Another Friday, another trip to the hospital. The appointment with the Audiologist was much the same as last time. Testing each channel, increasing the gain to a level that I could comfortably cope with (without too much eyeball vibration), and then setting five more programmes for me to work through, each one incrementally louder than the previous. But this time it's one month until my next appointment.
The Audiologist said that with some people they are able to bump up the gain by a greater amount at each visit, meaning the end goal, of the desired gain, and associated clarity, is reached quicker. But he said that they're finding I'm quite sensitive, so they can't bump the gain so much. So this means it will take longer, and require more appointments, to reach the end goal. This is fine from their point of view - my general progress is forward and up, and they are willing to give me extra appointments as and when they're needed.
From my point of view? Well, I have to admit to trying to be philosophical about it, but not 100% succeeding. I knew that my profile, of severe-profound deafness since birth, meant I was going to be one of the slowest to adapt to a CI, just because of the number of sounds my brain will never have heard before, particularly in the higher frequencies. Secretly I guess I kind of hoped my brain might surprise everyone and manage it faster! But the fact that the hospital staff are delaying my prescheduled appointments to give me longer to adjust is slightly discouraging, suggests I'm not fitting the average trend. But then, I just said I'm not average, am I? I need to give my brain time to adjust, learn and adapt. And we'll get there when we get there. A few years from now, what will stand out in the my mind will be the end result, not so much the journey.
I did have another hearing test with the audiologist, and have included the results below, along with the last test from two weeks ago, for comparison.
You can see that the bottom image shows that the quietest sounds I can now hear, on average, are about 40dB. Two weeks ago (top image) this average was about 45-50dB. Progress is being made, even if it feels slow. This reminds me that a friend recently sent me an emoticon of a snail during a Whatsapp chat, as the closest image she could find of a cochlea. She pointed out it's also apt as it represents the slow journey I'm on. I like it. As long as the emojis are cute and not slimy... 🐌🐌🐌
The Audiologist also reduced the strength of the magnet in my headpiece, by flipping it over so there's a piece of foam increasing the spacing between the magnet and my head. This is the second time they've reduced the magnet strength (I was getting sore at that location for a few days prior to the first magnet strength reduction, but have been comfortable the last fortnight). The headpiece now feels less secure on my head, but it's necessary. If I carry on wearing a strong magnet, constantly pressing hard on my head, this can cause damage to the skin (much like a bed sore results from continuous pressure). There are two reasons for starting on a stronger magnet and gradually reducing. One is that my skin over the implant is inflamed after the op, so over time it settles and the thickness of skin/flesh/muscle between the internal and external magnets gradually reduces. The second is that my internal magnet is a special "3D" one, only released last autumn, compatible with MRI scans. The magnet is designed to rotate with the MRI magnetic field, thus avoiding any damage to my head during a scan. But it seems it takes some time for this rotating internal magnet to correctly align with the external magnet of my headpiece (a much weaker magnetic force than an MRI!), so a stronger magnet is required at first, and then as it becomes aligned, a weaker one can be used. (Presumably if I ever have an MRI scan, this alignment will change, and I will have to work through the magnet strengths again to get it back to optimal alignment for my headpiece.)
I saw the Speech Therapist after the Audiologist, and that was a bit more encouraging. We chatted about what new sounds I'd been hearing since the last time I saw her, and I told her a bit about listening to the band at church, and how I am hearing more patterns in the songs, noticing the guitarist strumming and varying the rhythm, something I'd never have picked out before, from the barrage of sound that was music heard through my hearing aids.
She repeated a couple of tests, which I did last September, when being assessed for eligibility for a CI. She wanted to compare results, for their data/records. I'll be having more of these tests as time goes on, to track progress.
One is watching a video (with sound, but no background noise) of a completely expressionless man speak sentences. This is testing my comprehension, when both lipreading and listening. The other test was without the video, listening to sound only, with simpler sentences being spoken. This tested my ability to hear and comprehend, without the assistance of lipreading. Essentially, a test of the clarity of my listening device - hearing aids last time, and the CI this time.
With lipreading, today's result was 91% accurate. Last time it was 85%. I could feel I was doing better during the test. This surprised me. I remember that last September I was frustrated with the lipreading, feeling the man could be clearer! It seemed to me that, today, because I'd seen the man before (albeit just once, 8 months ago!) it was easier to understand him. This seems a bit improbable though. A more realistic explanation, I think, is simply that my lipreading skills are a bit more polished right now, because of my total dependence on them over the last 3.5 weeks - and (albeit a little less dependent) during the six weeks post-op when I had only one hearing aid.
The other test, listening only, without lipreading, I heard the short sentences with 17% accuracy. This compared to a previous result, with one hearing aid at a time, of 18/19%. So this confirms my feeling, as mentioned in my last blog post a week ago, that my perception of voices, with the CI, is starting to approach that with hearing aids. It's very hard to compare hearing aids vs CI because the CI doesn't yet give me a great range of sounds - things still sound largely the same frequency to me, quite monotonous. But the clarity of what I'm hearing seems to be about the same.
This, together with my experience of listening to music at church the last two weeks, makes me realise I didn't hear as well with the hearing aids as I thought I could. But what did I know? I had nothing to compare it to!
As a side note, one of the requirements for eligibility for a cochlear implant is a test result of less than 50% accurate in a listening only comprehension test. When I was tested with hearing aids in, my results were 18/19% for each ear separately, and 28% with ears together. This may help to quantify how poor my hearing was, with hearing aids. And, interestingly enough this, combined with how well I've coped over the last few weeks, has helped me realise that my lipreading is better than I ever used to think it was!
