Yesterday, Brian and I got up at 5, and we hit the road at a little after 6. On the way up, we talked about a lot of things, and cochlear implants came up a lot. Traffic wasn't too terrible in Phoenix and we arrived at 8:30, the sun shining bright and the air thick with citrus bloom. I dropped off my paperwork at the front desk, and we waited. The office was clean and bright, with plenty of space. There were people of all ages in the waiting room.
The audiologist came out and called my name. I do not remember her name, but she was very nice. We went to the soundproof testing room and she set up the ear-buds. First, we did the standard hearing test: push the button when you hear the beep. Then the word test, where she read off a standard list of words in each ear alone, and I repeated what I heard back to her. When she did the left ear, the quality of the sound was so poor that I told her she sounded like a dog barking. I laughed at how ridiculous she sounded. I was able to make out some words, albeit very few.
Next, the aided portion. She came in and took the earbuds out, and I put my hearing aids in. Using speakers, she re-did the first part: push the button when you hear the tone. Then we did the HINT portion, Hearing In Noise Test. It was hard. Once in a while I made out a few words or the entire sentence, but I missed a lot of them. We all had a good chuckle at some of my answers. There's no way "He broke his nail" wound up on the sentences list. But that's what I heard.
Finally, we were done. She said I was audiologically qualified to be implanted. I still need to be medically evaluated with a CT scan.
Next, I met the surgeon. He started with the standard "When were you deaf? When did you start wearing hearing aids?" Looking at my audiogram, learning my history, and hearing me speak, he complimented me on my speech. I thanked him, and said it was the result of a lot of work. In addition, I said that I owed a lot of success to a good ear for hearing speech, which was now showing decline.
"Your hearing sucks," he replied.
"What?" I said.
"Your hearing is terrible. It's just getting more terrible," the doctor said. He said that I have probably been a qualified candidate for quite some time.
We talked about devices. He implants all three systems, and leaves the device selection decision completely up to me. My kind of guy. He's going to submit my name to all 3 companies for the information packet. I've already seen the packets from Cochlear and Advanced Bionics, but I'll finally get the Med-El packet. I'm pretty certain I'll do Advanced Bionics, but it's great to have the ability to choose.
We talked about which ear. I told him that my left ear used to be a bit better and faded into the corner by the time I was a teenager, so it has some auditory memory, and that I wanted to save my right ear. He agreed that the left ear would be a good choice, but we need to look at a scan first. He said that it makes a world of difference that I've continued to wear a hearing aid in that ear, keeping the auditory nerve stimulated. Serendipity from wanting my bass line.
He addressed the potential for facial paralysis and taste disturbance. The face and taste nerves are 3-4 millimeters apart, and apparently they need to drill between them. They put electrodes on the face to measure current and warn if the surgeon is getting too close. If they cannot do the operation safely between the nerves, the taste nerve is sacrificial. I'm not too thrilled with that, but I appreciate his honesty. If I do lose the taste nerve, the front 2/3 of the left side will lose taste. I'll still have the right side, and my sense of smell, and apparently I'll 'recover' and adapt.
To my surprise, he said that activation is 3-4 days after surgery. I'm not sure how they can activate so quickly yet. Hopefully we can do the surgery on a Monday, and activate on Thursday or Friday, with a weekend to adjust to it before going back to work as a newly assimilated cyborg. I'm not sure how useful it will be right off the bat, but it will be good to skip waiting a month without sound in the implanted ear.
I asked about where the implant would go, and the need to accommodate a cycling helmet. He said to bring the helmet to the surgery, and they would do what they could. It won't be the first time he has done that. He accommodated similar requests for a woman who rode horses, and a construction worker who needs to wear a safety hat.
