(The date I gave this entry is my 50th birthday... that ought to be far enough in the future I think!!)
(The date I gave this entry is my 50th birthday... that ought to be far enough in the future I think!!)
I have a lot of work to do this time of year, but wanted to post my first thoughts on this TED video.
First – no captions yet! gah! I can understand the main speaker, but the video clips aren’t clear enough to hear.
Second – I’m entirely happy with my two CIs. It’s been almost 2 years since the second one was activated and this is definitely my new normal and I wouldn’t go back to hearing aids if given a chance.
Third – I’m still playing saxophone in the sax sextet and in the band. We often play music in the house from Pandora, usually classical or jazz. Music I know well sounds the same as I remember it (because I’m remembering it), music that’s new to me starts out a bit muddled but becomes clearer with repeat listening (kind of like band, but there I’d expect it’s people learning their parts instead). I hear different things than I did with just hearing aids. I hear less of myself, and a little less of the people on either side of me. More of the trumpets, much more of the percussion, and Piccolos! There are definitely moments of beauty and emotion.
That said, you’ll see in this TED Talk video that cochlear implants are designed for speech and don’t do a very good job with music.
Embed code not working, so here’s a link to the video:
As happy as I am with my CIs, I really do agree with this video.
If you watched the video you’re probably wondering what I thought of the sound clips.
There are some sound clips in the video that portray music which sounds badly if you have normal hearing… I can’t really tell it sounds bad, in fact, the first clip of the MIDI file with pitches moved a semi-tone – sounds the same to me as the original. The trumpet clip vs violin – very similar, the violin had more vibrato, both sound a bit synthetic to me still – like the trumpet sound on electronic keyboards from the early 1990s. The clips of the Usher song, well, I can tell the difference between those… not sure either one sounds great, the second lacked percussion which seems more like a hearing aid issue than a CI issue.
I’m curious to hear what others think and encourage those with CIs to watch the video and then share here or in the comments on the TED page.
A week ago a potential iPad Engraving customer of mine expressed concern at sending me his expensive electronics. He wanted to know if I had a way to reassure him that everything about my company is legit. I was just a tiny bit annoyed, but this has happen before, so I knew what to send him. Even though my business website is professional looking and full of photos and testimonials, some people are still suspicious… and maybe that isn’t such a bad thing, as you’ll see.
After this happen I decided to make a media page for the website – one place to highlight all the articles about the company. So I set off googling my company to see what I could find. I have a google alert set up so most of it was not new to me. Then I decided to google iPad Engraving and see how the competition is doing. Nothing really new and exciting there. Down about eight pages in the search results I found a link to a site that focuses on engraving electronics for individuals. I clicked through and noticed they were using a web-to-print service I hadn’t seen before so I poked around some more. Somewhere on their site I found a link to their ‘corporate orders’ site. I clicked that. Imagine my surprise when I discover that this site is full of photos that I took myself.
Yes, that’s right. A business in the exact same industry as mine was using photos I had taken of my engraving work to promote their business. Not a “splog” site that just ripped my content, but a supposedly legitimate business. And not just one photo – but dozens. After a closer look I recognized work in other photos that was done by various engravers I know of.
If you share photos on the web, this has probably happen to you at some point in time. I even had a young deaf girl steal photos of me to put on her Facebook page once. This is why most photographers watermark their images with their name and copyright notice.
So this past week was a learning experience for me. Here’s a summary:
- A lot of people are ignorant of even the most basic concept of copyright laws and how they work. Some are ignorant to the point of declaring that as long as you give credit it’s okay to use a photo you find online. One guy actually said that that’s “what books and magazines do”. Really? No! That’s not what they do. They license (receive permission to use) every photo they use either directly or through a license agency. Every Photo. There is a special case here, if you see a photo on the web that says it is released under a Creative Commons license that may mean that you may be able to use it and only have to give permission. There are different levels of Creative Commons licenses, so be sure to check that your use is included. My photos were licensed this way, but they were tagged Non-Commercial. If a blog had used them and given me credit I’d be perfectly happy. But since another business (commercial!) used them and didn’t even give credit… I was really not happy.
- Sending a DMCA takedown notice usually works. The Digital Millennium Copyright Act means that the internet really is not the Wild, Wild West that some people claim it is. There are procedures to follow to sent a notice to the host of the site that took your content that you want it removed. The host then starts by warning their customer and if that doesn’t work then they go in and remove the files themselves.
- It’s very easy to register your work with the US Copyright office. You don’t have to register your photos/work with the copyright office, but if you do it makes your case much easier to defend. Some photographers say that pursuing settlements for copyright infringements is a second income stream for them.
- Watermarks don’t have to be huge. Watermarking images is a way to tell people that they are yours. The objection has been that a small mark in the corner is easy to just crop away and a big watermark across the center really distracts or takes away from the experience of viewing the image. It turns out that the small one will protect you greatly because there are laws in place to say that removing the watermark is illegal too.
- Taking it further would require a lawyer. So far I haven’t found a copyright lawyer to work with, and since the photos have been removed from the site (though are stitll saved in the host directories) I probably won’t be filing any lawsuits this time. I’m just this much more ready in case it happens again.
So now it’s 2011. I received my first CI in April 2009 and the second in late December 09 – so I’m officially over a year being bilateral. It’s been great. Life is good and pretty much what I’d call normal. I can hear a lot better in many situations. I find myself having one-on-one conversations in very noisy places (a Wine Guild holiday party with about 80 people in a small space – Don had a headache when we left from the noise!). I still participate a lot more if someone’s talking to ME specifically. One-on-one conversation guarantees this, but I’m finding that it happens more often now as a side conversation than it used to. For example, at lunch with a group of five people, I can switch between the main conversation and talking to someone next to me and usually not be too lost when I go back to the group. I catch enough so that I can be filled in with a quick ‘what was that?’ or ‘who were you talking about?’ It used to be a lot harder to catch up to a conversation like that.
