Bionic Ear Blog

First, let me tell you about the T feature on hearing aids and cochlear implants. It’s one of the coolest features ever. When you switch from M (microphone) to T (telecoil), you hear nothing except what comes through the phone receiver or headphones. So it’s great for listening to music while on a walk — no noise from passing cars.

I head to the library to pick up my daughter’s reserved book. Not even halfway there, I start hearing static noises — but not quite the same thing as humming when the implant is on telecoil and near electronics. More crackling. Awful.

I looked at the iPod and my cochlear implant. Nothing was wrong. So I took out my BlackBerry and turned on its music (no headphones needed for this). It wasn’t clear if I had the same problem or not. So I played with all the devices for part of the way growing frustrated.

I gave up on the BlackBerry and put it away. Entering the library, I paused the music. I found the reserved book and went to the self-check out counter. A librarian came toward me telling me “Turn the music down.”

Blush x 10.

“But I turned off the music.” I looked at the iPod and it was off, so I switched my implant back to M and heard the music still going.

The BlackBerry. Blush x 100. Scramble, scramble. I never play music on the BlackBerry, but thought I closed the media application. It felt like 10 minutes passed before I find my way back to the music and turn it off. I thought I noticed people looking at me when I entered the library and they probably did as the music was loud.

Not. Going. Back. Soon.

Luckily, I can drop off books in the drop off drive-through. That’s where Pride and Prejudice make its way back when daughter finishes it.

Posted by at 10:14 AM | Permalink | Comments (3)

I haven’t blogged as much lately as so many things hit at once.

My kid with the challenges was having a lot of them and at the same time a herniated disc and inflamed piriformis muscle hit. The pain prevented me from walking, so I had a series of three epidural steroid injections. The first one led to the rare spinal headache leading to the rarer epidural patch procedure to stop the spinal headache.

Within a week of the last injection, a tennis match led to skier’s thumb injury. My son — with the challenges — smashed his pinkie finger just days before I hurt my thumb. His hand swelled and looked bruised. He was fine withing a few days.

Because of his experience, I figured after a few days, my thumb would be all right as it was just bruised and swollen. Followed the RICE procedure (rest, ice, compression and elevation). Five days after, it was still swollen.

I surfed to reputable medical sites and researched my injury (before I found out it was called skier’s thumb, so it was hard to figure out what terms to use). Everything pointed to go to the ER because untreated, the thumb could have permanent damage. I’m a full-time writer and I can’t have that!

X-ray showed no broken bones, but doctor was concerned about ligament (ulnar collateral ligament (UCL)). The hand doctor called for an MRI. Oh, wait. I can’t have an MRI because my cochlear implant involves a magnet in my head.

So, the doctor called for a CT scan and the radiologist had never done one on a hand before. To make matters worse, the CT scan couldn’t get a clear picture of the ligament making it a waste of time and further delaying the hand’s repair (time was of essence).

Just a couple days short of four weeks after the injury (recommendation is to repair UCL within four weeks), I had surgery. Had it been a partial tear, we could’ve avoided surgery. But since the CT scan was useless, the doctor had to dive in.

Good thing it was a ruptured ligament making the surgery worth it. Bad thing it was a ruptured ligament making it difficult for me to type (imagine how long it took to do this and other long posts). This surgery, the three ESIs and my son’s unexpected medical bills are making finances a little more challenging made worse because of this time of the year. Life. Is. A. Gift.

My hand sits in a big bulky splint rendering my thumb and wrist immobile. While I can type with nine fingers, the injured hand has to turn to be able to type and it causes pain.

Despite all this… several stories and a book inspired me as getting down on yourself does no one good. Besides, I’m alive, aren’t I? Having lost my father almost one year ago makes me appreciate that more. The rest of the story is over at my writing business blog.

P.S. One of those stories comes from Karen of Deaf Mom World. I wondered how much more I could’ve accomplished had I been born with hearing. But my wise mother pointed out that being deaf could’ve motivated me to be much more than being hearing. After all, much of my life has been about showing people I can do anything just as well as they could … or better (except hear and sing).

P.P.S. Lesson learned: Fall with hands flat instead of fingers and thumb trying to catch my fall.

P.P.P.S. More articles about thumb injury that you’d never ask unless it happens to you. Knock wood:

• eMedicine Health on skier’s thumb

• WebMD finger injuries

• Better Braces on ulnar collateral ligament injuries to the thumb

Posted by at 9:01 AM | Permalink | Comments (4)

Unbelievable! I’m trying to contain myself as much as possible. I’m on my second coil and cable (this part connects the processor to the magnet — it’s the round thing everyone sees attached to the head) and I haven’t had this processor for that long. I can’t recall when I changed out the first to the second, but now both cable insulations ripped.

I went to Cochlear to order another one. TWO HUNDRED AND NINETY DOLLARS! $290. Three figures! For a freaking cable and connector? Calm down… calm down.

I emailed Cochlear and told them I expect a replacement at no charge. Two broken ones and I think I may have had this processor about a year? For $290, I expect them to last at least five years between them.

No, I don’t throw these around and abuse them. I gently pull off the magnet by gripping the round part not the cable.

$290. Unbelievable.

Posted by at 7:40 AM | Permalink | Comments (6)

By miracle, I decided to clean out my office closet where I found Cochlear stuff. I had forgotten my new CI came with rechargeable batteries (you have the option of using disposables and rechargeables). The nice thing about rechargeables is that you take the whole thing out and replace it with another. This as opposed to removing the little batteries from their slots, dropping batteries, and not getting them out of their slots without a small instrument (when the finger nails aren’t long enough).

Since I’m low on disposable batteries, I decided to look up the cost of the rechargeables as having two isn’t enough. I keep getting stuck at tennis without a backup since I don’t want to lose my backup — yet I can carry disposables in my bag and in my purse without remembering to take them out to move them into whatever I’m currently using.

It’s $195 for a rechargeable battery! They last about a year. Looked up the cost of the disposables and paid about $150 with shipping for 300 pieces (the CI uses three batteries and each wear lasts about three days = almost a year’s worth of batteries). The rechargeables don’t last as long as the disposables (more like two days). For a $50 difference, I guess I’ll have to continue polluting with disposables.

I’d need to order at least two rechargeables to be able to ensure I always have a backup with me and $400 is a bit much.

Posted by at 7:27 AM | Permalink | Comments (5)

Originally, after having the cochlear implant, I used an accessory that plugged directly into the implant and the computer or MP3 player to listen to music. But it didn’t take long before I tired of the accessory since it required taking off the implant, pulling out a “stopper” and plugging in the audio. The stopper could get lost as that thing was tiny. The accessory also annoyed the heck out of me because the cord would pull on my implant even when I made a makeshift clip to keep it from slipping and pulling.

I went back to the headphone. It was hard to find headphones these days when earbuds are everywhere, which don’t work for hearing aid or cochlear implant wearers. I had a decent headphone, but it was a pain to have the headphone over my hear on top of my cochlear implant. When I went outside, it meant adding sunglasses as a third item to hang on the poor abused ear.

By chance, I came across an accessory that works with my cochlear implant. Instead of hanging over and squishing my ear, it had a lightweight hook-shaped coupling that I can barely feel when tucking it under my cochlear implant. Switch the cochlear implant to T for telephone mode and it worked beautifully.

The Music-Link audio coupling works with MP3 players, DVD players TV and anything with a standard 3.5 mm stereo plug. Sensorcom offers mono (one hearing device) and binaural (dual hearing devices) versions. Since Sensorcom is a UK-based company, US-based SoundBytes sells the same mono and binaural headsets.

The headset works with T-coil compatible devices. So anything with T-coil (telephone mode as I call it) works with the headset — I believe all hearing aids and cochlear implants come with them nowadays. The accessory is supposed to cut out static (background noises that sound like humming because you’re near electronics). I still experienced it, but maybe not as bad.

Posted by at 9:01 AM | Permalink | Comments (2)

When a person receives a cochlear implant, that’s not the end of it. Getting the cochlear implant inserted is the easy part. The hard part comes in Rehabilitation therapy, which includes speech and listening therapy tailored based on the patient’s background.

A cochlear implant won’t magically help a person hear on the phone and hear the words on the radio. That might happen for those who postlingually deaf (deaf after learning speech/language). Anyone considering a cochlear implant needs to be prepared to invest time and money (some insurance companies pay for all or some of the therapy) into therapy to make the most of the cochlear implant.

Continue reading "Rehabilitation after the Cochlear Implant" »

Posted by at 9:00 AM | Permalink | Comments (2)

They came again! Jehovah’s Witnesses came to my door and it was obvious they came to me because they were signing to each other. I have a “No soliciting” sign right by the doorbell, but they probably don’t see themselves as solicitors.

I can’t find a sign or information that takes care of the religious groups. I’m quite happy with my religion and have a relationship with G-d. I don’t need complete strangers talking to me about it and I don’t have time to shoo them away.

I love the funny sign here, but it’s too long and I doubt they’ll read it. A comment in the entry refers to yard signs, but I think the sign by the doorbell is enough as I hardly ever get solicitors anymore since posting it. Besides, I already have two signs in my yard and they’re more deserving of the space (kids’ sports).

