AB Recalls HiRes 90k Implant

A few days ago, Advanced Bionics recalled its HiRes 90k implant... the same one I specifically asked for 2 months ago. It is stated that two people came forward about having severe pain, shocks and extreme sensitivity to sounds within 8-10 days of activation and had to have it removed. The cause of this is unknown however, and it also seems unclear of when exactly these individuals came forward, although it sounds recent. Further assuming that the potential problem may be from implants that were mailed out two weeks after mine, if not sooner.

Although I should not entirely be alarmed, I was told that 9 more people have since then come forward with the same problems stating they occurred within 3 months of activation, although there are no reliable sources about this in the news yet. In which case, if this implant is going to fail me, it'll happen within the next two months or else it'll wait a few decades to give up.

Someone that gets an implant does not ever want to read/hear about something like this happening. Especially if it's all happening around the same time frame where you could be a victim of it too. Because at this point, if this implant fails me and I have it removed, chances are I can't get a new one because it's going to be pointless because the removal of the implant will further damage all I've got left in my cochlea. Then I'd have the option of implanting the other ear instead, or accepting the reality and moving on with my life... in which case, I'd choose the latter. Either way, I 'should' be fine, but I guess it's unpredictable. If it doesn't fail for whatever the cause of the current failures, it'll fail eventually someday anyway. 

CI setback

When I was waiting for my surgery for the CI, I was warned that even though the CI will improve my hearing and communication, it's not going to perfect it. Of course I was aware of this and never expected perfection, but a few nights ago I got my first taste of proof of it. I was at walmart at the checkout and realized I couldn't hear the cashier talk at all because the store was so loud due to its electricity usage causing hums and all that crap. That was the first time since getting the CI that I felt like my usual hard-of-hearing-in-my-own-world self. I was kinda sad because it shouldn't do that!! If I wanted to be myself, I would not wear it.

There is a program called ClearVoice for AB's recipients and it is an upgrade program. Unfortunately, the FDA has not approved it for this country yet, and it is only available in Canada and Europe, and I think I've heard even Mexico has it. It is suppose to have the capability to zone in on vocals while putting environment noises in the background so it improve communication in situations similar to what I was in at walmart. There is mostly good reviews of the program, but some bad. But either way, I and probably many in this country, can't wait to have it and at least test it out.

What's the FDA waiting on anyway? They approve of bugs and poop in our food but won't pass a potential beneficial implant program? Why is the FDA in charge of such medical things anyway? They are the "food and drug administration", not "medical" anything. Perhaps a separate administration needs to be developed for such cases. The MA: "Medical Association" and I will be President. Kinda serious there. :-)

Speech Test: 2nd attempt

I took the Advanced Bionics speech test again tonight to see any improvements compared to last time. Last time you may remember I started getting mixed sounds in the different consonants/different vowels section, as I had mistaken words like ring for joke, and had an 85/100 score. This time I heard the word ring every single time and got it correct, but am mistaken words like fun for pear because fun sounds like pick. Yet, I seem to be hearing the f's fine in other words, and I can hear pear fine when they say it. I got a 93/100 this time around, which isn't too bad. 

Then I moved up to the same first consonants/different vowel test and started going downhill again with a score of 36/50. The more I tried to figure out what word on the chart it was saying, the more I got it wrong, but if I really focused to make out just the vowel during the first try, I tend to get it correct. Although if you were to give me a total speech test and expect me to repeat back the correct word, I might get like 1 out of 20 right. I also got a 36/50 on the initial manner test... which I believe is like the previous one expect more of the words were alike and had one small difference in their sounds.

What's neat is that I can hear r's fine now. Back in middle school, I was specifically in speech therapy to focus on my r's... I couldn't hear them well nor could I pronounce it. It was like trying to get me to speak Italian as my therapist told me to put my tongue on the roof of my mouth. Either way, my car sounded like caw. The most confusing part was that as I watched my therapist pronounce it, she/he didn't seem to be saying it the way they were telling me to so it was ridiculous. My lack of correctly pronouncing r's made people believe I had a Boston Accent. Maybe I did. I pick up accents pretty well and can imitate British or Spanish after one listening. After all, my parents are from Massachusetts (as I was born there, but wasn't essentially raised there).

I've got another week with my CI at these levels before my fourth mapping, in which my levels will be raised further. I feel like they need some leveling out though... as my speech testing is showing I'm not distinguishing a different set of sounds now. Fun should not sound like pick. Like ring vs joke, it makes no sense, but if they're on that test, obviously experts realize how they can be confused. But I don't.

Third Mapping/ Hearing Improvements obvious

Need I say more?

Just kidding. But seriously, see the improvement from basically pre-surgery to one month after activation (2 months after surgery)?? Yea!

It was not a thorough evaluation I had today, but a quickie test to see how I'm doing cause I asked when I'd be able to get another beep test and she said at 3 months (in 2 more months), but she has so much free time and was like "why not?" (she = audiologist).

I mentioned to her the speech test I did last night and she agrees I'm where I should be, but after the test she did, realized I really gotta do much speech therapy, so sent me home with copies to practice with my husband. I don't even think my audiologist knows how I can't hear the difference between ring and joke. But what can we say? Just gotta practice. And hopefully my brain will learn to distinguish.

