One year update

Today marked my one year anniversary with my cochlear implant. Technically, that day was on March 31st. However, today I went back to Washington University for my one year research appointment with the cochlear implant team so I am considering TODAY to be my one year anniversary. I'm not going to lie, I was a little nervous. I've been wearing my CI everyday as much as possible but other than that, I have not done much of any rehab or practice with it alone. Last night, I used my "Sound and Way Beyond" program for the first time since September. This software program is a good rehab tool that I got when I received my CI. I wanted to see if sounds and words would sound different from the last time i tried it. Last time, I only got to the part where I had to differentiate between vowel sounds. It was really hard because they all sounded the same so I never tried going further. Yesterday, I focused on the section in which I had to differentiate between the words. While familiarizing myself with the words, I was really surprised that most of them sounded like the word shown. However, if I had not seen the picture associated with the word, I'm not sure I would have recognized the words. On the closed word test (choose between 2), I got about 80% correct. Not bad! I was a little less nervous now :)

At my research appointment today, we went though all the tasks that I have done previously in the past year (4 hours of it!). I did my best, but I really could not tell if I was performing better on the tests with both my CI and my hearing aid or just my hearing aid alone. I do know that I am more confident about my responses when I have both on. In the past 6 months, I've noticed that I am doing better in noisy situations with my implant than without it. I'm also picking up more soft sounds and am more aware of people approaching me when I'm not looking. I'm not sure what the results from today will reveal, but in the real world I can tell a difference. I will say that today, I noticed I was able to differentiate between tone pitches and count the tones (important for programming the CI levels) better than last time. I think that there is still room for improvement. The research audiologists seem to think so too. It's amazing how people vary so greatly in their successfulness with a cochlear implant. Anyhow, my CI was reprogrammed today and it's amazing how much improved it is than before! I think I will like this new map. I'm excited to see!

"Relax Your Ears"

A colleague sent me this website: relax-your-ears.com because the musician, Joel Styzens graduated from her alma mater, Miliken University. Styzens is a very talented musician who suffers from tinnitus and hyperacusis. Instead of ending his music career, he turned it into a new music career with an award winning album. He has also formed a tinnitus support group in the Chicago area. This article in Chicago Tribune shows how he deals with his tinnitus and hyperacusis. These are serious conditions that affect millions of people and usually has no cure. Read on!

Letter to the Dept of Justice - Movie Captioning

The Department of Justice (DOJ) is proposing a regulation to require movie theater owners and operators to having movie captioning and video description available for 50% of movies shown within 5 years. Great! How great is it that the DOJ and technology is finally in a position to allow equal access for the deaf/HoH people and blind/low vision people?? I mean, it's about time and there are many other things they need to help enforce (like captioning for internet videos and shows). But they are making progress on this also! Several organizations such as the Hearing Loss Association of America (HLAA) and others are encouraging hearing care professionals and people with hearing loss to write comments to the DOJ regarding movie captioning. So...I decided to contribute. The DOJ is proposing (in a few words) to require movie theater owners and operators to have 50% of movie showings ready for captioning and video description within 5 years. HLAA stand on this issue to have 100% of movie showings available for movie captionings and video descriptions. That way, people who need them can see the movie of interest at any time they choose and therefore equal access.

This is all great and having the ability to view even 25% of movies would be great but I have a different concern: the type of captioning they will require. In the St. Louis area, AMC theaters have been good about making some movies available with captioning. However, most theaters are only equipped to show closed captioning. Also, it is usually a kind of closed captioning called "rear window captioning." If you have not experienced this, it is not an enjoyable way to view a movie. You have to ask for a bulky device from the front desk and then you have to position it in a cup holder and then make sure you sit in a specific area of the theater where the captions can appear onto the screen of the device. And then also position it somewhere in front of you where you can see both the captions and the movie. Sigh...it's kind of difficult, isn't it? That is, if it works at all. Movies that are open captioned (which have the words playing right on the screen) are much more enjoyable and effective. I wrote to the DOJ that open captioning would be more cost-effective because many more deaf and hard of hearing people would go to the movies. So what if non-deaf/hard of hearing people don't want to see the captions. They might be glad they were there so they could catch what someone said if they missed it!

