Thursday, April 11, 2013

Vanderbilt Image-Guided Mapping Test Results

You know it's time to update your blog when total strangers email you asking for updates :) I had results in hand Monday afternoon but it's been a busy, strange week. I haven't been on the computer much at all and when I have been I haven't been able to blog. I had some free time this morning so I'm trying to assemble my thoughts and share the results!
First of all, here are the "official" results. I asked Rene Gifford, who is doing my testing, if she'd give me the results so that I could share them. Without hesitation, she pulled out a sheet of paper and started writing. Here are the numbers: (you can click on the picture to magnify it)
Now for the explanation of the numbers, for those of you who don't know what you're looking at :)

The very top line, which reads, "2, 4, 7, 8, 11, 13, 16": those are the seven electrodes that I had turned off on March 13th. I don't know much about the significance of those particular electrodes but figure that some folks that are more tech-y than I might enjoy the numbers.

The next couple of lines are Consonant-Nucleus-Consonant, or CNC tests. I don't know enough about the testing to give a lot of information on it, however, it consists of identifying single syllable words with consonants at the beginning and the end (please, audiology friends, jump in here and help explain more fully if you wish!). I took the test in 2008 at about six months post activation with my right ear and scored 68% (words) and 82% (phonemes) respectively (link to that post here).  The first day of the study, before we changed anything at all, we did a baseline test, and I scored 64% in words and 80.7% in phonemes (shown in the picture above). Four weeks later, on Monday, April 8th, my score had improved to 86% and 91.3%. A huge change!

The AzBio sentence testing was new to me. When I was activated in 2007 I took a "sentence test" but it was not this was a single male voice at a consistent frequency. I did REALLY well on that test...that's a frequency that works really well for me, so I scored 97% on sentences in quiet at two weeks post activation. However, that test was not a reliable standard; "real life" is not a consistent male voice. The AzBio Test is different in that it has four different voices, two male and two female, in different frequencies. It hits me in my weak spot; high frequencies. I have never been able to understand female voices well. The results bore that out; the third line, "AzBio Sentences-Quiet" showed that my results were 83%. After turning the seven electrodes off and letting my brain adjust for a few weeks, that score jumped up to 95%. A huge, obvious difference!

The next two lines, "AzBio +10 dB" and "AzBio +5 dB" are the same sentence test, but with the addition of background noise. It was explained to me that the "+10 dB" was where the sentences were ten decibels louder than the background noise (which sounded like several different people all talking at once). The results at four weeks out were huge here: I had a 30% gain, from 47% to 77%. AzBio +5 dB, where the voices were only five decibels louder than the babble, showed a gain of nearly 15%...from 25% to 39%.

The last one, the Bamford-Kowal-Bench Sentence In Noise Test, or the BKB-SIN, was also new to me, and I hope I'll explain it correctly; again, I'd love for anyone who understands it better than I do to correct me if I'm wrong. I want this to be informative, and I sure don't want to tell people the wrong information! The test consisted of a track of babble...voices all talking over each other. The babble gets progressively louder (and more annoying, by the way) as the test goes on. You listen to sentences in this babble and try to repeat them. The quieter ones are easier, of course, and as the babble gets louder, it gets harder to pick out more than a word here and there. The results of this test, if I understand it correctly, show how much louder the voices have to be than the background noise in comparison to a normal hearing person in order to be understood. On March 13th I needed a ten decibel gain in order to have the best comprehension on this test. On April 8th I only needed a 7.5 decibel gain in order to have the same results. So that was quite an improvement as well.

I had already decided before I ever went in that I would keep the programming I had if it were offered to me. Rene said that it would be no problem to leave that program if I liked it. Since I have three program slots on my Advanced Bionics Harmony processor, I now have options, though. Truth be told, I like the experimental program so well that I wanted it to be my primary program. So we put that in Program 1. I told  Rene that I am a fan of "little sounds" and don't want to miss those so we did widen the IDR (sound window) for the second program...I believe we set it at 75, which is not extraordinarily high, but it will give me a wider range of the little sounds. I had it on at church one night this week and heard crackling coming from the air conditioning system. I'm not always in the mood to hear those tiny sounds but it's fun to be able to :)

For my third program we put my original HiRes Fidelity 120 with ClearVoice Medium back on the processor. I turned it on just to see what it sounded like and nearly fell out of my chair. It was such a huge difference. So loud and screechy and high pitched. I am aware that if I switched back to it for a long time, say a week or so, I'd adjust to it again and it wouldn't sound that awful, but I'm not sure that I will be able to make rapid changes back and forth between two such different programs. I just don't know how well my brain can process that. But I do want to try it, if for no other reason than to see how well ClearVoice stacks up to this softer program.