The next step is to do the CT scan and make sure I am normal in the head. I know for a fact that I'm not normal in the head, but the bones are probably ok. Along with that, I need a meningitis vaccine. There is a heightened risk of contracting meningitis due to the type of surgery. Then the insurance packet is prepared and submitted for approval. This step is expected to be routine. I am a qualified candidate, and my insurance covers it, so it's a matter of ensuring the approval before going under the knife. I'm not sure how long it will all take, but I think it's safe to assume I'll be implanted and activated by the end of April.
Here we go!
Friday, February 27, 2009
Tuesday, February 24, 2009
Caveat Emptor
Cochlear implants apparently can do a fantastic job of restoring the world of sound. However, your mileage may vary. I've been reading testimonials, blogs, forums, and anything I can find about cochlear implants. There are some who think that it sounds natural and are able to hear again from the moment of activation. There are others who find the sound foreign, alien, and otherwordly, and struggle to interpret the signals as recognizable sounds and speech.
Most often, people find voices to be cartoonish and high pitched in tone. This is a result of the insertion depth. The hair cells at the end of the spiral of the shell-like cochlea are for the lowest frequencies, while the hair cells at the opening of the shell are for the highest frequencies. The deeper an implant is inserted, the deeper the pitch that is stimulated. Most people will experience a bias to higher pitch. Some people will experience almost normal or lower pitch, but the majority state that voices are higher and more cartoonish. Think Mickey Mouse. Alvin and the Chipmunks.
There apparently isn't much of a method to inserting an implant for accurate pitch reproduction. Every ear is different, and there's just no way for the surgeon to know how far to insert an implant. There is one implant producer, Med-El, that boasts of a longer implant than competitors have, which is intended to insert deeper and reach those lower frequencies more reliably. However, Med-El was just recently approved by the FDA for use in the US, and there is virtually no presence here yet. Also, their sound processing algorithms don't seem as advanced as AB's. Although in their favor, they have the smallest BTE (Behind The Ear) units.
People will get post-CI audiograms indicating nearly normal hearing response to frequencies from 250 Hz to 8000 Hz. The world is awash in sound, and speech can be deciphered without lip-reading in social settings and on the phone. So CIs promise to help me hear everything, but only in the pitches that the implanted device can stimulate. Hopefully I get a normal insertion, but most likely, I will get cartoon voices on activation day. I have mixed feelings about that. I'll be able to hear everything, but through a high-pitched filter.
Programming the implant is another consideration. Taking electrodes and immersing them in a salty, wet environment, one cannot expect reliable and repeatable sparks every time. The sound processor program's settings, or the map, as it is called, has to be fine-tuned to your ear and your preferences. Unfortunately, the neurological response to electrical stimulation can change over time, causing, literally, static to be heard, along with other undesired effects. That indicates that it's time for a new mapping appointment. So I'll be constantly looking for that sweet spot of optimum performance from the implant.
Also, there's the matter of the surgery. Once I go under that knife, I am committing to a life of surgery. If I have complications, I'll need surgery. If the implant fails, I'll need surgery. If I want an upgrade, I'll need surgery. If it has a limit on how long it should be in my head, I'll need surgery. Surgery has all sorts of risks, medical, financial, and otherwise. Definitely not one of the high points of going the bionic route.
But I'll be able to hear everything. Through a squawky box. Maybe.
I've always de-emphasized low frequencies in my right hearing aid, because that ear has a good level of high frequency hearing, although it is now fading. I've had good success using a strategy with crispy whispers, clinks and beeps in my right ear, and booming, rumbly bass in my left ear. I found that amplifying the lows muddied up the high frequencies, so my high-frequency ear developed a preference for quiet low frequency amplification. So when I turn off my left boomy aid, and only listen to the crispy whispers in my right ear, is that what a CI might sound like? Maybe I've already sort of trained my brain to listen to CI sound?
In other news, the old Oticon Sumo DM is back in my ear. I just don't like the Phonak. I gave it a week, almost, but found myself frustrated and hating the sound from it. Maybe modifying the Phonak's programming will help, but I have generally not had much luck with that brand. The Sumo DM seems awfully loud after wearing the Phonak, so I am wearing it low. But everything seems so much more detailed and clear with this hearing aid.