I now have just under four weeks until my next appointment, in late June. Five more programmes to work through, with hopefully increasing clarity as I progress through them. 🙂🐌
The Audiologist said that with some people they are able to bump up the gain by a greater amount at each visit, meaning the end goal, of the desired gain, and associated clarity, is reached quicker. But he said that they're finding I'm quite sensitive, so they can't bump the gain so much. So this means it will take longer, and require more appointments, to reach the end goal. This is fine from their point of view - my general progress is forward and up, and they are willing to give me extra appointments as and when they're needed.
From my point of view? Well, I have to admit to trying to be philosophical about it, but not 100% succeeding. I knew that my profile, of severe-profound deafness since birth, meant I was going to be one of the slowest to adapt to a CI, just because of the number of sounds my brain will never have heard before, particularly in the higher frequencies. Secretly I guess I kind of hoped my brain might surprise everyone and manage it faster! But the fact that the hospital staff are delaying my prescheduled appointments to give me longer to adjust is slightly discouraging, suggests I'm not fitting the average trend. But then, I just said I'm not average, am I? I need to give my brain time to adjust, learn and adapt. And we'll get there when we get there. A few years from now, what will stand out in the my mind will be the end result, not so much the journey.
I did have another hearing test with the audiologist, and have included the results below, along with the last test from two weeks ago, for comparison.
 |
| 17th May 2019 |
 |
| 31st May 2019 (today) |
You can see that the bottom image shows that the quietest sounds I can now hear, on average, are about 40dB. Two weeks ago (top image) this average was about 45-50dB. Progress is being made, even if it feels slow. This reminds me that a friend recently sent me an emoticon of a snail during a Whatsapp chat, as the closest image she could find of a cochlea. She pointed out it's also apt as it represents the slow journey I'm on. I like it. As long as the emojis are cute and not slimy... 🐌🐌🐌
The Audiologist also reduced the strength of the magnet in my headpiece, by flipping it over so there's a piece of foam increasing the spacing between the magnet and my head. This is the second time they've reduced the magnet strength (I was getting sore at that location for a few days prior to the first magnet strength reduction, but have been comfortable the last fortnight). The headpiece now feels less secure on my head, but it's necessary. If I carry on wearing a strong magnet, constantly pressing hard on my head, this can cause damage to the skin (much like a bed sore results from continuous pressure). There are two reasons for starting on a stronger magnet and gradually reducing. One is that my skin over the implant is inflamed after the op, so over time it settles and the thickness of skin/flesh/muscle between the internal and external magnets gradually reduces. The second is that my internal magnet is a special "3D" one, only released last autumn, compatible with MRI scans. The magnet is designed to rotate with the MRI magnetic field, thus avoiding any damage to my head during a scan. But it seems it takes some time for this rotating internal magnet to correctly align with the external magnet of my headpiece (a much weaker magnetic force than an MRI!), so a stronger magnet is required at first, and then as it becomes aligned, a weaker one can be used. (Presumably if I ever have an MRI scan, this alignment will change, and I will have to work through the magnet strengths again to get it back to optimal alignment for my headpiece.)
I saw the Speech Therapist after the Audiologist, and that was a bit more encouraging. We chatted about what new sounds I'd been hearing since the last time I saw her, and I told her a bit about listening to the band at church, and how I am hearing more patterns in the songs, noticing the guitarist strumming and varying the rhythm, something I'd never have picked out before, from the barrage of sound that was music heard through my hearing aids.
She repeated a couple of tests, which I did last September, when being assessed for eligibility for a CI. She wanted to compare results, for their data/records. I'll be having more of these tests as time goes on, to track progress.
One is watching a video (with sound, but no background noise) of a completely expressionless man speak sentences. This is testing my comprehension, when both lipreading and listening. The other test was without the video, listening to sound only, with simpler sentences being spoken. This tested my ability to hear and comprehend, without the assistance of lipreading. Essentially, a test of the clarity of my listening device - hearing aids last time, and the CI this time.
With lipreading, today's result was 91% accurate. Last time it was 85%. I could feel I was doing better during the test. This surprised me. I remember that last September I was frustrated with the lipreading, feeling the man could be clearer! It seemed to me that, today, because I'd seen the man before (albeit just once, 8 months ago!) it was easier to understand him. This seems a bit improbable though. A more realistic explanation, I think, is simply that my lipreading skills are a bit more polished right now, because of my total dependence on them over the last 3.5 weeks - and (albeit a little less dependent) during the six weeks post-op when I had only one hearing aid.
The other test, listening only, without lipreading, I heard the short sentences with 17% accuracy. This compared to a previous result, with one hearing aid at a time, of 18/19%. So this confirms my feeling, as mentioned in my last blog post a week ago, that my perception of voices, with the CI, is starting to approach that with hearing aids. It's very hard to compare hearing aids vs CI because the CI doesn't yet give me a great range of sounds - things still sound largely the same frequency to me, quite monotonous. But the clarity of what I'm hearing seems to be about the same.
This, together with my experience of listening to music at church the last two weeks, makes me realise I didn't hear as well with the hearing aids as I thought I could. But what did I know? I had nothing to compare it to!
As a side note, one of the requirements for eligibility for a cochlear implant is a test result of less than 50% accurate in a listening only comprehension test. When I was tested with hearing aids in, my results were 18/19% for each ear separately, and 28% with ears together. This may help to quantify how poor my hearing was, with hearing aids. And, interestingly enough this, combined with how well I've coped over the last few weeks, has helped me realise that my lipreading is better than I ever used to think it was!
I now have just under four weeks until my next appointment, in late June. Five more programmes to work through, with hopefully increasing clarity as I progress through them. 🙂🐌
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