have wanted a cochlear implant. However, I was told for years by professionals and professors that I probably wouldn't be a candidate because I did so well with my hearing aids. I was able to understand speech and get along pretty well with my hearing aids. (To be a cochlear implant candidate, you basically have to have a hearing loss that's bad enough you can't understand speech that well with hearing aids, and you have to be close to the bottom of the audiogram...see below).
I was born with MUCH more hearing than I have now (again see the picture below), and am now definitely in the severe/profound range that is preferred for a cochlear implant candidate.
Decibels (dB) (the side numbers) are how loud things are. Frequencies are the pitches. If you start at the left side, that's the low pitches, and move to the right, those are the high pitches. All the pictures on there give you an idea of what sounds are that loud, and what pitches are in that frequency. For example if my loss was about where the airplane was, I could hear the airplane without hearing aids if I were close to it, but not anything above that airplane. Anything above the lines in the picture, I could/can NOT hear.
Basically, if you have 0 dB hearing, you have perfect hearing. If you have 120 dB hearing, that means you're basically completely and utterly deaf.
Now to explain the lines I've drawn onto the picture. The darkest black line is what I had when I was born (mind you, it's an approximate, not exactly what I had). This is without my hearing aids. As you can see it's pretty high up there, and having hearing aids would've brought that line up.
I've done the other lines as representations of different times in my life. The one right below the black line is from when I was about in middle school, right below that one was right after high school, and the final one is after having Kiernan (or basically what I am right now). As you can see...I've gotten worse over time. Wearing hearing aids now will only bring me up to somewhere in between the second and third line (basically the middle). That doesn't even really get me up to being able to hear speech sounds perfectly.
I have, over time, been able to tell a difference in my hearing losses over time. I can tell I'm missing more information, I rely much more on lip reading and cueing than ever, and require lots of repeating. This was made evident in the hearing test I did on Tuesday.
First he did the pure tone test (basically beeps of the different pitches, no speech sounds). The right ear alone, and the left ear alone. Together, my hearing loss is at about the last line that I drew on the audiogram.
Then he did a word test where he gave me five words over and over, and went quieter over time, first my right, then my left then both. I honestly don't remember how quiet he got before I couldn't hear him anymore (that is, with my hearing aids in). I believe it was around 60ish dB.
Third, he did a sentence test. I had NO idea what these sentences were going to be. I wore my hearing aids for them. The volume was presented at normal speaking volume, with the speaker in front of me about the same distance I would be from a person talking to me. First we did the right ear with the hearing aid, then the left ear with the hearing aid and then both ears with the hearing aids. The right ear, I got 22% correct. The left ear I got 12% correct. With both ears, I got 57% correct. This showed that I really utilize both ears to try to understand what I'm hearing. The typical cutoff point for comprehension of sentences for candidates is anything below 60% correct. I was just under it, but the audiologist said he would've recommended me anyway because of the scores I got on my word level, and because my hearing loss is progressive, and especially drops after having a child. I really have to wonder how my audiologist didn't bust up laughing during the sentences part (i had to repeat them back), because man on man, I knew I got a lot of them wrong when I was thinking the guy said "strawberry cheese squee." He held a straight face the entire time. I was very very impressed, especially since I laughed after a few sentences.
The next task was to identify words with the same speaker from the sentences. Same volume, same rate of speech, etc. Right ear, left ear, both ears with hearing aids. For the right ear, I got 10% correct, for the left ear, I got 2% correct and for both ears, I got 10% correct. This is very consistent with the sentence portion, as with sentences I have a better chance of "guessing" correctly because there are more words to help me make sense of a sentence...like I know there is no way strawberry cheese squee. was a sentence. However, He washed the dishes was definitely a sentence. However, with words, I have no way of using other words to help me guess it. These were random spontaneous words. It was extremely difficult. There were 50 words each time, so I was guessing on 150 words total. It was exhausting.
Finally, the final task was to see how much I depend on lipreading and how much I depend on my hearing. This was not to determine my candidacy for a cochlear implant, rather it was to do a comparison of before and after if I do get a cochlear implant (or two). The audiologist sat down in front of me, I had both aids in, he said ten sentences, and I had to repeat them back. I was able to use my hearing aids and lipread him. Then I had to take my hearing aids out, and he then said ten sentences (with is voice so that he wasn't doing any unnatural movements with his mouth), and since I didn't have my hearing aids in, I had to rely completely on lipreading. I got 100% with the hearing aids in, and 77% with the hearing aids out. This means I do lipread...quite well, but definitely do use my hearing to get information.
All in all...the entire testing took just over an hour. It was *exhausting*.
and then...