Most often, people find voices to be cartoonish and high pitched in tone. This is a result of the insertion depth. The hair cells at the end of the spiral of the shell-like cochlea are for the lowest frequencies, while the hair cells at the opening of the shell are for the highest frequencies. The deeper an implant is inserted, the deeper the pitch that is stimulated. Most people will experience a bias to higher pitch. Some people will experience almost normal or lower pitch, but the majority state that voices are higher and more cartoonish. Think Mickey Mouse. Alvin and the Chipmunks.
There apparently isn't much of a method to inserting an implant for accurate pitch reproduction. Every ear is different, and there's just no way for the surgeon to know how far to insert an implant. There is one implant producer, Med-El, that boasts of a longer implant than competitors have, which is intended to insert deeper and reach those lower frequencies more reliably. However, Med-El was just recently approved by the FDA for use in the US, and there is virtually no presence here yet. Also, their sound processing algorithms don't seem as advanced as AB's. Although in their favor, they have the smallest BTE (Behind The Ear) units.
People will get post-CI audiograms indicating nearly normal hearing response to frequencies from 250 Hz to 8000 Hz. The world is awash in sound, and speech can be deciphered without lip-reading in social settings and on the phone. So CIs promise to help me hear everything, but only in the pitches that the implanted device can stimulate. Hopefully I get a normal insertion, but most likely, I will get cartoon voices on activation day. I have mixed feelings about that. I'll be able to hear everything, but through a high-pitched filter.
Programming the implant is another consideration. Taking electrodes and immersing them in a salty, wet environment, one cannot expect reliable and repeatable sparks every time. The sound processor program's settings, or the map, as it is called, has to be fine-tuned to your ear and your preferences. Unfortunately, the neurological response to electrical stimulation can change over time, causing, literally, static to be heard, along with other undesired effects. That indicates that it's time for a new mapping appointment. So I'll be constantly looking for that sweet spot of optimum performance from the implant.
Also, there's the matter of the surgery. Once I go under that knife, I am committing to a life of surgery. If I have complications, I'll need surgery. If the implant fails, I'll need surgery. If I want an upgrade, I'll need surgery. If it has a limit on how long it should be in my head, I'll need surgery. Surgery has all sorts of risks, medical, financial, and otherwise. Definitely not one of the high points of going the bionic route.
But I'll be able to hear everything. Through a squawky box. Maybe.
I've always de-emphasized low frequencies in my right hearing aid, because that ear has a good level of high frequency hearing, although it is now fading. I've had good success using a strategy with crispy whispers, clinks and beeps in my right ear, and booming, rumbly bass in my left ear. I found that amplifying the lows muddied up the high frequencies, so my high-frequency ear developed a preference for quiet low frequency amplification. So when I turn off my left boomy aid, and only listen to the crispy whispers in my right ear, is that what a CI might sound like? Maybe I've already sort of trained my brain to listen to CI sound?
In other news, the old Oticon Sumo DM is back in my ear. I just don't like the Phonak. I gave it a week, almost, but found myself frustrated and hating the sound from it. Maybe modifying the Phonak's programming will help, but I have generally not had much luck with that brand. The Sumo DM seems awfully loud after wearing the Phonak, so I am wearing it low. But everything seems so much more detailed and clear with this hearing aid.
Friday, February 20, 2009
New hearing aid
The new hearing aid fitting was last Wednesday. The hearing test for this hearing aid showed the worsening that prompted the CI research and candidacy screening. I will continue to wear this aid in my right ear after the CI is implanted in the left ear.