I’ve discovered a lot of new things in some of the songs I’ve listened to for years. Usually it’s a high-frequency solo filling in what used to seem to me to be just a boring spot. A harmonica in Billy Joel’s Piano Man… Some kind of flute or pipe in Moxy Fruvous’s Johnny Saucep’n… Hey I bet I can hear those tinkling things at the end of Dreamed A Dream… haven’t given that a good listen yet, but they were one of the things I remember feeling the loss of when I first lost my hearing in 1993. (Time for new music?)
I’m still playing in the 90-piece concert band and the 6-member saxophone ensemble. It took a few CI mappings before the trumpets playing too loud stopped making my face twitch from the first CI. Speaking of mappings, I haven’t been to UNC for an appointment since last year, I think mid or late March. I could probably use one, but don’t have anything specific that needs tweaking.
Another thing that’s amazingly easier than it used to be: having a conversation in the car in the dark. At least with Don, I don’t get many opportunities to test this with other people.
So all is going really well, and there’s generally not a lot that seems exciting enough to bother blogging about. That’s a pretty good testimonial!
I love the talks at TED.com. Not only do they have subtitles in multiple languages on I think ALL videos, they are recorded in such a perfectly clear and high quality way that I can understand them without the subtitles. Even on my tiny laptop speakers I understood a large part of this talk just now.
I wish I had watched this when I first found the link to it a few weeks ago, but I’m glad I watched it now. The part that starts around 15 minutes talks about ROWE – a results only work environment. It’s a very quick summary but very effective in the example he calls out.
Let’s see how I do with my last post’s list. I’m going to take CI/hearing topics today.
1. 4 months with CI
That’s right. I was activated way back on May 4th. I’ve been in for just 3 mappings since then at 2 weeks, 1 month and 3 months (though all were a bit late).
My audiogram has remained hovering around 25-35 all the way across. I think it is low because my maps are still getting a bit louder each time and they do the test Before I get a new map.
I still prefer the Med-El FSP (Fine Structure Processing) versus the HD-CIS program. My audiologists still insist that I keep trying both. So one of my program slots is still HD. They both sound good to me, so it’s just a matter of what I am used to. Music sounds more musical in FSP. FSP may also work better with background noise.
On being bimodal (that’s CI + hearing aid), at my 1 month map my audiologist said I could start wearing my hearing aid again whenever I wanted to, but suggested I decide one way or the other and stick with it. So I have been wearing both all of the time. Thankfully my CI and HA are working together now. Originally the CI was canceling the HA out and I couldn’t hear anything at all through it. It was strange and scary that even with the CI turned off my HA didn’t sound “right” after the implant.
One thing this has really reinforced for me is that Ear Molds Suck! My unimplanted ear with the hearing aid is always going through a cycle of scabby, sore, gooey, sore, dried out, scabby, etc. I think this is worse because I have been swimming at the gym once a week. My implanted ear is perfectly normal. No ear mold is a nice thing.
At my 3 month mapping I was tested wearing both the HA and the CI in noise. I scored in the 90s. With just the CI I scored in the 70s. So it’s helping in noise, or maybe the second set of sentences was easier. It seemed a lot easier.
When making my next mapping appointment (6 months, in November) they suggested I see my ENT just in case I want to talk about implanting my other ear. I agreed to this because there are monetary insurance related reasons for doing it in 2009. I’m trying not to let that influence my decision too much.
2. CI #2? 2 CIs versus 1 CI and 1 HA versus bilateral EAS
I’ve seen a lot of articles claiming that a CI + a hearing aid gives you the best of both worlds when it comes to sound, especially music. I’ll agree that this has been my experience.
We went out dancing at a club in Washington, DC last weekend. Instead of the normal bass that sounds the same with or without my hearing aids, the CI was adding the rhythm section to it. It was a nice effect and helped me appreciate the faster beat that’s on top of that boom boom boom of the bass.
I asked my audi about CI+HA versus 2 CIs and she suggested I contact a researcher. Small world, he was someone I had emailed with last spring. I owed him an updated.
His answer was that you can’t make any kind of decision without knowing exactly how well you’re doing right now. Just CI, CI + HA, HA in implanted ear + CI + HA. But his gut feeling was that Two CIs are great for localizing sounds, but One CI and One HA are better for lower tone quality and hearing in noise. He also said that they have been very impressed with CI + bilateral hearing aids. But that 25% of people who preserve residual hearing after implantation are still losing it later on.
In the end he asked if I’d be itnerested in visiting the Mayo clinic for some research at some point, so I’m waiting to see if that gets set up.
My own feelings, the CI provides SO MUCH sound, and it does not sound bad at all. It sounds very normal apart from the timbre of music sounding different than before. If I can get use from a hearing aid in the implanted ears that would be the best of both worlds… but we will see. Technology is always changing too.
3. Music lately
With bimodal hearing music sounds better than ever. My hearing aid ear picks up the sounds I’m used to hearing and the CI adds the higher sounds I’ve not heard in years.
Some singing voices still have a bit of a chipmunk-like tinge to them – not in pitch, just in quality.
The sound “Oooooooo” never sounds right.
Some instruments have a harmonica-like tinge, or a squeaky violin timbre.