Here’s a funny sign I found on Amazon. Perhaps, I need to do what Grant suggested. Post another sign below that says, “No religious visits.” I like that.

Posted by at 5:10 PM | Permalink | Comments (20)

A woman with a cochlear implant is working with Samsung to create a wireless MP3 system for the deaf. I have Cochlear’s Freedom and it comes with an attachment to attach the implant to a player or the computer for listening to music. But I don’t use it because it drove me nuts having the cord pulling and besides, headphones work fine.

I have two headphones: one wireless and one wired. I wear the wireless ones upside down because they fit better that way. My regular headphones look like the wireless ones minus the rubber piece that holds the headphones in place on the ears. The piece is useless to me.

I can’t imagine an MP3 player for the deaf working any better than any other MP3 player. Maybe it will work better for those who can talk on the phone. For me, I can’t tell the difference. Heck, I can’t tell the bad singers from the normal singers on American Idol.

Posted by at 9:08 AM | Permalink | Comments (4)

HearingLoss Association of America reports the FCC has approved the use of the telecommunications relay fund (TRS) to reimburse the Internet-enabled captioned telephone. Here is the FCC’s news released on the topic [pdf file].

Not sure how it works yet. I’m investigating.

Posted by at 7:31 AM | Permalink | Comments (0)

Recently had a couple of funny incidences with the implant. I was changing out the batteries and thought I dropped one. I looked all over the floor for it and it refused to be found. I put all three batteries in and was about to put the implant back on when I saw a battery stuck on the magnet piece.

While playing tennis, I take off the implant to dry my head and the implant with a towel. I accidentally knocked off the implant and freaked because I was standing next to the water cooler and the trash. It wasn’t on the ground, so I got scared that it fell into the bin with the cups and some still had water in them.

The tennis instructor was talking to me and I was losing my mind trying to pay attention to him and find the implant. Finally, I said “I dropped the implant and can’t find it.” Someone pointed to the metal cup holder where the implant appeared. Talk about relief!

Posted by at 7:28 AM | Permalink | Comments (1)

One major improvement that comes with a cochlear implant is no more squealing or whistling. If I was about to hug someone, I got nervous because I feared my hearing aid would squeal. It happened a few times and made me uncomfortable or embarrassed depending on who the other person was. The cochlear implant doesn’t squeal. The only time I get feedback with the implant is when using certain cell phones. The sound is more like static or the noise you hear when a modem makes in connecting right after the tone.

I could hear the squealing most of the time and it wasn’t easy to adjust the hearing aid to make it stop. I either had to lower the volume or jiggle the ear mold until I heard nothing.

Continue reading "Hearing Aid and Cochlear Implant Feedback" »

Posted by at 9:55 AM | Permalink | Comments (2)

For over a week, my head has been hurting where my implant lives. I couldn’t understand why this was happening as I’ve had the implant for three years. Was my head not borg? Could it actually resist assimilation? I had been having a lot of headaches lately (not just around the implant), so I didn’t realize that the implanted area was also sore until I finally had a few headache-free days.

Yesterday, while driving, it dawned on me. I noticed the middle part of the external implant device (the magnet) had a deep gap. The magnet is adjustable. The deeper it goes, the harder it attaches to the implant. I guess over time, it shifted little by little as I took the implant off when it finally got too attached and hurt. Now it’s back where it needs to be — maybe a little tighter as I have thick curly hair, making it a challenge to get the implant attached.

Posted by at 6:13 AM | Permalink | Comments (1)

My speech therapist has been helping me with Rs. They’re difficult to say. Most of the time, my Rs come out like Ws. When I try to form the Rs based on the therapist’s explanations, my mouth feels weird and stupid. That’s one sound I won’t practice in front of people. It’s hard enough doing it in front of her.

When I made a correct R, I put it together with the rest of the word. “R” “abbit.” Sounds like two words instead of one. It’s challenging to get them to flow together while making the R correctly.

Aw, heck, I should make it easier on me and avoid as many words with R as possible. Unfortunately, that’s a difficult task. Otherwise, why would Wheel of Fortune give its contestants the letter R in the final round (along with S, T, L, N, and E)? The show surprises us with many words and phrases that use few of the popular letters. Maybe I need to study up on those for my “Duck the R” project.

It stinks to have an R in my name. I rarely pronounce my name correctly when introducing myself to others. This happened last Friday at a lovely dinner party and it took a friend to help the hostess learn my name. It would be easier to say “Meryl” if I can skip saying my last name. But then people might think I have an ego thinking I’m a hot shot star that goes by one name.

Posted by at 11:00 AM | Permalink

Cochlear Implants has comprehensive on cochlear implants including an excellent movie that shows how the ear works, how hearing loss happens, and how the device works.

Posted by at 8:11 AM | Permalink

Boing Boing: Deaf geek mods implant-firmware so he can enjoy music again based on Wired story. It’s wonderful that Michael Chorost. has had great success with his implant. I continue to go to speech and listening therapy every Thursday and listen to 1080 AM radio (talk radio) and catch words and phrases here and there. Not always enough to figure out the gist of the conversation. Boy, they sure say phone numbers a lot on that station! [ Link: Bryan ]

Update: This is the guy who wrote Rebuilt. Sure, I’d like to read it — as a book reviewer and abstract writer, it’ll be a while before I get to it.

Posted by at 8:51 AM | Permalink | Comments (1)

According to this Boston Globe article, children have two choices. Play on the slide without sound or join recess with sound, but no slides. I guess that’s one benefit of growing up with a hearing aid and box. As a child, I slid my heart as I was lousy on the monkey bars.

Thank goodness static touch from other people doesn’t mess with the implant. Been getting serious shocks lately as the weather turns colder.

Posted by at 7:46 AM | Permalink

My speech therapist recommended I listen to a local radio station as it has the weather report every ten minutes as I know what they’re talking about and have a better chance of recognizing words. I try to listen to everything, not just the radio. Once when Paul was near a radio, I asked him to listen to it so I could confirm whether or not I correctly heard certain words.

After we stopped listening, Paul said, “I’m telling your mom on you.”

Of course, I am surprised and confused. I didn’t recall doing anything to get myself in trouble. “What? Why? What did I do?” I asked.

He said, “I’m telling her that you were listening to Rush Limbaugh.”

Unrelated to the joke and interesting coincidence — Limbaugh had a cochlear implant.

Posted by at 9:31 AM | Permalink | Comments (1)

Michael Chorost wrote Rebuilt: How Becoming Part Computer Made Me More Human. It’s the story of him losing is hearing and regaining it with a CI.

I admire people like him because it’s harder to have hearing and then lose it than it is to be born without it. When you’re born without hearing, you don’t know what you’re missing.

Posted by at 7:48 AM | Permalink

Last week’s therapy included reading a page of sentences, some of which caused my tongue to twist. The fun part was the listening that we did for the latter half of the session. I met the Lugnuts, a family with seven kids. They liked to watch TV all day long, shop at the mail (all of them together!), and sing made up songs. First, I listened to the whole story with the text in front of me. No problem.

Then the therapist played selections out of order and I had to figure out what was said. I started off strong, but then began faltering when we switched from Real Player to Windows Player. Odd, eh? I think the volume changed. Not sure.

We also found another difficult area - words that end in -sked such as asked, masked, and tasked. I had no idea that the -ed was pronounced with a “t” sound. It’s hard to say “skt” as I pause between “k” and “t.”

I’ve been catching myself “hearing” a few words at times. For instance, a friend of mine called and left a message for my son since our sons were scheduled to play together. When the phone rang, I checked caller ID and saw it was her. I listened and heard the first two sentences which mentioned my son’s name and that she would pick him up in 30 minutes. Everything after that was a audio blur. (Found out it that her phone was not charged, so she would not be able to send me a text message as originally planned).

Posted by at 8:14 AM | Permalink

Forbes.com reports that researchers have developed a safer and less invasive method for doing implant surgery. The procedure doesn’t call for a large scalp ear flap like the current approach does. Another advantage is that the implant is turned on sooner as there is less trauma from the surgery.

I wish I knew what from the surgery caused my severe vertigo. This doesn’t happen to everyone and it certainly scares me away from having a second implant.

Posted by at 8:23 AM | Permalink | Comments (1)

My teeth are buzzing after working for an hour on the “Z” sound in the middle and end of words. I had no idea, after all these years, that the letter “S” sounds like a “Z” in a lot of instances. Has, is, eyes, bills, visitors, figures, and so on. I knew words like was, Thursday, and Louisiana had the “Z” sound. “Is” is a hard habit to break.

I’m also struggling with “R” as mine comes out nasally. I feel silly trying to practice “R” while putting my fingers on my nose (note I said “on” not “in!”) to see whether or not it’s coming through nasally. I can “R” correctly when I start by making “L” sound with my tongue by my front teeth and then slowly move the tongue further back. But to say a word? Forget it.

The therapist gave me practice sheets to do at home and my teeth are gonna tickle for days as I keep practicing (“days” and “as” are also “Z” sounds). I hope I make progress soon.