So the new hearing aid was a Phonak Naida, which went into the better ear, the right ear. It's yet another sound processing algorithm to get used to. Seems to be a mixed bag. I was able to make out someone in a meeting at work that I never could make out before (with lip-reading). But I'm still struggling and getting poor results overall, and can make out very little without visual cues. It has some kind of sound processing enhancement which seems to make speech more clear, especially when I have visual cues. Music sounds very quiet and unsatisfying. Things are less distinct in music with this aid than with the Sumo DM. It seems to have very aggressive compression, meaning I am hearing most sounds in a very limited volume range that is soft-comfortable.
On the CI front, I received the AB information packet I requested just last week. It came by Fed Ex! It has a couple of videos in it which I enjoyed watching. I feel more certain about my choice of device now. Also, I have been reaching out to the CI-borg online community. How great that there will be new friends from this journey, too! One by one, the days count down to the candidacy screening.
I've been practicing listening with my left ear, trying to train it to listen. I put on a song I know in the car, and listen with my left ear only, with the right aid on mute. It is very muffled and indistinct, but I can make out where it is in the song. I can hear the lyrics because I know them already. I really tried to focus on nuances of the music and hear detail. It was pretty muddy and muffled, but I was able to get something out of it. I know the CI will sound nothing like this, but the neural synapses need the exercise anyways. :)
6 days to the screening.
UPDATE:
Took the Adaptive Pitch Test with the new hearing aid. To compare, previously I got 7.2 Hz with the Sumo DM.
First time, 21.6 Hz, Pitch Perception Problem. But the dogs were barking, and I got all messed up. So I took it again.
8.7 Hz.. It starts to supports my perception that everything sounds a little flatter with this aid. Thinking I could do better, I try yet again. This time, I really focus, and replay it as much as I can to decide if the 2nd note is higher or lower. This time I got 2.7 Hz! Normal is 1.5 Hz to 6 Hz. So the hearing aid works, but I need to listen carefully.
So the new hearing aid was a Phonak Naida, which went into the better ear, the right ear. It's yet another sound processing algorithm to get used to. Seems to be a mixed bag. I was able to make out someone in a meeting at work that I never could make out before (with lip-reading). But I'm still struggling and getting poor results overall, and can make out very little without visual cues. It has some kind of sound processing enhancement which seems to make speech more clear, especially when I have visual cues. Music sounds very quiet and unsatisfying. Things are less distinct in music with this aid than with the Sumo DM. It seems to have very aggressive compression, meaning I am hearing most sounds in a very limited volume range that is soft-comfortable.
On the CI front, I received the AB information packet I requested just last week. It came by Fed Ex! It has a couple of videos in it which I enjoyed watching. I feel more certain about my choice of device now. Also, I have been reaching out to the CI-borg online community. How great that there will be new friends from this journey, too! One by one, the days count down to the candidacy screening.
I've been practicing listening with my left ear, trying to train it to listen. I put on a song I know in the car, and listen with my left ear only, with the right aid on mute. It is very muffled and indistinct, but I can make out where it is in the song. I can hear the lyrics because I know them already. I really tried to focus on nuances of the music and hear detail. It was pretty muddy and muffled, but I was able to get something out of it. I know the CI will sound nothing like this, but the neural synapses need the exercise anyways. :)
6 days to the screening.
UPDATE:
Took the Adaptive Pitch Test with the new hearing aid. To compare, previously I got 7.2 Hz with the Sumo DM.
First time, 21.6 Hz, Pitch Perception Problem. But the dogs were barking, and I got all messed up. So I took it again.
8.7 Hz.. It starts to supports my perception that everything sounds a little flatter with this aid. Thinking I could do better, I try yet again. This time, I really focus, and replay it as much as I can to decide if the 2nd note is higher or lower. This time I got 2.7 Hz! Normal is 1.5 Hz to 6 Hz. So the hearing aid works, but I need to listen carefully.
