It's been too long since I last posted...

Being pregnant, having a beautiful baby girl, being on maternity leave, returning back to work, and then catching up on everything, I realize that it's been a really long time since I last posted. I wrote the following response on a parent support group list-serve that I belong to and thought I would post it here. Happy reading!

[Here's my post]
As an audiologist who was formerly a hearing person, experienced a progressive hearing loss and ultimately received bilateral cochlear implants, I thought I would chip in.

First of all, there are many hearing loss demos on the Internet. Here are some examples:
http://www.hearingcenteronline.com/sound.shtml
http://www.phonak.com/consumer/hearing/hearinglossdemo.htm

Talking in generalities here, "hard of hearing" would connote that there is some residual (usable) hearing - either with or without a hearing aid. When I was still hard of hearing, I could hear things but not necessarily make out what they were...some sounded muffled...some sounded faraway...some I didn't hear at all. Check out the sound demos. Hearing aids just amplify sound - doesn't necessarily make it clearer. So, while with hearing aids I could hear more sounds, I couldn't necessarily understand them - kind of like a radio being slightly out of tune and you keep trying to turn up the volume to help you understand it but it still doesn't work.

Now that I am "deaf", I hear absolutely nothing when my implants come off other than the head noise (also known as tinnitus) that I constantly have. After a while, the tinnitus fades out and it doesn't bother me. As a former hearing person, it's like the world is on TV and someone hit the mute button. When I don't hear, my sense of vision and my sense of touch really become heightened. I feel more aware of any visual change in my environment and seem to be more sensitive to vibrations. Can I just say it's nice being "deaf" when: my 5-year old wants to listen to the same Veggie Tales song for the MILLIONTH time, I can't console my 4-month old but know she just has to cry it through, and I don't have to listen to my husband snore at night (though remember I'm still sensitive to vibrations which register like a 4.5 on the Richter scale LOL!).

As a former hearing person, sometimes I do feel sad because I know I don't hear like I used to and realize that I don't hear everything...on the flipside though, I am SO grateful to the technology that allows me to do things like talk on the phone again and enjoy music and hear my children talk to me.

For the kiddos that are born deaf and either get hearing aids or cochlear implants, yes, amplification can give them access to sound but it is still necessary to learn what these sounds are. Arthur Boothroyd once said something at a conference that really brought this home to me: "Listening is 90% context and 10% acoustic" Another way to look at this is that for our congenitally deafened kiddos, when all of a sudden they are able to hear, it's like hearing Chinese. You can hear all of the phonemes and syllables but if you don't know what it MEANS, then it doesn't matter. We need to help our kiddos (or ourselves) make sense out of these sounds. We also need to fill in those gaps so when they do miss parts of conversations (which they will), then can fill in those gaps with background knowledge. This is what hearing people do when they don't hear something. Oh - that's another thing...after working with kids with hearing loss, they were always amazed to learn that "hearing people don't hear everything!" Please make sure that your kids realize this!

I think the most important thing for me that kept me from having pity parties was being around other people who had hearing loss as well. That's why support groups and groups like this one are so invaluable. Not only could they understand what I was going through, I saw lots of role models. I learned how to be a deaf audiologist, I improved my sign language skills, I saw successful CI users - I really have the best of many worlds. It's important especially for the kiddos to not feel like they are the "only one" (as is common in rural areas) and not only to meet other kids with hearing loss but adults. I remember when I was in school hearing stories of kids who had never met other people with hearing loss...it broke my heart to hear that they thought that (a) they would become "hearing" when they grew up or (b) they thought they would die when they grew up...all because they never met another person like them. Kudos to Karen Putz for being a mentor and doing exactly this!...helping parents navigate the world of hearing loss and helping kids see what it's like to be a deaf/hard of hearing adult. That's the other part - as a parent, you need to be supported and support other parents because they're the only other ones that know what you are goingt hrough.

Wow - this is pretty long. I'm gonna stop here. I hope this helps.

Kind regards,~ Tina ~

[Original post]
> I have had these questions in my head for a long time and was wondering if anyone could answer them. What does it sound like to be deaf or HOH? Is it just complete silence? Can you hear yourself talk or can you just feel it? Also, do you ever wish you could hear like every one else or since it's just a part of you there is nothing to miss? Is it frustrating? Does it make you sad? Did you get made fun of in school because of it or where you accepted? I think about these questions over and over again every time I look at my 2 year old son and wonder how his life will be. All I want for him is to be able to communicate with all sorts of people and be happy with his life. I worry that he will wonder why he was born with this problem and feel depressed about it as he becomes an adult. I would give him my ears if I could in a second without question. I am hoping those of you out there who are adults who have grown up deaf or heard of hearing could help me out. Thanks so much you are all very wonderful people.