Other than that, I had my IDR increased to 80, the max, I assume, and my electrode levels increased about 5-15 points (over the 3 settings I have on the CI, as I adapt to each level to prepare for another increase in 2 weeks). I asked her how much the levels range from, and although I didn't get a super clear answer, she mentioned that most people with the CI reach the 200-250 range and remain there... while right now, I'm ranging between 150s to as low as 115 in the high frequencies. Although the aim is to get all the frequencies leveled, it's something that I won't achieve for another 3-6 months cause the high frequencies take a lot of time to get use to (for obvious reasons- no one wants cymbals going off next to their head all day).

Other than all this, I go back in two more weeks for some more tweaking and in about 2 months, I'll have another hearing test, and maybe a speech test, to see how I'm really doing. Oh, and she mentioned my own speech has already improved and that my voice is more volume appropriate. haha. Which was funny and kinda nice to hear cause I usually get insulted that I speak too low or too loud (too loud compared to a whisper, psh), and it use to hurt my feelings cause people were asking me to "speak up" which makes me feel like I was yelling and it was just way uncomfortable. Plus, it's always strange when normal hearing people gotta ask a deaf/hard of hearing person to speak up to begin with... isn't it? :-)

Hearing exercises

I went into the Hearing Journey Listening Room tonight to finally check it out. I downloaded the CLIX program and played around with it for the past hour. First starting with 'suprasegmentals' (whatever that is) and passing it easily because it was kinda retarded. Giving me the option between things like "eeeeeeeeeeeeeeeeeeeee" and "ba." The next level on different syllables was also pretty easy to the point I just had to quit and move on to the next level of different consonants/vowels. Now this level is where I starting making mistakes. Out of 100, I got 85 correct. But I was mishearing things like catch vs pass, jake vs gift and ring vs joke. The last one is totally amusing me because how in the world does RING and JOKE sound alike? I can't tell them apart with the CI, but if I say them right now they definitely do not sound alike. I would assume this means my CI needs some tweaking somewhere if I can't tell a strong O apart from an EE.

Also, according to this site (click site), I need to have my electrodes adjusted so my frequencies will be of equal volumes. There is a calibration test of 16 beep frequencies, and half of them sound too low to me, with the last four frequencies ranging from 3022-6665 seeming like I will have issues tolerating them at a higher volume. They're not loud at this moment, but they have that high frequency pitch as if cymbals are going off next to you. And how many people like to hear cymbals? Ya.

Either way, tomorrow is my 3rd mapping that I was suppose to have last thursday, but came down with a short cold and had to reschedule.

Improvements and Thoughts

Voices have improved. I can tell a girl from a boy now. Singing voices on the other hand... some sound really... crappy... but some sound smooth, though, voices are still, overall, incomprehensive. But not all. I have managed to watch people talk on TV without reading the captions and hearing/understanding probably 40% of speech. But it certainly depends on the person talking. Reminds me of back in middle and high school when I used an FM trainer... this CI feels equivalent to it... noises go directly to my new ear and like I could with the FM, I understood speech waaaaaaaaaaay better, sometimes without lip reading.

Some people think I'm going to love this CI so much I'll be willing to get my other ear implanted as soon as I can. Let me just clarify the way I perceive my situation right now...

Before I got this implant, I didn't want it because I was completely content with who and how I was. I may have trouble hearing people, I may be anti-social because I grew up this way, I may feel discrimination (with no evidence: haha) towards actually scoring a job I would do completely fine at if someone looked past how much I fail an interview because they have to repeat things four times, but I accepted it all. My idea of being happy is being satisfied with who I am and where I am in life, and although it took me until I was 22 years old to get there, I got there. Therefore, I must also mention I'm not a fan of change. Just the idea of throwing me into a social situation (also a changed situation compared to my preference of sitting at home reading), makes me imagine how uncomfortable and boring the situation will be. Although to my realization, the situations are never even as bad as I imagine them, and it takes me reminding myself that in order to talk myself into something, but sometimes I forget, and will totally back out and be alone... where I am the most happy.

Either way, I got this implant because I somehow became open to change and the possibility of my life being a bit easier, if not a lot easier, just by supposedly hoping to hear a little better than I do with hearing aids (since I never wear my hearing aids in the first place). It would be great to be able to succeed at a job interview and actually get a job on my own someday (or maybe with some recommendations, haha) and it would be great to hear what someone is saying to me after two attempts, compared to 4+ attempts and using a third party to explain... assuming we don't give up. Those are just two things I want the most, everything else that comes along with having the CI will just be awesome. But I mean, is it really necessary that I can hear this fan over my head making a ticking noise? Naw, but that's how normal people feel too!

Although having bilateral implants would improve my ability to socialize even greater, I don't see it as necessary. I feel like I have the best of two worlds right now: I've got this bionic device in my head helping me learn to hear as humanly as possible, and I've still got my other ear, no matter how severely deaf it is, that still allows me hear the things I've been hearing for the last 10 years, allows me to hear basic things and still talk/hear when I'm not wearing the CI, and allows me hear the music I've liked for 11 years. Why would I want to give up this ear that is molded me into what I am? Because let's face it, most of you wouldn't even be in my life if I grew up with normal hearing; because although I'm auditorily limited and different from anyone you probably know, I'm pretty awesome from the solitude I've had growing up. I'm not saying getting the second implant would make me less awesome, I just don't see is as necessary.

Will there be an exception? Quite possibly when my my ear completely gives out and is utterly useless. Now that my right ear is naturally deaf, I actually have a deafness to compare my left ear too, and at this point, it seems like an awesome ear when the CI isn't overbearing it. I'll probably be in my 40s the day my left ear completely gives up, but the technology might even be more amazing by then too.