A friend shared this with me on Facebook today.
Vanderbilt University is conducting a study using a new mapping strategy for cochlear implants, with dramatic increases in the quality of sound. Read the article for more.
Today I learned that going at least once a year for a MAP session is necessary. My audiologist, Kim tells me that daily life can slowly corrupt the MAPs in your CI. Static electricity is the culprit.
Since I’ve graduated from college (May 2009), I haven’t done anything with my cochlear implant, except wear it in my daily life, which is why I haven’t been updating here.
It’s been interesting having a very hands-off approach to tinkering with my MAPs (one of the benefits of going to a school with an on-site audiology department) and just living my daily life without having weekly access to a audiology center.
Over the last few months, Mom has noticed that I haven’t been hearing as well, and my speech has been deteriorating. Also, she’s frustrated with me because usually by the time I get home, the batteries are dead, I don’t want to “listen” any more for the day, or I take a nap, so I’m going without sound in my ear. She doesn’t get to have the benefit of living with me with my cochlear implant, because when I’m at home, I want quiet.
My problems have resulted as a shift from my listening environments. I was going from a school environment to a work environment. My work environment consists of listening to the floor buffer in the morning (very loud, it makes my head hurt every time he races by), of shopping carts and equipment crashing into each other, of babies crying and kids throwing a temper tantrum (those really get on my nerves), and people dropping stuff on the floor. So by the end of the day, I’m tired, I have a headache, and my ear and skin around the magnet is sore.
Several arguments about it later, she finally made an appointment and I was back in to see Kim, and tinker with my MAPs. So off we go on Tuesday to the audiologist. I came home from work thinking my appointment was on Wednesday, but it was actually Tuesday.
Before I left NY, Catherine made a CD for me with all my MAPs and relevant history so I could give it to Kim. Well, I couldn’t find the CD with all my programs and Kim didn’t have my history on the computer. The problem was that Kim couldn’t download my MAPs without resetting my CI and losing my programs, because there was a new version of the SoundWave program. Luckily, the on-call audiologist at AB came to the rescue and we were able to get my programs downloaded without erasing them.
I could instantly tell the difference between the program in my CI and the redownloaded one, and how much crisper and clearer it sounded.
Mom came with me, and she noticed that after my program got redownloaded and throughout the session my speech was rapidly improving. I wasn’t making more of an effort, I was my same old Allison self…so yes, being able to hear the speech sounds, even without consciously being aware of it, does make a difference in being able to replicate those sounds when speaking. Mom said a sentence before the program and I had a hard time understanding what she was saying, but after the new downloaded program, I was able to understand everything she said, without being able to read her lips.
As always, I present a challenge for any audiologist, and Kim is no exception to this rule (Thank you to every audiologist who has ever had to do a MAP for me). Where I was in January 2007 (extremely powerful) and now was a huge difference, and I still wanted less power. This is confusing because she couldn’t figure out why the big difference (key word: MORE POWER) between now and then, other than I wanted my CI to be more like my hearing aid, with lots of low frequencies, and not a lot with the high frequencies.
I’ve been wearing my CI with the volume in the 7:30 position (it should be at the 12:00). I still feel like I listen more with my hearing aid ear, instead of my CI ear. So, my new assignment is to wear my CI with the volume at 12:00, and turn down the volume on my hearing aid. In order to reap maximum benefit with the CI, I need to be listening more with the CI than with the HA ear. “Use It or Lose It” is basically what it is.
I need to go back in a month or so for follow up, since it’s been so long, and we made some changes with my MAP. I’m currently rocking it with Fidelity 120, with a narrower IDR, and my sensitivity level has been reduced. Electrode 3 has been reduced so that it goes nicely with the curve in the program range instead of being a big spike, which could be responsible for some of my issues.
Went back to work yesterday with my new program, and I was in bliss. The floor buffer wasn’t like a oncoming train running me over, the shopping carts weren’t like a cymbal being crashed on my head, and the babies crying were not like a needle being pierced through my brain.
Guess I’ll add that to my list of annual doctor’s appointments: physical, dentist, eyes, gyno, and now MAP sessions since my CI is not “new”.
Woke up this morning to snow of all things. Lovely. But I got to listen to the skrrrrit-skrrrrit of brushing the snow off of my car and scraping the ice off the window. That was fun.
I popped a tape into my car radio, and “Macarena” came on. I listened to the entire song first without Fidelity 120, and then with it. My brain is now confused, because it goes against what I had decided yesterday.
