Research Mapping Days 3-5

Saturday was travel day for me.  Before going to the airport, Mark and I returned to the mall for a little last minute shopping.  The mall was a zoo and it was very difficult hearing in there.  I did Ok but nothing spectacular.  I did realize that my volume was on 9 (with my clinical map it is set at 6-7 by default) so it made me wonder if maybe I needed to turn that down.  I decided that I would experiment and see if that made a difference.  All of this is “new” to me because I have pretty much been a turn on processor and go girl for a long time.  I don’t normally change volume or sensitivity and usually only change my program to beam/focus when in restaurants with my hubby.

Airport was a breeze.  I heard well and even got into a conversation with a TSA agent and a guy behind me in line.  It was the TSA agent’s birthday and I told them that mine was Sunday so I had several TSA agents wish me a happy birthday as I made my way through security.  I did have a problem on the plane hearing the flight attendant, however, it had nothing to do with the research map—my battery died on my processor and I was too busy playing a game on my Kindle to notice.  After changing the batteries, I heard the pilot loud and clear say “we are here” and was happy to be back in Ohio even though I still had a 1 ½ drive home.

I was actually looking forward to the drive home as I knew my free Sirus radio subscription was expiring that night and I wanted to see how my Margaritaville radio station sounded with this research map.  As has been my experience from the first day the radio sounded awesome.  I don’t know what it is but the beats/instruments/melodies/words just sound so clear and uncomplicated.  It was a great way to say good bye to my Sirus subscription.

Sunday I could hear well in church although the choir was not as good as I had hoped.  Not sure whether they are just not great or if it was me (maybe it they had played Jimmy Buffet music it would have been better).  In the afternoon we went to a Mexican restaurant to celebrate my birthday.  There was a group of five of us and the restaurant was celebrating Cinco de Mayo.  It was busy and noisy so it was challenging.  Again I left my processors on my everyday program rather than changing to my usual beam/focus.  I only had trouble with my cousin who has a high pitched female voice—the three male voices and server came through loud and clear.
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My favorite cousin and her husband celebrating my birthday and Cinco de Mayo with us.

One of my favorite shows—The Great Race—was concluding their season and I heard the TV very well.  Was it better than before, I don’t know but there was no degrading of my comprehension.

Monday’s discoveries were that the keys on my keyboard sound different—not in a bad or good way.  There was more clanking/plastic sound.  Sometimes I am not sure whether these things are catching my attention because of the sounds they are making or because I am trying to be so conscious of what I am hearing.  The biggest obstacle for the day was finding a radio station that played music that I liked.  Before my Sirus subscription I always listened to talk radio but I have become a music junkie.  I didn’t find anything that I really like but will keep searching.  Suggestions anyone???

After five days my overall observations are that I know something is different, however, other than music being better I can’t really say that I am hearing better or worse or know what is different.  As with every new mapping it takes time to adjust and I think this research map is no different.  I wish I had done an Angel Sound session last week before I left and then did one now to see if there was a difference.  I know I will be tested again in 4 weeks at Vandy but never hurts to do a little experimenting.  I think tomorrow I am going to try two things:  using the phone with the research map and listening to my Ipod (books and music) with my research map.  I normally use the phone with the other ear because the one that has the research map is my “weaker” ear.

Thanks for following along and the comments.  Will be back in a few days.

Have a great week everyone.

Connie

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Research Mapping Days 1 & 2

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I don’t know if it is just me or what but I feel like I am struggling with my regular programs so this new strategy will be an interesting experiment.  Maybe I am just ready for new processors (waiting for N6) or maybe I am just being too hard on myself.   I have my questions ready for the audiologist and a lunch date planned with a friend after the session.

When I arrived at the Bill Wilkerson Center at Vanderbilt I was greeted by a 5-6 page questionnaire to fill out while I was waiting for my appointment.  Lots of questions about how I feel I hear in certain situations and about my hearing history.  Andrea (the audiologist) then called me back and asked a few more questions and explained the testing that she would be doing.  I was tested first with my left implant only and then with my right implant only—no bilateral testing.  She did HINT test, CNC, three sounds asking which one is different (don’t know the name of this test—it got progressively harder), and the consonant recognition (I did well on this).  The purpose was to see which was my “weaker” ear.  I knew going in that my left ear was the weaker—interesting my left ear was my better hearing ear before I received my cochlear implants.  I didn’t ask for the scores but testing confirmed that my left ear was the weaker and is the one that will received the research strategy first.

