Thursday, March 21, 2013

One week:

...and I still love my new mapping.

I was invited to be on a cochlear implant panel in Chattanooga over the weekend. All the manufacturers were represented and we had a good discussion about the impact that implants have had on our lives. It was more of an "experience" panel than a technology one. I spent the weekend with the wonderful and very gracious Ruth Fox and her husband Gary, and Ruth's friend Margo Klug from Michigan. I had never met Margo before but was prepared to like her on first sight based on reports from others who loved her. I absolutely adored her. Ruth was the veteran implant user in our group; she's coming up on her 26 year cochlear implant anniversary. Margo wasn't far behind her, at 24 years. I absolutely LOVED picking these ladies' brains and hearing about their experiences. In return, they enjoyed hearing about my experience with this study. We put the program through its paces thoroughly. Church, implant panel, the mall, noisy restaurants, road noise, the Hallmark store with its singing Easter display. Margo and I stayed up past midnight every night talking then we'd get up and start again bright and early the next morning.

A few observations:

Over the time that I was in Chattanooga I noticed a big difference in the changes in my hearing. When I first got there on Saturday afternoon I was still adjusting to the new sounds, but by the time I left on Tuesday afternoon I was hearing very comfortably. Music sounds clear and harmonious, I hear much better in noise than I thought I would, and conversations in quiet are pretty much effortless. I found myself grumpy because I wasn't getting everything in noisy environments until I realized that I was actually getting a LOT, and that the results were close to, or better than, my results with ClearVoice. Had a really good experience at Mellow Mushroom; we sat in front of the kitchen and we could watch them making our pizza. Our seats, however, were not quiet ones. Regardless, I heard Margo very clearly beside me, and was able to carry on a conversation with Ruth and Gary across the table very comfortably. The biggest change is that I'm able to tolerate these loud places. That's very new to me. After years of feeling overstimulated and exhausted after a noisy dinner out, the calmness that this program offers is a huge relief. I am able to wear the processor from sun up until bedtime. There is still the occasional overly loud sound, but overall, everything just has a gentler quality to it.

Church last night, at one week post-mapping, was wonderful. Voices were the proper tone and loudness and the music was harmonious. Sounded better than it had in years. Comprehension in conversations after Bible study was very good, and when I was getting in the car, I heard one of the kids talking near the door of the building, which was about 80 feet away. I did not hear what he said, but was startled at how clearly his voice came through. I don't remember ever hearing that before.

One issue that I'm just not sure about is that I seem to be going through batteries at warp speed. Granted, my batteries are old. They are all five years old. I need new ones but since I am hoping for the new AB processor this summer, I really don't want to ask my insurance company to pay for them. It seems that most of my batteries had dropped to around the 8-10 hour charge point, but in the past few days I've only been getting about six hours to a charge. I know that I've been in some really loud situations, which tend to drain batteries a little faster, but that's fast enough that I'm having to stay on top of my charging :) I'll ask them about it when I go back to see what causes that.

This will be my last update for a few weeks; I'll post the official results of my study when I go back on April 8th. I don't think I'll have a lot new to report over the next few a nutshell, I love this program, I hear better than I have in a long time, it's more comfortable, more wearable, more clear, and music sounds better. I may have surprises in what I hear here and there and if I do I'll share them, but I don't want to become repetitious! Of course I'd love to answer questions if there are any; you can ask here, email me, or post on Facebook.

I changed the template because I have a hard time reading white lettering on black backgrounds, and over the past few months I've started having issues seeing white lettering on gray as well. I hope that this makes it much more readable for everyone else, but please let me know if you have any issues reading it. I just changed it to a random, simple template, but haven't really looked it over yet.

Saturday, March 16, 2013

Day four:

On the fourth day today of this new program. And I still like it. There is an ongoing discussion in several different circles about the fact that I don't have ClearVoice on my processor now. I have it on fairly good authority that it can't be run with as few electrodes as I have functioning. And I'm okay with that. I have issues with ClearVoice that have, in the past, kept it from being my primary program. I seem to have a low frequency issue; generally speaking, low frequencies are the most uncomfortable for me. I did okay with F120, only having real issues on bad weather days. However, if I put it on ClearVoice, it posed an interesting problem; in noise, when it was functioning as it was supposed to, it worked great, but if I forgot to turn it back off in quiet and someone spoke up, it would be jarring and overwhelmingly loud.

