Ben had his follow-up today with the surgeon who gave him his cochlear implant. I was very interested in his thoughts on why Ben isn't wearing his implant when it is turned on. We have ruled out behavior reasons because he wears it while turned off about 4-5 hours a day (we want to keep him in the habit of feeling it on his head even when off). He said Ben might not be wearing his implant for three reasons:
1.
He has an ear infection – he checked and he does NOT have one.
2.
He just needs his implant re-mapped/re-programmed monthly based on the different way his brain processes information and how it is always changing. Kids with CHARGE and kids who have had strokes don't process information through the same brain channels as you or I would. They have to find a different way around the damaged areas and he suspects the auditory channels work the same way.
3.
He is having a soft failure of the implant, which happens less than 1% of the time and we are HOPING this isn’t it. A soft failure is harder to detect than a hard failure, which is just the implant processor giving you an error. A soft failure is when over time, an electrode here and there stops working and needs to be turned off. Eventually, so many give out that the implant isn't functioning. During our last mapping, two electrodes were not functioning and had to be turned off. On Monday, we go back to Audiology to check into this further. If any addition electrodes need to be turned off, he suspects this might be happening. A catscan under sedation would then need to be done. If it is a soft failure, then ALL internal hardware (which has been placed right by his brain) needs to be removed and new hardware needs to be implanted. Because Ben was such a difficult implantation, the doctor is worried about having to perform the surgery again.
We are praying it isn't option #3. Will keep you posted after our appointment on Monday with Audiology.
2 comments:
We will be thinking of you guys on Monday. Hoping against option number 3, but hoping things do get figured out. I'm sure it is a bit frustrating to say the least.
Hope you get good news today at Ben's audiology appointment.
Are you friends with Julie Brandrup on facebook? Julie's daughter had a soft fail on her CI earlier this year and had to have several electrodes turned off. You might email her about this.
If not the electrodes, do you think Ben could just be overly sensitive to the sound he gets from the CI? Have you tried turning down the volume? Katie went through a period like this, and her audiologist had us turn the volume down really low on it and then gradually turn it up again as she became less resistant to wearing it. She still doesn't like to wear the CI in the classroom much--I think it's overstimulating to her. She'll tolerate it for a little while, then she'll point to it and sign "off" frantically until her interpreter takes it off.
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