6 month report

It is now almost exactly 6 months to the day that I had my initial stimulation with my HR 90K. So much has happened since my last posting...

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At my 3-month appointment in March 2006, we did my first testing in the booth since my initial stim. Needless to say, I was blown away!

Here are my scores with my HR 90K/Auria alone:
Listening for narrowband noise (sounds like "white noise") in the 500-4000 Hz (main speech frequency range) = 15-25 dB
Speech Reception Threshold (the softest level that I can hear and repeat back spondees [two-syllable words with equal emphasis on each syllable...e.g., "cowboy", "hotdog", "baseball", etc.]) = 15 dB
HINT sentences in Quiet = 95%
HINT sentences in Noise (+10 S/N) = 52%
CNC (single syllable) words = 46%

YAY!

We also did some testing with my C-1/Platinum BTE:
HINT sentences in Quiet = 99% (ceiling)
HINT sentences in Noise (+10 S/N) = 74%
CNC words = 92% (ceiling)

So, it's evident that my C-1 side is still doing a great job for me.

Where I see some of the most benefit being bilaterally implanted is in noisy situations. This was shown when my audiologist tested me in the bilateral condition (90K/Auria + C-1/Platinum BTE):
HINT sentences in Quiet = 100%
HINT sentences in Noise (+10 S/N) = 92%
***note the significant increase compared to 90K/Auria alone and C-1/Platinum BTE alone***
CNC words = 90%

Awesome. Looking back at my previous posts, there are numerous real-life examples that show the same thing...bilaterally, I am doing so much better in noisy situations.

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Let's move on to March 23, 2006. On this day, I took Maddy with me and met some friends in Chicago for a performance of the Broadway musical "Wicked". I have seen this show live 2 times previously and have been listening to this soundtrack since 2004. When I got my second CI, it was amazing to me how much fuller the sounds were and how many notes and instruments and lyrics I had missed and not even really realized it. It was like listening to an entirely different piece of music. On the car ride up to Chicago (about a 2 1/2 hour drive for me), we listened to the music over and over...and over and over...on "Maddy's iPod", as she likes to call it. This would be my first performance hearing "Wicked" IN STEREO.

It blew me away.

We had seats in the 4th row and so in addition to getting the full effect of the 15 foot tall speakers, Maddy and I also got to enjoy seeing the facial expressions and the up-close actions of the cast members. During the performance, I would reach up and turn off one CI and just listen monaurally and there is NO comparison. It sounded so much better with two!!!!

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June 4, 2006 - My audiologist e-mailed me a few weeks ago and asked me if I would be interested in participating in the AB in-house trials for the new 120 speech processing strategy. OF COURSE!!!! So, on this day, I got to try it for the first time. It has been amazing for music and listening in noise.

As an example, just when I thought listening to the music from "Wicked" couldn't get better... I will refer to one of the key songs in the musical, "Defying Gravity". Ever since I started listening to this music, there was one word that used to frustrate me...the main characters talk about being "unlimited", in reference to the future. The way that this word is sung; however, is that the syllable "un-" is sung in a low register and then "-limited" is sung in a higher register. I could never hear the syllable "un-"...all I heard was "limited". Since getting the 120 strategy, I am now hearing "UN-limited". YAY!!!! That's kind of how I feel sometimes - "unlimited" in my potential.

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End of June/beginning of July has been pretty hectic for me in terms of work. I was at the AG Bell conference in Pittsburgh from June 22-25, came back home for a day and a half, picked up Matt and Maddy and then we all headed down to the HLAA (formerly SHHH) conference down in Orlando. It was awesome having them with me and I'm glad that they got to relax a bit and enjoy the pools at our hotel. On Sunday, we all headed down to Disney World and did the full day (14 hours!) at Magic Kingdom. Matt took some great pictures and they can be found at http://web.mac.com/mattchildress/iWeb/Site/Disney%20World%20Summer%202006.html

AB had a pre-workshop before the start of HLAA and the topic was bilateral implantation. As a sequentially bilateral recipient (meaning there was a lag between getting my 1st vs. 2nd CI), I continue to feel that I do pretty well with my first implant, especially when it comes to the phone. I thought it was because I was not devoting enough time to Aural Rehab. Comments made at this talk made me feel better:
- It takes time for the 2nd implant to function as well as the 1st (for me after all, I've had my first one for 6 years and my second one for about 6 months)
- The 2nd implant lags behind the 1st for about a year (that explains a lot to me...)
- There will be a long-term dominance of the 1st implant - less though if the delay between 1st and 2nd implant is <6-10 months As I've said before, though, the benefits of being bilateral are most evident to me in noisy situations where it SO much easier for me to listen. I'm also enjoying hearing Maddy no matter what side she's on.

