Waiting for the Arrival of My New Naida Q90 Processor!

Over two years without a blog post, you either assumed I got bored of this, died, or am still using the Harmony and have zero news about it. My lack of presence is solely because of the latter. After roughly two years with a processor, there's not going to be much to report because it just becomes a part of your life and nothing changes too much.

I can say what did change about my Harmony over the 5.5 years I've had it though:

• The batteries got really weak. I received four batteries with the processor, which all had roughly a 12 hour life the first year. Around year 4, one of them completely died, and the others were struggling with 6-8 hour lives. At year 5, they were all down to 6 hours. After a mapping two months ago, they all dropped to 4-5 hours. As of this moment, the three remaining ones are struggling to give me 4 hours each.
  
• Constant sweat from exercise or just being in places like Arizona summers, has caused the processor to develop a grainy texture on the skin side (the side that goes against my head). While my processor may have been impacted physically by moisture, it never harmed it internally.
  
• The area were the microphone piece connects to the main body, has become extremely loose. This probably started around year 4. Just looking at it, you can tell it's not fully connected the way it should be. This never impacted the ability of the microphone to work however. While it was loose, it never falls off on its own or anything.

• As far as my hearing goes with the Harmony, my tests from two months ago showed my hearing slightly declined in being able to distinguish speech in noise. However, the results do not have anything to be compared to, per se. The speech tests I was given when I first got the processor were extremely more simple than the one my current audiologist had me take two months ago. 

But today, I've received an email that my new Naida Q90 processor is being shipped to my audiologist! A lot of people are curious how long the process of approval takes, and for me, from the moment I submitted my insurance information that AB requested til I got this email, it was only 2 weeks. I currently have Medicare and State Insurance from Oregon. It was pretty speedy if you ask me.

Now, I just have to wait to hear back that my audiologist received it and then go in for a fitting and mapping. Hopefully this'll be happening within 2 weeks from now. Until then, I'm pretty curious about how different it'll be. AB has made some serious changes between the Harmony and Q90. Most reports are that it is noticeably different in a really good way. Considering it has programs like WindBlock, and Bluetooth capabilities. Those of you totally complaining that I STILL won't talk on the phone, the bluetooth and compilot might be able to let me do that now. I wish it had a 2 prong adapter so that the compilot could be plugged into a walkie talkie. That would make my job a lot easier.

Until then...

Hilarious post on Buzzfeed that only the HoH can relate to

Here's the link: 15 Struggles Only Hearing Impaired People Will Understand.

Made me laugh! I can certainly relate to every single one. Glad I'm not alone!

"Never Mind"

I was regularly checking my facebook feed when I see this shared post about two words that should never be said to a hard of hearing person. Most, if not all, hard of hearing people likely already know the two words before they even read what the person was referring to. They are "never mind."

Here's a link to the opinion piece on Times Colonist. I could not have said this piece better than the author did. In fact, after I read the first few paragraphs, I thought someone stole something I had written in the past! The girl has an extremely similar background to me- by when she became HoH, her use of hearing aids and the FM Trainer in schools and constant annoyance of people saying "never mind" to her when she asked them to repeat something. She really hits it home about how rude it is, without actually acknowledging that it's rude. We just find it insulting; as if we're a burden for needing you to repeat something! The image above is quite frankly, what I feel when someone says it.

I also like that she mentions how hearing for us, is not passive. It takes us a lot of effort and the results can be tiring. At the end of a day, there's nothing more pleasant than being able to take off the hearing aid(s) and/or cochlear implant(s) and being able to relax in silence. For those of us that also have to lip read, it's nearly twice as tiring an effort to listen with the ears AND eyes. I actually found myself developing tunnel vision today when I was so focused on lip reading my boss for 10 minutes. And that was ONLY for a 10 minute conversation. But that's how much work it took me to try my hardest to hear and understand every single word he was saying. As opposed to the half-assed effort I usually surmount myself to in order to prevent myself from wearing out too fast.

Most people don't realize this, even those that have been in my presence often in the past, but I get suddenly tired when I'm around people in social situations when I wasn't even tired before I arrived. This is due to the communication wearing me down... really fast. Shortly after I arrive, I start to disappear to hog a TV or read a book or something. I realize people might think this is me being rude, but it's really me trying to save myself from passing out in a coma of exhaustion. I just canNOT keep up with that much communication, especially if it's a room full of people. And to make it easier, no one really tries to talk to me anyway. I'll spend half of my energy keeping alert in case someone wants to talk, but then, nope. I get it, I'm awkward and quiet and when you finally do ask me something, my answer is probably five words and not all that entertaining. (Which, really, if that's the case, you probably shouldn't ask such a question. I'm not a comedian). But then, just ask me another question! Show interest! I know, you're probably thinking, "why don't you just ask people questions instead?!" Well, because, as mentioned above, it's exhausting for me to exert that much energy. Plus, I'm quiet and not known to just start talking to anyone I'm not comfortable with. My energy is precious, and I choose wisely where I spend it. Plus, I've had too much experience with people brushing me off with "never minds" when I did show interest, but couldn't understand them, and when that happens enough, you just generally start to give up on the human race.

But hey, I'm only (almost) 30. I'm young. I'm growing. And I'm putting myself out there more. Just maybe humanity will win itself back and I'll be that middle age person who talks to everyone. Until then though, you can email me, IM me, and text me as much as you want. It's funner that way.And no one says "never mind" in written format.

Well, well, well...

It's now nearing the end of March 2014, and, I have not posted in forever. Unfortunately, I have nothing to say CI related either! I am simply thriving. My CI is still functioning as well as day 1. It's been 3.5 years now. Really, I am just waiting for the 5 year mark so I can upgrade to the smaller processor.

I can however, talk about my paranoia of my CI eventually breaking. It stresses me out thinking that could happen. If you're a follower (or know me), you know that while I'm "legally Deaf," I do hear - in my humble opinion - fairly enough in my non-implanted ear to get through a one-on-one conversation with someone I know with the help of lip reading. However, my attention span is reduced and I tire out fast communicating this way and eventually look away and piss the person off. :-) The point though, I do not sign to communicate. When I'm really stuck on a word I can't hear or lip read, the person will finger-spell the word if they know how to. If they don't know ASL, it kinda just ends there. I end up feeling like a useless moron for wasting this person's attention while we've become increasingly frustrated that I can't understand them. THAT is how most communication goes when I don't have my CI on. And I don't even want to imagine the day that could happen would become a reality, and last... weeks... if my CI were to ever break. Sad, I know. Whatever. Anyways! It's a constant reminder that I should learn ASL and somehow force people around me to learn it too. Well, actually, while that can benefit me in some ways, it's not going to benefit me with hearing people who don't know it. Shoot! I guess the answer is called paper and pen. But then, maybe it's not! Imagine that the one time I whip out that paper and pen and ask the person to write down what they are saying, and it turns out they can't write! Because they're missing their arms! I'm just kidding; I realize those odds are extremely slim. Like I said, Paranoia. Let's just hope it never comes to its demise. Ever. Or let's just hope that wherever I work when that day comes, that everyone just has a field day with the fact I can't hear a thing they're saying and I would prefer to be in my little cave by myself. Yea, I like this option the most. I guess it just means I need a new job, 'eh?

I remember I posted about a movie that was coming out... eventually... I wonder if it ever came out. Lemme google... I obviously did not keep on top of this film. 95 Decibels was released 10 months ago, and from what I'm seeing, the only way to watch it is to buy the film for $25 from their website. It does not appear to be online anywhere. If anyone has seen it online, feel free to let me know where. I am not a fan of spending $25 for a DVD.

