I love the guy. Don't get me wrong. He's so nice! But...
She's been having this problem with her left CI for several months, where she gets a tingly feeling, sometimes a quick stab of pain, and sometimes a feeling like there is something dripping or draining in her throat. The audiologist is just now thinking that maybe the CI surgeon should be looped in on the problem. Yeah!!
Until now, the problem has been handled by turning down the amount of stimulation at every appointment. I think she hasn't had as much pain recently, but the tingly feeling is still driving her nuts.
Now she's turned down to the point where she doesn't feel like she's hearing much, and she misses hearing what she used to. She feels like the volume is more similar to her hearing aid. Not good. It's not just her perception, either: I have to be less than two feet from her in order for her to hear well enough to do therapy. Awkward.
With the MAP changing every time she goes in (not just being lowered, but changing relative amplitudes on the channels), and with her going in every 2-4 weeks, she has not had a stable auditory representation of speech. How can she learn to listen when the way things sound keeps changing? She's done well with not losing ground, but she hasn't really improved her listening skills since the problem started, which the beginning of June.
And the new implant (blessedly no problems there) is set to the same stimulation level as the old (problematic) one. So the volume is low all around, and the new ear isn't getting a chance to get used to normal sounds, the way that the first one did.
I know that Laynie is disappointed not to be doing better with listening. She did hear a word last week. She flopped face down on the couch after she got home from work, and I said, "Are you dead?" She said, "Did you just say 'dead?'" It's not much, but when you've never understood ANYTHING auditorily, it's cool to catch a word here and there. I think that makes about a half dozen words that she has understood in context.
Laynie's next appointment is the first week in October. I really hope she gets a booth test. She hasn't had one since May, and she has had quite a few MAP changes since then. At that time, she was still looking rather hard of hearing (except in the higher frequencies), so if she's now saying that things were loud then and are quiet now... who knows where she is? Not where she wants to be.
BUT I feel like I should compliment Laynie publicly. I have been impressed and pleasantly surprised at the way she has made her CIs such a part of her life. I will admit that as she went through the candidacy process, I wondered if the nasty surgeon in Utah might be right: "Technically, you're a candidate for the implant, but I don't know if it would be worth doing, when you'll probably just become a non-user." I wondered if Laynie might take off her CI if things were loud of annoying, which they were bound to be sometimes. But she hasn't, even with the problems with the left CI. I wondered if it might be a phase, that she might get bored with her CI. She hasn't yet, and she even went for a second one. I wondered if she might give up if she didn't quickly develop auditory comprehension. Nope.
She's frustrated that her current MAPs are so quiet. But still, she puts her CIs on every morning and keeps them on until bedtime. The only time she has had one off during the day was for two days last week, when her audiologist told her to keep the left one off, to see if she experienced discomfort without active stimulation from the processor. But she still had the right one on. Not a day without hearing since the first CI was activated, on February 13.
I guess she likes hearing.
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