9 month post CI surgery

Today I went for my 9 month CI appt for the research study. It's hard to believe it's been 9 months! A lot has definitely happened since then and also since I last wrote in September...I'm a terrible blogger! Since September though, I have been adapting to my new drive, new life back in St. Louis and spending time with friends and family. Oh and Brian and I got engaged on Dec 23rd! It's a been an eventful and exciting 2010. I may have struggled with adapting to my CI but I think it's finally stabilizing and I miss it when I don't have it on!

Early December, I had my processor remapped with new settings and new programs. Since then I have noticed that I have been wearing my CI processor more consistently and am more comfortable with sounds. It's probably a combination of getting used to the perception of hearing through it and also the new levels. When I had my CI remapped in December, my audiologist gave me 4 new programs. One with no input processing, one with ADRO, one call Focus (BEAM, ADRO, and ASC), and one with ZOOM. The Zoom feature was new to me. Previously, this feature was only available via the remote. Of course, I never used it because I hardly ever carried the remote with me. Zoom is supposed to find the source of speech in a noisy environment and direct the microphone to hone in on it. Before that, I had been using mostly the program with Beam, ASC, and ADRO, which I liked best because I could tell it reduced static noise significantly and also made soft sounds sharper thanks to ADRO.

So now for the past month and half, I have been using mostly the Zoom program. It seems to work better when I'm in the car and listening to the radio. Since I started working, I've been listening to KMOX on my drive to work because they usually speak more clearly and I know what time certain broadcasts will be going on. I can't get everything, but I like listening for the weather and traffic report :) When I am in a restaurant, I seem to do well with the Zoom program but I also like the Focus program too. They sound different but it is difficult to tell what the difference is. I think the Focus program makes softer sounds louder which helps.

So back to it being 9 months! During the speech perception tests today, we did a lot of listening to words and sentences (in quiet and in noise) with my CI side only, my HA side only, and both CI/HA. With only my CI, I was able to get about 5 words right on the word test and some phonemes. But out of a 100 words, that's still not much. However, words sounded more different from each other than before. I also seemed to do better repeating sentences in noise when I had both CI/HA on compared to my HA only. My audiologist was concerned that I was not detecting the very high frequencies (thresholds were in 40s) so she increased the levels and gain for those today. I could not tell a big difference but we'll see when I'm partaking in meaningful conversations.

I guess I should also mention that I finally got my rechargeable battery system! And my microphone covers! After contacting several people, they finally came. The rechargeable batteries are awesome. They usually last about a day and half and I still carry my disposable battery pack just in case.

And last but definitely not least, I do have a new years resolution for 2011: Spend more time practicing with my CI only! I'll let you know how that goes :)

Good Article

A friend forwarded this article from the washingtonian magazine. It's about the experience of an author working with a Deaf student/writer. The author also has hearing loss and has a cochlear implant but his experience and views differ greatly from the student's. It touches on the multitude of perspectives that intertwine among the hard of hearing/deaf/Deaf individuals who ultimately live a hearing world. I can relate to some of the author's experiences. Read on:

http://www.washingtonian.com/print/articles/6/0/16737.html

New news

This came out on July 23, 2010 but check it out: The FDA has approved a rechargeable battery system for the Nucleus 5 system! This means that I, along with the many others who have received the N5 since last October has or will be receiving the rechargeable batteries soon. I have not received mine but am waiting for it's arrival. The rechargeable batteries also mean that the N5 sound processor can be surmerged under water for up to 30 minutes. I will be able to wear my N5 around the pool without worrying!