I liked “Macarena” with Fidelity-120 processing much better. The bass was much more true, and the sounds had more of a roundedness to it.
Sitting in class, listening to what’s going on, I find that voices still sound rather distant, like they’re in a tunnel.
I’m slowly starting to return to a sense of normalcy with hearing. It’s not a fast process…my brain still needs to get used to all this stimulation.
Today I had listening therapy with Laurie. I got set up with the CKatz system and was doing the test for it to establish a profile for me.
After listening to the warmup sounds, I started the test, with both my hearing aid and my cochlear implant on, and had to identify all the consonants. I was doing okay, and then I started getting everything wrong. “Incorrect.” “Incorrect.” “Incorrect.” the words kept flashing up on the screen.
Hmm, I thought to myself, there’s something odd here. Are they getting harder, or can I just not understand anything anymore? After getting like 20 in a row wrong, I said “Okay, there’s something odd here.” So I turned off my hearing aid and clicked “next”. No sound. That’s when I figured out that my cochlear implant battery was dead. Great.
It’s one thing to have a map that’s quiet until my brain readjusts, and it’s another thing to be listening with both the hearing aid and the cochlear implant, and not being able to know that the cochlear implant has a dead battery. I was extremely humbled by the fact not only is my current program quiet enough that I can’t tell that it’s not on, but that it’s powerful enough for me to be able to pick out the speech sounds that my hearing aid is in no way able to detect.
Having a cochlear implant really changes how you hear speech. It was incredibly powerful to me, to have that realization hit home again just how amazing the cochlear implant has been for hearing speech.
Had a impromptu speech therapy session with Karen and another student of hers today. While I was there, she reminded me that the videos of the two of us are up on the website, so I got to see them!
Here’s me talking and working at speech therapy (for those of you who are curious what I sound like!) (Three Videos In All)
Voiceless fricatives and coarticulation
As students view the spectrograms they can clearly see the energy distinctions for the /s/ and /sh/ and coarticulation.
Contrasting sibilant fricatives and affricates
Students can see the differences between the continuancy feature of /s/ and the stop plus the continuancy feature of /ch/.
Courtesy: NTID Speech and Language Department
If there are any problems with the video, let me know, and I will upload them myself.
Back…and going to be wearing my CI for the first time since….last spring, really.
Correction, I’ve made a few attempts to wear it over the summer, and most recently, in January, when I had a dinner date. I wanted to be able to have a conversation in a loud restaurant, with a person who was hearing and did not know sign language.
It was a disaster. The sound kept cutting in and out. I kept adjusting it. Finally, I sat with my hand over the magnet, elbow on the table, wondering if it was my hair that was causing it to possibly slip off, or if it wasn’t strong enough.
Finally I just ripped the processor off my head in frustration, and said “to heck with it.” First, having surgery twice. Then the rashes/redness, the itching, not being able to see Mandy, and now the processor wasn’t working properly. What else was going to go wrong? Maybe I was just not meant to have a cochlear implant.
In short, I gave up. Nobody seemed to care, so I stopped caring. Course, other things were going on in my life at the same time which didn’t help the situation. Lack of support from the people I needed and craved it the most was one.
After several trips home visiting family, and fights with my mom over my lack of using the CI,her disappointment with me for not wearing it, and the fact that I hear much better with the CI, than with just the hearing aid alone.
Graduation looms in 7 weeks. So time is running out. So I took action.
I made an appointment today, and was able to get in and see Catherine tomorrow. I’m not able to see Mandy, as she’s had no room for me for the last year. I’ll be working with Laurie next, starting on Monday, to ease myself back into this whole CI thing.
Let’s see how it goes.
edit: the correction is that my mom was upset with me because she felt like I was not wearing my CI because I didn’t want to, not because of the issues I was having. If I had made an effort to resolve the problem, with no luck, and then finally made the decision that it was not worth pursuing anymore, then that would be a different story.
In my last post, I said that I hadn’t worn my CI for three weeks.
While I was at home over Spring Break, and chatting with my mom, I was itching, so I started to scratch my ear. She saw that my ear was red, and asked me to take off my CI, which revealed that it looked like I had contact dermatitis. My ear had been itching, but I never paid much attention to it, since I figured it was part of normal bodily functions, if you have a itch, you scratch it. Living alone, I can’t see the side of my neck/behind my ear, so I paid no attention to it.