Posted by at 8:44 AM | Permalink | Comments (1)

Frustrated with the lack of progress with my cochlear implant, I contacted the person who has been working with me on the MAPping for advice. She responded with two suggestions:

1. Come in for a re-MAPping session
2. Speech and listening therapy

She said she can provide recommendations for therapists and I requested them. One was in Arlington, so that was a quick rule out. I took a chance on one of them and we hit it off in our first session. It turned out the therapist’s husband is from the same small town where Paul (my husband) grew up. Her husband’s father and Paul’s father knew each other as both retired from the same company. Too weird, eh?

That’s not the end of it. The therapist grew up in a small town outside of Wichita Falls — where my mother grew up. They didn’t know each other as my mom already moved to Fort Worth before the therapist was born.

Anyway, in the first session, she asked me to share my background (also an opportunity to see how I talk normally) and then she had me read six sentences while she marked my problem spots. Wasn’t surprised that “s” or “st” made the list. I always thought that making a hard “s” (with lots of air) would sound funny. Then I listened to a CD with the script in front of me. Followed along without a problem. I never had trouble following audio when I have the transcript… it’s not having a script that’s the problem.

Posted by at 11:51 AM | Permalink

Last Sunday night, I had a little, but meaningful hearing moment. I was working in my office and I hear, “Mom! Mom!”

I had to listen for a minute because sometimes something else sounds like “Mom.” I responded, “Yes?”

“Can you come up here?” the voice said.

“You want me to come upstairs?” I said.

“Yes!”

When I got upstairs, my older son was waiting for me. I asked him if he was the one who called. It was. Wish I could get more of these moments. It’s a tiny step forward, but progress nonetheless.

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Posted by at 6:46 AM | Permalink

Whenever I am near water while wearing my hearing aids (and now implant) — pools, showers, bathtubs — I get nervous as it doesn’t feel natural to have it on because water and hearing aids don’t mix. That’s why you’ll see me using an umbrella when it’s only sprinkling outside. I don’t want to get shocked :)

I never wore my hearing aids when I worked out because I didn’t want to risk getting it wet from a sweaty workout. However, I always wore them to sports practices and games. Long after I was no longer playing team sports, an audiologist told me about a hearing aid cover that protects the device. But it’s a pain to put it on.

Whenever I rode roller coasters… hearing aids came out then, too. When I went on the shock wave (from Six Flags over Texas and it goes upside down), my hearing aids came out, but the ear molds prevented them from completely falling out. So from then on, I took no chances.

Nucleus has announced the Nucleus Freedom, a water resistant implant! However, upon close reading, it sounds like you still can’t swim or bathe with it on. It’s made to handle mild water situations like sweat, rain, and sprinklers rather than complete submerging.

This is an improvement, but I would not want to wear it when I give my kids a bath since it could fall in. I know there are attachments that help the implant stay on better, but they’re a pain.

Posted by at 7:01 AM | Permalink

I mentioned before I had been looking for audio of children’s books and I didn’t want Winnie the Pooh or Disney. BTW, John Fielder, the voice of Piglet passed away. Anyway, I got Dr. Seuss CDs: Cat in the Hat and Green Eggs and Ham.

I figured out many of the phrases from reading the books over and over to my three kids especially Hop on Pop, One Fish Two Fish Red Fish Blue Fish, and Green Eggs and Ham. They’re good CDs. My only qualm is the CD itself and the lack of a front cover. Neither has a cover! But they do have a back cover, go figure. Both have two CDs in the set and it took me a while to figure out how to reach the second CD. It is not your typical two-CD case.

I also have the audio Free the Beagle, a book I just finished reading this weekend. It’s not a children’s book, but it’s an easy-reading and I am hoping it will help. The book comes with the CD. Now there are three books in the series and the author has graciously made all of the audio from the three books available for free downloading. So I got those, too.

Posted by at 6:09 AM | Permalink

Not again. Last week, I reported a feller’s cochlear implant was stolen. This time, a woman lost hers while roller skating. It’s scary because these things do fall off easily. If I pull my hair back or up, it makes it harder to connect the magnet as I have thick hair. With hearing aids, you have the awful ear molds to add security. But ear molds hurt and require new ones made every six months or so. Good and a bad to everything, eh?

It’s tempting to consider having a second implant put in so I would get another device and back up. But I don’t know that I would want to go through that again.

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Posted by at 6:01 AM | Permalink

Ah… the controversy’s flame continues burning strong… The Toledo Blade reports, “The family stopped at a fast-food restaurant and encountered students from a New York school for the deaf. They took one look at Nino’s [cochlear] implant and started signing feverishly with the help of their interpreter. They assailed Mrs. Russo for choosing the implant for her son. But she was having difficulty conversing with them because of the signing.”

Again, I say, it’s the person’s choice as the mother says, “At this point he has no desire to learn [ASL].” I understand the deaf culture’s concern the culture will vanish as every child gets an implant. The majority of the world is hearing and the ability to communicate makes life easier. When a person who doesn’t know English and moves to the US, he will struggle until he has some command of the language. The same applies for the deaf.

The line about “People with implants usually experience less fatigue,” is true. When I attended a few conferences, I barely made it through the last day or so. It was then I learned that lipreading and communicating the way I do is more tiring than for the average person. [Resource: Eddie ]

Posted by at 6:15 AM | Permalink

Just got the word from DeafNetwork that NAD has a Cochlear Implants FAQ on its site.

Posted by at 7:12 PM | Permalink

Implant devices can give ‘perception’ of hearing to deaf, severely hearing-impaired clearly explains how implants work and what people implanted with these devices hear. Many ask me how I am doing with the implant. I know they’re interested and all, but it just not going to change for a long, long time. I have 30 years of a lipreading habit to change. An implant doesn’t make words come through much clearer than my hearing aids.

Posted by at 1:01 PM | Permalink | Comments (3)

Audio demos for speech perception demonstration of what a CI sounds like: http://www.hei.org/research/depts/aip/audiodemos.htm

Dictionary of Mapping Terms provides words to use when describing the sound heard to the audiologist: http://www.geocities.com/Heartland/Meadows/4602/mapping.html

Posted by at 12:06 PM | Permalink

Here are resources for practicing listening skills. The one I have been using most is Randall’s ESL Cyber Listening Labs. If I am missing anything, add it to the comments or contact me. You can also search for more read aloud stories, read along stories, and listening practice.

Podcasting’s popularity has led to a boom in free audio files for downloading and syndicating. However, these are usually home-produced and may not be the best quality and speakers may talk too fast. If a specific subject or hobby interests you, then it can be a way to practicing listening to something you love and recognizing terms. Robin Good’s Lastest News has a long list of places for finding and submitting podcasts.

Continue reading "Auditory Training Resources and Sites" »

Posted by at 9:12 AM | Permalink

Don’t know why I didn’t think to do this before as I’ve known about the Listening Labs site for a long time. It has many simple conversations between two people rated as easy, medium, and hard. Each conversation has audio, a script, and a quiz. This is the process I’ve been following:

1. Listen to audio with no help.
2. Read quiz while listening to audio, which provides conversation cues.
3. Answer quiz.
4. Read script while listening to audio.
5. Listen to another audio.
6. Repeat steps 1 - 4 for a couple of more scenarios.
7. Listen to previously reviewed audio to see how much I remember / grasp.

It’s a simple process taking as little as five minutes making it possible for me to fit it into my overwhelming schedule. It also gives me a nice break from computer work when my eyes get tired. The best part is when I do catch words and sometimes sentences in the first step. Sometimes, however, when I think I catch a phrase isn’t so. For example, I thought I heard, “watch TV and talking on the cell phone.”

It was actually, “watch TV and talk until 10 o’clock.” I listened to it again and it still sounds like ‘cell phone’ even knowing it’s ‘10 o’clock.’

The script with a 5-year-old girl gave me a headache. Her voice sounded whiny. Hmm, I have a 5-year-old, could that be why I’m dizzy all the time? :)

Posted by at 5:00 PM | Permalink

I went for a remapping last Monday and the audiologist also did testing. The mapping didn’t change much, which didn’t surprise me as I didn’t feel a need for a mapping. But I had not been in for an appointment since October, so I thought it was time.

She did two tests. First, I listened for a sound and raised my hand each time I heard it. Second, I listened to a tape of a man’s voice saying sentences and repeated as much as I could or gave the more common answer, “I don’t know.”

The hearing test took me above the speech banana curve, which is the shaded areas on the audiogram that approximately defines where typical speech sounds occur. My hearing aids were on the lower end or below the speech banana and in a couple of places, it was non-existent (I didn’t hear anything at all.). In other words, I do hear more.

As for the sentences part, I did manage to catch a couple of whole sentences including, “The tree was moving fast.” Obviously, I quickly corrected myself knowing trees don’t move except in Lord of the Rings, but they’re very slow in the movie. I figured it out and changed “tree” to “train.” On a couple of other sentences, I caught a word or two, got a word or two completely wrong, or just had no clue.

Pam (the audiologist) said it is not a surprise I have shown little progress in the past year because I benefitted highly from my hearing aids. People in my situation take much longer to reap the rewards of the implant. Still, it’s hard to know what to tell folks who nicely ask about my progress.