Andrea obtained my mapping recommendations from the research department and proceeded to change my maps.  Basically all they do is turn certain electrodes off.  On my left side I already had 19 & 20 off because they caused pain when stimulated.  After looking at my pre and post operative CT scans  the decision was made to turn off 5 additional electrodes.  No other changes were made to my maps and she was kind enough to leave my clinical everyday map in slot #4 as a crutch.  I still have ACE processing strategy with ADRO only as my everyday program in #1, Music #2 and Focus/Beam #3 but all three of these have the 7 electrodes turned off.  She asked that I return in 4 weeks to be tested again in the left ear with this research strategy.

Initially everything was loud but not uncomfortable.  Sound was a little “off” but I could understand words fine it was just the quality was not up to par.  I went to lunch with my audiologist friend and the audiologist who did the testing and mapping—talk about pressure to hear.  Lunch was in a noisy area, however, I did fine and enjoyed trying out my new ear.

Initial observations—

Music—absolutely the biggest difference.  I could not believe how crisp and full the radio sounded.  I was just fascinated with it and could not get enough of it.  I always thought I heard music fine (not blowing away great but OK) but it is so much clearer with this program.

GPS—the lady giving directions was a bossy as ever, but I had no problems understanding her.

Mall—fine, it was not very busy so the environment was not exceptionally difficult.

Home (Mark & Britini’s house)—was the most challenging.  They have very high ceilings and hard wood floors so it was no surprise that things might be harder.  I just noticed that I missed some things at dinner when the three of us were chatting (like WVU vs BW for example).  Britni tried to make me feel better by telling me she didn’t say it very clearly.  I attributed it to the surroundings and still getting used to the map.  It always takes me a few days to get used to any new map.

DAY #2

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Went to Pancake Pantry for breakfast (check it out if you are ever in Nashville—great variety of pancakes and right down the street from the audiologist’s office).  It is a very noisy place and I had no problems hearing the waitress, however, it was not a real test because I was by myself and didn’t really need to carry on a conversation.

After breakfast I went to Centennial Park and walking towards the park I was amazed at how the birds sounded.  Now, I hear birds with my clinical map and have heard birds since I was first activated, but for some reason this was like hearing them for the first time all over again.  I don’t know why but I was just awestruck.  It was almost like being activated all over again and first discovering a sound.  I don’t know what was different about these birds but they really caught my attention.  I smiled—it was like being a newbie again.

It was a very windy day and when I was in a parking lot I noticed the wind noise.  It was the same experience as the birds.  I have heard it before but learned to ignore it with time after my initial mappings but this time it was different.  It caught my attention and was different albeit a bit annoying.

I obviously don’t have an explanation for the bird/wind experiences but having the electrodes turned off changed how I am hearing them.

Dinner—Mark and Britni took me to dinner for my birthday and this was a real test.  I usually switch to focus/beam in restaurants like this, however, I wanted to see how I did using my everyday program.  The restaurant is in an old brick building with high ceilings and we were seated in the balcony next to an open staircase.  We were also seated next to a large group.  It went pretty well—it was not perfect but conversation flowed well.  I think maybe I was a bit nervous and put pressure on myself to make it work.  In hindsight I should have gone ahead and used focus/beam.

So that is it for the first two days.  Will update next few days after I get caught up here at home.

So I have been keeping a secret.

I have a favor to ask–after reading this please to not call/email/contact Vanderbilt about this study.  As of this writing they do not have all the particulars worked out to bring more  people in for the study so please do not contact them.  When the information is available, they will post it on their website and hopefully I will remember to post it here on my blog as well–someone will find out and let everyone know asap.  Thanks for your understanding the situation.

I am honored to have been selected as one of the first outside of the Vanderbilt family to participate in the Vanderbilt University cochlear implant study we learned about in March (http://news.vanderbilt.edu/2013/03/high-fidelity/). Because of this I thought it might be important/interesting/helpful if I blog about the experience so others can share it along with me and learn more about what is going on. Below is my introduction to my experience—I am writing this on Monday before my session on Thursday, May 2.

I promised that I would not share this with the cochlear implant social media world till Vandy gave me the OK. I was told that when the press release was first published Vandy was inundated with calls, emails, inquiries from all over the world (South Africa, Sweden, Pakistan, Australia and US) including some high profile users who will remain anonymous in this blog. I don’t think they understood the power of cochlear implant social media when they released the information. Never one to be left out, I too emailed them asking about the study and received the same reply as everyone else.

So the question becomes, how was I so lucky to get invited to come so early in the study. It has been very hard keeping this secret while the cochlear implant social media has been exploding with excitement over the possibilities this study may bring but I’m proud of myself for once keeping my mouth shut—I did give a few hints. I owe it to a lovely ENT resident physician who happens to be my favorite daughter-in-law—love ya Britni. You know how life is, sometimes you are just plain unlucky and then once in a while you get lucky and this is one of those cases where luck was with me. I was telling Britni about how excited everyone in the cochlear implant community was about the research and it just so happens that she was working with Dr. Robert Labadie, director of the study. So since I am her favorite mother-in-law, she asked him about the study and told him I was interested and thus my Vandy journey began.