We did not change any frequencies at all. Because my Meniere's is in full swing right now, I never know from day to day if my perception of sound is accurate. My last map was a NRI mapping, where the individual electrode levels were set according to the response of the auditory nerve, and Rene said that those rarely changed much so we opted to just leave them alone.

I asked Rene about an issue that I've noticed: that my five year old Harmony batteries have suddenly taken a nose dive in staying power. Prior to 3/13, I was getting between 8 and 10 hours per charge. Immediately upon changing programs, the battery time dropped to about six hours a charge. That was a noticeable change which required me to have at least two batteries with me at at any time and perhaps three for long days. Rene said that Fidelity 120 is a power saving program to begin with, and that going back to another strategy would require a higher power consumption. Still worth it. :)

I had a friend ask me on Facebook, "Forget test scores. Do you like what you hear?" And my answer was unequivocally, "yes". However, I posted that on Monday afternoon, and shortly thereafter, my hearing took a nose dive of epic proportions. We've had a gospel meeting at church this week and Monday night, all day Tuesday, and Tuesday night I couldn't hear a thing. Everything sounded muffled and distorted and the preacher's voice sounded buzzy. Forget hearing in noise; I couldn't hear in quiet. I sure couldn't blog about how much I loved my hearing because I DIDN'T. I told my husband that I wondered if perhaps we'd made some changes without my understanding? because ugh! Tuesday night I found myself at top volume on my processor, on Program 2, on Program 3 (ack!) and finally, blessed relief, I just yanked the thing off and went to bed. I talked to a couple of Meniere's friends who said that their hearing was taking similar nose dives so I decided not to panic until I had taken a few days to see if the problem passed. Gratefully, I woke up yesterday morning hearing as clear as a bell. I spent my day in various hearing situations and heard well in all of them, including a noisy restaurant with my mother in law at my elbow and a homeless shelter with concrete floors and walls and plates and silverware clanking. The preacher sounded wonderful last night and the singing was clear and beautiful and I could hear the girls talking to me in the car on the way home. So all is right in my world at the moment and yes, I love what I am hearing.

I've been working with Rene Gifford at Vanderbilt, and she has said that they are still testing this out, but that they hope to make it available to everyone soon. It will be available to every implant brand, which is huge news....something that will help every implant user. I don't have a date when it will be available. The link to the original article about the study is here. Nancy Wise is the contact person for the article and her email address is ; I'm sure she'd be happy to answer any questions!

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 :)

Monday, January 2, 2012

Calling It By Name:

Some people are born inquisitive, analytical, always surveying the world around them and wanting answers to questions life offers them. I've always been one of those; someone who has a hard time accepting "just because" as an answer. That's an answer I don't like; I like "definite". 

And so, of course, one of the things that has most defined my life, my deafness, has always been a complete mystery. frustrating. For a long time it was almost kind of cool that I had this random deafness, this thing that just happened when I was a small child that nobody had any answers for, this total anomaly, but as time went on I became more and more curious. When I had my children, I was fascinated to discover that they were all hearing, and relieved, to a certain degree. But as a person who was born hearing and then became deaf, I had no security that my children would always hear. 

I didn't have Internet when my first three children were born. I didn't get online until 1998, when Rachel was six months old or so. I joined several online communities but none of them were related to hearing that time I was in a fair amount of denial that I had a hearing loss at all and just had no interest in finding others like me. In March of 2006, though, that changed almost overnight. When I had that first sudden loss that began my journey down the road to complete deafness, I didn't walk, but rather, I ran to the Internet in search of people who had experienced cochlear implant surgery. And at this point in time I became intensely curious about the "why". Sudden hearing loss once in a lifetime was possibly of those things that just happened. But I couldn't accept it twice. I was sure there had to be a reason, and I wanted to know what it was. So I pored over the websites that listed genetic causes of deafness. Connexin, LVAS, Marfan, Pendred's, Waardenburg...just a few of literally hundreds of things that it COULD have been. I ruled out many of them as I read. I was aware that there was a possibility that I'd never know what caused my loss, but I continued to search, hopeful that one day I would turn up something that would make sense. 