Thursday, February 19, 2009
More appointments
So, having decided on Advanced Bionics, I used their Clinic Finder to look up surgeons. I saw that the Mayo clinic was listed, so Brian called for me and asked about a candidacy screening. They had an availability the next day! I made an appointment. After I got to work, I told a co-worker, excited that things were moving along. But he warned me that Mayo might not be covered on our plan. Turned out, he was right. I had my second canceled appointment.
Brian and I stepped back, and decided to cross reference the Advanced Bionics list to the insurance company's network. Also, some word of mouth made its way back to me, and it turned out that both of the surgeons I heard about were in-network and implanted Advanced Bionics. So the two surgeons each got a call for a candidacy screening appointment. One is for February 27 (next Friday!) and the other is for March 30, over a month away. I'll go the one next Friday to see if I'm even a candidate.
The candidacy screening will be an evaluation of my auditory skills. I will go through a battery of tests, with and without my hearing aids. My listening comprehension will be tested on each individual ear, as well as both at the same time, while wearing hearing aids. Background noise will be added, and there will be no visual cues (no lipreading). If I do not do well enough, then I am a candidate. If I do too well, then I am not a candidate. I listen to audio exercises now and my listening comprehension is very poor. Sometimes I can't even understand a single sentence, and even though I play it over and over again, I just can't make it out. I'm pretty certain I'm a candidate. I'm going to do the best I can, and if I disqualify as a candidate, so be it. This journey will pause, and I'll continue to learn about this incredible technology. But, if I do qualify, the implant is going in. Maybe by summer, I'll be exploring a new, noisy world.
I ordered "Rebuilt: How Becoming Part Computer Made Me More Human" and "The Practical Cochlear Implant Guide" from Amazon. They should get here sometime after my candidacy screening. One is a memoir that has great reviews. The other is a more mundane, thorough book, covering all aspects of Cochlear Implants. It was first written in 1991 and was recently updated and revised.
Brian and I stepped back, and decided to cross reference the Advanced Bionics list to the insurance company's network. Also, some word of mouth made its way back to me, and it turned out that both of the surgeons I heard about were in-network and implanted Advanced Bionics. So the two surgeons each got a call for a candidacy screening appointment. One is for February 27 (next Friday!) and the other is for March 30, over a month away. I'll go the one next Friday to see if I'm even a candidate.
The candidacy screening will be an evaluation of my auditory skills. I will go through a battery of tests, with and without my hearing aids. My listening comprehension will be tested on each individual ear, as well as both at the same time, while wearing hearing aids. Background noise will be added, and there will be no visual cues (no lipreading). If I do not do well enough, then I am a candidate. If I do too well, then I am not a candidate. I listen to audio exercises now and my listening comprehension is very poor. Sometimes I can't even understand a single sentence, and even though I play it over and over again, I just can't make it out. I'm pretty certain I'm a candidate. I'm going to do the best I can, and if I disqualify as a candidate, so be it. This journey will pause, and I'll continue to learn about this incredible technology. But, if I do qualify, the implant is going in. Maybe by summer, I'll be exploring a new, noisy world.
I ordered "Rebuilt: How Becoming Part Computer Made Me More Human" and "The Practical Cochlear Implant Guide" from Amazon. They should get here sometime after my candidacy screening. One is a memoir that has great reviews. The other is a more mundane, thorough book, covering all aspects of Cochlear Implants. It was first written in 1991 and was recently updated and revised.
Tuesday, February 17, 2009
Pitch, Rhythm, and Melody tests
Found this great site. You can test your pitch perception, rhythm sense, and melody sense.
Audio tests
With both hearing aids in, I got
7.2 Hz Pitch perception, low-normal.
88% Rhythm perception, pretty good.
58% Melody - barely better than guessing.
With just the left hearing aid, I got 24 Hz on the pitch perception, which is beyond the "possible pitch perception problem" level. I am not sure what kind of accuracy I'll get with the CI.
Feel free to add comments with your scores if you try the tests! :)
Audio tests
With both hearing aids in, I got
7.2 Hz Pitch perception, low-normal.
88% Rhythm perception, pretty good.
