Sunday, October 12, 2008

Amanda's 6th Mapping

Life's Little Pleasures--feeding cheese to Goldy!
Amanda just posted a new entry on her blog.

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.  


Charlotte said...

Wow thats some journey Amanda's going through. I wonder if Amanda had her Xrays done after her Operation to see where the coil lies... Do you think she would need a xray/scan (not MRI obviously!) just to check that the coil is inserted properly?
4 electrodes doesn't seem much isn't it. I really hope you all would get bottom of this and for Amanda to contiue her hearing. I am pleased that Amanda got wonderful audiologist that went through every possible route to make sure Amanda is comfortable with her CI.
Yeah, I want go Bilateral too...
Got your email thanks. Glad it made Amanda's day. Cxx

Katie-Louise's Cochlear Implant Blog said...

I think everyone who just recently had a C.I just want to go bilateral. I want another one too and I have asked my audio and they said after i have had this left implant for a little longer we could try asking for a 2nd one.

Hopefully i'll be able to get a 2.

I glad that she like the C.I but hopefully things will get better for her after she's had a xray n some other test so see what really cause the switching.

I have only got 13 electrodes since they couldn't fit all of them in as my cochlear is small but only 12 of them switched on.

The good thing is that she is able to hear goldy tag and some other envouirments sounds.

by the way thoses 's' word you have given me obvouisly did help me :-P I actually said it to my mum that day after a few practise and she was shocked! :-D

:) keeep posting and my fingers are cross for Amanda to get better

katie xx

Charlotte said...

Sorry i was half asleep when i wrote the previous post! Yeah a Xray would be good idea and a step forward in finding out why is it causing her to twitch.


C x

Karen said...

I think Amanda has been a great sport about all of this. It truly is interesting that one minute she hears certain things and then the next she does not. I agree that the x-ray sounds like a great idea. Hang in there Amanda...and family too. I know this affects everyone! I hope it gets better.

Valerie said...

Amanda is the poster child for a fantastic positive attitude. I pray they find out what is going on and fix it. Give this gal some sound. Jennifer, I love all the posting, just wish I had time to get all my reading done. Give Amanda a CI hug from me, I am so proud of her.

Debbie/Steve said...

Hang in there and it will all solve the problems soon. WOW, you want to go bilateral and I'm rooting for you. We not even bilateral yet but hopefully, next year.

Jennifer Bruno Conde said...

Charlotte, Yeah, some journey, indeed! Nope, she didn't have an xray done after her surgery. Sure would like to know what's going on in there with the electrode array and would like to be able to turn on more electrodes without this ridiculous twitching.

Katie, you're right. So many one-siders want to become two-siders. In Amanda's case if we can't get to the bottom of her right side, and she goes bilateral, we might have a better outcome with the left side.

I think we should coordinate it so you, Charlotte and Amanda can all have surgery at the same time. :-)

One weird thing is that Amanda can't hear her own voice. Today she got some twitching when she used her voice, but nothing auditory.

I saw Susie sitting in a shoe shine shop.
Where she sits she shines, and where she shines she sits.

Thanks, Karen. Yes, it does certainly affect us all. Xray! Xray! Xray!

Valerie, consider Amanda hugged! Thanks for the prayers to figure out what goes on in there!

Thank you Debbie, we're sure hoping for good things, too! Good luck with your journey for bilateralness.

Jennifer :-)