Sometimes listening to a single instrument, or playing my saxophone alone, I will hear double. The HA and the CI have different qualities and in some frequencies my brain doesn’t automatically blend them into the same single sound.
For a while I couldn’t hear the difference between two notes that were a half-step apart when I was playing. This resulted in many jabs from the people sitting next to me. I seem to have gotten over that now. I need to do a listening test to see how my pitch recognition has improved.
I also bought a pair of t-coil headphones of the type that stick behind your ears. I think the quality of the sound on these is better than the sound that comes through my Med-El direct input cable. Not sure. Maybe a richer sound.
10. Using the phone, for work, for home, CapTel
I’ve never been a fan of the phone. At some point I will probably decide that it makes my life at work easier to use it… but the way things are now, my boss loves to make phone calls and so he does that all day while I type reports on the computer (something he “can’t” do, he writes things by hand and the secretary types them (even though she isn’t really a secretary)).
I still call the Cochlear listening line to see how things are sounding. This week one of the lists was impossible. Ought, It, Ash, Own… yikes.
At work I have an old school CapTel phone set up with 2 lines, but the ringer is turned off and I don’t take incoming calls. If someone leaves a voice mail I will call in to see what it is. If I could get the new CapTel that works with our digital phone lines and the internet I might be able to see caller ID and that would be excellent. I hate not knowing who is calling – it makes it impossible to predict the conversation.
On another note, I love my Google Voice line. The transcription doesn’t work perfectly, but it highlights the text as it plays the recording so you can try to follow along.
Where does the time go?
July 4th weekend my parents stopped to visit us here in Charlottesville. I had a band concert that Thursday night and another on the morning of the Fourth of July at Monticello. It’s always moving to see the naturalization ceremony conducted. Last year the guest speaker was the president (which one? not important. ) and security was tight. The helicopters flew right over our house to land at Monticello and the band had to be there hours and hours early. This year was much more calm. My parents and I actually drove ourselves and parked at the visitor center.
By the end of that concert a lot of us were quite burned out on marches. Especially Sousa! But the audiences were very appreciative.
It wasn’t very hot here that weekend, but we decided to spend and afternoon hiking around Sugar Hollow reservoir which features several good swimming holes. I ended up not swimming. The water was cold! But the hike was lovely and the crowd of people swinging on the rope into the water was entertaining
More music happen that Monday! CASE played a gig at a local assisted living center.
After my parents left I only had 3 days of work before my “long weekend” trip to Maine with Don to visit his family.
His family lives in the area known as Down East Maine. We had an easy and short flight from Charlottesville (CHO) through Philadelphia to Bangor. All together it was only 3.5 hours from take off to getting the rental car. Amazing. I’m used to trips taking at least 6 hours and usually more. Once we arrived in Bangor we still had 2 hours of driving to get to where Don’s family lives, but that is a fun part of the trip.
It was about lunch time so we stopped for… lobster rolls! Of course! There’s a road side ice cream stand snack shop that looks just like the ones you’d find anywhere else, except they have the Maine specialty. So good.
We also stopped at a grocery store and stocked up on wine.
Don’s family own a camp on a small lake that is about half an hour from their house. The camp is fully equipped, just isn’t insulated enough to be used except when it’s warm outside. I love coming up here because it is just so beautiful and peaceful. The sun rises at 5:00 am and the camp has a clear view straight North which means this time of year you get sunlight most of the day. Early to bed and early to rise is the motto when we’re there and sleeping in means staying in bed past 7! I was also asleep by 10 every night.
We visited the beach, watched lots of sunsets, swatted mosquitoes, and of course, ate more lobster.
On a hearing related note, everyone up there seemed to be talking very loud all of the time. If I wasn’t 2 months post activation with my cochlear implant I don’t think I would have been able to cope. As it was, taking off my CI and hearing aid to go swimming did not bother me At All.
Nieces and Nephew – Aren’t they cute?
Don’s dad is planning on getting hearing aids soon. Apparently he has been turning the TV up louder and louder and was told he should have his hearing checked. I’m curious to see how he does with them. I won’t be surprised if he enjoys slipping back into silence quite often.
So we swam in the lake every day in Maine. I took my shorty wetsuit and the kids picked on me about looking like I was going diving. But hey, I stayed much warmer than in previous years. When it’s barely 70 degrees out and the water is about that temperature it’s nice to have some extra warmth.
Now we are back home and I have just three weeks until my next fun adventure. In the mean time I’m waiting to see how many trips I can be sent on for work in that time. One, Two, or hopefully None.
I play saxophone in the Charlottesville Municipal Band, specifically tenor saxophone. I found the band after moving to Charlottesville in 2006. I waited until January of 2007 to join though as I didn’t get settled in at my job until late October and it’s always easier to join a group right after a concert. So we attended the 2006 Holiday Concert and in 2007 I became a member.
There are almost 90 people in the band but overall I find the instrumentation quite well balanced. We have a decent rhythm section, and I believe as many as 5 tuba/euphonium players. The sax section seems to hover around the size it should be. If we are short saxes then there’s a clarinetist or two who can help us out, and if we have too many, we can send them back to the clarinets.
We play around 10 concerts a year with 7 in the months of June, July and August. This weekend, being July 4th, the band is playing a lot of Partriotic music. We have a concert tomorrow evening starting at 7:30 in the Pavilion downtown. If anyone is going, let me know, there is free parking available at the Lexis Nexus just off of Market St: http://tinyurl.com/bandparking
We also play music before the annual Naturalization (citizenship) ceremony held every year on July 4th at Jefferson’s Monticello. Last year the (then) president of the US was the guest speaker. The band had to be on the bus to the site at 6am, had to pass through the metal detectors and was surrounded by secret service the whole time. This year the guest speaker is Virginia Congressman, Tom Periello, and the band’s bus doesn’t leave until 8:30 am.