Switched at Birth and a CI

A recent spoiler indicated that over the next several episodes of Switched at Birth, a character will be getting a cochlear implant, but we won't know who until the episode airs. I've read that it might be Daphne, but I also read it could be Emmet's father, who has a cochlear implant in real life and would be able to play the role the best.

However, in another episode, Daphne's character will enter a dream state of 'What If' she had a cochlear implant. Which is something she imagines she would have if she had not been switched at birth and the Kennish's raised her. How different would she be really if she was raised by the Kennish's? Do you feel she grew up into this amazing person strictly because she had Regina, who did everything in her power to make the World an easier place FOR Daphne, but causing her to have to fight for herself? There's something about being given an implant at a young age, in a rich family, that erases the possibility of that kind of learned behavior. I'm not saying she would have grown up worst, just different.

In any case, if you're excited to see these episodes, the episode of "what if" will be on July 8, and the character that received a cochlear implant will be on August 5th.

95 Decibels: A Film

 I recently discovered that there is a film premiering in New Jersey Sept 26, called 95 Decibels. It revolves around the difficulty parents face when they find out their child has a hearing loss, and then the process and drama they go through towards making the decision to give the child a cochlear implant.

ER actor, Goran Visnijc, will be in it, as well as Tyler Hollinger and Megan Corry playing the parents. There isn't much more news revolving around this film right now and unless you score tickets to see it in Jersey, most of us won't be seeing it until the end of the year or early 2014.

Here's the trailer with captions.

A night at the Races

A few nights ago my husband and I went to the NASCAR Nationwide race outside of Phoenix. We were convinced I would end up taking my implant off the moment the cars began racing. However, that was not the case! I found that the ClearVoice massively reduced the background noise to the point the cars were actually tolerable with the CI on. I can't say the same for my non-implanted ear though. I had to put an earplug in instantly before I went nuts. Again, my non-implanted ear hears around 120db, so it's not like I have great hearing in it or anything, but I do hear some things fine (like 20 engines roaring at once, or my husband talking next to me without the CI on). But overall, I guess this is semi-great news for some reason... that the CI can tolerate something so horrible sounding. I doubt I'd be saying the same thing if it was pre-ClearVoice, however.

 On a different topic, I was upset Danica wasn't racing that night. Apparently she was racing for the following night for the Sprint Cup, and even so, she was in the bottom 6 because of a crash. Lame.

AB's Got a New Processor!

Most of you have probably already heard about this news. Advanced Bionics has produced a sleeker processor, that is currently available in Europe. Upon FDA approval (which is likely), it'll be available in the US around this summer. Here's a brochure of it:

If you're looking at the processors on the right side, the new one is the middle white one. The current one is the left, and the right tan one is actually today's hearing aids. Most of the information just seems to point out that the new processor is much slimmer, which will be a breathe of fresh air to all of our ears. Yet, there has been more information that it will have wireless capabilities for things like using a bluetooth, hearing the TV directly and so on. So it'll also have the option of hand held remotes to control those things. I don't know if they will cost extra or be insurance covered, however.

Either way, I have to wait until October 2015 to get this upgrade. Quite lame, but that's how insurance rolls. And by then, it might be even smaller!

2013 Update

It's been 5 months since my last post. I'm sure I've had something to say a few times, but forgot  to write about it. For the time being, I can just update on my implant.

It's going as well as it has been for the past year. I do, however, feel I need another mapping, some more tweaks, to increase high frequencies. Some things are starting to sound a bit low to me. Yet, I still feel it might simply be due to ClearVoice, which did that when I was switched to it. In some ways, I've found it a nice program, in other ways, I've found it to be more limiting than I want my cochlear experience to be. I'm not sure if there's any middle ground around it yet.

I still have my days where I go the whole day without wearing the implant. Sometimes I just don't care to hear the TV, or the doorbell, or the dogs playing. But what can I say? It was my life prior to the implant and it's still a part of me to have complete silence. Plus, I always imagine the day when the implant could fail or break and I'd have to go weeks without it, anyway.

Accommodating Me Throughout the School Years

I recently saw this article and it struck home with me. It is on this site called Hearing and Kids, called "How do we know what a child with a hearing loss needs in school?" It has gave me the urge to share my own experience with accommodations as I was growing up in school.

I was around six years old when I was really aware I had a hearing loss because I was suited with hearing aids and entered elementary school at First Grade (skipping Kindergarten). Elementary school was a huge step out of my league from I recall from years in Preschool. I wasn't aware I had hearing issues before age 6, but when I think back, I was yelled at a lot in preschool for "not listening." I was too young to put 2-in-2 together. I thought I was just a bad kid.

I didn't use any special hearing devices until middle school, but I remember all the hearing issues I had in first grade. That I didn't know what the teacher was saying nearly 70% of the time, that I literally taught myself speech growing up from learning in first grade about how letter arrangements help distinguish the pronunciation of words. I guess I felt I didn't have a choice because I wasn't hearing anyone well enough to learn it all like a normal person. This was the reason I grew up with my speech coming across much different than the norm, and how I wasn't even "corrected" much on my speech until I was an adult! It's only now with my implant have I actually been learning the correct pronunciations and slowly fixing my speech  myself.

Fun fact: At some point, I began calling my teacher Misses Bitch. Her name is actually Misses Fitch. I don't know why I was calling her the B-word, maybe I couldn't hear the "F" in her name. In hindsight though, this was funny cause I was only 6. (Wasn't funny at the time though...)

In middle school, there were better resources around at the time and since its invention was relatively new, the FM Trainer came around. I was lent it to use on school property. It is basically a device that clips into my hearing aids, and uses radio waves to help me directly hear the person wearing another device that had a microphone (usually the teachers). It works almost exactly like a walkie talkie, though it didn't look the same. I wore the FM Trainer everyday until I graduated high school, although I was upgraded to newer versions twice by then. Here's an image of what the one I wore during my last two years of high school resembled:

I loved this one. Mainly because, THERE WERE NO MORE WIRES! Imagine wearing, for 8 hours a day, a box that clips on your pants (like the box in the left image), and has two wires that go up your torso and hook into each hearing aid. It is a pain in the butt. And I dealt with a lot of, "What is that?" and a few, "Take that off! You shouldn't be listening to music at school!" Said one teacher who seriously though it was a walkman. Rude. The new one simply had a little end piece I attached to the end of one hearing aid. It was very modern and very awesome. The teachers still had to wear a microphone system though; I don't think there's much room for improvement within that end.

In college, I only attended campus classes my first three years, and I didn't use an FM Trainer. Mainly because the college had a total old-school FM Trainer... one that was so friggin old, it was older than the ones I used in middle school. And it sucked. Its transmission was horrible. It wasn't worth dealing with. So I went to classes the old-school, tough way, of sitting in the front of class, lip reading, hoping I'm NEVER called on because I'd likely have no idea what is going on, and having a note taker (who sucked). Needless to say, I did OK, but I did fail one class from not having a note taker and from not hearing enough of anything to comprehend the entire course.

It was around this time, I realized campus classes were just going to fail my opportunity of actually learning anything well, and thankfully, that's also around the time the emergence of online courses came around. So I switched to full time online and was understanding material as well as my ABC's.

