Saturday, August 23, 2008

Amanda's Second Mapping Update

Dear readers and followers of Amanda's Cochlear Implant Journey,

If you've been following my blog, you know that on Wednesday, August 13, 2008, I posted regarding Amanda's Tuesday, August 12th activation.   You also know that we were surprised, unprepared and disappointed to say the least.  

We were not at all prepared for Amanda to only feel her right eye twitching and getting no sound whatsoever.  If you viewed all 6 video clips you would even have witnessed this twitching for yourself.

Fran, her audiologist, set the volumes very low since Amanda said the twitching was bothering her.  That afternoon and the next day,  Amanda was experiencing music on her iPod with the direct connect earpiece and cable via the twitching. 

What?  No twitch?  No nothing?
Two days after activation, half way through the day on Thursday, August 14th, Amanda reported she didn't feel a twitch anymore, which meant she wasn't sensing sound anymore.  She had worked up through the softest to loudest programs: Program 1 (P1), Program 2 (P2) and Program 3 (P3).  We thought that maybe after her auditory nerve rested perhaps she'd feel the twitch again.  But the morning of Friday, August 15th, after a night of rest brought no twitching when Amanda put on her processor.  So her brain had acclimated and she was ready for more volume.

On Friday, August 15th we put a call in to Fran.  She had a small window of time and agreed to increase the volume since Amanda still had another week before her second mapping.  Fran upped the volume in the computer and then when we arrived, took Amanda's processor and downloaded the new program.  Amanda was back to twitching again and we felt somewhat relieved that she was getting something again.  This time, Fran set the volume levels with a larger range since Amanda had adapted quickly through the smaller range of volumes.

Amanda took it remarkably well that instead of going to Long Beach Aquarium of the Pacific that we had started out for,  that we instead drove the hour and a half to Los Angeles to fiddle with her processor.  She has been such a trooper throughout this whole process and wants to have as much success as possible with her CI.

What?  Increased twitching?
So again we started the process of starting on P1 and working her way up through the volume levels of each program 'til we got to P3.  THEN....we were alarmed on Sunday, August 17th, five days after activation, when Amanda displayed severe facial twitching in her jaw in response to loud sounds at the increased volumes.  We hadn't realized she had any facial twitching from the first day, until with the extended viewing during the editing and captioning process of the activation video clips, it was evident that the minor twitching had been there all along.  Now, with the increased volume this facial twitching was major and quite alarming.

We again called Fran and who said to keep the volumes low to keep the twitching minimal if it bothered her.  So Amanda adjusted her programs and volume where she could find the balance between keeping the eye twitching but not the facial twitching.  It was a trial and error process which wasn't always successful.  But even so, sometimes Amanda would adjust it so that she'd twitch wildly to the music in her iPod or PSP, or she'd ask us to clap or speak loudly so we could witness it.  So it obviously wasn't painful, but something that took getting used to.  

We likened it to electronic stimulation technology like a TENS machine or a High-Dow, which Gonzálo and I had purchased recently to ease aching muscles in our shoulders and back. The feeling is weird and a bit alarming at first, but you get used to it.  So Amanda dealt with this odd twitching for 5 days, knowing that her second mapping was scheduled for Friday, August 22.

Amanda's second mapping:  Friday, August 22, 2008
Amanda had her second mapping yesterday.  Fran stimulated each electrode separately and isolated four channels where Amanda could sense something in her head in response to auditory stimulation.  This was the first time Amanda felt anything inside her head. twitching was present!

When Fran found the first channel, Amanda excitedly exclaimed in ASL, "I feel something inside my head!"  She described it as a pulsing or whooshing.  We, of course, were ecstatic that there was something new there!  The no twitching was a pleasant bonus!

Fran consulted the implant manufacturer, Advanced Bionics, by phone for assistance in setting a map for Amanda.  The AB audiologist guided Fran in planning the mapping for this week.  So, Amanda ended up with two 4 channel maps; one at a soft level (P1) and one at a louder level (P3.)  The third map (P2) is a 14 channel map set at minimal facial stimulation level.

In addition, Fran programmed Amanda's second processor similarly except at a louder level for P1 and the loudest level for P3.  P2 is also a 14 channel map, set slightly louder. Depending on how this week and Friday's next activation goes, an AB audiologist may be present at Amanda's September 5th mapping.

We have seen progress these last two days in that her auditory nerve stimulation seems to be habituating so that louder volumes are necessary to achieve the same "inside the head" feelings, pulses, whooshing, whatever it is that she is getting.   She is already on her second processor and is experimenting between at P1 with higher volumes and P3 with lower volumes. 

She just tried the P2 setting on the first processor.  Even on the lowest volume there was facial twitching and no "inside the head" feeling.  We'll try again later in the week.  

We had a family get together today and Amanda's goal had been to be able to shock people by having them say her name and she would nonchalantly turn around to see what they wanted.

Needless to say, it didn't happen.  It was noisy and lots of sounds were coming at her at one. She doesn't have the discrimination to determine if it is a voice talking to her or a door slam or people yelling and splashing in the pool.  Plus she herself was in and out of the pool and spent a good part of the time waiting for her hair to dry enough to put her processor back on.