Along my journey to cochlear implantation, to deafness, through the identity crises, through second and third implant surgeries, through conventions and new jobs and new friendships, I missed very few opportunities to ask people, "what is your story?". That was usually one of my first questions, right after finding out people's names. And the stories were fascinating. I met people who had lost their hearing due to illness, due to genetic disorders, rare autoimmune disorders, suicide bombers in Iraq. It was second nature to ask. Perhaps someone somewhere would have a clue that would give me the answer I was looking for.

And surprisingly enough, a clue came one night a year or so ago in a chat room on Hearing Journey, when several of my cochlear implant friends with Meniere's were talking about their battles with vertigo.  Someone mentioned the "drop attacks", and suddenly, I thought, "I've had those." My first attack was probably eight or nine years ago, and it was totally out of the blue, in the spring of the year. I was walking through the mall, pushing a stroller, and one second I was standing, and the next second, I was flat, and the world was whirling around me. I was aware that people were standing over me and I was able to say, "I'm fine, I'm just dizzy". That was the first of several that I had over a period of a few months. I went in to see the local ENT about them, and he did an MRI, and found nothing that gave any clues about WHY I was having those attacks. I wanted an answer...I wanted TREATMENT...and the doctor could offer nothing more than, "there's nothing to fix, you'll just have to wait it out." Thankfully, the dropping and whirling stopped within a few months. However, I was left with mild vertigo...not constant, but often enough that I could say that it was an ongoing thing. It happened most frequently in the late winter and early spring months. 

Vertigo began in earnest in January of 2006. I wrote on a previous blog about struggles with it. In February, in desperation over the frustration with vertigo, I stopped taking a medication that I was on in hopes that it would resolve the issue. It didn't....if anything, it became worse. And then, in late March, I had the first sudden hearing loss. And I don't remember the vertigo being quite so significant afterwards...I was suddenly very preoccupied with the sudden hearing loss and the insane tinnitus that had suddenly become a huge part of my life. 

Amazingly, it just didn't occur to me that I had Meniere's. I didn't know a lot about it, but what I did know, or thought that I knew, was that people that had it had ongoing, day in and day out, disabling symptoms. And I didn't fit that category. So I dismissed it. Besides, I was looking for something that was related to the hearing loss I had had as a small child, and Meniere's didn't fit, because it was something that came and least, to my way of thinking....and in my case, there had been nearly thirty years between the first loss and the second could they possibly be related?

Between March of 2006 and March of 2007, I had constant tinnitus, occasional vertigo, and hearing that fluctuated as much as several times a week. And then one day at the end of March, 2007, I heard the staccato fireworks that signaled the end of my life as a person with any natural hearing...on that day, for all practical purposes, I became completely deaf. And I still didn't know why.

You know much of the rest of the story. I was implanted, I had a successful right ear, a not so successful left ear. I adjusted. I learned how to hear again, how to live again. I still researched the causes of hearing loss, hoping for an answer. I still came up short. I still asked "why?" to everyone I could think to ask. I stopped short of genetic testing...I didn't want to pay for something that might not give me an answer. I asked my surgeon, who only knew me as "sudden sensorineural hearing loss", "is there any reason why?" and he told me, "your ears are structurally perfect. There's no reason why they shouldn't work. They just don't." 