Her thought was that the redness that was there, was along the same area where the CI Processor and the battery pack were resting against my skin. I stopped wearing it for two days, to let it subside, and on the third day, when I put it back on, it started to flare up again.
I went to the doctor, who said it looked like an allergic reaction, who then called a ENT specialist to see what he thought, and he agreed. I haven’t changed shampoo, or used anything that was new and could be possible triggers for an allergic reaction. Catherine was talking with the audiologists at AB, who sent me a list of questions, and decided to keep an eye on it and see what happens.
Thus began the journey of not wearing it for five and a half weeks, which was my decision. I finally put it back on Wednesday afternoon, April 16, as my boyfriend’s parents came up to visit. It was my first time meeting them, and I wanted to be sure I could hear them. By the time we got to Friday night, my ear was all red again, sore, and irritated. During the break with the CI, my ear felt much better, and wasn’t sore.
This is why I think there’s something with the processor/batteries that is causing me to have a reaction to the materials used (I suspect the paint). I’m back to wearing it off and on (depending on my mood) and what my day is going to be like.
My options at this point are to clean it with a alcohol wipe, put moleskin on it/behind my ear, and recently, somebody recommended clear nail polish. I’m a bit iffy about adding more chemicals or materials to the CI, as it’s heavy enough as it is, and I don’t want to void any warranties by modifying it. I want to wear it as it is. I haven’t had problems with the hearing aids, why am I having problems with the CI? That’s what I don’t understand.
I’m sitting here at work right now, going through photos from this week’s photo shoots. I feel this beeping on the side of my head, on the CI side (I don’t have it on, and I haven’t worn it for about 3 weeks now), and I look up, confused at this noise which I don’t recognize, coming from all the way across the lab.
“Amy,” I say to my coworker sitting next to me, “it sounds like an alarm is going off.”
“Yeah, Kurt’s scanning the control strips.”
Certainly was odd for me, because I couldn’t hear it in my left ear, even though that’s the only ear I’ve been listening with for the last three weeks, through my hearing aid. Yet, the sound feels like it’s coming in through my right CI ear, resonating on the right side of my head.
An update later on why I haven’t worn my CI for the last three weeks. I should get back and start wearing it, but at this point, I feel like why. Why bother?
The last few months or so, I’ve gotten to the point where I sometimes wonder why I even got the CI in the first place. Catherine told me that one of her other patients called it the post-CI high.
Again, it’s not a matter of which method one uses, but the fact that early exposure to language is the key. I’ve been asked whether having the cochlear implant or not will make a deaf child more “hearing”, and whether a parent should choose the oral only or sign only or both methods.
But here’s a story that may be of interest for that argument…it doesn’t matter, as long as you get the information out there to the child. Read out loud, show words, and sign…as long as the language is being shared, the better chance of success.
I got lucky though. My mom started off with the Auditory-Verbal method, and one day, I said to her, “Mommy, I can’t hear you. I can’t see your lips.” That’s when she realized that I had taught myself, at the age of 2, to read lips. That’s when she switched to the Auditory-Oral method.
Even during that, I was read to and read along with family members from an early age, and a love of books in the family helped me perform at above-grade level in English and Reading.
I didn’t get exposed to sign language on a regular basis until 6th grade, formally learning the language at 17 years old.
But while there are success stories, there are also stories of failure out there. Parents have picked one method, only to have it fail, and the child loses ground in language. That’s one of the risks that my mom took, and it paid off. Same thing with getting a cochlear implant, you don’t know until you try. There was a girl I went to JWPOSD with, whose parents took the same approach with her as mine did, but it just wasn’t working for her. I don’t know what’s happened to her since then.
This is why I believe that getting the information to the child using all available methods as early as possible, regardless of hearing ability, is the best way to go. I think it would be beautiful to engage as many of the senses one can.
Baby’s Got Book! Tot Can Read
An amazing 17-month-old girl rekindles the nature-versus-nurture debate
By Mike Celizic
updated 55 minutes ago
Elizabeth Barrett is to all appearances your standard 17-month-old girl, complete with wisps of gossamer hair so blond it’s almost white and the unsteady gait that is the definition of a toddler. As her parents and two other adults talk earnestly around her, she paws through a couple of large-format children’s books on a table, blissfully unaware of the conversation around her.
Then TODAY’s Ann Curry holds up a sheet of paper with the word “HAPPY” printed in big, block letters and asks Elizabeth to read it.
“Hap-py,” Elizabeth chirps without hesitation, enunciating each syllable in a bright little voice.