This strategy actually sounds a lot like ClearVoice; it seems to lower the noise level in general and brings voices out much more clearly. I still have issues with low frequencies; if someone suddenly speaks up, it's a little bit loud. I hear background noises, but they aren't too loud. If I were making changes in this program, I'd lower the low frequencies a bit and raise the IDR. IDR is "Input Dynamic Range". You can read more about it here but basically, IDR is the range of sounds we can hear with the implant. If you have a narrow IDR, you will hear a smaller range of sounds. If you have a wider IDR, you will hear more sounds. In my experience, if I hear more of the little sounds, the bigger sounds don't jump out quite so startlingly.

However, I'm not jumping too quickly to conclusions, because I know for a fact that I don't process sounds like every other ci-borg. One thing that I have learned from personal experience; people that have Meniere's don't follow the same hearing rules that other people with implants seem to be able to. Before I was implanted, I was under the impression that once programmed, my hearing would remain stable. That has never been the case. Some days I hear great, and other days, everything is distorted. On the distorted days, low frequencies are particularly annoying. Those bad hearing days usually, but not always, coincide with "fuzzy brain" days, those days where I wake up and walk into the walls and everything is just a little off. Today is definitely one of those days. People with Meniere's seem to be human barometers; on a low pressure day, many of us notice balance and hearing issues immediately. In fact, we can wake up, stand up and head for the coffeepot, and know within seconds that the pressure is low. Spring and fall seem to bring an abundance of those low pressure days, causing more bad hearing days. So I can't really count any jarring sounds right now; they come with the territory of what is normal for me. A whole other blog post on that later :)

On the whole, however, even with bad hearing days, sounds are still much more comfortable than they have ever been. One topic of conversation that frequently comes up in cochlear implant circles is the fact that it's good practice to turn the processor down in volume before putting it on. Otherwise you can count on being blown away by the harshness. It isn't an issue with everyone, but it always has been with me. Even in relatively quiet situations, I turn the processor down so that the initial flood of sound doesn't jangle my nerves too much. I discovered entirely by accident yesterday that that does not seem to be an issue right now. I put the processor back on after a battery change and forgot to turn it down. I was surprised when the jarring rush of sound that I was expecting didn't come. I tested it this morning with the hairdryer. One of the most electrifying experiences of my life came when I blew dry my hair one morning and set the hairdryer down on the washing machine, not realizing that I had not turned it off. Upon putting my processor on a few seconds later, the sound was so unsettling that it nearly knocked the wind out of me. This morning, on a "bad hearing" day, I decided to conduct a little experiment, so I turned the hairdryer on, laid it on the washing machine, and put the processor normal volume. The initial sound was a little loud, but nowhere NEAR what it would have been prior to Wednesday. It would have startled me if I had heard it randomly, but it wouldn't have stopped my heart like it nearly did before.

Last night at dinner one of my daughter's friends walked out and slammed the door behind her. I heard the sound and knew she had slammed it but it didn't grate on my nerves like it normally does. It was loud enough that my husband commented on it. I told him, "wow, that didn't bother me like it normally does!" to which he retorted, "well, it bothered me!" My daughter also slammed a drawer around that same time and it registered as loud, but not as "painful".

My primary observation on this project is that without lowering the volume on the overall program (in fact, we RAISED the overall volume at the mapping), merely switching off those seven electrodes has had the result of a. bringing voices out more clearly, and b. reducing overall harshness and loudness. I can keep the processor on for MUCH longer with less stress.

As I stated in my initial post, I hear well in quiet situations, so increased hearing in quiet wouldn't impress me. What I was looking for was improved sound quality and/or better hearing in noise.

I can't speak to whether or not my comprehension is better or worse: it's about the same in quiet (it's always been good in quiet situations) and I haven't had a chance to test it out much in noise.

However, this has already surpassed my expectations in the sound quality department. If you asked me today, based on sound quality alone, if I wanted to keep this program or go back to what I had before, I'd take this one in a minute. Hands down.

I didn't ever consider for a minute that this would result in a smoother, more comfortable sound. I didn't realize that was an option. That is a HUGE plus in my book!

I didn't hear well in church Wednesday night, so I am looking forward to being in similar situations over the next few weeks, i.e. big rooms with lots of noise, to see if that will be an issue now that my brain has had time to adjust to the sounds. I do insist on hearing well in church, and I was able to do that relatively well before, so if that doesn't improve, hopefully that can be solved with a few frequency tweaks. I expect that over the next few weeks the sound will continue to evolve and I really don't expect it to be an issue by the time I go back in three weeks. The brain really does adapt marvelously.

Fourth day impression: This is good stuff :)

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 :)

Wednesday, March 13, 2013

Research study article:

is here. I'll be reviewing my impressions with it tonight and over the next few days as I try it out for myself. Check the article out to see what we're doing and then I will try to better explain it as we go :)