I have several friends in my "inner circle" who have followed my journey for a long time....some longer than others. I'm lucky enough to have a few special girl friends who love each other dearly, and we all stay connected here and there, mostly on Facebook. Two of them have Meniere's. And as the weather this fall started to turn, and their symptoms started to flare up, I started realizing how much I related to what they were saying. Then on HearingJourney a few weeks ago, the topic of those awful drop attacks came up again, and that was enough for me....I wanted to know more about Meniere's. So the research began on every website I could find, and every website that I looked at reinforced my suspicions: I have Meniere's Disease. The websites answered every question completely: Drop attacks are uncommon in any other vestibular disorders. Children can have Meniere's, although it's rare. Meniere's can go into remission for years without a flare-up before rearing its ugly head. And one person's severity of symptoms will not match everyone else' it's perfectly reasonable that I have mild symptoms sporadically when other people are disabled by it. Not fair, exactly, but reasonable. 

After one night of voraciously reading websites into the wee hours of the morning, my mom came over to bring lunch and visit. I told her that I had been researching, and she said, "Interestingly enough, when you were a small child, based on the symptoms you had, the doctors said that it appeared that you had Meniere's. But they ruled it out." I asked her, "Why did they rule it out?" and she responded, "Because, they said, children don't ever get Meniere's; it's something that happens to people later in life." I told her, "Based on what I read last night, children DO have Meniere's. It's rare, but they do." She told me then that they had used the words "endolymphatic hydrops" to describe what they were seeing. That term is synonymous with Meniere's today. 

I took all of this information to the local ENT who first saw the "drop attacks" several years ago on December 22nd, and his face lit up in a "Eureka!" expression. "That's it," he said. "I have no doubt. You meet all the criteria for a definitive diagnosis, and your MRI ruled out any other cause of the vertigo. You have Meniere's Disease." I told him what my mother had said about the doctor's findings way back in 1976, and he agreed with us that juvenile Meniere's was probably the cause of my deafness back then. We have no 100% solid proof, but we have a good circumstantial case. He is forwarding all of my information to Vanderbilt in case my surgeon is interested in doing any farther testing for a true clinical diagnosis, but as far as we are concerned, the mystery is solved. 

I'm overjoyed. In one sense, it's not the best possible news in the world...I still have symptoms. I'm already completely deaf, so there's good news there: I won't become deafer than I am now! My tinnitus is manageable at this time...I occasionally hear fireworks (my mother said that I heard the same sound as a little girl) and I occasionally hear high pitched tones and trains (I remember hearing those as a little girl). I never hear them when I have my processor on, and the noises don't invade my quiet time unmercifully like they do some of my other friends (although the fireworks startle me occasionally when they're loud). My biggest problem is the vertigo and the pressure in my ears. True swirling vertigo isn't a huge issue for me but I have a sense of being "off" some days, especially on bad weather days in the late winter and early spring. The pressure in my ears usually accompanies those bad days, and I just have this overall full head, off balance sensation that's more annoying than disabling, although some days it really gets under my skin. It is what it is. It's always been very manageable, and I'm grateful. And it's truly a relief to suddenly be able to see it for what it is, to realize that the sensations and the pressure are all part of the package deal, pieces in the puzzle. 

A diagnosis doesn't answer my questions as to whether or not my children will be deaf. Meniere's can occur randomly...I may be the only person in my family who ever has it. However, it can also run in families....we go to church with one family where the father and son are the fourth and fifth generation of Meniere's in their family. In that sense, I won't ever have any real will happen or it won't. At the moment, the children all hear reasonably well. There are no tests to determine if they have it while they are still hearing. So we continue to wait, but we are no better off and no worse off than we were before, and at least now we know what we're looking for. 

I have a great amount of peace at having an answer for myself. One of my friends commented on Facebook that only about ten percent of people ever know "why". I'm really grateful that I have been given an official diagnosis, a name for the disease that changed my life. As my friend Tom said, it doesn't change the outcome; that remains the same, and I can live with that...I have long since accepted my deafness for what it is. But there is much peace in being able to call it by name. 

Tuesday, July 19, 2011

I remember the family counselor telling me back in 2005 that my deafness affected my life in more ways than I realized. I told him he was nuts. I didn't think that it affected me at all. But on March 30th, 2006, the day that I had the first sudden loss that would transform my entire attitude about deafness, my life was turned upside down in a way that I never anticipated.