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A few months back, I was contacted by Paul Dybala, editor for Healthy Hearing - an audiologist trade e-magazine - to do an interview about my bilateral experience. If you'd like to read it, go to http://www.healthyhearing.com/library/interview_content.asp?interview_id=739 I think it came out pretty well!

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OK, here's some non-audiology related news...Matt and I are pregnant!!! Yep, I took a pregnancy test in early May and results were confirmed in mid-May. At that point, I was...er... already at 14 weeks. Whoops! Yes, that's 3 1/2 months. First trimester is over!!! We are absolutely in shock and thrilled at the same time. It took so long for us to get pregnant with Maddy and we've been trying for a long time for a second one, that we kind of gave up hope.

Matt's hypothesis is that my cochlear implants are actually secret fertility devices . I got my first implant in August 2000, became pregnant in January 2001. I got my second implant in December 2005, became pregnant in February 2006. Hmmmmm...

We are having a girl and are calling her "Mia". She is due in mid-November. Maddy is very excited to be a big sister and can often be found barrelling towards my belly to plant a big kiss on my belly button for Mia. Matt's nickname for me is "Mama Mia".

That's all for now. I hope to post more news soon!

Long overdue updates....

It is now Week #9 and I have lots to report! A lot has happened since Day #4…

Week #1
I found that the best time for me to do auditory training took me back to the days when I got my first CI and drove around so much from school to school when I was an educational audiologist – in the car! Listening to talk radio and music has been great and I am getting more words and more sounds every day.

I also went through my first set of 3 programs and instead of waiting until 2 weeks post-hookup for a map check, I got to go in after 1 week. I am very fortunate being so close to my CI center and try not take that for granted! We remapped across the 4 bands and the first 3 bands went up a good bit and my last band stayed essentially the same. It is amazing to me how FAST it is to do a map now! I bet the parents of the fidgety little ones really appreciate this. Also, instead of each of the bands sounding like whiffle bats hitting the ground, I could hear distinct octaves. My brain is learning – YAY! After this tweaking, I put my trusty C-1 back on. It sounds so good together, despite having two different technologies.

Sounds of Week #1:
• Oh my goodness…I absolutely DO sound like a garbage truck backing up when the headpiece of my Platinum Series Processor (body-worn processor) comes off! Beep…beep…beep I initially elected to have the feature of the audible alarm put on to show parents that there are easy ways for them to tell if their young child’s headpiece comes off, hence, the beeps. As an adult, however, I have found this alarm invaluable because it alerted others who were talking to me that I wasn’t hearing when the alarm went off! For example, there are times when I’m wearing my body-worn processor and I move in my chair, my cord moves and it pulls my headpiece off. Not a big deal except when I’m engaged in a conversation. Now, people who recognize what this alarm means, actually STOP TALKING and wait for me to go back on-air. Brilliant!
• Hearing the HVAC system kick in when it’s been so cold at night
• Maddy in her bed, rolling around and playing peek-a-boo with herself because she doesn’t want to go to sleep yet

Week #2
I feel balanced. For me, this is the only way to describe what it is like to go from unilateral to bilateral implantation. I am noticing all of those bilateral advantages – listening in noise is easier, hearing sounds on the left side is awesome, it is easy to equalize the volume between both sides and I feel like I need less volume on my C-1 side, and I can localize (figure out where a sound source is in space)! I was at the Mall and I couldn’t remember where I parked my car (definitely NOT an isolated event). In the past, I have just hit my “Unlock” button and looked around for the flashing lights. This time, I closed my eyes and hit the “Alarm” button. I turned my head in the direction I thought the car was, opened my eyes and there was my car! Hurrah! I’m hoping this new-found localization ability will help me find Maddy in the house but she still has to be still for me to do this.

Sounds of Week #2:
• Hearing the toilet flush downstairs (we live in a bi-level house) which told me that Maddy was downstairs and not, in fact, cleaning her room like I had asked her to.
• The clicking of my clock in my home office
• My mom’s I’m-Filipino-but-talk-like-Zsa-Zsa-Gabor voice

Week #3
Went to Valencia, CA this week for a company-wide meeting – I enjoyed lifting up my hair and showing everyone my Auria and the Techno color caps that I had chosen to wear. Working for a corporation is so different than working in the schools in that there seem to be so many more listening-intensive activities, especially in groups due to meetings and presentations and such. When I was unilateral, I found this exhausting but I really felt less fatigued this time around and I truly believe it is because I am hearing from both sides and having to work less. Voices continue to become more natural but are still sounding the best when I am using both sides… new side alone still doesn’t sound as natural as old side but I realize it has only been 3 weeks! I don’t think my old side sounded completely “natural” to me until many months later.

