The Misadventures of Thing 1 and Thing 2
OK, I promised a few weeks back that I'd let y'all in on how Thing 1 and Thing 2 are doing. And the shortest version of all is that they're not playing well together. If that's all you want to know, you have your information and you may be excused ;).
If you want to know more, here it is: we have a loooong road ahead of us. Before you dismiss any thoughts of ever going bilateral from your own brains, don't panic...please remember that my situation's a little different, OK? Thing 1 is my vibrotactile ear...the ear where I feel my sounds along with and instead of hearing them. I was told before I ever had the surgery that it might go away and it might not. I do hear sounds with it, but they are all, every one, accompanied by a sensation. At loud sensitivities the sensation is much stronger and much more uncomfortable. When it was all I had to work with, it was TOLERABLE. I didn't like it, but it was the only sound I had coming in and so I dealt with it...it was better than nothing. I was expecting more of the same from Thing 2 and was amazed and shocked and overjoyed when I only HEARD my sounds. I can occasionally feel a sensation when the sound's up too loud, but I think that it's just normal "that's-too-loud" sensation.
It was suggested that I wear just the new CI for a few days after activation to acclimate the brain to the new signals. Fine by me. After a few days, though, when I put Thing 1 on, I was blown away...the vibrations seemed just unbearable after several days of nothing but sweet sound. I hadn't realized how horrible the sensation was until I had something to compare it to...and I didn't like it. Throw into the mix that I have some sensory issues anyway, and it was just about more than I could handle. So I took it off again.
I brought Thing 1 along with me to a map and we adjusted the settings...turning everything way, way, way, way down. Present at that mapping was an audiology intern that listened to the story in interest, and then voiced the question that I had often wondered to myself aloud to the audiologist, "Will she ever get full use out of that ear?"
And my audiologist said, quite frankly, "We just don't know. But if she doesn't, at least now she has this good ear to work with."
So there it is...it might not ever get better. I've struggled with it for over a year and it's only gotten minimally better, and now, with my second, much better implant, I'm seeing no benefit from the first at all, because it's so uncomfortable that I can only wear it on the lowest of volumes in order to tolerate it.
HOWEVER...I don't want to give up yet. I think that if I could see into the future and know one way or another it might be different, but I have no way of knowing but what perhaps my second ear might help bridge the gap for my first ear, and someday it might be better. I think that if I didn't at least try I would always wonder "what if". I have, in the past, been able to pick up a lot of background sounds with Thing 1, and know that if I could learn to tolerate it it might provide me with a lot of sound information that I can't get with just one ear. So I'm not giving up...yet.
I am bad about breaking New Years' resolutions (resolutions are just made to be broken, it seems) but I really plan to try my best to wear Thing 1 at least a little while every day for the next year. Right now it's set so low that I can barely feel anything (and I don't hear anything either) but it's on. My hope is that my brain will make the adjustment over the next year and that the two ears will someday be able to play nicely together. If that doesn't happen, I will know that I at least tried it. I have everything to gain and nothing to lose.
In the meantime, Thing 2 is amazing...I am hearing everything. I heard my mother talking last night when we were outside getting in our cars to go home...and the porch lights weren't on...and I understood every word she said. I can recognize which baby's crying in church by the way they sound and from the loudness (cool!). I am starting to be able to understand the TV without having to try nearly as hard (I do still have to listen, though). I heard my daughter crunching potato chips yesterday while I was watching "Mr. Bean's Holiday"...and finally told her that if she didn't hurry up and eat the chips she was going to have to move to another room with 'em! I love my new ear...it has totally given me my life back...more than I ever imagined it would :)
Love y'all.....
If you want to know more, here it is: we have a loooong road ahead of us. Before you dismiss any thoughts of ever going bilateral from your own brains, don't panic...please remember that my situation's a little different, OK? Thing 1 is my vibrotactile ear...the ear where I feel my sounds along with and instead of hearing them. I was told before I ever had the surgery that it might go away and it might not. I do hear sounds with it, but they are all, every one, accompanied by a sensation. At loud sensitivities the sensation is much stronger and much more uncomfortable. When it was all I had to work with, it was TOLERABLE. I didn't like it, but it was the only sound I had coming in and so I dealt with it...it was better than nothing. I was expecting more of the same from Thing 2 and was amazed and shocked and overjoyed when I only HEARD my sounds. I can occasionally feel a sensation when the sound's up too loud, but I think that it's just normal "that's-too-loud" sensation.
It was suggested that I wear just the new CI for a few days after activation to acclimate the brain to the new signals. Fine by me. After a few days, though, when I put Thing 1 on, I was blown away...the vibrations seemed just unbearable after several days of nothing but sweet sound. I hadn't realized how horrible the sensation was until I had something to compare it to...and I didn't like it. Throw into the mix that I have some sensory issues anyway, and it was just about more than I could handle. So I took it off again.
I brought Thing 1 along with me to a map and we adjusted the settings...turning everything way, way, way, way down. Present at that mapping was an audiology intern that listened to the story in interest, and then voiced the question that I had often wondered to myself aloud to the audiologist, "Will she ever get full use out of that ear?"
And my audiologist said, quite frankly, "We just don't know. But if she doesn't, at least now she has this good ear to work with."
So there it is...it might not ever get better. I've struggled with it for over a year and it's only gotten minimally better, and now, with my second, much better implant, I'm seeing no benefit from the first at all, because it's so uncomfortable that I can only wear it on the lowest of volumes in order to tolerate it.
HOWEVER...I don't want to give up yet. I think that if I could see into the future and know one way or another it might be different, but I have no way of knowing but what perhaps my second ear might help bridge the gap for my first ear, and someday it might be better. I think that if I didn't at least try I would always wonder "what if". I have, in the past, been able to pick up a lot of background sounds with Thing 1, and know that if I could learn to tolerate it it might provide me with a lot of sound information that I can't get with just one ear. So I'm not giving up...yet.
I am bad about breaking New Years' resolutions (resolutions are just made to be broken, it seems) but I really plan to try my best to wear Thing 1 at least a little while every day for the next year. Right now it's set so low that I can barely feel anything (and I don't hear anything either) but it's on. My hope is that my brain will make the adjustment over the next year and that the two ears will someday be able to play nicely together. If that doesn't happen, I will know that I at least tried it. I have everything to gain and nothing to lose.
In the meantime, Thing 2 is amazing...I am hearing everything. I heard my mother talking last night when we were outside getting in our cars to go home...and the porch lights weren't on...and I understood every word she said. I can recognize which baby's crying in church by the way they sound and from the loudness (cool!). I am starting to be able to understand the TV without having to try nearly as hard (I do still have to listen, though). I heard my daughter crunching potato chips yesterday while I was watching "Mr. Bean's Holiday"...and finally told her that if she didn't hurry up and eat the chips she was going to have to move to another room with 'em! I love my new ear...it has totally given me my life back...more than I ever imagined it would :)
Love y'all.....
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