For thirty years, I had lived with bad, but stable hearing. I had many negative feelings associated with my hearing loss over those years, but had trained myself to ignore them. I tell people now that during those thirty years, despite the fact that I had a 100 dB hearing loss, I considered myself basically a hearing person that missed a lot of words. I WANTED to be a hearing person. As a child, I was unique in so many ways, deafness just being one of them, and I didn't WANT to be different. I wanted to belong. And so if I missed something that was said, I stuffed the hurt away. If everyone else laughed at the joke, I laughed, too, whether I heard it or not. All the "I'll tell you laters" and "it wasn't that important anyway"...stuffed them deep down inside and let them silently hurt. But I had fooled myself into thinking that I was "normal", that I wasn't really very different from anyone else. 

I still have this desire to belong, but it's different now. I still, quite often, feel a lack of connection to people that can hear, since they, for the most part, don't seem to be able to grasp my communication difficulties, and to be honest, I still don't always understand what they're saying. Most of the time they treat me like the person that I wanted to be and pretended to be for years...a hearing person that just sometimes misses some words. But somehow over the past few years my identity has changed and I no longer want to be seen as a hearing person who sometimes misses words: I want to be seen as a deaf person. At some point I became not only comfortable with who I was but proud of it, calm in the realization that deaf is not better or worse, but simply different. At some point I became not just accepting of my deafness but fiercely owning it: demanding for it to be seen and acknowledged, a take-it-or-leave-it attitude. Which side of the fence do you stand on? Can you accept the fact that I don't hear well? Can you not only acknowledge that I'm deaf, but deal with it and make the changes to help me, and others like me, overcome the communication barriers? And for the people, hearing or deaf, that say, "I embrace that about you, let's take it and roll with it", I feel at home. But I feel an especially deep sense of kinship with others who live it, who have been through the same journey I have and have come out on the other side bruised and battered a bit, perhaps, but who have kept their hearts strong and kind and generous and willing to lend a hand to others who are just beginning the trip. I don't even really like the term "hard of hearing"...that seems to me to be a cop-out, a "not quite deaf" statement. I'm deaf. My ears have very few, if any, living cells in them that work...they have all been mown down by a shiny electrode array. I only hear when the magnet clings to the side of my head and a string of binary code cascades through the electrode, producing electrical impulses that, almost miraculously, my brain interprets as sound. My ears look perfect, but they serve no other function, really, than to hold a processor and perhaps the arms of my reading glasses. And a lot of people shy away from seems to be something to be feared, something to be ashamed of, something to be tiptoed around. I wish that all of that could be pushed away and that hearing loss....deafness...could be seen for what it is, something that affects one in THREE people by the age of 65. It's not something to be ashamed of or afraid of or something to hide. It's very real, it's very common, and there are a lot of people with hearing loss who miss out on the world around them every day because of stigma and shame. 

I wouldn't be hearing again now...too much of who I am now is wrapped up inside a deaf identity. I believe that this is who I was meant to be, and that there's a purpose for this, so I accept and embrace the fact that this is who I am, and try to educate those around me about the fact that inside, we're people just like you are, people who want to be accepted and involved and needed  just like everyone else. We are going to miss a lot of things that you say. We don't want to....we don't choose to. We need you to meet us halfway. We don't advocate for ourselves to be pushy and loud and rude and obnoxious. We advocate for ourselves because we want to share this amazing thing called Life with you, and occasionally, if you don't stand up for yourself, nobody is going to stand up for you. We just want you to be aware that we don't hear. We have a lot to offer, but we don't always hear. Silence and shame and invisibility doesn't benefit anyone. Can you hear us? Are you listening?

Tuesday, July 27, 2010

My story:

A link to the Hearing Loss Magazine can be found here: HLAA Website

and the article itself is here.

Tuesday, June 29, 2010

Watch for....