After all the testing, the audiologist told me that I was actually a candidate for both ears to be implanted, and in his own roundabout way, suggested I do a bilateral cochlear implants. For those who aren't familiar with cochlear implants, typically, people are only implanted on one side. So this was very surprising information for me. But he did bring up some good points: 1 - I'm gonna lose all my hearing anyway, period. No doubt about it, especially after I have another kid. 2 - it's cheaper to do them at the same time, less hospital bills (that is, if the insurance will preauthorize doing two cochlear implants and not just one) since doing them separately would cost more.
Admittedly, people who have bilateral implants (they also tend to implant at different times, instead of at the same time) get 80% of their functioning from the first implant, and only 20% from the second implant. But then again....they all implant at different times, not at the same time. SO I can't help but wonder if doing them at the same time, and training both sides at the same time would make them equal? I need to do some research on that.
He then showed ups the three different companies for cochlear implants, and gave very fair and unbiased information. The three companies are advanced bionics, cochlear and med-el. I'm leaning towards cochlear right now.
As for whether I'll get two or one, I'm not even thinking about choosing one or two until I find out if it's even an option through insurance. Fortunately, our insurance right now is in the open enrollment period. So we're trying to get real information from the insurances right now to see if we need to switch plans that would give better coverage for the cochlear implant(s). If there is a way to do two cochlear implants, then I'll start considering it. Right now, it's a lean towards yes for both, but man it really freaks me out.
After we left, on our way home, we called the secretary of the other doctor that I have to see for a consultation. She's already sent a package and appointment times for an MRI to check on the structure of my ear to make sure it's good for getting a cochlear implant, and for a consultation with the cochlear implant surgeon to go over all the information. It's on June 22nd.
Finally....
SO there....there's the longest blog post ever, and the start of this possible journey. Please feel free to ask any questions, I promise I won't take offense and understand why would not be happy with me getting an implant, and why some would be ecstatic. I also understand if you could care less :)
Another auidogram of what a cochlear implant would probably do for me
Oh yeah...basically getting a cochlear implant would mean I would be at this level, just you can understand why I would even consider having my head cut into, and my skull being drilled into it. And if you want more information on how cochlear implants work, there's a link to a fantastic video at the bottom of this post.
Cochlear Implant Hearing Level (approximately in between the two thick black lines):
And the video...
So for a very long time now, I have wanted a cochlear implant. However, I was told for years by professionals and professors that I probably wouldn't be a candidate because I did so well with my hearing aids. I was able to understand speech and get along pretty well with my hearing aids. (To be a cochlear implant candidate, you basically have to have a hearing loss that's bad enough you can't understand speech that well with hearing aids, and you have to be close to the bottom of the audiogram...see below).
I was born with MUCH more hearing than I have now (again see the picture below), and am now definitely in the severe/profound range that is preferred for a cochlear implant candidate.
Decibels (dB) (the side numbers) are how loud things are. Frequencies are the pitches. If you start at the left side, that's the low pitches, and move to the right, those are the high pitches. All the pictures on there give you an idea of what sounds are that loud, and what pitches are in that frequency. For example if my loss was about where the airplane was, I could hear the airplane without hearing aids if I were close to it, but not anything above that airplane. Anything above the lines in the picture, I could/can NOT hear.
Basically, if you have 0 dB hearing, you have perfect hearing. If you have 120 dB hearing, that means you're basically completely and utterly deaf.
Now to explain the lines I've drawn onto the picture. The darkest black line is what I had when I was born (mind you, it's an approximate, not exactly what I had). This is without my hearing aids. As you can see it's pretty high up there, and having hearing aids would've brought that line up.
I've done the other lines as representations of different times in my life. The one right below the black line is from when I was about in middle school, right below that one was right after high school, and the final one is after having Kiernan (or basically what I am right now). As you can see...I've gotten worse over time. Wearing hearing aids now will only bring me up to somewhere in between the second and third line (basically the middle). That doesn't even really get me up to being able to hear speech sounds perfectly.
I have, over time, been able to tell a difference in my hearing losses over time. I can tell I'm missing more information, I rely much more on lip reading and cueing than ever, and require lots of repeating. This was made evident in the hearing test I did on Tuesday.
First he did the pure tone test (basically beeps of the different pitches, no speech sounds). The right ear alone, and the left ear alone. Together, my hearing loss is at about the last line that I drew on the audiogram.
Then he did a word test where he gave me five words over and over, and went quieter over time, first my right, then my left then both. I honestly don't remember how quiet he got before I couldn't hear him anymore (that is, with my hearing aids in). I believe it was around 60ish dB.