I am continuing to wear my CI everyday from the time as much as I can. Sometimes I even wear it while working out. However, the sounds of the cardio machines and weights dropping are really not that pleasant. I unfortunately am not doing as much rehab exercises as I should but am doing well when I have both hearing aid and cochlear implant on. I am working on getting a new hearing aid soon as mine is almost 4 years old and am afraid it might go out again soon...

In other news, I am now working as an audiologist at Ear, Nose, Throat office (ENT Associates) in Chesterfield. I have now been here for 5 weeks. Yay! It's great to finally put all my hard work to use! I do not see cochlear implant recipients but I see primarily adults for audios and hearing aids. I enjoy the people I work with and working with people to communicate better through hearing aid technology.

I am also working on starting a young adult chapter for the Hearing Loss Assoiciation of Greater St. Louis. If you know someone who is between the ages of 18 and 35 and would be interested, please have them contact me. Thank you! It'd be great to get young people in this area together to socialize, learn from each other, and know others are out there! :)

3 month post-op

Yesterday I went back for my 3 month research appointment at Washington University. As part of this research study, I go through different listening tasks once before surgery, and at 1-month, 3-month, 6-month, 9-month, and 12-month post-op. The testing usually lasts about 4 hours. Yes, 4 hours. As you can imagine, I was very exhausted by the end of it.

The goal of the study is to determine what benefits (if any) can be reached for persons with an asymmetrical sensorineural hearing loss. These individuals may have one ear that audiologically meets cochlear implant candidacy but the other ear does not because that person is able to achieve better results on speech perception tests with a hearing aid than necessary to meet typical cochlear implant candidacy criteria. However, people with this kind of hearing loss often struggle more so than the tests show, especially in noisy environments (and when with multiple speakers) and they also cannot localize sounds (determine where sound is coming from).

I sat through a lot different speech perception testing. For those who know what these tests are, this included the following:

100 CNT words with my left ear only (hearing aid side)

100 CNT words with my right ear only (CI side)

HINT sentences at 0 degree aszmuth in a R-Space (restaurant noise is presented from speakers surrounding me) with BOTH CI/HA

The same test with my HA only

BKB sentences while wearing CI/HA in multiple conditions (speech and noise at 0 degrees azmith, speech at 0 degrees and noise at 270 degrees, speech at 0 degrees and noise at 90 degrees)

The same test in all conditions wearing my HA only

TIMIT sentences at 50 dB HL with CI/HA,

TIMIT sentences at 50 dB HL with HA only

Another test somewhat like BKB sentence test but the level of noise changes depending on my answer with my CI and HA and then HA only.

I don't have the full results as of yet, but Laura (my audiologist) and I agreed that I had made a noticeable improvement compared to my 1 month post-op. At 1 month, I was very bothered by the noise and did not see much difference in results when comparing CI/HA and HA only. During yesterday's testing, I got more words and sentences correct when I wore my HA and CI than when I wore my HA only. I could not do any tests with just my CI. I could hear the words but they all sound similar. I did get a couple CNT words right though!

I also responded more easily with both my CI/HA on. I'm not sure I scored much better with both my CI/HA than with my HA only but I was certainly quicker to respond and more confident about my answers. I was also doing better when sentences were presented at a very soft level and in noise.

I was happy to see that I am making progress. Laura and I believe I will continue to progress over the next 6 months, 1 year, or even 2 years. It will be interesting to see how I do clinically when I'm working. I think it will be easier to communicate with my patients than before. I'll also need to figure out how to configure an FM system with both my HA and CI so that I can take full benefit of both ears when I perform audiometric testing....

I also had my map reprogrammed. My CI thresholds in the booth were in 25-35 dB range but in the 40s in the higher frequencies. My T-levels had increased in the higher channels. My new map should help improve my thresholds in the higher frequencies. My overall T-levels are increased also which should help me hear more soft sounds. Today, everything is somewhat louder than before but not bothersome :) I think it will be easy to adjust to this time. :)