The next two concerts should provide All the patriotic music anyone could ever want… (and then some?)
Days of Glory
Irving Berlin’s songs for America
American Anthem – Tuesday Folder
Fairest of the Fair – Jim Simmons conducting
Armed Forces Salute – Tuesday Folder
Washington Post – Tuesday Folder
Albemarle Overture – Tuesday Folder
Americana Two Step
Men Of Ohio
America the Beautiful
Stars and Stripes
I can’t get myself to start typing this because I’m listening to music on my iPhone (built in iPod) and I’ve managed to load lyrics to almost all of my 1500 some songs. If I type then I can’t read along and the lyrics get lost.
Music is sounding pretty good, even with just my CI. The bass is a bit tinny… the vocals quite squawky, chipmunky but not high pitched. I can recognize Frank Sinatra as Frank Sinatra (very low voice).
Songs that I know really well sound the best. For the curious this includes all the songs from RENT, a few Moxy Fruvous CDs and a couple of Phish songs… But not the Damien Rice album I bought right before my surgery… and not any of the albums that came from Don’s CDs.
I’ve noticed in band as well as in recorded music that sustained notes will have a very accurate pitch, but short notes sound monotone. If I know the song I don’t notice this too much though. When the band plays a scale it sounds very monotone because the tones are far from pure with 90 of us playing at one time. This takes me back to 5th grade band though and the first time we ever heard a band from sitting within the band… it was a new experience.
The Sound and Way Beyond aural rehabilitation DVD has a lot of music practice exercises. I can’t hear the difference between notes closer than 2 semi-tones. This means that when I’m playing in the wrong key I don’t notice at the first wrong note. But I use a million visual cues in band. I watch the fingers of the people next to me, I watch their toes, I watch the director, all while reading the music. No wonder I miss the key change! I’ve made a point to pay closer attention to them after missing every single one at one rehearsal.
Also on the Sound and Way Beyond DVD is a listening exercise that would be tricky with perfect hearing – it plays 2, 3, 4 notes and you have to choose what they are on the staff based on the starting note. It would be better if you could experiment until you found the right interval by ear rather than getting just one guess and a right or wrong score.
Another music exercise involves identifying different musical instruments, but you’re supposed to be able to tell from one note if it’s a trumpet, piano, violin, etc. I don’t know how good their recordings are. I can hear the difference between them all, but I can’t easily pick out which one it is with just one note to hear, except maybe the piano.
I listen to music every day on my way to and from work in my car but of course that has a ton of background noise too from being on the road.
Bass is still a bit thin and rumbley rather than musical. I’m working on setting up a bilateral / bimodal headset. I ended up with 2 med-el direct input cables on accident somehow so instead of buying a bilateral one I’ll probably buy a $2 dual connector/splitter from radio shack and plug both into that. For some reason my FM system won’t consistently switch to direct input anymore, but I might be able to use it via bluetooth for my iphone now.
ETA: Ironically, one of the worst sounds for me right after activation was saxophones… I have a ton of saxophone ensemble recordings that I know very well. I’m happy to say that they are sounding Great now. I’m currently listening to Beppo’s To Ballard by The Tiptons (http://www.youtube.com/watch?v=2-159j-
I finally got around to taking some photos of my cochlear implant and accessories. It came with a lovely briefcase in the color I had chosen (reddish). The Opus2 consists of, from top to bottom, the ear hook, the processor which attaches to the wire going to the magnet coil head piece, and to the power pack. The power packs hold the batteries and can be exchanged to hold either rechargeable or disposable batteries. Then there is the cover that slips over the power pack and batteries. This cover can be just plastic, or can contain a 3-prong direct connect plug at the bottom.
Here’s a link to the photo album if you can’t see the slideshow: Med-El Duet2 on Flickr
I love that I don’t have to be stuck with one type of battery or another. The rechargeables are great but only last about 10 hours. If I ever get out camping or sailing or somewhere away from a normal outlet then I’ll be happy to be able to use disposable batteries during that time. I’m told that 3 disposable batteries last about 3 days.
I also use the direct connect cable a LOT. I’ve just finished reading and listening to The Count of Monte Cristo and highly recommend the original version even though it’s really long. Leaving the cover with the direct connect plug on it makes the processor longer and heavier behind my hear, but I don’t notice it much and it’s nice to be able to plug in to my iPhone whenever I want to without switching the parts.
Lastly, I think it’s funny that they made such a big deal out of choosing the color I wanted and then gave me all six colors as covers. You can see that one I’m wearing has a bit of black in the middle of it. This is the rechargeable power pack being black and the processor and cover being red. I think it’s cool.
I was really looking forward to a new Map since most people seem to get a bunch of them right away after their activation and here it had been 16 days before I got my first new one. Even so, and even after 15 years of hearing tests, I was nervous about the testing they would put me through. I even told my audi, please, no words or sentences today? Just beeps? Right.
So she tested my residual hearing first with ear inserts. My right ear (implanted) is still not quite back to a normal tympanogram and I can feel some fluid in there still. It’s only been 3 weeks since surgery, no surprise. So there’s still a chance more residual hearing will come back to that ear, hard to tell yet. It is already a lot better than when they tested it 5 days after surgery.