Third, he did a sentence test. I had NO idea what these sentences were going to be. I wore my hearing aids for them. The volume was presented at normal speaking volume, with the speaker in front of me about the same distance I would be from a person talking to me. First we did the right ear with the hearing aid, then the left ear with the hearing aid and then both ears with the hearing aids. The right ear, I got 22% correct. The left ear I got 12% correct. With both ears, I got 57% correct. This showed that I really utilize both ears to try to understand what I'm hearing. The typical cutoff point for comprehension of sentences for candidates is anything below 60% correct. I was just under it, but the audiologist said he would've recommended me anyway because of the scores I got on my word level, and because my hearing loss is progressive, and especially drops after having a child. I really have to wonder how my audiologist didn't bust up laughing during the sentences part (i had to repeat them back), because man on man, I knew I got a lot of them wrong when I was thinking the guy said "strawberry cheese squee." He held a straight face the entire time. I was very very impressed, especially since I laughed after a few sentences.
The next task was to identify words with the same speaker from the sentences. Same volume, same rate of speech, etc. Right ear, left ear, both ears with hearing aids. For the right ear, I got 10% correct, for the left ear, I got 2% correct and for both ears, I got 10% correct. This is very consistent with the sentence portion, as with sentences I have a better chance of "guessing" correctly because there are more words to help me make sense of a sentence...like I know there is no way strawberry cheese squee. was a sentence. However, He washed the dishes was definitely a sentence. However, with words, I have no way of using other words to help me guess it. These were random spontaneous words. It was extremely difficult. There were 50 words each time, so I was guessing on 150 words total. It was exhausting.
Finally, the final task was to see how much I depend on lipreading and how much I depend on my hearing. This was not to determine my candidacy for a cochlear implant, rather it was to do a comparison of before and after if I do get a cochlear implant (or two). The audiologist sat down in front of me, I had both aids in, he said ten sentences, and I had to repeat them back. I was able to use my hearing aids and lipread him. Then I had to take my hearing aids out, and he then said ten sentences (with is voice so that he wasn't doing any unnatural movements with his mouth), and since I didn't have my hearing aids in, I had to rely completely on lipreading. I got 100% with the hearing aids in, and 77% with the hearing aids out. This means I do lipread...quite well, but definitely do use my hearing to get information.
All in all...the entire testing took just over an hour. It was *exhausting*.
and then...
After all the testing, the audiologist told me that I was actually a candidate for both ears to be implanted, and in his own roundabout way, suggested I do a bilateral cochlear implants. For those who aren't familiar with cochlear implants, typically, people are only implanted on one side. So this was very surprising information for me. But he did bring up some good points: 1 - I'm gonna lose all my hearing anyway, period. No doubt about it, especially after I have another kid. 2 - it's cheaper to do them at the same time, less hospital bills (that is, if the insurance will preauthorize doing two cochlear implants and not just one) since doing them separately would cost more.
Admittedly, people who have bilateral implants (they also tend to implant at different times, instead of at the same time) get 80% of their functioning from the first implant, and only 20% from the second implant. But then again....they all implant at different times, not at the same time. SO I can't help but wonder if doing them at the same time, and training both sides at the same time would make them equal? I need to do some research on that.
He then showed ups the three different companies for cochlear implants, and gave very fair and unbiased information. The three companies are advanced bionics, cochlear and med-el. I'm leaning towards cochlear right now.
As for whether I'll get two or one, I'm not even thinking about choosing one or two until I find out if it's even an option through insurance. Fortunately, our insurance right now is in the open enrollment period. So we're trying to get real information from the insurances right now to see if we need to switch plans that would give better coverage for the cochlear implant(s). If there is a way to do two cochlear implants, then I'll start considering it. Right now, it's a lean towards yes for both, but man it really freaks me out.
After we left, on our way home, we called the secretary of the other doctor that I have to see for a consultation. She's already sent a package and appointment times for an MRI to check on the structure of my ear to make sure it's good for getting a cochlear implant, and for a consultation with the cochlear implant surgeon to go over all the information. It's on June 22nd.
Finally....
SO there....there's the longest blog post ever, and the start of this possible journey. Please feel free to ask any questions, I promise I won't take offense and understand why would not be happy with me getting an implant, and why some would be ecstatic. I also understand if you could care less :)
Another auidogram of what a cochlear implant would probably do for me
Oh yeah...basically getting a cochlear implant would mean I would be at this level, just you can understand why I would even consider having my head cut into, and my skull being drilled into it. And if you want more information on how cochlear implants work, there's a link to a fantastic video at the bottom of this post.
Cochlear Implant Hearing Level (approximately in between the two thick black lines):
And the video...
Click to view