...the July/August edition of Hearing Loss Magazine :) (Photos by Cindy Dyer, who writes about the article here)

Thursday, October 1, 2009

Turning Point

I know it has been a LONG time since I have posted anything was startled when I looked at the date of my last post. Truth is, though, writing here has not been a passion of mine for a long time. I have discovered the simple, fun world of Facebook and that has been where I spend the majority of my time. I still love to write but writing about deaf issues just isn't something that really appeals to me right now.
I have decided that I have somewhat come full circle here. For years I was in denial about my deafness...I didn't want to be deaf and didn't want to talk about it. I pretended to be just your average "normal hearing" person for as much of the time as I could. I would tell people I was deaf but only when the situation called for it. I was embarrassed, quite frankly.
When I went completely deaf in March of 2007, my situation changed...I was suddenly undeniably deaf and had to face that fact. I jumped headfirst into the world of hearing loss...getting involved with every hearing loss group I could find, investing all of my time and energy there. I was no longer deaf and ashamed...I was deaf and proud of it. I was on a mission to change the world and their misguided views of deaf people. I loved it and I allowed it to consume my world almost completely.
Unfortunately, that kind of sudden, consuming passion tends to crash and burn rather quickly :). I went through a phase where I was just overwhelmed...too many irons in the fire, too much going on, too many different directions where I was being pushed and pulled emotionally and physically. On the go too much, taking time away from the things and people that really mattered. So many thoughts swirling through my head and not being able to sort them all out. I took a hiatus to stop the sit back and think and prioritize. And now I see things a little more clearly.
I am so much more than a deaf person.
I am a creation of God, a daughter, a sister, a Christian, a friend, a wife, a mother, a teacher, a mentor. I am deaf, but that does not define is just a small part of who I am. I am so much more than my non-working ears and the tiny personal computer that resides just behind them.
So I am shifting my focus here...and going back to blogging like I used to...about the big picture of life, not one small, isolated area of it. I am keeping this blog open and I may occasionally update it but I am going to attempt to start posting occasionally on a new blog that I created several weeks ago. It can be found here. This blog will always be my "CI blog"...even the URL reflects the theme...and as much as I loved reading CI blogs when I was researching, I hope that this will be a help to someone down the road somewhere...but I want to write about so much family, my church family, what is cooking in my kitchen, the weather, what my cats have destroyed today, how many monkeys are in my collection now, what I want to be when I grow up. Share it with me? :)

Wednesday, July 22, 2009

Thank you!

...for all the support that has come my way over the past few and on Facebook. The decision to make a big change of this nature took a while to wrap my brain around but I feel nothing but relief now that I have made it. I have an appointment made...July 31st at 9 AM I am meeting Susan to try the CIS programming and we will see how that goes. She said that we have never tried the CIS strategy before and agreed that it was a possibility so I am interested to see if it will make any difference at all. I have heard from several users of that strategy that have had encouraging things to say...that is exciting :)
While at the HLAA convention in Nashville, our family had the privilege of working with Cindy Dyer, whose photography can be found here: Cindy Dyer's Blog. Cindy offered to photograph our family about a year ago but because of schedule conflicts we never could make it happen. I finally got to meet Cindy in June and she spent quite a bit of time with our family one afternoon taking pictures. The woman does spectacular work...and also a tremendous amount of I have been patiently waiting to see how they turned out. It finally got to be too much for me, though, and I e-mailed her and asked to see just one particular where we just let the kids be goofy and hang out. She obliged by sending it to me right away...and it was so cute! She has asked that I not share further pictures just they are for a project...but she said I could post this one on my blog, so I did :) I think this one turned out so eight year old is making a funny face, but that's what that age tends to do in pictures, I think :)
One more quick observation and then I am headed to bed. I have talked to a lot of people over the past three years about CIs and have mentored, been mentored by, supported and been supported by a lot of people in that time. One of my buddies, Ulf, has been around for a long time...I've probably known him about two years. He has been desperately needing a CI for a long time but because he lives in Norway and there is limited funding for his hospital to do CI surgeries, he has had to wait a very, very long time. I don't know what time it is in Norway, but I know that Ulf is FINALLY having his surgery today, on Wednesday, July 22nd. I get excited about ALL CI surgeries, but he has waited a very long time to hear again, and I feel a tremendous amount of joy that his dream is finally coming true. Keep Ulf in your prayers and if you feel like it, swing by his blog and congratulate him. I know he hasn't posted on the blog a lot lately but the last I heard on Facebook everything was still on. He would love to hear from you. Keep him in your prayers!
Headed to bed...night, all :)

Tuesday, July 14, 2009

Just keepin' it real.

Long post ahead!