58% Melody - barely better than guessing.
With just the left hearing aid, I got 24 Hz on the pitch perception, which is beyond the "possible pitch perception problem" level. I am not sure what kind of accuracy I'll get with the CI.
Feel free to add comments with your scores if you try the tests! :)
Cancelled appointment
I jumped the gun on making an appointment to screen for candidacy. Doing some research, I found a lot of info on the differences between the devices. I changed my mind from Cochlear Corporation, and think I would prefer the Advanced Bionics device. It has "high-def" versus the old technology used by the other two manufacturers. Since the appointment I had was for a Cochlear Corporation-exclusive surgeon, I had to cancel it.
This link really shows the difference.
Here are some audio simulations of 8-channel CI devices. Hopefully I will get better audio than that with the 120-channel Advanced Bionics system.
Now I'm thinking of Mayo Clinic for the surgery. I'll contact them and see. The possible complications from surgery could include facial paralysis and loss of taste. Great. So I'd like to find the best surgeon possible.
This link really shows the difference.
Here are some audio simulations of 8-channel CI devices. Hopefully I will get better audio than that with the 120-channel Advanced Bionics system.
Now I'm thinking of Mayo Clinic for the surgery. I'll contact them and see. The possible complications from surgery could include facial paralysis and loss of taste. Great. So I'd like to find the best surgeon possible.
First Post
My first post here is a repost from my Facebook page.
I was born deaf from medicine my mom took during pregnancy. They didn't know at the time but the drugs she took were ototoxic to the fetus. I have a severe to profound loss, and have enjoyed relative success being auditory with the use of hearing aids. I have been having more difficulty lately and a recent test confirmed a continued erosion of my hearing. The audiologist asked me if I had considered a Cochlear Implant (CI). I had, about 7 years ago, for my left ear which is just about stone deaf, but decided to wait for technology and medicine to advance. The audiologist did mention that insurance will usually cover it, removing one of my primary concerns. He also promised to email me more information. A few days later, he sent information on a seminar just days away.
I was busy at work, and debated taking the time off to go. I clung to the notion that I could still wait for technology to advance. But my eroding hearing changed the equation. Perhaps I had waited long enough. I went to the seminar. It was very informative, and there was one CI recipient there who astounded me with her story and her ability to hear someone without reading lips.
Now I have an appointment for a candidacy assessment. There are certain criteria for determining candidacy, and the audiologist will evaluate me against those criteria. CIs have progressed to the point where people who receive them do very, very well. If I can hear with it like the average recipient, I will hear better than I can ever remember. I am still anxious about my future but I have a lot of optimism and hope for what may come.
I was born deaf from medicine my mom took during pregnancy. They didn't know at the time but the drugs she took were ototoxic to the fetus. I have a severe to profound loss, and have enjoyed relative success being auditory with the use of hearing aids. I have been having more difficulty lately and a recent test confirmed a continued erosion of my hearing. The audiologist asked me if I had considered a Cochlear Implant (CI). I had, about 7 years ago, for my left ear which is just about stone deaf, but decided to wait for technology and medicine to advance. The audiologist did mention that insurance will usually cover it, removing one of my primary concerns. He also promised to email me more information. A few days later, he sent information on a seminar just days away.
I was busy at work, and debated taking the time off to go. I clung to the notion that I could still wait for technology to advance. But my eroding hearing changed the equation. Perhaps I had waited long enough. I went to the seminar. It was very informative, and there was one CI recipient there who astounded me with her story and her ability to hear someone without reading lips.
Now I have an appointment for a candidacy assessment. There are certain criteria for determining candidacy, and the audiologist will evaluate me against those criteria. CIs have progressed to the point where people who receive them do very, very well. If I can hear with it like the average recipient, I will hear better than I can ever remember. I am still anxious about my future but I have a lot of optimism and hope for what may come.
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