The beeps with the CI were played through a speaker in the corner of the booth and were harder than I expected. I suppose a hearing test is always hard since you have to struggle to hear the quietest you can hear. I still have tinnitus which makes listening for the beeps harder than it should be. Tinnitus always seems louder during this testing than any other time.
After creating this new audiogram my audi asked me to do some sentences for her. Pretty sure she said “just try” and well what am I going to do? Refuse? The voice was a very strong male and the sentences were a mile long some of them. This was my first “CUNY” test. I wish they had done it before so I could compare. The next test (”just try one more?”) was HINT sentences which I had done before. I was surprised at how quiet the voice was and I missed the first few sentences completely before I got into it. With sentences I usually get something so I was surprised that I couldn’t hear a single word in some of them. I still scored 34%. My HINT scores pre-CI for that ear was 16% (though with both ears it was close to 60%). And then one final test, the single syllable CNC words. I managed to get 8%.
The funny thing about the CNC words especially is that my database is broken. You see, I always take a guess at the word. Even though each word sounded like ‘blah’ to me, I would guess (except ‘cute’ sounded like cute). I had a database of words in my head that matched each ‘blah’ that I heard and I usually scored 20% or so. Now, with the implant, the ‘blah’ that I’m hearing is more like ’sqckt’ and I don’t have any idea how to guess that word! I’m hoping that my hearing improves enough that I don’t have to come up with a new list of imaginary words for my database, but time will tell.
I really try to avoid seeing the lists for any of these tests at all costs for fear of skewing the results. Any time they start the HINT test with the list that begins with ‘The boy fell from the window’ I ask for a new list.
Having Monday off work threw my timing off on this post a bit. Or maybe just procrastination.
First - I have a new audiogram and CUNY, HNT and CNC scores for my right (CI) ear, but I’ll put that in another post so it will be easy to find later.
Big events of my third week with the CI:
Saxophone ensemble rehearsal and band on Tuesday. Well my battery died halfway through sax ensemble so I didn’t get much time trying it out. I’ve been going bimodal (HA in left hear, CI in right) for band so far, and my hearing aid is sounding a lot more normal than it did a week ago. This is a good thing and gives me reassurance that eventually the bimodal option will work well for me.
I am still wearing the CI alone most of the time as I’m told by my audi and others that this is the best way to adapt to the CI. Now that my hearing aid doesn’t sound awful in combination it’s a bit harder to convince myself not to wear it, but it’s become habit. I don’t even bring the HA to work with me anymore. I do put it on when I climb into bed at night though. The CI falls off when pillows are involved, and I like to be able to hear. I’m one of a strange crowd that sleeps with my HAs in. I do usually have to turn them down to avoid feedback though.
At work I have an informal agreement with my boss that he makes the phone calls and I write the emails. This works pretty well and I’m sure he would be as disturbed with my phone call attempts as I am with his email attempts (he writes the entire message in the subject line or worse, puts the important part in the subject and something totally unrelated in the body). Even so, he does call me into his office to sit and listen in on phone calls. This can be entertaining or maddening depending on my mood and how much I know of the subject of the call. I have to always remind him to try to turn to face me while on the speaker phone so I can at least lipread him to follow half of the conversation (once he turned the PHONE to face me, not helpful!). With the CI, and believe me, I don’t expect to understand a speaker phone any time soon, it sounds like beeping robots again. So I have quacking for his half and beeping for the phone half. If I had my own office I would be using the Cochlear telephone training to practice listening to the speaker phone. As it is, not sure my neighbors would appreciate hearing Rumpelstiltskin (this week’s story).
Thursday I had an appointment at UNC for a new map. This was 2.5 weeks after activation, so I was really excited to have things adjusted. I told her that certain sounds were making me cringe but that other than that things seemed to be going fine. She asked what kinds of sounds and I told her plastic bags from inside cereal boxes, my keyboard clacking at work, dishes being put away, but mostly plastic bags. She put me in the booth and based on my audiogram told me that unfortunately she wanted to boost the high frequencies some more as they were only in the 30-35 dB range (0-25 dB is “normal” hearing).
She hooked me up to the computer software and we created a new map by going through each electrode and turning the level up until I felt the level to be between “Loud but Comfortable” and “Loud”. All levels went up some. As we reached the upper four or five electrodes I started to notice a pulsing twitch in my right jaw area. It didn’t hurt, just a bit weird. So we didn’t turn them up beyond that point. On the 10th electrode my right eye was also blinking involuntarily and my whole face was twitching. She turned that electrode off (11 and 12 were already turned off due to shallow insertion of 20 mm).
I saw some of what she was doing with the software. Having those electrodes turned off does not mean I receive less of a frequency range. The frequencies can be adjusted in how they are spaced across the electrodes. For example, I noticed that my audi set up two of my programs (four available total) to only go from 250 Hz to 5000? Hz. The other two programs are set up for lower (maybe 80 or 40 Hz) to 7000 Hz. This explains why I thought the first two programs were better at canceling noise in the car. Less frequencies seems to equal less noise. And technically, the second programs with the larger frequency range should be better for music.
Med-El’s Opus2 processor has two coding strategies: HD-CIS and FSP (Fine Signal Processing). A coding strategy (very simplified explanation) is basically how the cochlear implant processes acoustical information (sound) and converts it to electrical pulses sent to the implant. If I understand correctly, Med-El’s HD is the older strategy and FSP is the newer one. The FDA has only approved FSP officially for people who have been activated for over 6 months and for those who are not acquiring language (i.e. kids). I was told to try both of them and see which I do better with, but not to switch back and forth rapidly as this will confuse my brain. I switch back and forth sometimes, but while the HD-CIS seemed clearer for speech at first, since I have gotten used to the FSP I like the sound of it better. (Here is a press release about Med-El’s FSP)
I’ve decided to ask my audi what she is hoping to accomplish with each adjustment she makes. I won’t ask her until after she lets me express my opinion though because I know how easily you can agree with a suggestion once it’s suggested (this wine smells like cherry, chocolate and coffee, don’t you agree? Oh yeah, I DO smell that!).