I’m glad I went. It was probably the closest I’ve come to a step forward in a long time. The audiologist made a suggestion, and I agree with her, to listen to speech without lip-reading at least once a week. I do try to move my eyes away from a speaker (when it is not rude or urgent) to see how much I would catch. Relying on visual cues makes it difficult for my hearing to learn speech even though I try hard to listen as I lip-read. I just have to take the training wheels off and go.

Posted by at 12:28 PM | Permalink

I have been looking around for audio files of children’s books that I like reading to my kids. All I can find are Winnie the Pooh, Disney, boring stuff. Nothing like Goodnight Moon, Catch the Ball, Hop on Pop. Yes, simple books is where I need to begin.

I know some are available on audio cassette. If I am going to shell out money, I want it available on CD or mp3 format so I can listen to it in the car, at work, at home, wherever. So the solution. My family will read the books and we’ll record them. I know most of the words to these books, therefore I can listen to them while I work and not have the book in front of me.

I am not in the position where I can sit down, listen, and read all at the same time. No time. Three kids and I’m supporting the family since no one can see what a good employee my husband would make.

Posted by at 5:26 PM | Permalink

La Crosse Tribune reports on a seventh grader who plays the violin and is hearing better since receiving the implant two years ago.

It slipped my mind that I played two musical instruments. I took piano lessons around third grade since I was the kind of kid who tried things. I think I took lessons for about two years and was a typical kid in that I never practiced at home. For many years, however, I could still remember how to play Yankee Doodle from memory as that is what I played in the recital.

In sixth grade, I signed up to play the clarinet and also did that for two years. Don't know why I went beyond one year. Just wasn't my thing. But I still remember the best day when I played a short song perfectly and earned first chair for the first and only time in my life. The class applauded. It was a small class. Originally, I was in the honors classed, but requested to move since I couldn't keep up. Thanks, Mr. Matney (band) and Mrs. Guinn (piano) for working with me and having patience.

Posted by at 1:14 PM | Permalink

I am sure the big supporters of the Deaf culture will be thrilled with this post, but I wouldn't get too thrilled as I was perfectly fine with my digital hearing aids and it is a frustrating time for me. I need to give the whole CI business more time.

I reported the processor broke. It would not turn on at all even though we put fresh batteries in it. Well, we sent it back to the audiologist who said it turns on. But I swear there was NOTHING on the screen and we tried for a long time to wake it up. The processor is taunting me. Making me look bad. Paul was with me. He can confirm I wasn't high on something when it stopped working.

Argh. That episode with the process set me off because a lot of equipment for those who are deaf or hard of hearing cost a lot of money and never last long. I've already had one cable fail. Quality is terrible. So I am thinking that the thingy in my head and other equipment are going to break and this stuff ain't cheap. Many families could not afford it. I was lucky my parents could get me new hearing aids when I needed it.

Though I can hear from more places in the house and not turn up the volume as much, I haven't gotten much benefit from the implant otherwise. It takes time especially for someone who was born without hearing. But I am just mad. It'll pass, I'm sure. Had to get that out of my system.

Posted by at 2:57 PM | Permalink

JB wrote a great note and I think he explains why it is taking me a long time to make the most of the implant.

“Most people do not realize that when you have not been able to hear, the addition of a device to assist in hearing does not give you instant understanding of what you hear. It is always a job to train the brain to assimilate words and sounds. We do not realize what a memory bank of sounds we must build to relate to our environment. It seems so inherent we do not realize what our mind has done for us.”

Right on target!

Posted by at 2:05 PM | Permalink

Not much update to the bionic ear. I've had the processor for almost six months, but of course, I mentioned I don't have time to do practice listening skills. I'm patient about the whole deal, but when you frequently get asked how the hearing is going... it feels like the progress is too slow and too little.

Since having the implant, I am learning that many people even those who've known me for a long time didn't realize how much benefit I received from the hearing aids.

Posted by at 9:57 AM | Permalink

I didn't see this one when I checked out the ASL poetry. I'm all for free speech, but the one from Michael J. Olivier is a strong misinterpretation on the reality of getting a cochlear implant. It's a scare tactic. Not reality. But anyone who lets this scares him away from surgery has clearly not done research to make a decision without having one person's opinion affecting this decision.

It's fine if Mr. Olivier feels strongly about it, but he certainly can't interpret an operation and the results unless (a) he was a doctor and (b) he had the implant himself.

Here's the translation [ Thanks, Steven ]

Hello my name is Mike Olivier. The story is called cochlear implant. The story will be told from A to Z and 1 to 10 handshape.

Putting on latex gloves. Ready? Ready? (Nodding)

A: cut
B: open
C: taking out stuff out of the ear
D: drill
E: putting array on
F: putting the wires in place
G: putting wires in the holes

He told a story (from 1 to 10) about a baby or young child after turning on CI. The child took off the CI so fast because the child hated the noise so much. Also, what surgery is not a pain in the rear? One of the surgeries I had last year was worse than the implant.

Well, guess what? Putting on contacts for the first time does not feel good either. Everything takes getting used to... braces, glasses, contacts, hearing aids, implants, ASL, Braille.

Posted by at 4:08 PM | Permalink

I've been working hard to learn all the words to three songs. Over and over and over. Amazingly enough, I'm not sick of them... yet.

Been trying to keep an eye out for an easy book on CD (so I can listen to it at work and in the car) because I don't have time to sit down with a book and follow the words. So it has to be something where I know some of the words and can practice figuring out the rest, like pieces of a puzzle.

The thing is... I'm memorizing these songs and recognizing the words based on music cues. How is that going to help me hear unfamiliar words? I can't make out the lines I don't know from a song period.

Posted by at 9:20 PM | Permalink

It looks like the surgery did added one aftereffect: inflammation in the ear. It hurts from time to time. Cochlear implant: -1, Hearing aids: 1.

The processor died. I haven't been using it because I wear the BTE (behind-the-ear), but when my music cable stopped working, I got the processor out to test which cable wasn't working (there are two parts for the BTE and the processor uses just one part). I tried switching batteries, switching battery comparments, and nothing worked.

Should I be surprised considering many of the accessibility equipment I've used over the years stopped working within a short time frame?

It's been the week from tech heck. I ran into problems with my computer as well as my new laptop, but those are fixed.

Posted by at 6:03 AM | Permalink

Claiming I listened to a song 50+ times in one week is no exaggeration. I was determined to learn it as mentioned in the previous entry, and finally did. It's a combination of memorization and music recognition that helps me follow the song. A section of the song is not covered in the lyrics that I have and I can't figure it out. Going to have Paul listen to it.

I went to a doctor today and he said that I speak a little better already. Paul and I were surprised. Paul hasn't noticed a difference and I don't hear myself speak any differently now than before the implant. It was nice that he said it, though.

Posted by at 5:23 PM | Permalink

I am hooked on a song and am trying to learn the words of it -- I only know some of the words. So, I reviewed the lyrics along with the song a dozen times.

On my way to the chiropractor yesterday, I listened to the song in the car and couldn't get more than four lines figured out. Frustrating. Why couldn't I figure out some of the words without the script?

What song? No way. I'm too embarrassed to share. One hint -- it's from a musical.

Posted by at 3:34 PM | Permalink

One useful product I got was the cable clip. It holds the cable I use for listening to music or whatever to my shirt. No more tugging at my ear or trying to make a paperclip stay in place. Although, the cord slips through at times and I have to adjust it, it is easier to deal with than a paperclip and constant tugging like pulling down a Star Trek uniform.

Posted by at 3:40 PM | Permalink

Sue wrote about auditory training (therapy). She didn't think she needed it, but found it to be extremely helpful. With the help of her therapist, she has found her weak points and is working on them. They've been able to adjust her MAPS accordingly, giving her more power in those certain frequencies.

She is not going through the implant center in Cleveland (40 miles from her house) for this. She found an audiologist/speech pathologist (PhD) that specializes in cochlear implants through her insurance company. The audiologist works out of her home and also for a local school system. Sue meets with her for one hour, one day a week. The audie has given Sue many insightful ways to practice listening on her own.

She has given me something to think about, but I honestly don't have any additional time to squeeze in for anything other than what I am doing. Let's just hope Paul gets a good job soon and then I can breathe and do this kind of stuff.

Posted by at 4:57 PM | Permalink

Sue, a fellow parent and CIer, wrote, “I received the Mic Lock from Cochlear today. Tried it out and so far so good. Everything is staying in place and it's very comfortable. I might even go outside to test it out in our 5 inches, so far, of snow (I live in Ohio). Or maybe not, I'm scared to death of it falling off and not finding it for months.”

So, I ordered the BTE Mic Lock Tubing to hold the BTE in place better. Man, I feel like a Bajoran from Star Trek Deep Space Nine. It has a cord and at the end of one side is a circle, which attaches to the bottom of the BTE. The other end hooks to the hook that rests on the top of the ear. See the photo, it's the clear plastic part. It was not bad advice -- it is good to have, but not to wear on a daily basis.