I have had a really hard time coming to and writing on this blog for several months. I know it's been neglected...we've had the Walk4Hearing, the HLAA convention, and most recently, I went to the Northeastern Cochlear Implant Convention in Massachusetts just last weekend...and I haven't written much, if anything about any of those events. I really feel bad about that...there was a lot to say about all of those events...but this blog just hasn't been a comfortable place for me to be lately.

I have a really good reason, and I have been hesitant to share for a long time, but it's finally time.

On September 11th, 2006, I went under the knife for the first time to implant a cochlear implant in my left ear. It had been without sound for thirty years, since the time I was four years old. When I lost the hearing in that ear, the doctors told my parents that I had no usable hearing in that ear and a hearing aid wouldn't be helpful, so in all that time, I never heard a single sound in that ear.
At activation, I felt sounds in that ear instead of hearing them. Within a few hours I was hearing sounds but despite the best efforts of my incredible audiologist we never were able to program out the sensation. The best way to describe the sensation that I feel is a jackhammering feeling inside the skull. Not at all pleasant. I toughed it out for a few months and then gave up on it, since I still had a hearing aid that gave me a little benefit in my right ear.

I soon lost the remaining hearing in that ear, and on November 5, 2007 I was implanted in my right ear. Two days before Thanksgiving I was activated and we knew from the first MINUTE that this ear was going to be dramatically different. I could hear voices immediately and was comprehending speech before I ever left the office. Within two weeks I scored a 96% on a test comprising of sentences intoned by a male voice...and I wasn't lipreading. Before the CI I only got about half of what was said...WITH lipreading and the tiny bit of sound I had left.

After I had had that CI for a few months, I started questioning all the problems I had with my first implant. Was it possible that there was something wrong with it? I had a lot of pain and fullness in that ear...was there any possibility at all that perhaps something had gone wrong? I discussed this with all of my family and friends, my surgeon and audiologist, and several of the people that I knew that worked with Advanced Bionics, and after much discussion it was decided that it wouldn't hurt to reimplant that left ear and just see if it made a difference. So in August of 2008 we gave it one more go and I went back under the knife for the last time. Five weeks later I was activated and the results were only somewhat better. I have no pain in that ear anymore, so that benefit was immediately obvious. I still felt sensation in addition to sound, though.

However, this time my attitude was different. I was going to keep that baby on at all times...whenever my right ear was on my left ear was going to be on with it. If the sensation could be defeated, I was going to do it. I was much more determined this time. I was going to be bilateral...I had gone through the surgery twice and I was going to make it happen.

Well, almost a year later, here's the update...being bilateral isn't working for me. At my last mapping two weeks ago, my audiologist and I talked about giving up and going back to my one good ear alone...I have been so VERY frustrated. Because of the sensation that my left ear feels, I have to keep the volume and sensitivity way down. Because of that, I can only hear the louder audiogram on that ear is about in the 70 db range, and I have practically no comprehension at all in that ear when it's tested alone. My brain seems to have reassigned a lot of low frequencies to that ear, so I do have a richer, fuller sound with both of them on. However, if I am in a situation that is noisy at all (and I have five children, so just being at home often puts me in that situation) the sound that the left ear gives me is actually a huge distraction to my right. After a certain loudness threshold, everything sounds garbled. I have been VERY frustrated with that situation, simply because when I only had one ear, I heard MUCH better in groups than I do now. I'm a very social person...and I love group situations. I HATE being in groups or on a plane or in the car and having to struggle again when I know how easy it was before when I only had one ear.

If I had a magic crystal ball and it told me that in two years, three years, five years, all of this would magically get better and I would have super hearing, I would have a lot more strength to keep on going. But it has been almost three years since I first implanted that left ear and I am telling it like it is: I don't see enough improvement to keep on doing this when I KNOW I can hear better with one ear alone. This is not an implant issue, or a surgical issue. This is the issue of a brain that went without sound for thirty years, from a very early age, and doesn't seem capable of creating new connections past what it already has.

I have a very supportive group of friends and family, and most of them have thrown out constant encouragements of "Don't quit!" "Don't give up, maybe it will get better!" and the like. And I think it's because of those people that I have stayed with it as long as I have...I haven't wanted to say, "This isn't working for me" and let everyone down. I also love the volunteer work that I do with Advanced Bionics and had fears that a volunteer with a non-working ear wouldn't be of much use to a company whose business is making people hear. It has been so hard to come here and blog...this is supposed to be about bilateral implants! The title and even the link reflect that.