Sounds of Week #3:
• Had dinner with Matt for Date Night while my sister watched Maddy. We’re sitting in the booth and talking and all of a sudden my eyes get really big. Matt said, “What’s wrong?!?” and I said, “Nothing, but your voice is totally POPPING out at me here in this slightly noisy restaurant!” I sat there an experimented – turned off one side and then the other and the difference in noise is awesome to me, there is no comparison.
• Still being able to hear when one of my batteries die :) I no longer have the completely deer-in-headlights look but can continue to hold a conversation while I go and swiftly change batteries. I timed myself…it takes me about 15 seconds to go to my purse, grab a battery and switch out the dead one. How cool is that? Maddy is also learning how to swap batteries out for me.

Week #4
I had another map check this week. Once again, the first 3 bands came up and my last band stayed about the same. One big change that we tried this week was also increasing my Input Dynamic Range (IDR) from 60 to 85 dB. What this means is that I am getting greater access to environmental and speech sounds without them being omitted or compressed. This is also happening all the time, without the need for me to switch programs. I can hear very quiet or distant sounds, as well as take advantage of listening to music on my iPod in my office through the speakers.

I went for a long walk this week through some of the trails by my house. I live in Subdivision Land so there aren’t lots of animals to listen for except for the occasional pet dog protecting his territory or squirrel trying to cross my path . As I walked around, I felt like all of my senses were heightened…the sun was exceptionally bright and felt warm on my hair, I could smell burning wood as people took advantage of their fireplaces, the taste of my morning coffee was still fresh in my mind but most of all, there were all of these sounds! I’ve heard all of them as a former hearing person but listening in stereo again really added another dimension. That, plus the fact that I am using my full IDR, means that I am hearing things far away as well as up close. Here are some things that I heard on this walk:
• the gurgling of the water in the retention basin of the subdivision from a block away
• the geese flying overhead
• a couple of power-walkers coming up from behind me and laughing at a story that one of them told
• the sound of my shoes kicking rocks in my path
• both of implants going in to compression (not allowing sounds to become TOO loud) when an ambulance and two police cars whizzed by
• hearing a dad give directions to his son about how to open up his stance and hit a ball to the opposite field in baseball


Week #5
I really love my job…being active on various cochlear implant forums as well as having contact with some of our customers, I have really come to appreciate and cherish what this technology has brought to us. I read e-mails and blogs, personal webpages and testimonials of how people are benefiting from this wonderful device. Of course with these joys are challenges but I figure that is what I’m here for and even if I don’t know the answer, I will find someone who does. It’s funny as I write about Week #5 that I’m really just talking about work things and not necessarily “listening” or “hearing” things…I guess I’ve been pretty busy this week! :)

Sounds of Week #5:
• my cell phone vibrating on my desk because I had turned my sound off
• talking on the phone with Auria and HR 90K more and more with familiar people – I have not taken the plunge yet with unfamiliar voices
• the fan of the solar wall that Matt installed going off and blowing warm air into the house (there is a duct in my office closet right near my desk)
• the voices of Maddy’s classmates asking me questions after I did a short lesson about sign language – they also enjoyed learning about my implants. Maddy especially reveled in showing them what metals objects in her classroom can stick to my head!

Days #2-4 after Initial Stimulation

Thursday, January 5, 2006 - Day #2

While driving in the car today, I set my iPod to Maddy’s playlist – yes, this has been what I listen to most. On it are songs by Peter, Paul & Mary, characters from Sesame Street (Elmo’s voice is even MORE annoying when it sounds like he is on helium), our beloved VeggieTales and one of her new interests introduced by Matt…Diana Krall. Who knew how much a 4 year old would like jazz?!? Arthur Boothroyd at the national Educational Audiology conference last year had a quote that has really stuck with me: “Listening is 90% context and 10% acoustic.” Not to minimize the effects of this wonderful technology, but there is so much to that statement. I think of this concept as filling in my auditory “deafspot”(like visual blindspot)…there may be things that I am not hearing, but my auditory memory is filling in the gaps. With familiar music, this is definitely the case – I do much better with music that I am familiar with. Today, however, probably more based on the lyrics and the rhythms (vs. the tune), I was able to identify a lot of Maddy’s music that I listened to.

I also tried my Direct Connect earhook today with the iPod. This is a special earhook that I use with a patch cable to connect to battery-operated devices. I am looking forward to listening to books-on-iPod while working out. It still sounds a bit like Alvin and the Chipmunks meets Pong but at least I am starting to understand more words.