I wasn’t sure whether I should take my “briefcase” along to my appointment but I’m glad I did. We also ran into some confusion about who gets what color processor and accessories apparently. I had wanted a longer coil wire and a processor/battery pack that clips or pins to my shoulder as my 2nd processor. Instead I got two that were the normal BTE (behind the ear) set up for both processors. So we found one of those for me from the spares they had in the office, but I may have to give back a few extra pieces at some point. Not sure as she let me keep them for now. (I currently have 2 disposable battery pack things, plus the shoulder worn one, and two FM/input covers, and the rechargeable battery pack thing).
So, what am I hearing now?
The new Map didn’t affect me too much. My office at work is a lot less quiet than it was before, but turning down the sensitivity fixes that if I need to focus. Thankfully the cringing at plastic bags has gone away! Maybe it was related to that 10th electrode. Dishes are still painful, but I’ve gotten in the habit of removing the magnet to empty the dishwasher rather than avoiding that chore completely.
I discovered on the (looong) drive to and from NC that I could sometimes almost hear the bass to music with the residual hearing in my left ear. So that led me to turn the subwoofer up a few notches, turn the CI down a few notches and turn the radio up a bit. Very nice bimodal hearing that way, though it made the car shake.
I discovered that my own voice, when I sing (sing as in lalala, not sign as in with your hands), it sounds on pitch, and it matches what I can hear with my other ear (when I plug that side to listen). I’m not saying I can sing well, but it sounds decent to me. Still has a amplified sound that isn’t natural (like listening to yourself when you are speaking into a microphone and PA system).
On a related note, my sax ensemble played at a private party (hosted by our ensemble leader ) on Sunday. We only had four of us so the quartet music had a different sound than when there are seven of us. I thought a few times that I could hear the alto or soprano part (I’m the tenor) playing the same rhythm as me but as a harmony part - but then I’d realize that I was hearing myself playing my own part through the CI. Quite odd. I need to practice by myself and see if I can get used to that.
The wait to see the surgeon was very long but he said everything looks great and he doesn’t need me to make an appointment again, he’ll just drop by while I’m there. This is a Good Thing because he is always an hour or more behind schedule. He asked me if I was happy and I was non-committal, but the potential to be really happy is there. The roaring tinnitus is about gone and my residual hearing is still there (I’ll cover that in the other post about my latest hearing test).
I think that’s enough of an update! I have another Map scheduled for a week from Friday and then probably nothing until my 3 month appointment in 9 weeks.
A month or so ago I was contacted randomly on Twitter by a guy named Dan Schwartz. We chatted a bit and it was a somewhat interesting conversation but the guy was obviously closed minded, ignorant and opinionated. When he called someone a cu*t I un-followed him. When he started going off on someone about Deaf culture, I blocked him. I figured that would be the end of it, but he’s still bothering me and a lot of other people. I feel like it’s my duty to at least try to warn them… or something. I know, I know, Don’t feed the troll… but when something bother’s me, I’m likely to blog about, and who knows, maybe someone else will appreciate it too.
My biggest problem with this guy is that he searches for ANY person on Twitter who mentions hearing aids, hearing loss, deafness, cochlear implants, a kid with a hearing loss, etc - he contacts them, and if he doesn’t agree with them, he starts bashing them. When HE was the one who made the initial contact! Who does that?? And once you’re on his radar he keeps talking about you even after you’ve blocked him. For example:
This is the conversation that was the most unbelievable - starts of friendly and deteriorates rapidly.
I’ll let the rest of these speak for themselves, but note that I only read back a day or two to find them all.
To the 7 new followers in the last hour both hearing impaired & hearing, Welcome Aboard! And to all of you “Deaf Culture” trolls, Get Lost! (link)
Ironically he’s telling people he doesn’t agree with to get lost, but he’s the one who keeps talking to/about them. YOU get lost, Dan.
This is one of my favorite videos about cochlear implants - especially the part about the damaged hairs and when a hearing aid won’t help… After the ‘how it works’ part there are three testimonials from people who chose the MED-EL brand. I’m sure every brand has people willing to go on camera and oooh and ahh over their implant. I had to break it into 2 parts to get YouTube to accept it. The subtitles got a bit fuzzy too, I hope they are legible.
Also apparently the sound on the 2nd video is the same as the first. I don’t know how that happen unless Quicktime didn’t crop the sound when it cropped the video. I might be able to fix it, but until then, turn the sound off and read the subtitles.
We were covered in pollen which coated the new patio furniture no matter how often you brushed it off. When it started raining four days ago we were relieved. Everything was now so fresh, green, cleaned off. Today was the fifth morning to wake up to gray skies. It poured last night. A huge thunderstorm. I heard the thunder, a low beepy sound that I didn’t place until my friend asked if I had heard it. I heard the rain on the roof too.
About an hour ago the sun came out. The deck chairs are soggy and dripping but the boards of the deck are already dry from the sun.
Birds. They were what I told people who insisted on knowing what I wanted to hear with my implant. Well folks, complete success here. They might be robotic birds or synthesized birds, but they are definitely birds.
I need to learn to recognize them. One is most dominant. Almost sounds like a phone ringtone.