That article, states one very important piece of information I want to quote,

"The technology is so good, school staff members sometimes think that kids do not need any help. I have had school staff tell me that now that a child has a cochlear implant he is no longer disabled. Well, he is certainly much better than he was before he received an implant, but it is really important to understand that he is still not normal hearing."

This is absolutely correct. I may be hearing 80% better than I have in the past decade, but I am still legally Deaf, I still need accommodations in some ways, and I am in no way, "normal." I have been dealing with the constant need to confirm to others that I still have hearing issues despite the implant, because many think I am hearing normal now. Anyone that actually hangs around me for extended periods of time (like my co-workers) are typically aware of this as they still need to tell me when it's break time or showtime or whatever. Of course, they also didn't know me before the implant, but they should probably be thankful for that (it would've just been a bigger hassle dealing with me).

With that said, this is vital information to keep in mind when dealing with children with a hearing loss who do or do not, have a cochlear implant. It is rude to assume implanted individuals are hearing normal and no longer need help. It is important to know them all individually and realize what works best for each one.

Tinnitus and More

Well.

I've been having some lovely tinnitus in my implanted ear the past few weeks. It's not horrible, it's just there much  more pronounced than usual. Always sounds like a lawn mower in the distance is going off. Lovely.

All I can do is wonder what makes it louder than usual. Is it my lack of sleep? Caffeine products? My nerves still adjusting to the ClearVoice upgrade?

I do tend to turn the volume up a little louder with ClearVoice since everything is somewhat softer. Some high frequency sounds will come across way too loud with the volume I use, but it depends what is going on around me. But sometimes all it takes is one loud noise to turn on my tinnitus. Kinda like if you get punched in the face, you see stars. When I get audibly "punched" in the ears, I hear ringing.

Just thought I'd mention that.

I had the privilege today of hearing someone calling my name at work. Faintly, but I swear someone was saying, "Nichole, Nichole..." and I was looking around me like a freak trying to find the source. Then I walked down a few lanes and noticed my co-worker on a ladder starring at me to help her and realized it was her. Haha, that was fun. It's also nice when I hear my boss calling me from 10 feet away. Or when I can tell that one of two ladies are in the building because they talk so loud (on purpose), even though I never know what they're saying. Except this one word: "Natalie!" One of the two ladies likes to scream that name a lot. Makes me feel like I'm at home. Where everyone screams for each other. The screamer also reminds me of my mom. Enough said.

Other than that, sometimes I listen to the radio in the car, and usually can't make out enough speech to understand what is being talked about. But this morning, I heard one sentence quite well, "At Carls Jr, you can get a large drink for only .69cents!" Well, isn't that lovely. That's cheaper than McDonalds!

Maybe you've learned something right now. Like, that you should go to CJ's just for drinks. (But that's silly. You can also buy a 2 Liter of store brand soda for .69cents. Depending where you live).

CI Heart Rate Study

Today was the day to do my part in a CI study at ASU Tempe. The study, when it's finished, will have 2,000 participants. I was participant like, 1,500 something. So they're pretty close to finishing it in the coming months. The purpose of it is to monitor the heart rate to see if it increases when CI users attempt to distinguish speech in noise. The point of this study, I actually do not know. I mean, what if they find a confidence interval that 90% of the test subjects having an increased heart rate... then what? Would it prove that someone needs to have a currently well-functioning heart rate before they get a CI? No idea. Anyway...

When I arrived, the first thing done is signing some papers - that I will get paid said amount of money, and that I can just leave anytime I want. Apparently some people have had second thoughts about participating at the last minute. Silly people. What's to fear? The only expectation was that we'd be tired by the end of the test. And damn straight I was tired. If a 2 minute speech test for my audiologist can wipe me out, an hour long speech test is draining. Oddly though, that part wasn't even the worst part.

The test was a series of 6 tests.

• Test 1: Speech in quiet. Easy peasy. Like, high 90% accuracy, easy.
• Test 2: Speech in really loud noise. Horrible. Reminded me of why I can't understand my co-workers when everyone is conversing group style. I just can't do it. Too much going on. 
• Test 3: Visual test without implant, in which I was to say the color or word on the screen. Easy. But it goes on for 5 minutes, and by minute 1, you feel like a zombie.
• Test 4: Speech in mild noise. Wasn't too bad. Maybe 60% accuracy.
• Test 5: Visual test without implant, in which I was to say the color of the word, while ignoring what the actual word says. Think, a word that says pink, but is the color orange. I was to say orange. This requires some serious left-right brain control. And it was the most draining part of the test because it requires a ridiculous amount of attention. 
• Test 6: Speech in moderate noise.

That was the order I did them in, anyway. The point of the visual test, I'm assuming, was to see if the heart rate changes from a visually challenging experience compared to an audibly challenging experience. There was a 5 minute rest period in between each test to monitor my resting heart rate.

I could see the heart monitor off to the side most of the time, when I looked, and I really didn't see much fluctuations in my heart rate during the whole thing. If there were fluctuations, they're probably minor, or happened during times I wasn't paying attention (like during the visual test, since I had to look at my screen).

One thing I learned from this test: I hear a female voice better than a males voice now. Prior to the implant, male voices dominated because they were low pitch. But I found it a bigger struggle to understand a male voice in noise, than a females. I also learned, that if I'm ever asked to do a visual test like that again, I might punch someone. But getting how much $$ I did for this study, made it all, pretty worth it.

Also, the test as a whole, felt like one of those affirmation tapes that people listen to and repeat until they've got the speeches brainwashed into their skull. Repeating a bunch of a random sentences for a total of 30 minutes, really made me feel like I was psychotic for a while, and had "I" talking to "me" and "me" talking to "myself." Get it? Obviously you need to re-watch Me, Myself, and Irene.

With that said, I think they still need more participants for a few studies. If anyone is interested in finding out if you are a candidate, contact me somehow and I'll send you the contact email. They'll reimburse the traveling costs and pay you a small sum for participating, per hour (it takes 2 hours).

Otherwise, I hope I get to do another study someday. It wasn't so bad. Makes you feel like you participated in something that could potentially be important.

ASU CI study - I'm a participant!

I received an email a few weeks ago from ASU research center about them obtaining information on my cochlear implant status for a study. Although I didn't qualify for the actual study they were reaching out to me for (because I don't wear a hearing aid in my non-implanted ear), I was told I do qualify for another study they've been conducting for a while. I told her I was all for it, and now I'm scheduled for that on July 11th.

The study is going to measure my heart rate and blood pressure while I listen to voices in noisy environments. The theory is that our heart rates increase. Which I can personally say, mine does. It does get much higher if I'm expected to repeat back what I heard. It's an anxiety thing though. The belief that if I don't understand the speech correctly, I'm going to fail, make my life harder,and make YOUR life harder. Although I'm doing much better at hearing people in noise with this CI, that anxiety is still there, but it's certainly not as bad as it was prior to the CI, where I'd go into an all-out anxiety mode of "OMG, someone is talking to me right now and I'm not going to know what they are saying and we're both going to hate me!" And most of the time, I still had no idea what they were saying, so it was pretty bad for me. But these days, "calm down, listen closely, you'll understand and make these the happiest people for the next 5 minutes," and frankly, I do quite well - 90% of the time.

I'll definitely provide an update on my actual experience with the study, if I'm allowed. I don't know how much of this stuff is suppose to be kept quiet. But I'm pretty excited to be a lab rat for the first time in ages. Oddly. Plus, getting paid close to $60 for 2 hours of my life, is a pretty sweet deal. Having to drive home from the study in Phoenix rush-hour traffic however, is making me second-guess this. Ha.