Maddy has been reading for probably the past year and a half. While I’d like to take all the credit for that, Matt needs to take more since he has always insisted on multiple books to read prior to bed. Another thing that we have realized is how much she has benefited from closed-captioning on television. I now find myself in the same position of taking advantage of closed-captioning to help me with my listening skills. I found myself reading and listening, then closing my eyes and just listening, while watching TV tonight. It’s still pretty tough but it is definitely a great way to get some Aural Rehab in.


Friday, January 6, 2006 - Day #3

First good phone call this morning – while in the car on my way to meet Sherry to work out, I was able to communicate with her to discuss another location because our facility was closed.

First bad phone call – OK, I was cocky. I thought I would be able to talk with Edie (my fellow BEA CSS) while walking around this echoey, sadly empty indoor mall. Unfortunately, the acoustics were pretty bad and it didn’t go very well. Next time I’ll try using my Direct Connect earhook so I can try blocking out the environmental sounds.

I feel like I’ve been adapting to the sound rather rapidly and I am already on Program #3. It’s amazing to me that when I go back to Program #1 which I used a mere 2 days ago, that it sounds so soft! I have a call in to my audiologist to see if I can move my appointment up a week for my map adjustment.

I worked on HiRes alone for most of the morning. It was kind of passive since I was at my computer and just letting my CI get bombard by NPR. The sounds of the computer keys is starting to sound a little more natural but it still sounds like the old style keyboards – the ones that made the really loud clickety-clack and even gave you some tactile feedback as the keys jumped back at your fingers.

This afternoon, I decided I wanted to work more on music again. Last night Matt set up my Tivoli system with one speaker and subwoofer (the second speaker is still downstairs). I listened to more classical music but also to some familiar classic rock. The subwoofer is placed at my feet and I am getting dual sensory input as I hear and feel the music.

Things I just heard in my kitchen that sounded natural: the cacophony of my dishes collapsing on top of each other as I try and pull out my coffee mug, my microwave beeping to tell me my coffee is warmed up, the creaking of my hardwood floors as I walk across my kitchen, tearing open my packet of Splenda and the fizzing noise it made when it hit my hot coffee and the spoon hitting the sides of my mug as I stir in the Splenda and add creamer.



Saturday, January 7, 2006 – Day #4


I hit some of the web-based listening exercises today. My favorites are the ESL quizzes and the “Name-this-orchestral-instrument” sites. I even had company today as Maddy sat at my side and did some of the exercises with me. With the word discrimination tasks, she said, “Mommy, this is too easy!” (sigh) Show off! She really enjoyed the instrument site. I am starting to understand her a little bit more without visual cues. Her voice is pretty tough because it’s so high-pitched and she doesn’t always talk loud enough.

Listened to Alison Krauss today with both my Platinum BTE and my Auria BTE this evening…ohhhhh man! Matt brought up my other Tivoli speaker so not only am I hearing in stereo, I’m being stimulated in stereo! This is surround sound at its finest! It sounded AMAZING. While I realize that I am getting a lot of the input from my older CI, I really noticed an improvement when I put my new CI on.

Tonight we babysat my nephew, Sam who is 18 months old. When it was time for bed, he was not very happy and so while I tried to console Maddy who was sitting up in bed covering her ears and saying, “I don’t want crying babies in MY house anymore!”, Matt was trying to console Sam. Things settled down, I laid down with Maddy and Matt came over with Sam. It was pretty quiet in the room but then I asked, “Matt – is that Sam breathing?!?” I could hear him breathing from 5 feet away! Yay!

A funny quote came to mind tonight…do you remember the Hair Club for Men commercials?...”I’m not just the President, I’m also a member!”…”I don’t just talk to people about their CI experiences, I have one, too…have one…two…” Never mind.

Can you tell that I worked with kids before? On the left is my Platinum BTE which is used with my older C-1 internal device. On the right is my Auria which is used with my HiRes 90K internal device. I am "Hear2Listen". :) 

This is Rebecca, my awesome photographer and sister-in-law. 

Here's the moment of truth - Julie turns on my CI so that I can hear through it for the first time. Hmmmm...not so bad...however, when I hear myself talk, I sound like a robot and all I can think of is "Danger Will Robinson! Danger!" 

Here he is looking at the stitch that's poking out. 

Here's Dr. Novak checking out his handiwork. 

Maybe this is the one that I thought sounded like a...(ahem)...fart? 

My first map with my new Auria. I'm listening to sounds and letting her know when they are "comfortably loud". 

Here's Julie, my audiologist, getting ready to hook me up! 

Hook-up...Take 2!

January 4, 2006: INITIAL STIMULATION
Well, it’s a done deal – I am officially bilateral!!!! 5 years and 4 months after being turned on with a C-1 device in my right ear, I am now being turned on with a HiRes 90K in my left.

