Thursday, March 14, 2013

Research study, day one :)

I know it's been a long time since I've written anything here. When you're implanted, everything is new and exciting and overwhelming. There is a lot of adjusting, learning, and reflecting that goes on in those first days after being implanted. Everything is noteworthy. It's all big news.

After a while, though, everything calms down and you just fall into the process of hearing and living. There are still minor adjustments from time to time; new processors, new software, new mappings. But for the most part the brain knows what it's doing and you just hear. I haven't blogged in a very long time mainly because there has been no new news on the hearing front. In the "life" front, oh, yes. But the thing about having a hearing loss blog is that people mainly want to hear about hearing loss related things. So I'm staying on topic!

The Vanderbilt research study fell into my lap a few weeks ago. A friend posted on Facebook that she had gone for an adjustment and loved it. I'm always up for anything new that people LOVE so I asked about it and was put in touch with the research coordinators over at Vanderbilt. I met the criteria, they found my records, and we scheduled an appointment.

I'll be honest: I did not go into this study with high expectations. I hear well. I have good comprehension. I score near 100% in quiet most of the time. I hear all manner of tiny sounds. I told several people that I could not be too impressed with better comprehension in quiet, but better comprehension in noise, yes; and better sound quality, yes. If this study could deliver on those two items it would earn my respect.

The basic premise of the study is this: due to several factors, mapping cannot be a one size fits all proposition. There are physical variations from cochlea to cochlea. There are changes due to how far the electrode is inserted into the cochlea and what areas it stimulates with which electrodes. Multiple electrodes are beneficial for stimulating various areas of the cochlea, but due to differences, occasionally the electrodes will actually overlap and cause interference with each other, or the adjacent electrodes will stimulate the same area, which is unnecessary. So this study proposes to change that by reviewing post-surgery CT scans, assessing the location of the electrode in relation to the structure of the cochlea, and turning off electrodes that are either redundant or causing interference.

The prospect of turning off electrodes freaks most folks out. I know it did me when I had one turned off several years ago due to a mapping issue. I was so freaked out that I cried. I really had no concept of the fact that if you turn one off, the brain adapts and redistributes the load among the remaining electrodes. The first day or so was an adjustment, but I was really surprised that after that, I really couldn't tell much difference. That is how plastic the brain is; it truly takes these changes in stride really well. Armed with this knowledge, I was better prepared when I went in for this study. Turning off an electrode or two wouldn't hurt a thing, and if I didn't like it, they would give me back my old programs after three weeks. All in the name of contributing to research for the benefit of ci-borgs everywhere, right? :)

Of course, there's no research without "before" and "after" testing, so into the sound booth I went, for testing in quiet, testing in noise, testing in conversation (argh), and a test that I had never had before and absolutely hated, a "spectral resolution" test. Basically, I was asked to listen to three bursts of static and tell which one of the three was not like the others. Considering that static is a sound that grates on my nerves horrendously, I was so relieved when that test was over :)

Then we moved on to the programming. I was expecting to have an electrode or two turned off, but was a bit startled to see the piece of copy paper with numbers scrawled on it; a total of seven electrodes were on the agenda for a three week vacation. Seven?? Out of sixteen? I expressed my surprise and Rene told me that the most they had ever turned off was eleven (out of 22 in a Cochlear Americas device). In the name of science, I gamely watched as she turned off the seven. Then we went to live speech. Immediately I told her that my high frequencies weren't right; I was missing the hiss of the "s" and the "sh" sounds. She raised them up a bit but assured me that I could still hear them. She held a screen over her face and ran through several consonants and she was right; they were all still there. She and I talked for a few minutes and I was surprised with the sudden masculine tone that had taken over my own speech. That was a new one; my voice had never before sounded quite so deep!

However, the biggest change was immediate: voices took on a smoother quality. I don't know best how to explain it, except to relate to you how voices often sound to me. I have told people for years that I can only listen for a few hours at a time, because after a while, my nerves are so jangled from all the sound that I feel like I'm going to explode. I'm sensitive anyway. Yes, I know. I am the Princess in the Princess and the Pea story...tiny things get on my nerves in a huge way. I can't sit at the dinner table and listen to all five of my children and my husband talk for more than about half an hour; after that, I feel like snapping at people. I love what I hear and I love being able to hear it, but it absolutely wears me out. In the spring and fall when the Meniere's symptoms kick in, extra-grating low frequencies usually cause me to ditch the processor entirely. Restaurants are the worst; by the time I leave I just need to lock myself in the car for quiet time for a while. So this smoothness was noticed immediately. Sounds were still clear and concise but they blended into my environment a little more seamlessly then they had previously.

Rene asked me to repeat the spectral resolution test at this point. There was an immediate difference; I scored 12% higher immediately. I was able to ascertain differences in static sounds. Wow.