How I like ClearVoice

I've had ClearVoice for about two weeks now. My stand with it is, so-so. While I definitely prefer it in public, like at my job, because it drowns out all the annoying background noises, but still allows me to hear people when they speak, I don't prefer it in otherwise quiet situations.

My first encounter with it in public was at a baseball game. I recall that they are usually really loud in a muffled way due to the thousands of people talking. I remember it was usually so loud at the games, I had to lean in close to understand my husband next to me. But with the ClearVoice, human chatter was reduced dramatically. If I were to rate the level of sound before ClearVoice at a 9 out of 10, with ClearVoice, it is a 3. Absolutely no complaints about this difference.

At my job, it has tuned out a number of noises, including the air conditioning system, general loudness of human chatter, and even this floor waxer that use to be pretty loud. While this can be kinda nice, because I'm sure even hearing people wish they had the option to tune out annoying sounds like that, and I'm not going to lie, I still embrace being Deaf to some things, but at the same time, I kind of miss those noises. They let me know that I could hear things again that I wasn't hearing prior to the implant.

In quiet situations, such as in my living room where I like to sit with the TV on low, while reading a book and semi-paying attention to the TV, it has also tuned out general sounds like our A/C system, cars, the usually obvious to hear garbage/recycle trucks, and so on. But more importantly, it has reduced the quality of sound from the TV to much lower. Not only do I have to turn the TV volume up louder than I use to, but I even have to turn my implant volume up to get it where I like it.

As for voices, is it making them clearer like it's intended to? No. In fact, I have not noticed any change in my ability to interpret speech, in person or on TV. Although I believe its main intention was to reduce environmental sounds so that speech stood out more. We can either hear everything, or we can hear people so we can communicate better. Usually, we just want to communicate better, so ClearVoice does allow this ability, especially in public situations. However, I am personally going to go back in for another mapping and ask to have a ClearVoice setting for public, and the non-ClearVoice setting for quiet situations. When I'm alone, I feel like I need to be audibly alert. I like to know when the garbage man comes and goes, when there is a faint knock on my door, when my husband is awake, and when small things just make sounds.

Neptune Update

Short update. I asked about getting the Neptune processor since I'm going to a lake this summer and would totally like it if I could leave a processor on to hear. Unfortunately, Medicare only allows someone with a current processor to get a new one every 5 years. So, I have to wait until October 2015 to obtain it. By then, will I even care anymore? Heck, hopefully AB will just come out with a newer, smaller processor by then, which I'd be more excited to get

ClearVoice - What was I actually expecting?

I finally got my implant programmed with ClearVoice today. I've heard nothing but positive results about it and figured it's a must have if I want to hear people talk better.

Advanced Bionics states that many individuals have showed much better speech recognition results with this program, with much better results in children than adults. Certainly sounds promising.

My new audiologist explained that there are three levels to ClearVoice, a low, medium, and high. In which, the low takes out only a minimal amount of background noise, and the high takes out lots of it for optimal attention to be drawn to vocals. She reset all my settings with the medium setting, saying it's typically what people prefer, and it's a good starting point to see how I do.

The first thing I noticed when she switched was that the low static noise that I always hear in doctor offices, disappeared. I assume it was the air conditioning system; I always find it to be the most overwhelming noise in most commercial buildings, even my work. As far as speech changes, nothing. But that was to be expected since it is in an otherwise, quiet office. Plus, after all, if I already have 100% speech recognition in quiet, what was I really expecting with ClearVoice? 120%? Is that even possible?

As I left the office, the next thing I noticed was that my car was driving much quieter. Usually when I drive, I hear the traction of the wheels on pavement pretty clearly, but it had been gradually reduced in sound to be close to unnoticeable. I decided to listen to all the songs I listen to in a cycle to see if they sound any different. Besides some obvious sound reductions, again, in the instruments, I didn't really notice any increase in vocals. Some of the songs even sounded a little less enjoyable than they previously did.
I'll clarify this part - as you'll recall, my non-implanted ear hears at about 120 decibels, which is bass levels. I consider it to be my ear to balance out the implant since my implant favors high pitch and frankly, most sounds under 90 decibels. Thus, when I listen to music, I've got my implanted ear hearing the vocals above anything else (generally), while it'll also pick up any high pitch instruments, such as flutes, saxophones, acoustics, violins, and many chords of the piano. At the same time,the non-implanted ear is picking up the bass, the drums, the bass guitar, low pitch chords of the piano, and the guitar. To me, it's a sweet balance in sounds, and it's the biggest reason I have no interest in getting my other ear implanted. I also rely on the non-implanted ear to hear when I take off the implant, which still functions well enough for me to get around... my house. And I'd rather be hearing something, than nothing, when the implant isn't on.

Other than that, I continued to test the ClearVoice when I watched some TV. Again, no noticeable difference in speech comprehension. In fact, all I've overall noticed so far,is that the sound quality with ClearVoice seems somewhat softer. I had to actually turn the TV volume past 30, which I never do. I leave it at a comfortable 24, usually. (I'll clarify here though, that although a 24 is my volume of choice, my husband, with normal hearing - so the military says (I think they just suck at testing the military) - prefers the volume at nearly 45. So my "comfortable" 24, is no where considered loud).

So, I guess my biggest test for ClearVoice will be when i get my butt in public. Sunday, I'll be attending the Diamondbacks game, and that should be a pretty good testing ground. Tuesday, I'll be back at work, and again, that will also be a good testing ground. The most frustrating place to hear people these days, is, after all, at my job. The building is always loud, with the AC running, the soft but obvious music playing, and if the store is open, customer chatter everywhere. It's usually so environmentally loud in there to me, that I can't hear someone talking to me behind my back. Like the old days. A constant reminder that I am, indeed, still Deaf, no matter what's in my skull.

AB's new processor, the Neptune

Those of you with implants already know about the release of the Neptune sound processor by Advanced Bionics earlier this year. For those of you that don't have an implant and don't keep on top of this type of information, I'll explain. The Neptune is the first ever waterproof cochlear implant device. Like hearing aids, standard CI's cannot tolerate water and moisture without getting damaged. The Neptune, however, can. This is great news for those that are avid swimmer's and will be able to embrace being able to hear while in bodies of water. Even I have to admit, it'd be nice to be able to go to the lake and still have my CI on to talk to people floating on tubes around me, instead of having to go completely deaf. The last thing I, and others, want to deal with, is possibly damaging a device worth more than 20 grand.

It would also be useful for people that exercise often. There is nothing more annoying than wearing the implant and sweating (behind my ear). Some people (even I) may go as far as snagging the ear piece into our hairbands to avoid the sweat-with-plastic contact, but of course, it's a pain in the butt. Although there are some serious pro's about the Neptune processor, it's certainly not an implant I'd be wearing all the time. It still has a wire attachment; it just attaches to your swimsuit strap, shirt strap, swimmer's cap, or whatever clip on area it can reach. If it was wireless, my goodness, it'd be a slam dunk. Although what I really dream of, is an entire processor all in one, that will only clip to my skull as one small piece of plastic. I'm sure that's everyone's dream... science hasn't gotten that far yet. But with the extreme changes we've noted in hearing aid sizes, it'll definitely happen someday!