As I sat in the waiting area, I was contemplating how different this experience was compared to my first hook-up. I arrived with a lot more knowledge due to having done this before, working for Advanced Bionics (where I am learning TONS!) and because I’ve been reading so many posts on the forums about other people’s experiences. I was obviously, anxious and ready for hook-up with a “hope-for-the-best-but-expect-the-worst” attitude in terms of what I would initially hear. I also had comfort in the fact that I always have my C-1 side to fall back on as I go through the learning process.

Julie, my audiologist, arrived, looked at me and said, “Ready?” I then followed her to the oh-so-familiar programming room. On the table were my batteries in my charger and beige metallic Auria. I chose the Standard Plus Power option so I have two PowerCel slims and two PowerCel plus batteries. Shortly after we settled in the room, my sister-in-law, Rebecca, came in to take pictures.

The first thing we did was set my magnet strength. As was the case with my first CI, the regular magnet strength was not enough and so, she had to add on another magnet. Thick head or thick hair? :) It did the trick!

Right about then, my surgeon, Dr. Novak, came in to check my incision. I mentioned that I thought one of the dissolving stitches was poking through my incision and he confirmed this. He said that it was no big deal and I could just clip or pull it out! I said, “You’re sure I’m not going to unzip my incision or anything right? Kind of like pulling that loose thread and undoing a hem?” He said I was safe. Phew! He said the incision looked great, wished me luck on my programming and then left the room.

I turned off my trusty Platinum BTE and we started with setting my M-levels which Julie describes as my “comfortably loud” levels. She continued to comment that compared to programming my C-1, because we only need to do M-levels (as opposed to also doing T-levels which represents the softest levels that I can hear) and that we do this only on the 4 frequency bands which encompasses all 16 of my electrodes (as opposed to programming each of the 8 individual electrodes), it was about 4 times faster in programming time. She wasn’t kidding! This portion took all of maybe 10-15 minutes! As a late-deafened adult as well as an experienced CI user, this was not a difficult task for me. I often think about families of young children or children who don’t have the language to be able to do this by themselves. Sometimes they use picture cards. I think it’s also great that audiologists can get objective information in the Operating Room or through the CI in the programming room so they at least have a good guestimate of a starting point. I noticed my objective measures on a worksheet on the table which Julie used as a starting point.

To me, the sounds I heard on the first 3 bands sounded very similar whereas the 4th band was the same sound but with a more electric quality. There was a slight perception of octaves or different pitches in between bands as well. My first thought of what these sounds were like took me back to my childhood home…on the way to our basement where my room was, were stairs that had wooden banisters that went from the top of the stair to the ceiling. I remember as a child, taking my hand and running it across the banisters as I walked down the stairs. Thus, towards the top of the stairs, the sound was more high pitched (shorter banisters) while the bottom of the stairs had a deeper, lower sound (longer banisters). The sounds coming through my HiRes 90K and Auria, reminded me of going down the stairs and hearing this “thunk thunk”. As I listened some more, I used more descriptors…hitting a bongo drum and even one of the sounds was like a……fart.

Next, came the moment of truth…turning on my CI and listening to speech. The first thing I heard was like fireworks off in the distance, somewhat muffled…silence, then I heard myself say, “ba ba ba” (go figure – I’m an audiologist!). I immediately started laughing because my voice sounded so robotic! Very monotone and choppy. When I tried to talk in sentences, I talked very monotone and choppy. I wasn’t able to tell any inflection yet but I could definitely tell syllables. As I listened more, voices started coming through but sounded somewhat like an alien on helium (!). We continued to talk and I continued to talk like what I was hearing.

For you techies, I am using the default program HiRes-P with an IDR of 60 dB. I have 3 programs with the #2 and #3 just louder versions of #1 which gives me some headroom as I start adapting to these new sounds. All of my electrodes were inserted and they are all functioning just fine!

She unhooked me from the laptop and we put on one of my PowerCel slim batteries. Julie then asked me to put my C-1 on. As soon as I did and started talking, Julie and Rebecca immediately noticed a change in the way I talked – much more natural again. There was a very slight echo quality as my brain tried to integrate the two signals but not nearly as bad as the very delayed effect of when my C-1 was turned on and I was using my hearing aid in the opposite ear. The best part was being able to hear IN STEREO!!!!! It’s been so long since I’ve had any usable information from that left side that immediately, I felt balanced.

