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 one..it 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 nancy.wise@vanderbilt.edu ; I'm sure she'd be happy to answer any questions!

9 comments:

Sam said...

Sounds like you're really making awesome progress. Congrats!

You made it a point to mention that it could be available to every implant brand. Does that mean its been approved by the FDA or will it have to go through the process?

Jennifer said...

I have no idea what the process will involve. Since this is a strategy that doesn't require anything except a CT scan and turning off electrodes, I'm not sure it will require FDA approval. I have this program on my first and second slots with seven electrodes turned off, and then I have Hi-Res 120 with all 16 electrodes turned on and running on my third program. It's not a "program", per se, so much as it's an adjustment, simply turning off electrodes. All other adjustments are made normally. That's why it will work with all brands. I don't know what kind of regulation will be required before it's available across the board.

Ann said...

Thanks so much for your latest post, Jen. It is so exciting that you are getting better results with this new strategy. I am very happy for you and so grateful that you are sharing your impressions.

Having your hearing take a nosedive earlier in the week must have been frightening. I do not have Meniere's, but I sure hope that research will lead to better treatments for it.

I think what excites me most about the Vanderbilt study is that, as far as I know, this is the first major study focused on improved mapping for all CIs, regardless of manufacturer. I think this is huge, and Vanderbilt (and its financial sponsors) should be commended for that.

For those of us who have experienced struggles with sound-quality issues, this is a huge development. I realize that it's not likely to help everyone. But what surprised me most about my post-surgery experience was that when I had results that fell short of pre-op expectations, the industry didn't seem to care. I hasten to add that my surgeon was sympathetic and uber audi Jayce Wolfe in Oklahoma City volunteered many, many hours trying to help me, out of sheer kindness. But I got the distinct impression that the CI manufacturers' focus is on improving their market share rather than worrying about the 5 to 10 percent of patients (or whatever the number is) whose results were below expectations.

I hope I'm not coming across as negative. I DO appreciate that I hear significantly better with my CI than I did with HAs! It is just super exciting that there may be yet more improvement on the horizon.

Pam Fisher said...

Jen, you are providing an incredible service informing us of your experiences. Congratulations on your success, and thank you for sharing. Each time I learn from you, I feel an increased sense of hope for the future (even though I'd absolutely LOVE, LOVE, LOVE for Vanderbilt to contact me NOW).

I identified with the hearing experiences you pointed out-- mainly, being able to generally hear males much easier than females, but also the experience of hearing great one minute, and then experiencing distortion the next without warning and without explanation. Your story makes me feel as though someone out there understands this frustration, and that, in itself, is very comforting.

Thank you Jen, and thank you Vanderbilt! This study is HUGE.

Catherine said...

Jennifer, I saw that you posted yesterday, but wanted to wait until I had time to read it with a clear head. And of course I just slurped it up! I have been busy with work, and gardening, and haven't even written to the email address you made available here, and feeling somewhat guilty about it, but I did want to write a really good email. So I was glad to read that it is likely this program will be made available to everyone soon! Thanks again for your informative posts, you write clearly and well!
I did want to add my regrets for your recurring bouts with Meniere's. I have it but usually it is momentary. I just hope that one result of this new program will result in fewer and fewer bouts.
Thank you again for your posting. They say the best things in life are free? :)

Richard Freeman said...

Is there any success story upon prelinguals upon this image guided mapping study ?

Catherine said...

If by prelingual, you mean born-deaf, I hope to add my story!

Richard Freeman said...

Prelinguals means born deaf :-)

Audiologist would turn off over 70 percent of electrode arrays for pre-lings > I hope I am dead wrong...

Richard Freeman said...

Today Is The WHEN I will get this mapping. THis is the end of April !!! What's Now ?

Rick