This weekend I went to the Northeastern Cochlear Implant Convention and while I was there I went to a workshop with a bilateral panel. Four bilateral users, all with the Advanced Bionics implants. Audience members were encouraged to ask questions to the panelists about their likes and dislikes about being bilateral. "What is the best thing about being bilateral?" was one question. One of the panelists, who was probably in his mid 50s, spoke up and said, "I don't wear one of mine. I was born deaf in that ear and despite the fact that I wore that implant for 14 months, it never did work for me." I nearly fell out of my chair. Why did they have him on a bilateral panel? What good was his being bilateral if both ears didn't work?

I talked to him for a good while after the workshop and we compared notes. I told him my story and he said, "Thank you for sharing that. I think that people are afraid to admit that occasionally they just don't work. I gave it my best shot and it seems like you have too. I have one ear and it's great and I am thrilled to have that." And those are my feelings. I cried all the way through my sushi at lunch because of the relief of finally admitting it to myself...I can't keep doing this. I can't keep wondering what other people are going to think. I can't keep worrying that someone might be nervous about being implanted after hearing my story. I can't keep keeping on for everyone else. In order to hear my best, one ear seems to be my best option.

I have one more possibility under my belt. There is a very simple programming strategy called CIS that was used a while back in previous implants. It delivers less information at a slower rate, if I understand correctly, and might possibly be able to reduce sensation just enough so that I can increase sound enough to balance those two ears. It's not commonly used and it's a bit tricky to program in so there's a possibility that it might take some doing to make that happen, but after I have tried that (and I am fairly positive that it won't make a difference), I can honestly say that I have done everything I can think of to make being bilateral a success and can walk away with no guilt at all. I talked to a friend at Advanced Bionics today about my volunteer work; did she think I could still be an effective mentor if I gave up? Her reply made me cry:

"...We value you and your experiences and going forward, they will continue to be valuable to all who connect with you, regardless of the direction you move. If you return to being a person who uses one CI, that will be your perspective and the point of view from which you will share your experiences.
...The bigger issue is really what you want to do and need to do for your best hearing experience. It sounds like you have given that tremendous thought and have come to a conclusion that works for you. Whatever you decide, AB, and I think more importantly, you family, friends and those of us at AB who know and care deeply about you, will be completely supportive and behind you 100%.
So please take any guilt or disappointment you think we might have off the table and out of the equation. That is simply a non-issue."

So that is what I am going to do. The next few months will bring more mapping appointments as we attempt the CIS strategy...I should know fairly quickly if that will work or not. If it doesn't, I will have to retrain my brain to bear the entire weight of hearing again. It won't take long but it will require several mapping sessions to get it right again.

I have zero disappointment about not being able to hear with that ear. I had zero expectations of it going in, and after three years, I feel almost a sense of relief to know that the end may be in sight. I may not have surround sound any more, but I will have the best hearing I can have, and, my friends, isn't that what we all want?

Sunday, June 7, 2009

Suggestions please?

With the HLAA convention coming up in a week and a half, I have been offered a really neat opportunity to speak to the employees at the Nashville airport about the influx of hearing impaired travelers that will be descending on them in just a few days. This is my chance to tell them what concerns we hearing impaired individuals have and talk with them about the best way to communicate with us. If you could tell airport personnel one thing, what would you want them to know?

Saturday, May 16, 2009

Pictures from the Walk4Hearing..... and here. Check them out!

I want to write more about this soon, but I'm worn out :). I do want to say a HUGE "Thank You!!!" to everyone who has supported me and my team this year...with your help, I was able to contribute $900.00, and at last count the Nashville team had raised $1,990.00...ten dollars short of $2,000.00!! Considering that several of the people that had originally planned to walk with our team weren't able to due to scheduling conflicts, I am THRILLED with our success. I am so grateful to YOU all for making this happen...thank you!

My children and husband all walked...even my six year old...5k or just a little over 3 miles. Needless to say, everyone is asleep...and I am headed that way myself!


Jen :)