Second CI for Amanda??

Today we had an appointment with Amanda's CI surgeon to discuss the possibility for a second implant. It took us an hour to drive to LA and three hours to drive home and the bottom line is that today was a bit of a disappointment.

Amanda has wanted a second CI before she even got her first one a year ago this month. There was only a brief period of time during her recovery period and before activation that she had to think twice about going through it again. But that quickly subsided and she was right back wanting the second CI again.

In our meeting with her ENT today, he was unconvinced that a second CI would benefit her speech production, which he said was the reason second implantations are performed.

We had brought documentation from her school audiologist and speech pathologist (who have both known Amanda since she started at the school at age 3 and was a student in my class) showing that she had made considerable progress in the areas of speech and listening since her CI.

Nothing about Amanda has ever followed a typical pattern. And even though she only has three electrodes active, has facial stimulation if she turns the volume past 11:00 and can't hear her own voice...Amanda is thrilled with her cochlear implant. It has made a huge difference in her life.

She now watches television with the volume on, has favorite songs on her iPod (she especially likes drums), she can hear people talk, buzzers, bells, helicopters, traffic, her dog, Goldy's dog tags, dogs barking and many other environmental sounds although she can't always localize them.

In addition to her increasing ability to hear and identify environmental sounds, she has made tremendous gains in closed set speech detection, identification, discrimination and comprehension. And her speech production when combined with visual cues has improved as well. If something is written, she can read it with a fair amount of intelligibility and combining auditory with visual cues (lipreading & visual phonics) she can correct her speech production errors.

We believe Amanda deserves a chance to see if with a second implant she can have more electrodes active, be able to hear low frequency sounds, hear her own voice, and experience less facial stim. This will increase the chances that she will be able to make even more progress with her speech and listening abilities and pick up other environmental sounds.

The plan right now is for his audiologists to do a series of tests before he decides to do the second surgery. We will be contacted for an appointment and go from there.

If anyone has any wise words of wisdom we'd be happy to hear them.

Amanda's 6th Mapping

Life's Little Pleasures--feeding cheese to Goldy!

Amanda just posted a new entry on her blog.  http://amandakristineconde.blogspot.com/

Amanda had her 6th mapping on Friday, October 10th. Programing her CI continues to be a challenge for her audiologist, Fran.  At mapping #4  Lalita, an Advanced Bionics field specialist flew in to assist in Amanda's situation.  I described that mapping below.

As of Friday, she still has only 4 electrodes active because the others give her twitching with no auditory benefit.   She went into the booth for an audiogram and came out with dismal results.  She was only able to hear high frequency sounds, which pales in comparison to her audiogram during her 4th mapping, in which she could detect some mid frequency sounds.  Fran even replaced Amanda's T-Mic to troubleshoot, set her up with a new program (P2) and went back into the booth.  Same results.

After Friday's mapping, Fran left P1 and P3 the same. 

P1 is no clipping, T-Mic only

P3 is no clipping, Mic/Aux at 50/50

At the mid position (12:00) Amanda can hear minimally, but if it goes much higher, she hears more but the twitching accompanies it, which she doesn't really mind.

Her previous P2 map was clipped so that there was no possibility of twitching so at school during speech, the SLP could work with her on detection and discrimination without her having the physical response.  The other benefit was that the other kids couldn't torment her by getting her to twitch with purposeful loud sounds.

However, she started having twitching with P2 as well, so that's why we scheduled the additional mapping.  That, in addition to the fact that Amanda reported that couldn't hear anything.  She had a cold, which we have learned, affected her ability to hear.  So for about two days she wasn't able to hear anything, but that eased up after her cold symptoms did. 

P2 is a new program with a wider pulse width and increased IDR.  She is also on Fidelity 120 which apparently she had been after week 2.  There is no clipping, T-Mic only.  So far at the 12:00 position there isn't twitching and she can hear environmental sounds and people talking.

But she can't hear her own voice on any of the programs, although she previously could.  Sigh.

   

We check the ling sounds, clapping and Goldy's tags most days.  Amanda's ability to hear the ling sounds varies from day to day.  The more we think about it, we are wondering if there is some intermittent malfunction either in her processor or internal components.  

Several things came out of Friday's mapping:

1. Fran will be talking with Amanda's ENT surgeon, Dr. DiTirro this week to ask him if he thinks Amanda should have an xray to see what's going on in there. 

2. She ordered two new T-Mics for Amanda.

3. She will be talking to Lalita, the AB audiologist to see if she will be available during Amanda's mapping next month to be able to access the mapping computer remotely to offer assistance in Amanda's unique case.

Amanda is obviously getting enough benefit out of her CI to make it worthwhile.  Sometimes she'll come out of her room and ask if someone is calling her because she's hearing "something."  She had a speech session today and could hear almost all of the 44 speech sounds from the computer and could tell that some were different than others.  Then minutes later she couldn't hear some of those she previously could.  So we're back to the intermittent "malfunction" theory.  Gotta figure out what's going on with it.

Meanwhile, in spite of everything, Amanda loves her CI and wears it faithfully.  

In fact, she wants another CI.  

She wants to be able to hear from her left side as well and tell where sound is coming from.  Perhaps a second CI would bring more positive results.