Jaw issues seem to have resolved

Some of you may recall from earlier posts, post-surgery, that I woke up from my surgery with some serious jaw issues. Something from the surgery set some inflammation off in my jaw and it was never the same. So for nearly a year, I was limited in what I could eat and I avoided seeing the dentist because there was nothing they could do for me if I couldn't open my mouth wide enough. I was recommended to go see a TMJ specialist, but I never received the referral call to make an appt, so I just never bothered to put in the effort to make it happen. Plus, I did all this research on what the TMJ would likely say, and what they would recommend as treatment, and all of it, was expensive, pain in the butt sounding, treatments. Like the splints... where they would make a mouth guard, of sorts, that has to be worn nearly 75% of the time and constantly re-made, (meaning continuous expenses), until eventually, the jaw is more aligned and hopefully pain free and working better. Ya, right... not happening.

What I ended up doing though was quitting coffee and other caffeine products. I did that from about August 2011 until Jan 2012, and frankly, I believe it helped a bit. The possible implications coffee/caffeine have on the jaw is that it increases our bodies tension and it can cause you to clench your jaw more often, aggravating the pain. Other than that, coffee is also known to leech nutrients from us, mainly because of its diuretic properties, and unless you're taking vitamin supplements everyday, you're likely losing lots of valuable nutrients when you drink coffee. There's also been research suggesting it leeches calcium from our bones, which is certainly not good news for us ladies that likely having beginning stage bone issues in our 20s. It's certainly not good news for ME, because I personally hate most milk products and don't acquire enough calcium.

However, after I eventually had my third vertigo spell late last year, I was recommended to get a physical for blood tests to see if there are any deficiencies that could be causing my vertigo attacks and general feeling of crap. Two rounds of blood testing confirmed I had a severe vitamin D deficiency, which is likely the explanation for my constant fatigue I've been experiencing since I was a teen, amongst other things. I don't know if this deficiency is the cause of the vertigo's, but I suppose when it dropped to all time lows and kept dropping over the past  year and a half, it off-set symptoms that were similar to being diabetic and having a massive blood sugar drop. The tests showed I'm not diabetic, so I guess it's all from the lack of vitamin D (and probably calcium, as I stated above).

So, I was recommended to take some calcium and vitamin D supplements, which I have been taking for the past month now. I must say, my jaw is the most back to normal that it has been since before the surgery. Not only that, I seem to be digesting coffee better now. Prior to the supplements, just a few sips of coffee made my body feel like it was physiologically punched. I would feel tired right away, usually end up taking naps nearly 2-3 hours of waking up from 10 hours of sleeping, and my brain would literally shut down to the point I couldn't really do anything but be a zombie. But I have not been experiencing those symptoms at all since taking the supplements. Who knew calcium and vitamin D had THOSE kinda affects on our bodies? All we hear is that they're good for our bones. So, we assume that if we don't get those nutrients, that our bones are just going to cave in earlier than they should. We don't think it's going to affect our digestion with other products though, or how we metabolize, or how it affects our minds... or that it could even have anything to do with your jaw. We just don't stop to make these connections enough, we don't get more well-rounded information from our doctors, and we don't do our own research until we're personally affected by something.

I suppose you could say this is partly why I became so interested in health. Although my interest stemmed in 10th grade during my first health/nutrition class that made me consider my diet and habits. I'm more prone to research since I began my Bachelors programmed in health education (and have since acquired my degree in Dec 2011), and want to be able to educate others on the important of nutrition. If you must take supplements, then take them. Some research may say supplements are pointless, but hey, it probably varies by the nutrient. Because I certainly notice the positive affects calcium/vitamin D supplements are having on my health, and I'm sure others would to (including all those old ladies popping those pills like candy).

With that said, I'm pretty happy my jaw is feeling better. It's nice to be able to eat things that use to aggravate it. It's nice to be able to enjoy the billion cups of coffee I drink these days because of my absurd work hours. And it's nice that I can make a dentist appointment again and finally get my teeth cleaned/checked up on.

My advice: if you feel like crap and have for years, go see your doctor for a physical and blood tests to see how you're doing. It could be as simple as finding out you need more of a certain vitamin or mineral to feel better. Certain deficiencies also seem more common based on locality. In Phoenix, for example, despite the ample amount of sun available all year round, vitamin D deficiency is really common out here. When in doubt, see your doctor and do ask if it's OK for you to take multi-vitamin supplements and so on.

Silence is Bliss

It seems I've been missed. I understand. I'm missable. (Missable should be a legitimate word).

A month ago, my husband and I have taken in his childhood dog, Dyna. She's about 13 (or 14) years old, and recently had surgery to recover from getting hit by a car. His parents couldn't handle her anymore because she requires being looked after and his mom couldn't handle seeing her so beat up anymore. I understand. Even I can't stand seeing her in this condition. My husband however, has the mindset that she will stay alive as long as he can allow it (and as long as she never requires expensive surgery), regardless of her condition. So, here she is.

Besides that fact she has only 3 useful legs (the other one was damaged from the accident and unsuccessfully can't be fixed), she also has heart and thyroid problems. This requires some daily medications, which we, unfortunately, forget to give her every single day. Although she didn't receive the meds for about a month before we got her either. As a result, she is losing her hair as fast a cancer patient and developing scabby skin. Today, she actually started bleeding from a scab on her backside. It's kinda gross and not a sight anyone wants to see. But hey, my husband loves the crap out of her.

The reasoning for telling you the story of Dyna is because she is the first thing I have encountered that has made me happy I can take my implant off sometimes. This is because she is a whiner. It's like having a baby in the house sometimes. And last I checked, no one likes the sound of crying, wailing, tantrum-throwing, fussy, needy babies. My husband says she's been doing this way since she was a baby herself. It's her awesome(ly neurotic) way of communicating that she wants food, to be petted, to go outside, or who knows what. Unfortunately for her, she is not pet-able anymore, she's on a diet since she can't exercise anymore, and when she does go outside, she pees and poops so fast that you're pretty sure all she wants is to come back inside. So, these days, it just seems like her annoying habit. And I can't yell at her ALL the time, so I take my implant off and enjoy silence.

Silence is bliss, I tell ya. 

Just when you think it's ended, it really hasn't

For some time now, I've thought I wouldn't have any issues with my CI. Nearly two weeks ago, after beating a cold, I developed vertigo and the nausea that comes with it, again. Totally unexpected. Granted, it wasn't as bad as it was when I had it after my surgery or back in January 2011, but it was bad enough that I had to leave work a few times or risk vomiting everywhere (or fainting, even). I had to go back to the doctor for some anti-vertigo drugs to subside it. One pill is all it takes for the worst of it to go away, even though I can always feel it lingering during the first few hours after waking up, for several weeks.

Supposedly, this might still be a sign that I still have Benign Positional Vertigo (BPV) which was somehow set off during my surgery. I did read up that it is a rare risk of the CI surgery, as some stones in our ears can get shook loose during the surgery. In January, my surgeon gave me some exercises to do to subside it, which I did for about two days, then felt better, and figured I'd not bother doing it for another few weeks. It's likely I just need to do those again and see if the vertigo never comes back. But with my luck, it'll be a recurring condition with no idea what sets it off.

Lame.

Other than that, the quality of sound from my CI shifts, mostly seems noticeable when I'm sick and when I've had caffeine. Caffeine is an enemy in my body, even in tiny quantities, and sets off my tinnitus, as well as fatigue, tiredness, and sometimes headaches. The sound shift with the CI is that I become really sensitive to it at the lowest volume and that just tends to aggravate my tinnitus even more. Other times it sounds garbled. Kinda like if you're sick and your voice is compromised but you speak anyway and sound ridiculous, that's what the sounds will come in like.