Does that look like a Bajoran earring or what? OK, so it is not silver like theirs, but it feels like one. Not long after wearing it, the tube came off (A few times!)and my ear also started to get uncomfortable. The only other option for keeping it on is to get an ear mold made. Nooooooooooooo! I've had a lifetime of torture of ear molds and don't want it!!!

Cochlear's catalog and accessories are not easy to figure out and this coming from a person who can program the VCR as well as get rid of the blinking 12:00. I tried to use the soft hook cover and it was useless... sliding around and down.

Posted by at 1:51 PM | Permalink

KXAN checks in with Hailey after One Year Of Hearing. In my day, I broke the cords on my hearing aids when I was an infant. Hailey, a CI'er, took her implant off many times a day. She was a year old when she had the implant and the first four months were rough, but it paid off.

Me, nothing exciting to report. The sound on my computer is back, so I'll go back to practice listening. My work computer has sound, but every time I sit down to play music... I saw I forgot a part I needed to listen to it with my BTE.

Posted by at 2:17 PM | Permalink

I went in for a MAPping session and walked away with a ESPrit 3G. This is the behind the ear device. In other words, no more cord to get caught on things or for baby to grab and no pager-sized device pulling down my clothes!

I'm disappointed because I wanted the silver one and got beige. Every hearing aid I've had was beige, so I'm sick of it. If you look at the photo on the page, the top part is the part of which I speak. The bottom part (you'll see a hot pink one) is interchangeable. Color may seem like a silly thing to care about, but I hated wearing my hair pulled back all these years because of the ugly beige thing. The silver would've looked sharp.

No one's fault. My audie asked what color microphone I wanted and I didn't know what she was talking about. I figured it was just a little piece. Bah. Too late to exchange.

I'm in a bad mood for other reasons, so excuse me if my excitement is contained. Next time I go in for MAPping, the audie will do a test so we can see how much my hearing has changed.

My ear has been hurting. Have a sharp throbbing pain. It comes and goes. The doctor took a look and it's an inflammation around the bone probably from the surgery. Got some anti-inflammatory for it.

Posted by at 9:24 PM | Permalink

Iowans share their opinions on cochlear implants and this opinion is reflective of the country, not just Iowa. My opinion is that the person should do what he decides is best for him.

Posted by at 4:19 PM | Permalink

NIDCD Health Information has an easy to read Q&A page explaining cochlear implants and how they work.

Posted by at 3:35 PM | Permalink

It's been quiet as there hasn't been anything to report. Don't want to bore y'all with little or no progress. There hasn't been anything new in the news with regard to CIs.

I'm getting used to it and am more comfortable with it. Some days, I get so sensitive to it and a bad headache, that I have to go back to Program 1 (softest and quietest setting). It got so bad that the phone ringing made me cringe and back to Program 1 goes the CI.

For the first time, I hooked the CI directly into the computer speaker to listen to music as loud as I wanted without disturbing anyone else. No one can hear it but me, no worries about blasting little ears. Something new here, while listening to the music, I can hear sounds around me. It's a good thing and a bad thing. It's good because I can hear my kids and when they cry. It's bad because it's more difficult to practice listening.

With my hearing aids, I put them on T (telecoil) whenever listening with earphones or making a phone call. T shuts out all sounds except for what's coming through the phone or earphones. This situation is the best way to practice auditory skills and shut out the sounds of noisy co-workers.

The other problem... cords! They're everywhere! One cord to connect the mic to the processor. Another cord to connect from the processor to the computer speaker. In the CI suitcase, I've got at least four more. One for the phone, one for to connect to a speaker microphone something or the other... I can't remember the rest. They're too long or not long enough depending on the situation.

Posted by at 5:28 PM | Permalink | Comments (1)

Apparently there are Myths and Lies about Cochlear Implants spreading. The article attempts to stop misinformation using strong tones.

My thoughts:

Lie #1: It doesn't give the whole story. The doctor did drill a hole to insert the implant. The implant is right beneath the skin behind my ear. No hole, just a small bump. But, there is indeed no hole where this bump is located.

Lie #2: It was *my* decision to have the implant done. I did my research. Yes, I talked to my family, too, because their support makes all the difference. In the end, no one made this decision by me, myself, and I. This lie didn't bother to address parents of young children who are born deaf. Of course, the parents made the decision to have the implant. The earlier, the better. If the parents wait until the child is 18 to make his own decision, the child will have missed the best window for learning to hear better and that window is opened before 18 months of age.

Lie #3: In agreement with this one. Y'all saw it took time for me to recover and recovered I did.

Lie #4: Thanks for the laugh. We are CI, you will be assimilated, resistance is futile. All your deaf are belong to us.

Lie #5: I explained this in a previous post that a person is more than welcome to use ASL. ASL is not going away especially since not everyone can be helped with a CI or even have one. Again, why do we not hear about #147;Blind Culture?”

Lie #6: True! They cost a lot of money and the health insurance companies pay for them. My company did NOT pay in full. We argued with them until we were blue in the face. It cost $200 for outpatient surgery. If I had stayed over night, it would've cost a percent of the surgery. Yes, we are on a major health plan.

Lie #7: I am a prelingual deaf adult (deaf before I learned speech) and I believe it's working for me. Still early, but it will pay off.

Lie #8: This was the myth that took me a long time to verify. Back in 1984, when we first looked into CI and it was only one channel, it definitely wasn't a good replacement for my hearing aids. Already, I've been able to hear a few things from a distance that I couldn't hear with my hearing aids. The rest will come with time as I adapt.

Lie #9: I'm not a member of the so-called deaf community. However, if I had friends who were deaf, I certainly would not abandon them. Sheesh.

Lie #10: This is overboard. We all have the right to talk about anything we choose.

Posted by at 4:47 PM | Permalink | Comments (1)

Just discovered another sound I had never heard before, the computer's fan. I heard a constant stream of a high-pitched noise and asked Paul about it. First, he said it was the ice maker. I didn't think it was that because it didn't sound like ice crashing. As soon as the sound stopped, I told Paul it stopped.

He said it was the computer fan coming on and shutting off. Wow. Two things within a couple of hours. I guess it pays to be in a quiet room when a new sound appears. When you have three kids, it drowns out any possibility of hearing new sounds since they know how to get all the attention including with their voices.

Posted by at 11:18 AM | Permalink | Comments (1)

In the discussion lists for cochlear implants, people write about what's called a “CI moment.” This is a description of a new experience in hearing with the CI.

I just had a major CI moment. I kept hearing soft rhythmic beeps. I asked Paul what it was, but he said he didn't hear anything. I moved on and went back to what I was doing. No, I still hear the sounds and asked Paul again.

“Can you hear this?” he asked.

“Yes.”

“OK, how about this?” he asked.

“No,” I replied.

“You're hearing the music from my earphones.”

Picture Meryl's mouth dropping in shock. It is soft, but amazing nonetheless. Paul is about seven feet away from me and he says the music is not loud.

Wow.

The music? Metallica's One.

After recovering from shock, I freak out. I listen to music at work with my headphones and hearing aids. The music is turned up loud so I can hear it. If I'm hearing this music that's not turned up loud, then how much of the music do my co-workers hear coming from my ear phones!? It's embarrassing based on the music I play.

Posted by at 10:23 AM | Permalink | Comments (2)

One thing I've always hated about hearing aids was the frequent battery changes. That doesn't stop with the CI. Right now, I am using two rechargeable double-AA batteries in the processor. I have to change them every day as they last about 12 hours. The disposable ones last about three days, but I hate to pile up on trash.

With hearing aids, I had to use two 675 batteries. With the CI, when I go behind-the-ear, I'll be using THREE of them.

I keep getting tangled with the cord. Either the baby grabs it or I forget that it's not a mile long. Surprised the CI makers haven't come up with wireless CI. Then again, I might pick up conversations in the neighborhood. I wouldn't want anyone to steal the bandwidth or sound, in this case. :)

Posted by at 8:42 AM | Permalink

Yesterday was the second mapping day. MAPping (Yes, MAP is all uppercase, but no one can explain it. Strange.) is the process for creating the listening program for the speech processor. The processor stores the information unique to my needs to allow me to hear.

The audiologist does the MAPping by connecting the speech processor to the computer and getting feedback from me. An optimal MAP is by determining the softest level I can hear, the most comfortable loud sound I can hear, and the pitch range for each electrode. The MAP is updated and adjusted easily as I get used to hearing sounds.

I sat there with my eyes closed because after listening to these beeps or sounds, I start thinking that I'm imagining them. That was always a problem when taking hearing tests. The audiologist (Cheryl, this time) and I walked through each electrode, which carries a different frequency or pitch, and I let her know when it gets uncomfortable. I also let her know when I heard sound.

I have four new programs on the speech processor and whew boy, they're loud. I had to adjust the sensitivity and volume, but I think I heard a few things I didn't normally hear with my hearing aids when in a different room from the sound.

When I got home and went to my room to do things, Paul came in and had me jumping out of my seat. The loudness of the sounds caught me off guard. As usual, I need to adapt to the new programming and do auditory exercises.