The others are less distinct and more chirps rather than a long song.
(Edited to add: I think it’s a mockingbird. But he’s only doing one song, so maybe it’s one of the birds that he’s mocking.)
When the wind blows I can hear rain falling from the trees. Water has the most complex sound I’ve encountered. Flushing the toilet should be something every newly activated CI patient is warned about. Picture a keyboard on an organ voice which sustains as long as a key is pressed and then picture a child leaning across the upper half of it pressing all the keys at once. That is the toilet flushing.
Everything is still sounding very robotic and synthetic. I’ve been reading The Count of Monte Cristo on my iPhone for several weeks and now have it on tape to listen to as I read. Sometimes my eyes wander ahead of the reader and when I realize it I will be lost momentarily. But I haven’t yet been unable to find my place.
Despite all the robots and scifi sound effects of the whole world, I can tell there is great potential. In noise, the car and even when we dined at a packed restaurant before a big concert we had forgotten, I could still distinctly hear Don’s robot beeping over the din. I
couldn’t understand him any better than I can in quiet, but I could separate him from everything else easier than I Ever have been able to with hearing aids. I hope that doesn’t change when the robots leave me for chipmunks and quacking voices.
Yes, folks, don’t hate me, but I was activated yesterday, barely 5 days after surgery. It seems pretty common to activate that soon with the MedEl implants, but I’m not exactly sure what factors into the decision on how long to wait. After Don told me that the surgeon originally told him we could remove the bandage after the weekend I was debating all weekend about keeping the appointment Monday. What if they didn’t do anything except take the bandage off (which I could do myself?). It seemed too soon to do the activation and I didn’t want to drive 4 hours each way for nothing… Thankfully I got an email from the audiologist around 9 am saying to come, that they were really busy but would have time to activate me! Into the car we went, leaving a little before 10. We got there around 1:15 and had lunch at Chipotle arriving at the hospital at 2 on the dot. Then waiting and waiting and waiting. Is it just UNC or do a lot of families go to the ENT office together? After waiting in the waiting room for over an hour I was taken back to see the surgeon. He just slid the bandage up over my head. Don told me I had some tape or a bandaid behind my ear still. My ear itself doesn’t seem too numb, this is good because apparently that can last a long time. The area of my head behind my ear around the incision is definitely numb though. The surgeon was very curious about my residual hearing and got out a tuning fork which I couldn’t hear at all. I’d guess it was 1000 Hz - pretty high. The musician in me needs to ask more questions. I could hear it in my unimplanted ear ok though. He took me right off to find the audiologists and do a hearing test. Thankfully it seemed like they were just finishing up with the person before me, so the wait wasn’t long. The AuD student who works with the audiologist took me and tested my hearing. First the tympanogram - totally flat. I can tell it’s stuffed up and that confirmed it! It should subside in the next few weeks. Even with that much stuffiness (fluids or swelling or both) I could hear at, and I’m guessing as I didn’t have my glasses back yet (another story) 250 Hz at 70 and 500 Hz at 100 and maybe the 750 and 1000 were still there around 120 dB too but I’m not sure. The audiologist explained to Don that that meant I would be able to tell if something was crashing around me. I find it funny how little importance they give to the low sounds sometimes. She was curious and also tested the hearing in my unimplanted ear - she’s a researcher and very curious it seems - it was the same as before. We talked about cochlear implant research and how she’d love to include me as one of her guinea pigs. I said absolutely, might as well be useful to others if I’m driving that far for an adjustment. I do find it fascinating myself. If it didn’t mean tons more school I’d think about being a hearing researcher… funny how UNappealing that idea was 15 years ago. Oh well. That out of the way, I got a short demo of the CI processor itself and it was time to stick the magnet on my head and turn things on. The actual process is pretty simple - the computer screen has what looks like a sound equalizer / mixer board with 12 slides, one for each of the electrodes. I only have 10 electrodes so when we got to the last two there was no sound and we shut them off. (Only 10 as the surgeon wanted to save my low frequency hearing which is at the deepest part of the cochlea - so when he got 10 inserted he stopped and didn’t go any deeper). I was surprised that each pitch came in so clearly. Very distinct notes - like pressing down on a synthesizer key. They ranged from medium high to super super high. I haven’t heard anything that high in years. I was supposed to tell the audiologist the loudness on a scale of 1 to 10 with 8 being maximum tolerable, or something like that. I wasn’t really sure what max tolerable was and she was cautious about going up too high. There was no pain from the noise, no pressure, not like turning the volume up too high. It would be more like twitching inside your head or feeling dizzy I think. We didn’t go up that high yet. We did all 10 and then she said she was going to turn it on. She’d already made me turn off my hearing aid. Ever since then, the only way to describe things is like a Sci-Fi sound track. I wish I had watched more SciFi so I could tell you what things sound like exactly, because I know I have heard these sounds before… The rest of the next hour or so was spent lipreading Meg as she explained all the gear I was getting. I can’t believe that one tiny little processor (ok, two as they give you a backup one) needs a huge box with brief case. Everything is in it’s own little box. Batteries, cables, different covers for everything. The packaging is insane. Combined with lipreading I could understand the beeping coming from Meg as long as she was the only person talking and she kept it fairly slow. If Don commented something from across the room it became a mess of beeping and twittering, usually because he’d make Meg laugh. Without lipreading it was pretty much just beeping. Right after I was turned on the audiologist was there and she started reciting the days of the week while I lipread her and repeated them back. Really simple of course, kind of like lipreading lessons where you can’t hear anything, except I could hear her beeping like a robot or a synthesizer, a synthesizer set on robot voice I guess. After going through the days of the week a few dozen times she had me close my eyes and keep going. Yes, I could hear the difference between them. It was all beeping, but even with beeping Wednesday sounds different than Tuesday sounds different than Monday. They were super impressed, Don’s still going on about it. No big deal to me, as my brain was just matching up beeping with familiar words, but I guess, a lot better than hearing nothing right? One thing I’m going to have to be careful about is being annoyed at people who think everything is fantastic or amazing or whatever. I try to explain what I’m hearing and how different everything is and they just say that must be awesome!! How wonderful!! I was not deaf before, people. I’ve heard sounds my whole life. If you heard sounds like I’m hearing now you would think you’d lost your mind. Seriously. But things are going well. I dreamed about a baby alien beeping in my head. It’s hard not to laugh at how funny things sound. Mostly I’m overwhelmed. Overwhelmed and totally fascinated at the same time. I’m finding Twitter a good place to post my thoughts - these blog posts tend to become a ramble after a while. <p><a href=”http://tweetpaste.thingamaweb.com/
I’ve been poking at things all day. First it was a nice glob of dead skin that loosened up in my implanted ear. Probably a cross between surgery and just not wearing an earmold for a few days.