For the most part though, I'm still hearing rather well with the CI. I am overdue for another test and mapping, however, which I am probably going to need to schedule myself since my audiologist of the past year has taken a job elsewhere. However though, I still have no interest in going bilateral.

25% Auditory Improvement

I had a three month CI check up today. We started with the basic beep test... I'm hearing at the same levels I was three months ago, except my high frequency dropped a notch. In my defense, I've have tinnitus going off again this past week and it does affect my hearing tests because I'll assume some beeps are the tinnitus, so I won't click the button, and I'd rather I get that wrong than falsely correct, so I played it safe.

Usually when I do the speech test, there is a mans voice playing from a CD, but the CD player was broken today, so my audiologist did the vocals. This may have biased my results because she's a female, she speaks clearer and I'm familiar with her voice. Even though, the automated male voice is also clear, and males are easier to understand than females, so it might just be that I'm familiar with her. Either way, I got 100% on the speech in quiet and 84% on speech in noise. That's pretty much a 25% improvement from three months ago.

The future speech tests will likely fluctuate in the top 80% due to the way I process speech. For instance, when I hear these sentences, I'm never hearing every single word correctly, but I manage to repeat back the correct sentence by assuming what the missing words were based on the sentence's proposition.
Example: "The girl went to the farm." I may hear 'the girl went to the arm,' but obviously that sounds wrong, so I manage to process that the last word was probably farm.
Otherwise, there's just some sentences where I can't make out half of the sentence and can't even take  wild guess what it was, and that's what gives me a score of 84%.

I mentioned that I felt I might've needed the high frequencies raised due to not being able to distinguish certain sounds yet. She mentioned it's pretty common and there's not really much more the CI can do for me at this point. If I'm not telling them apart, then I just gotta rely on sentence structures and lip reading, which I do anyway. She did try to raise the high frequencies though, but ended up reducing it by 2 points because it was just too intense at the level it was currently at. But she did raise the decibels for high frequencies... which I think she said means she raised the amount of firing the electrode will use to help me hear high frequencies, while at the same time, not raising the depth of the frequencies. Something like that. It's over my head.

So now I've got three settings on my CI: normal, tv, and noise. I hardly ever use the noise one because I'm not really in public much and when I am, the noise isn't bothering me to the point I consider switching modes. Although I should test it out more often because it might allow me to hear grocery clerks better than I do with it on normal. The tv option is so I can increase the CI volume without dealing with the intensity of the high frequencies. This is cause I consider my husband auditorily bipolar. Whereas I like the tv volume at 28, for the same show, he would like it at 38. But if we're watching a movie, I like the tv louder because the vocals are typically reduced for movies so to enhance action sounds, but he likes the tv lower than I do in those cases. So in cases like that, I can turn my CI volume up and hopefully hear more of the vocals. They also have the sounds set like that in theaters, which even with the CI is STILL annoying.

Quails and updates

Over all, my CI journey has reached a standstill. There will not be much else to say about it unless I'm a victim of malfunctioning or some random ailment as a result of the surgery or implant (which is all unlikely). Or perhaps if I get a new processor or get to participate in a study... or have a kid or find a job... all, which is unlikely for at least 2-4 years.

As I was pulling weeds in our backyard all week, I was hearing this whining sound that made me think of a dog that is crying. But it was tough to imagine there would actually be a crying dog outside nearly every single day, several hours a day. So when Thomas came out one day and I heard the sound again, I asked him what it was. He says it's a quail. Which is odd because I have yet to even see a quail out here... but for the time being, I guess quails sound like crying dogs. Sad.

I do have another CI mapping in a week; my first one in 3 months. Then I won't have another one until mid August, I think. My CI has absolutely had no "growth" towards hearing low pitch. Everyone told me it would eventually adjust, but it's not seeming that way. I think I once read that the electrodes often don't reach those very deep areas of the cochlea where low pitch nerves reside, so if that's the case, that might be way I'm not hearing any. The only burden is it's tough to actually hear most music the way it should sound. But then again, since my non-implanted ear pretty much only hears low pitch, I seem to have some balance in sounds between the two ears. The only singers I am able to enjoy these days it's people like Celine Dion, Mariah Carey and Whitney Houston. It's all about the vocals and who can carry some pitch. My past taste of alternative rock has gone out the door cause none it sounds the same anymore. Totally bummed.

On the other hand, my ability to grasp high frequencies is still a challenge. I've had one setting on my processor for 3 months now and I have not been able to increase the volume on it by any means... which would have allowed me to hear even more high frequency sounds. So I expect a 5 point increase in high frequencies on my mapping next week and nothing else. But maybe the preset volume is just too high? I'll have to mention it.

My speech comprehension should be better than it was three months ago, despite the lack of practice over the entire 7 months. I have not been able to find any pre-set sentence programs online to practice with, and my husband seems to just always be too busy with something to practice with me. But at the same time, when we practiced for 5 minutes a few weeks ago, I was bombing the word distinctions in a predictable way, likely due to the high frequency settings still being set on the low side, making it hard for me to tell apart similar sounds.

There's news going around that there is a new AB processor that has been developed and is being used (I think) in Europe. It's called Neptune and it's suppose to be small enough to be worn while swimming. Not that I'd ever care about wearing a hearing device while I'm underwater, but IT IS SMALLER! If it spreads to the United States, I might be able to upgrade to it in about 5 years... unless I wanna pay chunks of bucks for it out of my pocket (naw). But my ear will be so excited!

Adventures with the insults of society.

I was talking to my husband a week ago about something and he pointed out to me how rude people in public have been to me. It was fascinating to discover because I've been completely clueless about a lot of it for nearly a decade. I mean, I'm aware of a handful of people that have been rude, but I wasn't aware of how many have actually been rude. Let me clarify what I'm even talking about...

I'm talking about the rude behavior deaf and hard of hearing people (and probably even blind people) experience from the people of society that work in customer service positions, or just society in general. Whether it be a grocery clerk, a fast food server, customer service rep for companies or amusement park works (to name a few). I'm sure many of you have experienced this and know what I'm talking about already.

I remember the first time I experienced something this ridiculous. I was 18, at Taco Bell with my best friend and boyfriend at the time. There were 2 guys at a table next to us just talking really loud, and while I wasn't aware at all what they were talking about, I noticed they just kept glancing at our table and laughing, so I just smiled in response to them. While, my best friend is giving them an evil eye and my boyfriend was acting uneasy. After about 2 minutes of this, my boyfriend snapped at them and walked away upset and me and my friend just went after him and I'm like "what's going on?" Apparently the 2 guys must've figured out I had a hearing loss so when I just kept smiling at them, they kept talking crap to me and I just kept smiling, and my friends just got really pissed off about what was happening and how they were taking advantage of me.

According to my husband, something similar has happened several times while he was in my presence. Once we were at Six Flags Magic Mountain gearing up for that thing where you swing in the air, and one of the workers was talking totally to the back of my head telling me what to do and so on. Of course, I had no idea he was talking to me because he was behind me, but apparently he got all insulting and was like "are you deaf or something?" which I didn't hear, but my husband did and totally yelled at the guy for being so rude because I WAS deaf (kinda). And then the guy felt like a serious douche and left. Again, I had no idea any of this had really happened til he told me the story. All I did grasp was that the guy was being somewhat impatient and rude with me, but it never occurred to me any of it had to do with them trying to talk to me and being unaware I can't even hear them.