Posted by at 3:48 PM | Permalink | Comments (4)

Today I went back to Southwestern for physical therapy and a mapping session. The physical therapy was for the vestibular problems I've been having since the surgery (wooziness, lightheadedness, eye pain). The vertigo (room spinning) ended within a few days after surgery. It's the other stuff I've been having causing my inability to walk in a straight line. The exercises weren't fun, but they should help and I have to do them daily. They straighten out the screwy wires between the inner ear and the brain.

For instance, I stand about three feet from the wall with words on it. I have to move my head back and forth while focusing on a word. Whoo boy. Then, repeat and move head up and down. Walk and turn head side to side while walking. These may sound easy, but they're not when you're in my shoes. Heck, some probably would bother a person who is never dizzy.

I knew I was out of shape when I had to lift one foot Flamingo-style and couldn't keep my balance. I used to do this easily for over a minute before this mess started and I could not last a few seconds without holding onto something. No fair that I act like a drunk without drinking the good stuff. Seriously, please don't drive after drinking alcohol no matter how clearheaded you feel.

I had a bad night again last night, but it wasn't CI-related. I guess I deserved it for trying to treat myself to a frappe. It was the first and only cup of coffee I've had in over a month! I miss my coffee! Anyway, the problem is GERD-related and I'm trying to get an appointment with my gastro. Don't you love trying to get on a specialist's schedule? We can't even get my daughter to see a skin doctor for several months.

Posted by at 8:56 PM | Permalink

Phonak and Cochlear To Develop Hearing Systems to address an unmet medical need, where current external hearing aids, cochlear implants, and middle ear implants (MEIs) cannot provide effective benefits to patients.

A new Internet tool is available to parents to help them monitor their babies' progress in early speech development. Vocal Development has been designed to share information about early speech development and to provide examples of the speech sounds that children produce before they say words. Even if a child is hearing, it's still a good resource as it explains what to expect from an auditory standpoint.

It's similar to writing stages, which progress from early scribbling to controlled scribbling. Babies also often accomplish tasks in order. For instance, rolling over is usually before crawling which comes before walking. It is possible to reverse a task (like my husband who learned to walk before crawling thanks to his older brothers who would not let him crawl.).

Posted by at 3:39 PM | Permalink

I can't believe I never explained the cause of my hearing loss and the history. That's one of the first questions I ask others. I was born profoundly deaf 90-100 db loss, and it was nerve-related (sensineural hearing loss). My parents figured it out when I was about six months because I would not respond until they were in front of me. Since I was the youngest of three kids, they knew I should've been able to respond to sound by then.

At that time, parents had two choices: oral or sign language. They didn't want to send me to a residential school for the deaf, so they enrolled me in speech therapy, and a ton of it. I went to Easter Seals, Callier Center, TCU, elementary school speech therapist in my school, Bluebonnet Elementary School, and private speech therapy. They didn't want me to lose practice in the summer, so they took me wherever speech therapy was available.

My mom was amazing. She drove me from Fort Worth to Dallas three days a week for for several years (about 60 miles). Of course, I didn't make it easy for her as I bounced all around the station wagon at a time when children's car seats were worthless. Thankfully, nothing happened.

Anyway, I learned to speak and lipread through all this therapy, which wore me out. I did have a bad attitude at times especially when I was older (I attended until I was 11). I attended public schools except in 2nd grade, I went to a private school since my elementary school didn't have 2nd grade. To all the teachers I've had (well, most anyway), I'm thankful for what they taught me and their patience with me.

Hearing aids did work for me. I could hear running water, dog barking, distinguish male / female voices, dishwasher, etc. I usually have to be in the same room to hear these sounds. I just can't hear without lipreading. It's like someone who doesn't know the Russian language. The person can see Russian words, but can't translate it. My hearing recognizes sounds and voices, but can't understand what they say. I can talk on the phone a tiny bit -- just simple yes / no questions. No conversations.

I think that covers my hearing history. We'll see what kind of new history I make with the CI.

Posted by at 11:35 AM | Permalink | Comments (3)

It's been three days since I got hooked up. People are asking how it sounds. It sounds like things aren't loud enough... but if I make it louder, it will not be comfortable. A lot of sounds translate into high pitched sounds as I still have to get used to them.

The most important sound I haven't heard with the CI is my three-month-old baby. Not even his cries. Thankfully, I did hear his first coos and cries with my hearing aid before the CI. So, at least, I've got his sounds in my head.

I can't stand the sound of running water as it sounds like a continuous high pitch noise. I know, for the most part, what running water sounds like and this ain't it. It takes time to get used to the CI and wearing it every day brings me a day closer to getting its full benefit. Typing on the keyboard is high pitched like a beep each time I tap. Same goes for the mouse, I hear something more like a beep than a click.

School started today, so I went to the PTA Welcome Back Coffee and meeting. While people were chatting away, I heard a lot of noise and nothing specific. I had to turn down the microphone sensitivity to soften the noise. When the speaker started speaking, I turned it back up. When people talk, it still sounds muffled and unnatural.

If this sounds negative, it's not meant to be. Just giving the lowdown on where I am today.

Posted by at 9:48 AM | Permalink

How did I feel on the way to the doctor's office for hook up? Nothing. It was as if we were dropping off a kid or running an errand. Just didn't want to have expectations and let things happen as they go.

Pam (the person working with me) talked a few minutes about the CI and other things. She put the receiver where the magnet is located just above my ear to the right. It took a few moments to get it to connect with all the hair in the way. She easily put the microphone behind my ear.

Here comes the fun. I probably looked like a nervous person having one leg propped on the chair and a finger on my lips. I'm so tired after all the vertigo and nausea I've experienced for three weeks that I was on guard for noisy sounds.

She ran a series of tests on different channels on the internal processor (the mic was not turned on, therefore I couldn't hear any outside noise) asking me to let her know when I heard something. It sounded like cloudy noise or tunnel noise with a heartbeat fluttering in the ear... thump thump thump. A couple of sounds had me flinching because they were uncomfortable and new. We finished the internal test and moved on to the external component.

Pam warned me to be ready for static that lasts a few minutes. I braced myself as I didn't know what to expect and my poor head had been so abused. She turned it on and it was noisy, but I tolerated it fine. No one spoke during this time, thankfully.

She started talking and I could hear different sounds reflecting her voice. But it doesn't sound like the typical voice. More like a sound that appeared when she spoke and she spoke softly to help me get used to it. Time passed and I adapted to her voice. My mom started talking and I could hear her. While this may be an exciting moment for some, it isn't exciting for me yet because I heard her voice far better with my hearing aids than the CI. Then, Paul started talking but I couldn't hear him at all. Of course, we made the joke that I've learned to tune out the husband.

The baby cried during the session because he was in the middle of his feeding being burped. He doesn't like it when he has to take a burp break and cries. I didn't hear him and haven't been able to hear him well enough to define it's him.

After the jam session on my poor ear, Pam showed me how to use the processor. I'll be glad when I move to the behind the ear processor. Right now, I have the processor on my shorts, but when I go to the bathroom I have to adjust it or take my ear down with the shorts.

We left. In the car, I recognized music and Paul's voice. After we got going on the road, I couldn't hear Paul or my voice anymore. I played with the processor and couldn't get it working. I gave up and waited till we got home. Sure enough, as soon as we turned off the car, I could hear voices again. I figured out that most of the sounds drowned out as we hit the highway.

I'm tired and feel headachy. The sounds have been different and noisy. But I am going to keep the CI turned on because the more it's on, the faster my brain can adjust to the new way of hearing.

I promise to get excited once I get used to the hearing and it's better than the hearing aids. The hearing aids did a lot of good for me, so it'll take time. In fact, I am more comfortable with it now than I was this morning. It'll improve each day. Time for Tylenol and ginger tea.

Posted by at 3:12 PM | Permalink | Comments (11)

I am feeling a little better today after getting a prescription for my heartburn and drinking a homemade ginger drink. Ironically, the ginger drink also gives me a heartburn, but not to the severity I had experienced a couple of days ago.

Just got an email from someone whose son experienced vertigo for several weeks after the CI surgery. He said that an occupational thereapist worked. So I am looking into it.

Hook up day is tomorrow. I don't have any feelings about it right now since I'm so worn out from the side effects of the surgery.

Posted by at 12:10 PM | Permalink | Comments (1)

I'm PO'd now. It's been almost three weeks and I am still not feeling well. It is not all because of the implant. I've had heartburn and reflux, which kept me awake most of the night last night. I desperately want to feel better, get back to work, and get the kids ready for school. Went to the doctor today and got another prescription (joy, joy) plus I'm going to try the ginger drink remedy.

Posted by at 2:51 PM | Permalink | Comments (1)

Today I spent six hours at Zale Lipshy Hospital where I got the CI surgery. For the past three nights (yes, nights only... go figure), vomitting ensued despite my eating less and less. It got to the point of mild dehydration. Calling two doctors, my primary care and the surgeon... both said to report to their respective hospital mini-ERs, get an IV, and blood work.

Despite Zale Lipshy being further away, we decided it was best to go there since they have the CI expertise and can check the ear. Doctor came in and saw no issues, but I had a CT scan later in the afternoon to make sure. CT scan was normal.

