Fun, Fun, Fun till the audie took the map away (aka last few days of left ear research map)

Sirus radio is giving free programing for two weeks so I am back to listening to Margaretville thus the title this week’s post (Beach Boys one of my favorites).  I must say though Margaretville provided me with my first unpleasant music experience since receiving this map.  I don’t know why but the version of Take Me Home, Country Road they played was terrible.  I told Britni that Dr. Labadie must have forgotten to give me the WV component of this map—I need to find a copy of the John Denver version.

Speaking of home–I wanted to share this picture from my garden.  The hosta in front of the figures is called June.  I planted it because my mother’s name was June and it makes me feel like she is right there with my two kids (adults now of course).  Hope you enjoy it.
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Back to the business at hand–my last post resulted in a couple of interesting conversations. 

–The first was when my friend Camille emailed me about my comment about my singing voice.  I obviously missed my objective because I was trying to be funny.  Camille, however, asked a valid question.  Did my voice sound different to others with this new map (something I never thought about asking).  Let’s face it if our map is off then we may change our voice to accommodate what we think we should/do sound like.  I remember people telling me after I was activated with my first CI that I really lowered my voice.  People are always surprised when I tell them I am deaf and say “but your speech is so perfect.”  My answer of course it that I have had a lot of practice—not that could tell from this blog.

So my assignment from Camille was to see what others thought of my voice with the research map.  I first asked Mike and he looked puzzled—why would you sound different.  I then explained Camille’s theory and he assured me that I sounded the same.  I asked a couple of others and received the same reply.  So no the map has not changed my voice which is a good thing because it tells me that my voice sounds good/normal to me with this map.

–The second was when Guy, a fellow recipient, asked me if I felt that I had a meaningful improvement overall with the research mapping? The simple answer is that music is awesome so if you consider that meaningful then yes.  His question got me thinking though.  What is meaningful and what choices would I make if I had to.  Would I give up music for speech, absolutely; would I give up hearing in noise for clearer tv understanding, probably not; would I give up telephone for music, tough one; and would I sacrifice voice quality for understanding, absolutely.  To me these are all meaningful issues and I am thankful that I do not have to make any of these decisions or give up anything.

Last two weeks observations—

The WOW moments are subsiding.  I have grown into this research map and am declaring it a success.   Interesting that at almost exactly the two week mark into this research map things no longer sounded high pitched (even less so than my clinical map).  This is exciting and when I add the benefit of music sounding awesome it is a double bonus.  This ear has always been my “weaker” ear (was my stronger ear pre-implantation) but with this research map I feel like it is getting closer to my other ear.  I am sitting here as I type watching the Boston/NY hockey game with only the research ear on.  I can clearly hear the announcers as they talk and understand the players as they are interviewed between periods.  I could probably have done this with my clinical map only on my left but feel like I am not straining as much to hear the tv—I don’t have to pay attention/concentrate as much.  There is a difference, dramatic maybe not but positive for sure.

Side note about rehabbing our ears (something I did not do with second ear as much).  A few weeks ago I had an interesting conversation with a cochlear implant audiologist.  She told me that she felt that cochlear implant success was 80% the recipient’s hard work and rehabilitation and 20% the audiologist’s mapping skills.  I, like most of us, adore my clinical audiologist and still credit her with a lot of my success so this 80/20 theory was a hard sell for me. I know that I did not work as hard with this left ear as I did with my first implant (got lazy) so maybe the 80/20 theory is truer than I think.

I have continued to switch from my clinical map to the research map in certain situations to see the difference.  I truthfully cannot think of a situation where my clinical map was better.  I have used the research map in restaurants with and without focus/beam.  With my clinical map I almost always resorted to focus/beam in restaurants when just Mike and I were dining but have tried to leave the research map on my everyday setting.  I did change it to focus/beam at a graduation party over the weekend.  I was at the far end of the gathering and other than those sitting across from me all the noise was behind me.  The focus/beam setting was better in this situation although I might add it was outside so that too changed the dynamics.  I certainly would not want to give up focus/beam but I can see how I don’t need it as much with the research map—bottom line hearing in noise has improved.

I am looking forward to spending a couple of days at Mark & Britni’s house–poor Mike has to stay home and hold down the fort there.  Now that I have some experience with this research mapping I am anxious to see how I do.  They have very high ceilings, hardwood floors, and an open floor plan—all things that make hearing more difficult.  I know I was missing some things when I was there last time so this will be my final environmental test.  Let’s hope I pass with flying colors.

It will be interesting to see how much my scores change when I am tested this week, exactly 4 weeks after the remapping.  I hope I can get a copy of some of the results to share with you.  I realize that I am not going to see dramatic changes given my clinical map scores are pretty good but hopeful for some improvement.  Having said that, I also feel like the “test results” aren’t always the true measure of how I feel about a map—something I have cautioned others about.  Just because someone says they scored 99% in the booth does not mean they perform any better than someone who scored 65%–it is the real world where the results are important.  Even if Thursday’s results say I am hearing worse with this research map, I think it is better and given the choice I will keep the research map.

I also hope to find out if electrodes 19 & 20 would have been left on had I not had them turned off in my clinical map.  If the study would have left them on, I might in the future try to experiment and turn them back on at levels that do not cause pain—oh the options are endless my poor audiologist.