Another story is we were at the grocery check out and the grocery clerk was asking me like three times for something, which I didn't hear, and she started to just speak louder and ruder to the point my husband is like "isn't it obvious she can't friggin hear you?" Yea, I guess that made her realize I was hard of hearing that she was being rude. Apparently, this happens to me most of the time I'm at a store and I'm not aware of it most of the time. Not even with my implant, because stores are pretty loud and I still can't hear when clerks are talking to me most of the time unless I'm looking at them before they speak.

After ten of years of stuff like this, I'm still a bit untouched by it all. I mean, I'm flabbergasted that people are seriously this rude to people like me and that I wasn't aware it was happening more than I realized, but I have never let it all affect me much. Quite possibly because it's not MY problem that so many people are rude. If anything, it's all a reminder that society DOES treat those with disabilities indifferent. Sure, they're rude because they think WE are being rude and they don't know why, and that once they realize we actually have a disability, they feel SO sorry as if we're suppose to forgive them, but seriously, it's a show of character on their behalf, and many of them are totally inconsiderate and ignorant and insulting. And it's a wonder I can't a job on my own when lots of you don't believe how seriously tough it is for someone like me to be viewed at an equal level of someone who can hear fine. It's rare and it rather requires connections or someone understanding to look past it.

So really, people, whatcha say ya'll grow more compassion and understanding of how different people are and quit being rude to anyone that doesn't make your life easier. Cause seriously, imagine how easy MY life has got to be. Stuff like this is right up there next to bullying and not everyone is going to react to such behavior as easy as I do. For those of you that have stood by me at some point and stood up for me, love ya'll.

What goes down, can only go back up!

Yep, you read that correct. My hearing may have seemed to decrease nearly 2 months ago, but after my last hearing test, a month ago, everything went back up. My test on basic beeps increased by 5 decibels for 250 hz, 10 db for 4000 hz, and probably 5-10 db for 8000 hz (it was not recorded on my previous test), and remained the same for the remaining hz. As of 2/22/11, I am hearing borderline right on the end of the spectrum of "normal speech level." With that range being 0 db to 20 db. My next test will be in May, and it should show slightly  more of an improvement, but it might not as I might be at my plateau, although improvements can go on for another year and a half, at the most.

My speech tests went back up to. Speech with no background noise was 68% accurate, with only 42% for speech in noise. If you'll recall, nearly 3 months ago I got about 53% or so on hearing in noise. A bit of a drop, but yet, a nice improvement compared to the actual drop I had 2 months ago. I basically got to keep working on hearing high frequency sounds, like "shhh, tsss, sss, etc," as I'm not telling them apart appropriately yet.

Any vertigo, nausea, dizziness I had 2 months ago, is now completely gone. I have been able to drink coffee and alcohol again and experienced no negative side effects. Which is kind of strange at the same time because one beer isn't giving me the buzz it use to give me, and one cup of coffee isn't making me feel fatigued and tired like it did prior to the surgery. Feels like there has been quite a shift in my brains reaction to both chemicals. Besides how great coffee tastes, I'm starting to think "what's the point?" of drinking either. They do nothing; they just taste good.

Other than all that, I am happy to say I can hear birds sing again. It is awesome. We have a handful of "song birds" and hummingbirds that fly around near our backyard because of all the trees in our neighbors backyard. I haven't heard birds sing in nearly 10 years. Also, I think we have pigeons living under our roof and they make a ton of clacking noises. I mean, it's either that, or we've got ghosts or something crawling around up there... but I'm sure it's the pigeons, because we've seen them. And we're going to kill them. (Naw, we're just gonna get them from being able to stay in our roof).

Latest annoyance I can hear: things rolling around in the car when I'm driving. Was a lot less worrisome when I couldn't hear bottles and trash rolling around when I turn corners, but now it's just really annoying that men can't throw their garbage out. (or girls, if you're messy).

How am I doing with conversations? Pretty well. In fact, for the first time in ages, I had a week long chat with my visiting stepdad and I didn't have to say "what?" a billion times or lean in really close to hear him all the time. I felt "normal." It was nice. Now, I can't wait to experience the same with my mom when she visits sometime this year because she's usually a lot harder for me to hear.

Health improvements

So basically all that crap I went through (vertigo, nausea, headaches, etc) lasted an entire month. I would say over the past week I have noticed the BPPV is practically gone... and I have NOT been doing the exercises I was suppose to be doing. I was suppose to do some 10 min exercises, 3 times a day for 2 weeks, and I probably did a total of 3 of those 10 minutes over 4 days; I just wasn't very desperate to do them (and they're boring) and I felt worse after 2 of them. The only thing I've been feeling is some lightheadedness in the mornings and a few times over the days. And although this motion symptom I STILL have is a side effect with BPPV, despite the lack of vertigo, I've still had the motion blur when I turn my head from left to right. It's not as bad as it was a week ago; I can pull off driving without feeling like I might crash or something; but it's still here. Also, my jaw problems came back a week ago too; awesome.

Other than all that, I mentioned in my last posting how my hearing levels seemed to have decreased... the level of clarity I was acquiring from speech dropped. Until today. When I put the CI on a few hours ago, the voices on tv, and even my voice, suddenly sounded more sharp and clear. We'll see if this is just a day thing or not.

I suspected the caffeine and alcohol were contributing to my problems I've had all month; although it's not confirmed, I have not had either in 2 weeks and I can't help but wonder if that's why I'm feeling better. I have managed to start my 40 minute cardio sessions again and carrying heavy things. Although my balance can be weak at any moment, which is also probably related to the motion blur in my eyes, so we can assume I've got some balance problems now. My surgeon would say it's all part of the healing process. This whole thing has made me a little sad though because I don't think I will EVER go back on roller coasters anymore. To say that at 25 yrs old is depressing. But being able to hear certainly dominates roller coasters.

Previous and latest hearing tests

Dec 21 Audiogram

I had my last hearing test and mapping back on December 21st. I had some basic increases in my mapping as we are still trying to get me use to high frequencies. The following audiogram shows my test results a month after my activation (Nov 9) and the slight improvement I had a month after that (Dec 21). I do not have a copy of the audiogram from today, but only low frequencies increased slightly with my high frequencies remaining the same.

Speech test with background noise

This is a speech test from Dec 21st. I was to repeat 10 sentences as I "think" I heard them; one is done with quiet and the other is with noise added. As you can see, I did exceptionally well on both of these tests back in December, getting 65% accuracy in quiet and 53% in noise.

Speech test with no background noise

The bad news, today's speech test was pretty bad. I only got 22% accuracy on both tests. In my defense, the vocal level "seemed" quieter than it should've been and if this is so, it's likely because of whatever is going on lately that has been affecting my quality of hearing with the CI. For instance, I have been hearing voices sound "crackled" every now and then and just last night, the CI sounded really soft and i had to turn the volume all the way up to hear at where I should be hearing.




