I got three hours of fluid out of it and my mind put at ease that it wasn't the surgery. The nurse brought me a bite to eat. This is when we figured it out. As soon as I took a bite of a plain turkey sandwich with no dressing, I got a heartburn. As soon as I stopped eating, it went away. Yep, it had to be GERD. I've had GERD problems for years plus I've been diagnosed with Barrett's Esophagus. It must've been severely acting up in the past few days... maybe from all the abuse I've had over the summer.

We left a message for my stomach doctor. In the meantime, I'm hydrated again and have some serious meds for nausea to ward it off at night. Fun summer, eh? School starts next week, maybe I'll be my old self again then.

Yes, my mother got chicken soup for me... from a can. Really, I'm thankful for my parents who drove to Dallas from Fort Worth to sit with me all afternoon so my husband could take care of school registration and picking up the kids. It's a blessing to have such a supportive and caring family.

Posted by at 7:28 PM | Permalink | Comments (6)

There's much confusion on what a cochlear implant will do for a person's hearing especially since many variables come to play. Before I started looking into CI again (we went to House Ear Institute in LA and had looked into it wayyyyyyyy back in 1984 when it was one channel or something), I thought CIs were just a glorified hearing aid, or a super hearing aid. People who could NOT wear or benefit from hearing aids were benefitting from CIs. That's not me. I was happy with my hearing aids since I could hear the sounds I needed to get through my day.

The Holy Grail, as I mentioned before, is to be able to hear without lipreading and talking on the telephone. It may or may not happen or to a varying degree. People who weren't born deaf and lost their hearing as they got older are more likely to experience this Holy Grail than those who were born deaf. Alas, there is no measuring stick. That's what made the decision to have the CI done difficult. No one could make a promise of what I'll be able to do with the CI in comparison to the hearing aid.

The doctor told me that I've got a 98% chance of success with the CI. What does success mean? It means I'll hear better with the CI than with my hearing aid. Just how much and how well is the question. For instance, with my hearing aids, I can hear the dryer buzz ONLY when I'm in the laundry room. The CI might enable me to hear it from other rooms (Darn! No more excuses of not being the one to get the laundry because I didn't hear the buzzer.).

As to when will I know... it could be six months... a year. Beginning day one of getting hooked up, my hearing will change and adapt every day. So this blog won't end on hook up day.

Whenever I have time (Ha! Three kids, work, volunteer, sleep, etc.), I'll be doing audio therapy using Web sites, the tv with captions, and family. In other words, I'll practice listening and intepreting what is said without lipreading. In the beginning, I'll need to rely on text along with the audio to get a feel for translating sounds into words.

Posted by at 8:02 AM | Permalink

No, this isn't about a computer virus. I'm sure you hear enough on that. Instead, it's a Meryl virus. Looks like I may have come down with a stomach virus or something of the sort that isn't contagious since no one else in the family has been hit with it. I doubt it has anything to do with the surgery since it came down almost two weeks after the surgery. I'm beginning to wonder if I'll ever leave the house again. OK, maybe that is a bit extreme, but it's getting old to be stuck in bed.

Paul was so nice and brought my computer into the bedroom so I can get something done when I feel up to it. Hate falling behind. This has been one heck of a summer for me health-wise.

Posted by at 2:18 PM | Permalink

In exchanging emails with another cochlear implant recipient, he asked what coding strategy I was going to use when hooked up. Imagine a perplexed look on my face. You may think it's nuts that I'm taking on such a big undertaking that I wouldn't be up to speed on coding strategies. Remember, I was just barely pregnant when I started the CI investigation and testing. I learned everything I could back in the Fall, made the decision, set a date, and just moved on with current things.

As I mentioned before, July snuck up on me (having a third kid and another surgery will do that to you) causing me to rush to get things done. By the time it arrived, I had no time to refresh my memory on the research -- just what I needed to know about the surgery and recovery.

One week from this Friday, I'm getting hooked up. Boy, makes me sound like Data from Star Trek, doesn't it? There's the switch, flip it on, sir! I contacted the audiologist and she said we'll be using the ACE speech coding strategy. The link provides one page of information on speech coding strategies in its simplicity.

Well, isn't this a nice change? An entry that has nothing to do with how I'm feeling today. I don't want this to be a whine-blog. My morning was good. After lunch... don't ask.

Posted by at 5:41 PM | Permalink | Comments (1)

I promised pictures. And pictures there be!

Posted by at 6:23 PM | Permalink

I did manage to get one computer task done today and it felt good to do it. However, I'm being forced to share a column with another person because of my inability to work right now. They didn't twist my arm into doing this, but I agree it's necessary since it's a timing issue.

Oh, I love the person with whom I'm partnered. It's just that I had been looking forward to this opportunity ever since I first heard about it. We didn't get going on it right away and then the baby came along with all the health issues when they were ready to move forward.

I hit rough waters again this afternoon. I guess I can only do so much at the computer per day. I had to get on so I could write my daughter one more email before she comes home. So I figured I'd drop a note here while I'm at it. Thanks for letting me vent.

Posted by at 5:47 PM | Permalink

I'm at my desktop PC trying to see if I can work wearing shades. Nope. I'm sick to my stomach.

Posted by at 10:26 AM | Permalink

I rarely post my personal feelings in a blog, but I am just so frustrated and angry with being cooped up and uncomfortable. No one to talk with since poor Paul is stuck with the house work and managing the kids.

I watched the baby while Paul took the middle child out to run errands. It wasn't easy watching the baby when my eyes would start reeling as if it was floating in water. In other words, I feel constantly drunk and not in a fun way.

I know it will pass, but it is becoming a nuisance not to get things done and being lonely and stuck in the same room all day with nothing I can really do. I'm sick of all the popcicles and cold stuff. Haven't had breakfast because I can't think of anything I can stomach though I'm hungry.

I've also lost opportunities or got less of them because of my unexpected health issues this summer. It's enough to make me want to bang my head on the wall and cry in frustration. Thankfully, I have managed to enjoy my newborn throughout this misery. I'm trying to keep a positive outlook that my new way of hearing will be better than I expect and open new worlds.

I just hope I'm better by Thursday when my girl comes home from camp.

Posted by at 10:15 AM | Permalink

Title says it all. Still in bed carefully treading water.

Posted by at 4:41 PM | Permalink | Comments (2)

I didn't have a good night. It started with coughing, then the ear started having a few sharp pains. Poor Paul had to get up to get my a painkiller. I continued to cough later in the night. Paul had to get up with the baby, so I had to weave my way to the kitchen to take something for the cough. Back to bed, but couldn't fall asleep.

I gave up around 7:00 am and went in the kitchen to get all my Rx and a drink since I didn't want to wake Paul again. Yes, another day in bed... another day away from my computer and getting work done. No matter what a mom has been through, nothing can keep her from feeling guilty about not doing housework and taking care of the kids.

Still have to eat soft foods. Eating anything crunchy like cereal is uncomfortable on the ear. Just weird, not painful.

Forgot to mention Dr. Peter Roland of Southwestern Medical Center is the one who performed the surgery. He did not cut any hair and the stitches are right behind the ear -- hard to see. We took a picture, but I don't think it's visible.

Posted by at 7:57 AM | Permalink | Comments (2)

The doctor said the surgery was uneventful. I was told it would take two hours. Instead, it took 45 minutes. I was rolled away at 7:20 am, fell asleep before I hit the operating room, and surgery started at 7:45 am. When I woke up, I found a clock and couldn't quite tell what time it was since my vision was blurry from the drugs (I have LASIK perfect eyes). When I finally could make out the time on the clock, it was 9:00 am. I couldn't believe it and thought my eyes were deceiving me. I was home by 10:30 am. I didn't feel ready to get dressed and go home, but I didn't want to stay at the hospital.

The first day -- it was the pain that bothered me most and I could not get in a comfortable position in bed. I felt a constant, dull ache with pressure on the right side of my head. That night, I was able to go in other rooms and do a few things.

Day two... crash. I could not get out of bed. I was having eXtreme Vertigo. As a mom of a three-month-old, I had to continue pumping every few hours. A tough task when I couldn't sit up. It was bad enough I had to go to my follow up appointment feeling like this. I managed to get in the car and kept a dark cover over my eyes. Sat still the whole way there. Thankfully, I got a wheelchair and sat there the whole time frozen in position. Paul did the talking and thankfully, I wrote my questions on paper before the surgery.

The incision was the least of my problems after the first day. It was mostly numb and the neck pain was more like a swollen gland. My throat didn't hurt, but I was coughing a little after the surgery because it was so dry. I freaked when I learned about the breathing tube, but they promised it would be in and out while I am out, which is what happened. Since I had nothing to eat or drink since the night before, I had built a big thirst. The nurse didn't want me to drink anything too soon after surgery to avoid nausea.

I was extremely thirsty for two days after the surgery. I lived on cold stuff... popcicles, sodas, etc. I had a bite of food here and there. Today is the first time I felt hungry. Tuesday and Wednesday - spent the whole day in bed either asleep or had my eyes closed to avoid a dizzy spell. Getting up to go to the restroom was hell. Through these two days... I am thinking why the hell did I do this?

My body has had enough abuse for the past few months. I think this one was worse than the others because with the others I could at least communicate, use the computer, read, and watch TV. With this one, I had to lie there all day long and move as little as possible.