Then my bandage started sliding down over my eyes and my hair is slipping around it in many placed. Like a little girl who wears the same braid for a few days, it gets messy.
Well just now I was running my fingers along my scalp above the bandage and hey, there’s a bump here. That’s weird. It’s definitely not matched on the other side.
Turns out that’s the implant. I’d guess it is an inch or so above the top of my ear but I can’t tell because the bandage still covers my whole ear. I guess I didn’t realize that it could be so far above the incision and my skin was stretched down over it.
Well I guess they did something to me after all. Though Don’s response to that is “I could put a lump on your head!”
I was going to add this to the previous post but decided to start a new one here:
Hearing preservation was a goal of mine and my surgeon going into my CI surgery. We did implant the worse of my two ears, but I had a fairly significant amount of hearing in the lower frequencies. As a musician I’ve found that hearing aids work pretty well for music, so why not try to save that hearing?
They used the MedEl Medium electrode which contains 12 electrode pairs spaced more closely than the normal MedEl deep insertion electrode. For me, the electrode array was only inserted to 10 of the electrodes as deep as 20mm in order to save my low frequency hearing. Even so, this should give me plenty of stimulation from the CI alone.
On a related note, I finally understand exactly why I didn’t qualify for the MedEl Hybrid CI trials. The hearing aid part of the DUET processor is not designed for a profound loss. Simple as that. It doesn’t mean that I’m not a good hybrid candidate, just that the technology they are using is not as powerful as I would need. A regular hearing aid worn in conjunction with the CI processor would give me a similar listening experience as the hybrid, and we will be looking into that if it turns out that I have a lot of residual hearing left and like the way things sound.
I don’t have an activation date yet - but I think it will be some time next week. I’m scheduled to see the surgeon on Monday afternoon but we will be calling them on Monday morning to see if it is necessary to make the trip (3.5 hours each way) down there just to have my bandage taken off. One thing I missed in my drugged state post-op was that the surgeon told Don that we could remove the bandage ourselves “after the weekend” (Sunday night? please?). If all looks like it is healing fine, why drive that far for a 5 minute checkup? The main waiting point for activation at UNC seems to be the amount of swelling that you have - the magnet won’t stick if there is a lot of swelling. So my tentative plan is to reschedule for later in the week and do the post-op checkup and initial activation at the same time. We’ll see what they say Monday morning.
I’ve been very fortunate that my company has a short term disability benefit. I don’t need to return to work until I am quite ready. I have some reports to catch up on though so will probably work from home this coming week. I feel pretty good, but definitely don’t want to find myself in the (filthy) test lab gluing fiberglass cloth onto insulation until things are totally healed up.
Surgery went fine. Everything fine. I just got home (8:30pm) - exactly 12 hours after they took me into the OR.
Where’d my 12 hours go? Well, 3ish hours for surgery, 4ish hours to wake up enough to be able leave (did I tell you I spent 10+ hours in the car yesterday between work and driving to UNC?) an hour or so to actually do the leaving, and 4ish hours to get back to town, fill the prescriptions, pick up ice cream and come home.
The first dose of Percocet wore off 3.5 hours ago and I took Tylenol in the car (around 5:30? gotta pay attention, Don says 5:50).
The Percocet made me feel awful, so I’m planning on taking it unless I’m still awake and can’t sleep 5 hours from now. He didn’t prescribe an anti-nausea medicine I don’t think…. haven’t read the details on the packages yet.
The subject line of this post is, of course, a quote from Miss Scarlett O’Hara. It doesn’t apply to me now, but it was exactly what I was thinking all through my drives yesterday and the 3 hours of waiting between waking up and being taken in this morning.
The biggest, no the ONLY, mistake of the day was giving Don the wrong phone number for my parents. They had to wait an extra hour to hear from us because I wasn’t awake enough for him to explain that the number wasn’t working. The first hour and a half I was keeping my eyes open for 5 seconds at a time, the second hour maybe 20 seconds as I was able to Tweet on twitter at that point, but only once. The third hour I was up to a minute maybe, but still definitely struggling. I remember thinking “why should I wake up when I’m just going to sleep in the car all the way home.” It was after 3 when I got my clothes back and Don went to get the car around 3:15 or so.
The laptop screen is making me a bit dizzy, but my iPhone seems to be better.
This post is way too long anyway, how will I convince any of you that I feel gross?