Next, we tried some very informal perception tasks. Julie went across the room (about 9 feet) and I knew what was coming…Ling sounds (“ah”, “oo”, “ee”, “sh”, “s”, “m” and later I discovered she did “f”!). She said, “OK, when you hear a sound, raise your hand” which shows that I am able to detect the sounds. She started, I heard, I raised my hand and then I digressed.  Instead of raising my hand when I heard the sound, I started trying to guess what I was hearing. After all was said and done, I was able to detect all of the Ling sounds and I was able to discriminate “ee” and “ah” consistenly, and “oo” and “m” somewhat consistently. I could definitely hear “sh”, “s” and “f” but I was not able to identify them correctly yet. Because Ling sounds represent different frequency ranges across the speech spectrum (e.g., “s” and “f” are high frequency sounds whereas “ah” and “oo” are low frequency sounds), the idea is that if you are able to hear (detect) and identify (discriminate) these sounds, then you should be getting good access to speech sounds.

Julie then left the room and came back with some noise makers. She pulled out a red “Barrel O’ Monkeys” and started shaking it. I listened. I said, “Pennies?” Julie opened up the barrel and inside were pennies!...and nickels and dimes and quarters. YAY! She then went to reload. She shook the barrel again and I could tell it was different. Unfortunately, I looked up and I got a peek at what she had put in (marbles) and so I didn’t get a chance to really guess but I could definitely tell that it was a different sound. Awesome!

We then went through my various accessories and I got to put my color caps on. I chose Techno Colors! In putting on my Auria, I realized how awkward it was for to do this on my left side (I am right-handed). That plus the magnet is not where I expect it to be and so it will take a little while getting used to. I gathered up all of my goodies and put it into my awesome AB totebag. My next appointment is in 2 weeks and we’ll see what kind of adjustments I need. I am so blessed in that the CI center is so close (15 minutes) and accessible to me.

As I walked out of the office and over to the parking garage, I was hit with a barrage of new sounds…elevator doors, the “ding!” as the elevator stopped at each floor, people coughing, people talking, the wind outside, the rustle of my coat, car door slamming, key turning in the ignition, radio blaring! (I had just been listening to the musical “Wicked” ) I could definitely tell the difference between environmental sounds and people talking. Music is all a jumble still. After I turned the volume on the radio, I turned to National Public Radio (NPR), which is what I usually listen to. I noticed that I can’t discriminate male vs. female voices – this is opposite of my C-1 experience. That’s ok – it will come. However, if I listened really hard, I was already able to pick out a few words. After 10 minutes of just sitting in my car in the parking garage (and SEVERAL disgruntled people honked at me for not moving – at least I think it was a honk…), things started clicking. I found that the weather forecast was easiest – probably because there is a much more narrow set or words compared to world news where I have NO idea what could be happening or what names they are using. I think I got about 50% for weather and maybe 25% for world news.

After my appointment, I went straight to my babysitter’s house to pick up Maddy. I could definitely tell the difference between her voice and my babysitter’s voice. That tells me that I’m starting to hear some pitch differences. We get in the car and Maddy asks for music on the iPod. I’m kinda half-listening and watching her sign in the rearview mirror. She asks for VeggieTales – I highly don’t recommend trying to use VeggieTales for auditory training. Synthesized voices (especially Larry the Cucumber) on top of perceptions of synthesized voices, does not sound very good. Yuck. I think I’ll try and stick to more naturally produced sounds.


EVENING AFTER INITIAL STIMULATION
I’ve been bilateral now for 7 hours and just came back from working out. At the gym, I could hear the distinct “thump-thump-thump” of shoes pounding the treadmill in front of me. Those sounds reminded me of a hitting something with a whiffle bat. Lots of new sounds to take in. I look forward to using my Direct Connect earhook and listening to my iPod the next time. I’ll probably go to the library and see if I can get some books on CD. It’s been a full day and I’m pretty pooped. We’ll see what tomorrow brings…



January 5, 2006: DAY #1 with HiRes
As I write this, I am sitting at my computer listening to NPR – I am so lucky that I can focus on auditory training while I work. I’ve decided that while I work, I will only use my Auria unless I need to answer the phone or something and then I’ll grab my Platinum BTE. Actually, this morning, I listened in on a webclass while bilateral. It was very nice getting a stereo effect. Even though I know I wasn’t understanding a whole lot with my new side, I felt like it was still contributing to my overall sense of sound. I’ve been trying NPR but have also tried some classical music. Still somewhat soft and not very clear but I can sense the different rhythms and changes in tempo.

This morning Maddy was a rock star, specifically, a drummer. It was so interesting just sitting there and watch and listening to her hit metal mixing bowls, plastic mixing bowls, my 2 quart roaster, a medium pot and my little skillet. Already, my brain is starting to make sense out of these sounds and I could close my eyes and guess at which “drum” she was hitting.

When I woke up this morning, it was quite sore behind my ear. I think it’s because the Auria was rubbing on that stitch that was poking out. Matt clipped my stitch and it feels much better.