When my older son tried to talk to me on Tuesday, his lips were all over the place or rather my vertigo made me feel like they were. I just couldn't convince my mind it was all in my head.

Today, I still have dizziness, but not to the severity of the previous two days. I am sitting still on my bed (which I've been glued to since Monday) as I type this and check my emails (which hubby already filtered for spam... what a nice guy!). Many thanks to Paul for responding to emails, posting updates, and letting me use his laptop since I can't get to my PC, which is in a different room.

I did have numbish taste or weird taste. One spot may have had a metallic taste. The weird taste is slowly going away. My ear is still numb.

Hook up is on August 8. Thanks for all your wishes and prayers. They mean a lot. Time to lie down again.

P.S. Photos coming soon whenever I can finally make way to my computer.

Posted by at 12:44 PM | Permalink | Comments (4)

Hello everyone, "The Husband" again. Meryl as requested that I post that she recovering but is experiencing severe vertigo. She apologizes for her slow response to e-mails and requests and asks that you bear with her.

Thank you.

Posted by at 12:39 PM | Permalink | Comments (1)

Hello everyone, this is Paul "the husband" reporting in to let everyone know that Meryl is recovering well.

She reported to the hospital at 5:oh my G-d 30, and answered the same questions from different people 14 times. We were originally told that surgery was going to be 2 hours, however, she was rolled into surgery at 7:20, it started at 7:45 and she was out at 8:30. The doctor reported that it was very uneventful. Meryl woke up around about 9:00 and we are on our way home by 10:15.

After arriving home, she rested uncomfortably in bed sporting a very stylish headband which is very reminencent of a 1980's red Day-Glo "Valley Girl" headband. After an extended nap, she is awake now and feeling better, and has ceased to say "It hurts! I'm very dizzy! Why did I do this!"

She goes back to the doctor tomorrow for her surgery follow up and either she or I will report back.

Posted by at 4:30 PM | Permalink | Comments (5)

Every patient recovers differently, but I wanted to get an idea of what to realistically expect after the surgery, which takes two to three hours.

This is what Anne who had her surgery on July 7, 2003 had to say about her experience:

I also had to be at the hospital at 5:30 am. I was glad about that, though, because I wanted to be first and get it over with. Things moved very fast after 6:30 am with a constant flow of the surgical team stopping by to introduce themselves. My surgery was scheduled for 7:45, but they gave me the sedative at 7:15 (I don't remember much after that) and took me to the operating room too for the prep. So the 7:45 time was actually when the SURGEON started; I was actually unconscious as of 7:15.

My surgery took about 2-1/2 hours for one ear without complications. Recovery time was one week to return to basic body functions, and a second week to get back to normal. I went back to work (desk job) after one week but was not 100% (maybe 75%).

The things that bothered me during recovery were:
- Sore throat
- Mild nausea
- Side of my neck hurt to touch
- Looking at a computer, TV screen or reading made me dizzy - Days 2-5
- Had a low-grade fever
- Afraid to touch the incision for a few days
- BOREDOM
- Pain pills made me groggy. I stopped taking them on day three because I thought maybe they were making me feel sick and took Advil instead.

In hindsight, it was a mistake for me to pick orange juice to drink after surgery, because of the acidity to both my stomach and my throat. I have also heard that apple juice is a bad choice if nauseated. 7-Up would have been better.

With the recovery, you just have to ride it out and take it easy. It will get better within the first week, and then that much better the second week.

Meryl notes to herself: get as much computer work done today as possible and rely on Sonic Coke for nausea (always the best especially with its crushed ice).

Posted by at 11:56 AM | Permalink | Comments (1)

Jeff did a great job sharing his experience with a cochlear implant in A Sound Decision. This link takes you to the page that demonstrates what saying a sentence sounds like through regular hearing, a hearing aid, hook up day, a few days later, and two weeks later. To me, it all sounds the same except for the beeps and blips... it sounds like noise not like a person talking.

The site also talks about how sound works with a cochlear implant. Jeff describes his hearing experience and what he experiences is not necessarily what I will experience. It may take me more time or less time... it may not sound as clear. We do not have the same history with regard to our hearing loss.

This PowerPoint file is a simulation of what a cochlear implant sounds like. Thanks to Michael Chorost for the pointer.

Posted by at 6:12 PM | Permalink | Comments (1)

<Deep breath> Whew. Found out today that I should get hooked up the week of August 11. What a week that's going to be considering my oldest starts school that week. Still waiting for the phone call about the time of the surgery.

It's lucky that I am doing this while on maternity leave. The stress of the surgery leaves me unable to think straight right now. Plus, after the surgery ... I don't know how well I'll be able to understand people without sound. Yes, I can wear one hearing aid, but my left ear is unreliable and doesn't handle being the only ear hearing. That's why the right ear is getting the honor of the implant.

Though I do lipread, hearing aids enable me to understand more than if I didn't have them on. Just ask Paul. He can tell you I understand him less with my hearing aids off than when I have them on. It was fun (not) in the past month when I had to have each hearing aid repaired. The back up hearing aid is just not as good. Figures -- I spend my last month as a dual-hearing aid wearer with uncomfortable and lopsided hearing. It's back to normal now, but I'm trying to swim a lot this weekend since I won't be able to swim for a few weeks.

It's a good thing I am doing this now while I have a young baby. It'll be an opportunity to hear the baby in a new way. But it also means not really hearing the baby for at least a month. Hate to miss his coos and laughs. I just hope I will be able to hear normally before the baby is one-year-old. Don't know how long it'll take before I can hear comfortably with the CI.

So nervous. I've got a life long history of dizziness that has gotten worse as I get older. Some have said the CI made it worse while others saw improvement.

Those who know me... know I hate the unknown. 2003 has been the year of the unknown.

Posted by at 1:12 PM | Permalink | Comments (2)

When I started researching cochlear implants last fall, I found a couple of great discussion groups where I learned from others' experiences and stories. There are two good ones I recommend: Cochlear's Forum for those considering a cochlear implant, and individuals who have a cochlear implant and their relatives (especially parents of deaf children). Coclear also helps make Connections. The other is CI Hear.

Other good places to research CI is the manufacturer Web sites. Cochlear, Med-El, and Advanced Bionics. One of the hardest things to do was choose the brand of the device. I've selected Cochlear, but this by no means indicates the other two aren't good quality. They all have their strengths and weaknesses. It's based on the wearer's needs.

Posted by at 2:02 PM | Permalink | Comments (1)

Unbelievable. We get a call from the hospital's finance office asking how we want to pay and if I am outpatient or inpatient (it's outpatient, unless there is a problem). Well, from what we understand, insurance was supposed to pay for the whole deal. According to the hospital, this is the first time an HMO has ever not paid for the whole thing. Go figure.

We call the insurance and the popular answer to our questions is... <drum roll> “I don't know.”

Just what I need... another roadblock to a stressful and difficult year (besides the birth of kid #3, of course).

Thanks for letting me blow off steam here. I cussed while writing this, but this is a G-rated blog...

Posted by at 6:59 PM | Permalink | Comments (1)

Here are my audiograms from 1988, 1992, and 1999.

1988 part 1

medium large

1988 part 2

medium large

1992

medium large

1999

medium large

The conclusion? I'm gosh darn deaf. :) Seriously, my hearing hasn't changed since birth. Maybe a drop.

Other test results:
Lipreading and hearing test -- 100%

Lipreading / no hearing test 70%

Lipreading / hearing test -- lousy

Took a look at four words and listen for one word -- got all but one right (the one I debated for a second) without asking for repetition.

Hearing loss: 90-110 db
Hearing aids: 60 db
Average hearing: 10-30 db with 30 db being a whisper

We won't know how much of a difference the CI makes for a while. After the surgery, I have to wait three to four weeks before getting hooked up. So, I'll be in silent world during that time. Once I get hooked up, what I hear won't be anything like what I will hear a few months from now. It takes time to get used to a new way of hearing. Remember learning to ride a bike? Drive a car? Put on contacts for the first time? It took practice. Hearing aids and CIs are the same thing.

Posted by at 7:13 PM | Permalink

Date: July 21, 2003.
So? I get a cochlear implant.
The victim: my right ear.

33 years after I was diagnosed with a profound hearing loss, I'm taking a step towards to hearing better. My hearing aids have been good to me. I could hear music, voices, rain, dogs barking, and babies crying. After much research and talking with the doctor, I have learned the cochlear implant is supposed to help me hear better. I can't imagine what that means because I think I can hear a lot of sounds. The only thing I can't do, and that's the holy grail, is hear what people say without lipreading (talking on the phone, for example).

The cochlear implant is not a guarantee I'll be able to talk on the phone. I might be able to or I might not. It could take six months or one year. Who knows. There are many variables when it comes to figuring out how much a person will benefit from a coclear implant.

On July 1, I was flabbergasted when I realized it was only three weeks to the surgery. I began to panic and get cold feet. It's now one week away and I'm nervous. I'm about to embark on a life-changing experience... for the good, I hope.

Posted by at 4:58 PM | Permalink | Comments (5)