Britni told me what I needed to be accepted and I set out on a mission to gather the data and get it ready for Vandy. Within a few weeks I was contacted by D r. Labadie’s research nurse and asked to come to Nashville for a CT scan. The nurse knew I would be in Nashville for Easter weekend and arranged for me to come to the hospital at 4 pm on Friday. Unfortunately, spring break traffic was horrific from Ohio to Nashville and what should have been a 6 hour trip took almost 8. Although we were late, the nurse graciously waited on us and the CT scan was completed—took all of 15 minutes. I also brought with me my pre cochlear implant CT scan and they checked it to make sure the images were clear enough to be used—this scan needed to be in a specific format or it would not have worked. I was told that the study group would look at the scans and my current maps and in about two weeks if everything was OK they would contact me to set up a time to come back for my first session/mapping for the experiment. Since everything looked fine on my CT scans and a mapping strategy was put together for me by the team and I was asked to come back May 2 to begin the next part of the study.

Coincidentally, I was sent by a researcher friend (not by anyone at Vanderbilt or associated with Vanderbilt including my daughter-in-law), a copy of an unedited article on this research that has been accepted for future publication. Although I don’t consider myself a geek I do like reading the research articles and many times I don’t understand the lingo but get the jest of the article. Interesting that it appears I MIGHT get the new strategy in only one ear. This especially interesting to me because I know I hear better in noise with two cochlear implants than with just one so the thought the two ears being programmed differently to give better results was intriguing (when I say differently I don’t mean just different T and C levels but a totally different approach). The other thing that is interesting to me is the fact that I have two electrodes turned off on my left side. These electrodes are turned off because they cause pain if turned up very loud. The reason I find this interesting is when given the option of turning them off completely or just turning them way down I thought turning them off completely gave me better sound quality. My experience seems to play right into the Vanderbilt study as they too turn electrodes off and people are reporting better sound quality in noise. I do not have a link to the article but will try to post later.

I will post more comments when I return home in a few days. I am trying to keep a diary to thoughts about it.

Thanks again for not contacting Vanderbilt and bugging them.

Research Blog–The Beginning

Before I start this research blog, I would like to thank a few people.

First, my husband who has always supported me in all of my efforts to hear better and is always willing to listen about these research trip. And of course the flowers on the table when I return from each trip put a smile on my face.

Second, my cochlear implant friends both old and new. Without all of you I would never have accomplished what I have with my cochlear implants. To all of you who came before me and opened new doors for me in the research world, I want to say thank you. Your endless hours sitting in labs across the country listening to beeps and sounds furthered the technology that allowed me to hear so well with my Freedoms. Newbies remind me on a regular basis to laugh, smile and celebrate the small things in my hearing journey—that ice maker still drives me nuts.

And lastly, the researchers I have met along the way. I always try to tell you how grateful I am for your efforts. All of you (some of the brightest and best in the world), chose to do what you are doing because you want to help us (cochlear implantees). Yeah you might be “geeks”, but you know that maybe just that one small idea/tweak/sound might hold promise for a better program/processor in the future. Your beeps, clicks, strategies sometimes make for long days as a guinea pig but I will be forever grateful to you for doing the work you do.

I am always excited for new opportunities. I am excited to have been invited to participate in a new opportunity for what many think is going to be ground breaking in the cochlear implant world. But before I start blogging about this new opportunity, let’s see if maybe this trip through my research experiences can give a little history lesson (once a teacher always a teacher they say).

I was implanted with my first cochlear implant in 2005 and the second in 2007 and started participating in cochlear implant research in September of 2006. Funny I don’t remember how I actually got started but someone must have told me to contact that first place.

That first trip was ground breaking for me in ways beyond the actual research. I had not had my first CI for even a year so the thought of getting on a plane by myself, needing to transfer planes in the dreaded Chicago O’Hare airport and flying all the way across country to Seattle was pretty exciting and daunting all in one. Imagine this deaf Ohio girl doing this all by herself. I probably could count on my fingers the number of times I had been on an airplane and here I was doing it by myself. Mike was scheduled to fly out a few days later and meet me in Seattle for a short vacation but the first few days I was on my own. The trip was also the impetus to get a cell phone. Till that point why would a severely hard-of-hearing person need a cell phone. At the time Mark (our son) lived in Chicago and I still remember sitting on the plane and calling him. I really thought I was something sitting there talking away on my “cell phone” just like all the other movers and shakers of the world. Funny how the small things so many take for granted are so important when you can’t/don’t have them.