I voiced my mild dissatisfaction with a couple of items before I left, but it was more thinking out loud than true complaining. I'm used to paper making a certain sound when I crinkle it. I'm used to not being basso profundo. I'm used to some sounds being louder. HOWEVER, after being implanted for five and a half years, I do know this: the brain adapts. What you hear the first day of a new map is not AT ALL what you will end up with. It changes by the minute at first, and changes continue for several weeks and months occasionally.

I entertained myself singing scales in the car. Dooooo. Reeeeee. Miiiiiiii. Faaaaa. Soooooo.....ugh! G was horribly discordant, splitting into this mutant buzz that both annoyed and amused me. Especially since I still sounded like a man. I listened to acappella worship music in the car and tried to sing along, but finally gave up in amusement; it just sounded absolutely ridiculous.

When I got home, I threw my phone and purse on the bed and went to the bathroom. When I came out, I headed for the bed to sit with the laptop and peruse Facebook and WHOA. The TV? The one that's on 24 hours a day with nobody watching it except when Duck Dynasty comes on? I could hear the voices clearly, across the room, from literally twenty feet away. I never even NOTICE the TV being on. I could hear it before, yes. I could hear voices before, yes. But usually it's just there. The voices were literally leaping from the TV. It was startling. If I close my eyes, I can understand some words.

I listened to the same CD on the way to Bible study last night. The change was enormous, four hours later: the music was clear. No more mutant buzzing. And surprisingly, it sounded clearer than I could remember it being before. I actually got emotional in a couple of places because I was startled at how clear the music was. A little overwhelmed at how quickly these changes take place. Panera with the family was a startling contrast to our usual family dinners; the overall loudness of the room didn't seem as harsh and grating. Voices did seem clearer and smoother, if quieter. I found myself realizing that I was listening to the photo equivalent of a DSLR shot compared to a regular digital camera shot; clearer and smoother. Of course, since the frequencies are still settling, it's one of those photos that has a crazy filter applied to it...smooth and clear but the colors are a bit distorted. I don't have ClearVoice right now so quiet voices were still too quiet. I did have to ask Rachel to speak up a time or two. Church was too much. I did fine in class but when we got out to the auditorium for our devotional time I had just had enough...too much distortion in too loud of a volume for me to be able to process. A lot for the first day!

I am not one of those people that usually wears the ear from sun up til bedtime. I prefer my mornings quiet. Nevertheless, in the interests of science, I have had the ear on for a while today. I've listened to the TV, I've listened to YouTube, I've sung the scales (quietly, as not to annoy the sleeping son). The scales sound good now (okay, the scales sound about as good as a deaf girl can sing 'em). Still a little on the deep side, but progress, all the same. Interestingly enough, in the time that it's taken me to write this post, the sounds have changed; I wasn't able to clearly distinguish the clicking of the keyboard earlier and now every key has the distinctive click again.

It's too early to call a clear winner, but based on clarity alone, I like it. It's too early to tell if the overall smoothness and lack of jarring quality will last or if it was a one time thing based on a good weather day. It's far too early to know for sure what sound quality will sound like in a week or two weeks. As I stated earlier, an increase in comprehension in noise and an increase in sound quality are what I'm looking for. One thing I don't want to lose is comprehension in quiet. I have my standards set pretty high. I'm trying to remain as objective as I can, but so far, I'm very impressed.

I'll be posting sporadically over the next couple of weeks, updating, and I'm hoping that they'll allow me to share the full results at the end of the three week trial. I asked if there was anything that I couldn't share and was told that I could talk about any aspect of the testing that I wanted to, so I'll abide by that unless told otherwise at a later date.

Rene said that since the publication of the article about the process they have been absolutely swamped with requests from all over. The potential of this study to help people hear to their potential is really impressive. They are trying to accommodate as many people as they can and if the results speak for themselves, there's a lot of hope that it will soon be available on a much larger scale.

Seriously exciting stuff, folks :)

2 comments:

funnyoldlife said...

That's really interesting. I hope it comes to this side of the pond so I can try it out.

It sounds similar to the pitch perception testing I did, they turned off 3 electrodes on each side. I listened to pairs of beeps and had to tell them when the beeps changed in pitch, were the same, or different. For hours. Arghh. But it was worth it.
http://funnyoldlife.wordpress.com/2012/06/05/sound-all-around/

Michael said...

Thanks, Jennifer, for posting this. I've found that with my four most apical (= toward the apex) electrodes turned off, I do better. So it doesn't surprise me that you're doing better with electrodes turned off, though it's intriguing that they turned off seven. That sounds like a lot, but then again, I know that CI researchers say that even with 16-22 electrodes, CI users hear no more than 4-6 channels. So maybe this is proof of that. Thanks for putting up your observations!
Mike Chorost