Curry holds up another sheet of paper.
“Zip-per,” Elizabeth says.
Curry goes on flashing words, none of which Elizabeth has been coached on, and the remarkable little girl reads them.
“Kang-a-roo.” “Flow-er.” “Nice to meet you.” “Take a bath.” “Good morning, Ann.”
This happened on the TODAY show Monday in New York. Elizabeth wasn’t showing off or performing, this sort of thing being old hat to her. Way back when she was 13 months old, she read her first word, says her mother, Katy Barrett of Lubbock, Texas.
The word was “corn,” and little Elizabeth read it on a cereal box at the supermarket. There was no picture of corn to give her a clue. She just pointed at the word and read it. She also signed the word in sign language.
Katy Barrett and her husband, Michael, are speech pathologists, and when Elizabeth was born, they said on Monday, they started teaching her sign language along with spoken language. They read to her often, and her favorite television program — the only one her parents let her watch — was a PBS show called “Signing Times,” which teaches kids sign language.
Yet, as much as her parents worked to stimulate her language skills, they were as astonished as anyone when she started picking out words and reading them, especially as they never attempted to teach her to read.
“We tried to do everything we could to try to stimulate her language growth,” Michael Barrett told Curry. “From day one Katy has been using sign language with her. We think anything relating to language is a good thing to nurture.”
Even so, he went on, that wouldn’t be enough to teach Elizabeth to read. “I think there’s more to it than that,” he said. “I think she has some special abilities that have just been a fortunate thing she’s been born with.”
“This is something we never expected,” added his wife. “We didn’t teach her this. We don’t sit down and drill her on words. She loves reading books.”
Nature or nurture?
The Barretts were joined by Susan Schwartz, a clinical director at the Institute for Learning and Academic Achievement at the New York University Child Study Center, who agreed that Elizabeth’s extraordinary abilities have a lot to do with genetics.
“I think she has extremely well-developed visual perception and visual memory,” Schwartz said. “I think that Katy and Michael have done a great job giving her a lot of multisensory input, so she sees things, she’s talking about them, she is signing and she is using all of those skills together.”
The Barretts said that as amazing as their daughter’s skills are, they’re also a little frightening.
“The fact that she could do it was scary to us at first,” said Michael Barrett.
“Even though this is an amazing skill, it makes her different, and it’s not easy to be different. So that worries me,” added Katy Barrett.
In fact, they said, the reason they called their local NBC affiliate with their daughter’s story was because they wanted to reach out to experts who could help them deal with Elizabeth’s abilities.
On Monday, they were surprised to discover that Elizabeth had talents they weren’t aware of. While Schwartz was talking, Curry wrote a word in script on the back of a sheet of paper, then showed it to Elizabeth.
“That’s cursive,” Michael Barrett started to say.
“Ba-by,” Elizabeth interrupted.
“She reads cursive?” Curry exclaimed.
Replied Katy Barrett, “We didn’t know that.”
From the Advanced Bionics Patient Identification Card
MEDICAL: Please contact Advanced Bionics before conducting any medical procedures including, but not limited to: MRI, diathermy, electrosurgery, ECT, Ionizing Radiation Therapy, Cobalt Treatment, and Linear Acceleration.
Growing up in Arizona, and being exposed to the sun as much as I have, it is imperative for me to keep track of my skin.
I had new moles on my skin, so I went to the dermatologist on Wednesday. She removed one from my shoulder, using electrocautery. I was a bit wary when she was doing that, because I realized that was one of the things that I couldn’t do with the cochlear implant.
My second appointment was on Friday, and I asked her if she was using electrosurgery for these procedures. When she said yes, I asked her to please call Advanced Bionics just to make sure that it would be safe.
She was hesitant at first, and decided not to do the procedure, and wanted me to come back at a different date. I was on spring break, and that was my last day at home, so I asked her to please call anyway. She sent the nurse to call them, while she removed one, and used a liquid solution instead of electrocauterization to stop the bleeding. The nurse came back and told her that they wanted to talk to her.
When I found out what Advanced Bionics had to say, I was grateful that I was pushy in asking her to please call anyway.
I found out that if she had gone ahead with using electrocautery, we could have been electrocuted or gotten an electrical burn. In order to do electrosurgical procedures above the neck, we either needed to have a grounded pad on the floor or placed on me, or the wires needed to be grounded.
It was a good reminder to me to be proactive with my doctors when discussing medical procedures, post-cochlear implant.