So I managed to get on the right planes and arrived in Seattle safe and sound. I was even able to chat a bit with the shuttle driver during the ride to the hotel. I had no idea where I was going and still remember being intrigued by the fact that they change the direction of traffic on some one-way streets depending on the time of day. Geesh, I hardly ever even encounter a one-way street and then to confuse me with changing direction—big city girl I am not. The next day was a new challenge, get on the correct bus and find this obscure building on the University of Washington campus by myself. Sounds easy now but for a “newbie” at hearing and traveling alone it was daunting. I found my way and managed to complete the testing unscathed. As I remember the testing, it was music related and as Mike says how do they expect you to do that now when you had no ear for music before you lost your hearing. He is correct—I am not good at music testing and just have to laugh at myself while doing it. I enjoy listening to music with my implants, however, don’t ask me about the details of what I hear.

When I made that maiden voyage into the cochlear implant testing world I had no idea where I was going or what I was getting into. Now almost seven years later I look back and see that it has given me a new level of appreciation for all researchers (not just cochlear implant). They spend so much of their time and talent working on things to make life better for people that they, in most cases, don’t even know.

About 9 months after Seattle, thanks to my dear friend Carol B., I was invited to visit the University of Wisconsin. By then I was bilateral and they were studying whether or not a cochlear implantee could identify the location of sound (directionality). I had never been to Madison and after that first trip I fell in love with the city and people at the lab and love getting to see Carol B. while there too. During that first visit they did a couple extra short tests to see if they wanted to invite me back for further testing. One such test I was doing very well on, so the guys (aka researchers) decided to make it harder, and harder, and harder, until they eventually pushed it to the limit that they knew even a “normal” hearing person could not do. I sat there perplexed and stunned it was impossible, all the while the guys stood behind me laughing. Even though most of the people from that particular day have left U. of Wisconsin, I still make sure each time I visit to get in a few jabs of my own. I have been asked a few times how many times have you been to Madison and I say enough times to know the good restaurants and good beers. They are a wonderful group to work with and I can’t wait to go back.

University of Michigan’s research group is another group close to my heart. Another wonderful city and fun group to work with. I first started going there after working with one of the researchers at Ohio University who was a graduate of the University of Michigan (known to most Ohioans as the school up north). They always have some interesting experiments and I especially like doing the testing in noise. Ann Arbor also has some wonderful restaurants and the best cupcake place ever. I have gotten to know some of the Michigan researchers pretty well and it is always fun catching up on their lives and families. They are an amazing group of friends in addition to being amazing researchers.

Another dear friend, Camille J., put me in touch with the group at the University of California Irvine. First time I had been to that part of California and I loved it. The group there was an interesting mix and even included a couple of ENT physicians from Asia. The director of the lab has now started his own cochlear implant company and is implanting his implant in children in China. This time it was my turn to play a trick on one of the researchers. He had twin boys who were less than two months old when I was there. The other lab members said he was sleeping on the couch in the lab because he couldn’t get any at home. So when he asked me how I lost my hearing, I, with a very straight face, said that it was from all the crying my twins did when they were little. His face went blank and he said oh really. He was speechless. So you see it is not all work on these trips. When one spends long days listening to beeps you have to find ways to entertain yourself, sometimes at the expense of the researchers.

My home, The Ohio State University, has been a stop in the schedule as well. I have been there a number of times to work with a PhD researcher, the Otologist, and with some audiology students. Since I am “local” for them it is usually just for a few hours and they often will try new tests on me. I always seem to like to “critique” the experiments which I have been told is helpful to them. There is another recipient that tests there who is my challenge. Jason consistently beats me on the testing and it is always my goal to do better than he does. I have not accomplished that as yet but will keep trying. Margie, another cochlear implant participant told me that her goal is to beat me so we all have a friendly competition going on there. Must be a Buckeye thing.

A new place on the docket is the University of Maryland. The researcher there used to be in Madison and now has his own lab in Maryland. It is a very spiffy place and everything is brand new. Last time I was there they worked me to death and shifted me around to a variety of experiments. One was being done in conjunction with Walter Reed Hospital in DC. I like the variety as it makes the days go faster and allows me see/hear different angles of hearing research. The last time I was there I was excited to do so well on one experiment that they told me I even scored better than some normal hearing participants—I was pretty proud. Both times I have been to Maryland I have also managed go get a few hours off to hop on the subway into DC. So as you can tell I have graduated a bit from Seattle and can now maneuver the nation’s capital.

So this all got me thinking where have I been to do research: University of Washington, University of Michigan, University of Maryland, University of California Irvine, University of Cincinnati, Ohio University, Kent State University, and of course The Ohio State University.

The most amazing thing to me is how all of these labs and others around the country collaborate on the information they are working on. They share information readily and in the end that only helps improve the outcomes. They have the best interest of cochlear implantees in mind. I don’t know that that happens in other areas of research.

New and exciting opportunity this week–more info coming soon!!!!