On Program #2 today – things don’t sound like whiffle bat mode anymore but it still sounds like one of those voice synthesizers. If I stop typing and just listen to the news broadcast, I feel like I can understand about 50-75% of what they’re saying. As I was just typing, that filler NPR music came out – the kind in between stories. This piece happened to be jazz – I could tell immediately that it was instrumental only and it almost sounded “musical”. :)

Thanks to everyone for the good vibes, wishes and prayers!

Hear Hear!

Day #12

Things have been relatively calm since my last entry...of course, there have been a few highlights. ;)

On December 13 (yes, 5 days after surgery), I got on an airplane and flew to Tennnessee for a meeting. People think I was crazy, but I really was feeling rather good. It's amazing to me how much easier it is this time around. During my first surgery, I had very bad dizziness which kept me off my feet a little bit more. My incision still looks and feels great and I haven't felt anymore after-effects from the anesthesia.

I do have quite loud tinnitus (ringing) in my newly implanted ear and at times, it does seem to interfere with what I am getting from my first implant. I did get a bit of a tweak (a/k/a map adjustment) when I was on my trip - helps to work with a bunch of cochlear implant audiologists! (Thanks SG)

After a day and night in Tennesse, I got to come home and read a bedtime story to Maddy and tucked her in. The next morning, I dropped her off at school and Matt and work and then headed back to good old Willard - what I like to call "airport in the cornfield".

Next, it's off to sunny southern California for another meeting and the Advanced Bionics Holiday Party. I really work with a great bunch of people and feel so fortunate to be part of this group. They are working so hard to bring the best product forward and really support their customers.

The party was held in the Ronald Reagan Memorial Library which also houses Air Force One. It was kinda neat to walk through the plane which is surprisingly small! The tour guide said it is about 1/3 the size of the current presidential plane, Air Force Two.

This party was a very difficult listening situation. I definitely was depending a lot on speechreading (as I'm sure others were). It was in this huge room, with hundreds of people and VERY loud music! I can't wait until my next holiday party so I can see how well my new technology complements my previous technology.

Afterwards, I stayed up for a few more hours chatting with a wonderful colleague before taking a shower and heading back to LAX to catch a 6 a.m. flight (yes, this means I had to arrive at the airport by around 4 a.m. - ugh!). A couple of hours of sleep on the plane and then I arrive in Chicago. My friend picks me up and we head downtown...I have tickets to see "Wicked"! This is my 3rd time seeing this show and I still love it. The next interpreted performance is at the end of March and I look forward to seeing it for the 4th time with my new CI.

After the show, we hang out for a couple of hours and then I'm back on the plane going home. Once again, Maddy's awake and ready for her book. I'm home. :)

Matt, Maddy and I will be seeing both sides of the family for Christmas which means a bit of driving. I don't know yet about our plans to celebrate the New Year.

January 4th can't come soon enough!!!!

Happy Holidays!

Looking back to my first CI

I went ahead and set up another site that talks about my experience with my first CI. It's at http://tinagoesci.blogspot.com

Blogging is addictive! :P

Amazing! This is just Day #2 and it looks great already.

Bandage coming off... 

Mwwwwwwah! 

Hi Mommy! Let me check out your cochlear "eggplant" 

Squirrel Girl! 

Getting ready for discharge 

In the Recovery Room...note my trusty body processor ready and waiting for me to wake up! Thanks to Lee Ann who made sure I was all set up. 

Right ear with my newly replaced Platinum BTE! 

Let's make sure we know which ear needs an implant... 

"Gone bilateral" surgery cap also from the BEA..I got to wear this all the way to the OR 

Maddy in her cute Tigger scrubs from the Bionic Ear Association 

Last chance for earlobes! 

My Top 2 caregivers 

Tina Childress 

Day #2

Took it easy this morning – my friend, Sherry, came over while Matt went to work. I’m feeling pretty good and the anesthesia effects are pretty much gone. I’ve got my appetite back and so was able to enjoy some of the meal my friend, Kim, sent over.

The best part of today was taking a SHOWER! It felt good to take off the pressure bandage. Matt took lots of pictures and they will follow. He also said that the incision was much smaller than my first one. I can feel the skin getting tighter around the incision and sometimes that can cause a little discomfort – regular Tylenol has done the trick though.

Also, I’ve set up a website to “blog” my experience – it is basically a copy of these e-mails that I have been sending out. If you would rather not receive these individual e-mails, let me know and you can just go to the blog website when you want to get an update. This is where I’m hoping to upload all of the pictures and such. I’m also hoping to upload my stories and e-mails from my first CI surgery so that people will understand why I have pictures of squirrels. J

I figure from here on out, I won’t have much to say as I wait the 3.5 weeks until hook-up. At that point, I expect to get busy writing again!

Happy Holidays to all and I look forward to keeping in touch!

Hugs,
~ Tina ~