So, all in all we feel as though we are on a positive track.  We had Fran initially leave Amanda's green processor light flashing in response to sound, and red light on if the headpiece magnet wasn't in place so we could have a visual cue.  With her new found "inside the head" sensation, we may ask Fran to disable it at her next mapping.  

School starts Monday, August 25, 2008 and that will be just one more thing kids find to be "curious" about.  We've coached and practiced... and we'll see.  Amanda is very excited to start the new school year as an 8th grader and be with her friends and favorite teachers.

Here is a photo of a gift she received from two of her young cousins who couldn't make it to the BBQ yesterday.  It is a barrette from Olvera Street in Los Angeles, along with a note to say that they couldn't wait to see her, talk to her, hear her hear and were praying she'd do well.  Sweet girls.


suddensilence said...

What a great write-up, and fantastic news about the most recent mapping! That is really encouraging. :)

You all will be so glad that you chronicled all of this a few years down the road!

I hope Amanda has a great first day back at school. :)



Jennifer Bruno Conde said...

Thanks, Wendi! It's the most encouraging thing that has happened so we'll see. And once Amanda gets home from school tomorrow, we'll see even more.

Is Paige starting tomorrow? First day of HS!!


Amy said...

Ohh cool finally found something that she can feel inside head! I'm excited!
Maybe about disabling it, but maybe set all other on lowest with minimal twitching and set 4 that inside the head feeling on high enough she can tolerate it and let other nerves settle in it may take more than weeks for it to settle it, it been 6 months for me and electrodes number 1-3 is still on low but its increasing maybe 2 point every couple months. At first I couldn't hear anything only get vibrations for 4 weeks and then I finally got sound then she set it on very low and very slowly increasing it until I tell her stop.

I'm glad she's trooper about this, it will be long process but as long she's cooperating its all good! I'm wondering what sound she's getting with 4 channels? Like can hear low frequency only? I'm not sure if advanced bionics and cochlear america have same basic programming but mine's start with 22 for lowest frequency and 1 for highest frequency and have little red and green bar on each electrodes green is for softest sound and red for loud but comfortable sound and on the top it say what kind speed, and stragedies (spelling?)
Cochlear america have "ACE" its high speed processing, "SPEAK" its slow speed processing its preferred by most prelingual deaf adult that don't get stimulated with sound for long time, or grew up with old implant.
So for advanced bionics they have HiRes. P and S but its only saying about what kind electrodes stimulation not speed. So maybe ask AB representative at next mapping if she/he show up?

Janet said...

Ahhh, The sounds of progress!! Awesome that Amanda is making progress. I'm sure time will only improve Amanda's CI experience. Even those of us that have heard sound before, need time to adjust. Amanda will just need a little more time. She's started the journey and certainly is motivated and handling it all well. Yay for her! I'm sure it helps having a great coach like you, Jennifer, cheering her on! Yay for you too! :-)

Jennifer Bruno Conde said...


Yeah, when Amanda said she could feel it inside her head, we were relieved and more hopeful. It's so hard to know what benefit she'll get out of it, but so far she's been very cooperative.

I'm not sure which channels they are. We will learn more over time and are still really new to this whole process. The audiologist said that with the HiRes, even with those 4 channels active, it can cover a wide range of frequencies. We have absolutely no idea at all what Amanda is getting.

She calls it in ASL what looks like to be a whooshing feeling. When it was turned up too strong during programming she called it something going past her eyes on the inside of her head.

An AB audiologist is tentatively scheduled to come in two weeks. We're hoping to make it definite during Amanda's next mapping on Friday.

That's interesting about what you've discovered about the Cochlear strategies and that most prelingual adults prefer low speed "Speak."

We haven't even thought about speed in all this, just pitch and volume. Thanks for getting us thinking about more stuff.

Jennifer :-)

Jennifer Bruno Conde said...


Steady progress will keep us going...even if it is slow.
All the encouragement and support from you guys here and on Hearing Journey Forum will take us a long way through this process. Thanks!


Jennifer Bruno Conde said...

Amanda's first day of school went well. She only complained about one boy clapping loudly. At first we thought she meant he was doing it intentionally to get a reaction. The more she explained we realized it was part of a spirit event for Middle School where everyone was cheering and clapping. This boy happened to be sitting near her.

So for her first day of 8th grade, we're on a positive path.


Shari/"Whiger" said...

This is wonderful news. I'm really happy for Amanda. This is exciting and the journey is so unpredictable. I am glad that she can adjust to the twitching via volume and "inside the head" programs. I'm thinking about you guys and praying. :)

Both my girls started school the same day (Aug.25.) One is in 3rd grade and the other started her first day of high school.

Jennifer Bruno Conde said...


Thanks! Day two was also a non event for Amanda. So unless there is an issue I'm gonna just stay mum about school.

Thanks for your positive thoughts and prayers.

How did your girls do in school? Wendi's (Sudden Silence) daughter just started high school, too.

Jennifer :-D

Amy said...

the whooshing sound is probably the sound she is hearing, hearing sound is different than hearing aid for me, I hear inside my head in the brain I dont feel anything else like I did with hearing aid, all my life I can feel vibration and the sound inside ear processing to the brain but with CI I felt nothing only in the brain, it feel exactly same as voices in the head but much louder its weird.

Oh really? 4 can cover wide part of frequency? thats great. keep us updated on amanda mapping on sept :-)