I believe the next step for me in this project is to have my right processor remapped with the research strategy.  It will be interesting to see how many electrodes will be turned off.  My right ear is what I consider my better ear (but was my weaker ear pre-implantation).  I am not sure if at this point I get to keep the left research mapping or if I have to go back to my clinical map and test only the right ear with the research map.  Should be an interesting few days.

Thanks for listening to my chatter.  Will report back sometime next week.

Connie

Research Map Week 2

I thought I would start out by showing a picture I ran across a few days ago.  It is a picture of my children (twins) on their birthday in 2004.  I think it might have been the last time they were together on their birthday (they live 1,100 miles apart) and work and school make it difficult to celebrate together.  The picture sort of takes me back when I look at it, not only because they look so young but it was also the time in my life when I was desperately looking for a way to hear better.  It would be another year before I actually received my first implant.

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Research map update–again I ask that you please not contact Vanderbilt as yet about the study.  If you read my previous entries, you will see that they are not ready to accept a large group of people as yet.  As soon as I hear any word on opening it up to others I will post.  I certainly do not want to make more work for the people at Vandy and I feel like I would have to quit blogging about this if they were getting lots of inquiries again.  Thanks!!

I think I must be settling in with this map as I have not had as many aaaah moments the last few days.  It seemed like the first 5 days or so were reminiscent of post activation days where we seem to pay attention to/notice every sound.  One new discovery is that my bedroom door squeaks.

I tried my neck loop and iPod with just the research ear Tuesday.  I was at the gym and time goes much faster listening to a book.  Sound quality was great although a little high pitched.  I asked the audiologist at Vandy which electrodes were turned off and she said:  7, 9, 11, 12, 14, 19 and 20 (19 and 20 were already deactivated in my program prior to my Vanderbilt visit because they caused pain upon stimulation).  I have always suspected that the reason this ear hears more high pitches is because I have had those two lower pitch electrodes turned off almost since activation 6 years ago.  Maybe I am just trying to justify sound to myself.

I did an experiment this week as I was typing up a document.  I put the processor on my clinical map and typed away—single processor only.  After a few minutes of listening with my clinical map, I changed back to the research map to see what the difference was.  I figured this was a pretty stable “sound” that I could use to compare—I am a pretty consistent typist and have heard this sound for a long time.  There is a noticeable difference.  The clinical map has more of a muffled/muddied sound than the research map.  I know I used pretty much the same words to describe the difference in music—I guess typing is just another form of music to my ears.  I suppose that it is good that I am consistently experiencing the same thing rather than being all over the map so to speak.  I am also trying to use the phone with the research map (I don’t normally use this ear for the phone).  My daughter thought I was doing fine when we spoke on Mother’s Day and I concurred.  I will keep practicing and intend to try Cochlear’s Telephone with Confidence website to easily compare clinical map and research map.

This week we went to a different church for Mass Saturday night.  It is a bit older than last weeks and thus I don’t think the sound system or acoustics are as hearing friendly.  The priest there is a former engineer—interesting story he decided in his 30s to give up his career and enter the seminary—and still has that engineer voice; additionally the problem is that he uses a wireless device and sometimes when he turns his head the microphone does not pick up the sound well.  He often talks about his childhood in his sermon and this week’s story telling was no different, however, this time I heard all of it.  Now don’t get me wrong I usually hear enough to understand the point, however, this week I don’t think I missed a beat even the nuances of his dry sense of humor.

The music was great again this week, however, I was disappointed in Mike’s response to me about how things sounded.  I asked him if my singing voice sounded any better with this new map and as gently as possible he brought me back to reality and told me NO.  I guess one thing this research map is not doing is improving my singing voice—so I guess that means no Grand Ole Opry performance for me on my next visit to Nashville.  A few friends have suggested some music/songs for me to listen to and I will download them this week to listen to them on my iPod in addition to a few new books I have.

I am still trying to find situations where noise is a problem.  I have not used my Focus/Beam program like I usually do in restaurants and seem to do well with just the Everyday program.  I can think of at least one occasion where Mike did not understand the waitress and I did so that is good. I hope to make it over to the mall (sounds like a good excuse to shop) to test it out and will seek out a few other places as well.

I think the beauty of this whole Vanderbilt experiment might be (in the future) that I could possibly go in and say gee this sounds a bit high and they could look at the electrode situation and say ok well let’s change out one particular electrode for another.  Or maybe I could turn on 19 or 20 with lower T & C levels and add some bass (I do not like them turned on at lower T & C levels with my clinical map—things sound better with them off rather than lowered).  I realize that technically any audiologist could do that at any time (and I know some people who have electrodes turned off on different programs for different listening environments), however, if this research pans out it certainly would make the whole situation a little more scientific from the start.  Rather than just going in and saying OK let’s try this or that, the initial map would be better from the start.

So I have two more weeks with this map.  As it stands now if given the choice I will probably keep it and perhaps in the future ask to have some minor adjustments made.  I think that I am still getting used to it and the sound is fine albeit a bit high.  It will be interesting to see how I test when I return to Vandy in two weeks.  When I tested with my clinical map I did 94% in CNC words and was told that I did well on all the others as well.  Since I started out at 94% there is not a lot of room for movement so perhaps I was not the best person for this experiment, however, I am still honored and grateful that they asked me to participate.

Thanks for reading!!!    Connie

PS  Here is a picture of my other “daughter”–Sadie.  IMG_4605

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

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.