Other than that, I saw my surgeon about my vertigo, nausea, headaches, tinnitus, and facial pain. At first, he was just ready to let me leave and said he thinks my symptoms are just because my ear is adapting to the implant and it should go away eventually. Then I mentioned that the vertigo seems to mostly occur when I'm laying down and he's convinced it's Benign Positional Vertigo. So to fix that, I have to do some really boring "exercise" for 10 minutes, 3 x a day for 2 weeks. There's a 95% success rate that it will go away, but there's a 33% chance it will come back and all I can do is repeat the exercises. I guess the nausea/vomiting just goes hand-in-hand with vertigo-like attacks?? Other than that, he thinks my facial pain and headaches, if not most of the symptoms, are related to my TMJ and that my right jaw is possibly inflamed. The end. He didn't even look in my ear or anything or suggest a CAT scan. What about how I feel "unstable" visually? Does this mean I now have an vision issue on top of everything else? I mean, the unstableness can be correlated to when someone has.. dizziness... my eyes could not focus on movement without giving me nausea and a headache and sometimes something as simple as walking makes my eyes feel like they are reseting themselves because of the thumping of my walk, or the thumping from being in a car. Make sense? I suppose my surgeon would say it's a balance issue and part of the healing. So, I guess all I can do is get a night guard (for my mouth) and practice the exercises and see how I'm doing in 2 weeks. If my attacks hit again, I just take the meds I already have, although the surgeon was specific in saying I should not take the drugs too often unless I really need them.

Guess what I'm hearing right now? Not sure really, but it's sounded like an air conditioner is going off IN my ear since I got the mapping increased. Another reason I'm sure I didn't do too well on the audiology test because the humming is distracting.

I've got another audiology test in a month as a precaution to be sure that my test today was only a temporary setback. If my test results next month are like they were today, then there's possibly something wrong the CI or the CI+my brain/ear/whatever.

Health Update

Since my visit to the doctor, I left with some anti-nausea and anti-dizzy pills to basically prevent me from dehydrating myself again, as that seems my biggest threat when I get vertigo and nausea cause I can easily go days without eating and sipping barely one cup of water/liquids. The pills worked for the most part, although I felt like either the anti-dizzy pills aren't working 100% or I'm having side effects from one or both of them that is just causing a small amount of dizziness. It's been two days since I've taken a pill and I feel like I don't need them lately. Lingering symptoms is mostly a deep feeling of lingering dizziness that will definitely come back full on eventually, headaches and tinnitus. Tinnitus use to not bother me very much cause I had it so often and it was usually short lived, but for the past two weeks it's been like a motor going off in my right (implanted) ear and its been always accompanied with a tension headache.

Another side effect, which is the most uncomfortable one, is this feeling deep in my arms, hands and legs that feels like something is insulting my nerves, or maybe my blood. I can't really explain what it feels like; it's just really uncomfortable, makes me shake my arms, take deep breaths, switch positions and wait for it to go away. It usually always kicks in when I'm laying in bed and the only other times I ever feel it, is when I'd drink more than one glass of wine at night.

On a side note, I've also noticed caffeine, in coffee or tea format, and alcohol are setting off the symptoms. Again, no idea why. It's all sudden and I have never abused using either drinks.

So far, I got called in to take a pregnancy test today to rule that out as the cause, because of the nausea and vertigo (apparently vertigo is a rare symptom in pregnant ladies and lasts up to 3 months), and I expect the test to be negative for several obvious reasons. Plus, if it required being as sick as I was to have a kid, I don't think I'm going to ever want a kid cause that's just a death threat. Also, apparently my surgeon is out of the country for the next two weeks, so I can't get a consult from him for another 2 weeks at least. And if my symptoms come back or get worse, I'm just suppose to call his nurse... and then probably go to the ER since they'll be my only option.

I expect to be called in for a few more tests, but I'll find out over the next week or two. Some research I did tonight suggested viral labyrinthitis, but again, dunno. Really can't find any information at all on possible infections post-cochlear implant surgery. All anyone reads about is Meningitis, and I doubt I've got Meningitis, as the symptoms don't match and I had the vaccine.

Another update- 2 hours later:
Uncomfortable pressure, tension and tinnitus in my right ear right now, radiating in the area in front of the ear, up to my temple. Also, I took the CI off for an hour because it's irritating my ear, and when I put it back on, voices are making a crackling sound... like when someone is sick with mucus in their throat and they sound all broken up. It also seems to make the tension and tinnitus worst. I experienced the same crackled voices a few days ago too, but it went away.

Sudden Vertigo and Nausea

I realize it's been a while since a post. My husband and I are in the process of a buying a house, and on top of that, I have my usual school load, which I am behind in. We also left town for a week and that put us behind a week in a lot of things. I will eventually post about my improvements during my last evaluation and audiogram testing, but by the looks of it, I will be back from yet, another, mapping by the time I post about that.

For the time being I wanted to post about my side effects. If they directly or indirectly related to the CI, I do not know yet. But I can't help but think they are.

Basically the day after we got back from a week in California, I woke up with vertigo that lead to nausea and throwing up 3x. Which of course led to not getting much food or liquids. That day was a softer version of the day after my surgery when I was stuck in bed with seriously bad vertigo for 2 days that lead to my being severely dehydrated. For the past week, I've had a little vertigo, a little nausea, and a LOT of sleep. I'm worried that any day I wake up I'm going to have another attack and it totally sucks. So I can't help but think it's related to the CI in some form or another, but I have no idea what is setting it off 3 months after my last episode.

My research shows I may have Benign Positional Vertigo, in which some calcium deposits have gotten loose and this causes vertigo when my head is in certain positions. Which completely applies to me as the vertigo sets in the most when I turn my head while laying in bed. Other than that, yesterday I was pretty normal for the first time in a week, until I was laying in bed watching tv, and it started happening again. Only this time I noticed my fist was under the back of my skull for merely 1 minute before the vertigo kicked in, so now I can't help but think I've got a blood flow problem with my brain stem. Again though, what is setting it off? The only other alternatives are basically, anything, electrolyte imbalances, dehydration, blood infections, etc., which I'm going to demand my doctor take some tests to at least eliminate them as causes on friday. If the doctor comes up stumped because she's going to automatically assume something typical, like dehydration, I'll be off to my CI doctor.

I could also mention I have had lockjaw for 2 weeks now. It is not as bad as it was a week ago, but it's not really opening all the way or being completely pain free when I eat something mildly crunchy. Again, this is another thing I can't figure out what set it off, although my dentist is assuming that if I had a tube down my throat for the surgery (3 months ago), it may have irritated my jaw and set off some inflammation. Again though, it was THREE MONTHS AGO. So ya, I'm stumped. Gotta figure out what is causing these problems all of a sudden.

If anyone else has had random episodes of vertigo and the like after surgery, please do tell me. Cause there is NOTHING about it online.

Great news!

I have realized today I have not had to ask anyone to repeat a sentence in nearly 2 weeks. I'm not as worried about being around people anymore cause I'm always confident I'm going to hear them fine, and I do tend to. I also managed to hear Thomas say a sentence in the car, without looking at him. Though, I think he was talking like I was deaf cause he didn't seem to process I could possibly understand him in the car yet without looking at him. Nice. I must say it was convenient,.. and safe... as I was going off the road a lot less. :-)

On the flip side, we have not been practicing sounds. It's been 2 months since activation and I'm such a lagger. I've got my first official hearing test with the CI in just a month too.

Do I wear the CI all the time? No. I tend to put it on a few hours after I wake up if I'm going to watch tv or go somewhere, or I might just wait til night time when I watch tv. I might also put it on if I feel I need to be alert to something, such as UPS arriving, or even Thomas coming home. On rare days, I just won't wear it at all. I also take it off several hours before I go to bed because my ear just reaches a point where it kinda hurts from the device. Which by the way, seriously needs to be made smaller. Poor kids that wear these things.

Certainly have improvements

Well, I haven't posted much in a while. Nothing is necessarily blogable, but I can say my hearing has improved with the CI indefinitely. Rather, it's more noticeable of the improvements. I can simply listen to videos from the computer now without needing headphones (in fact, I prefer using the CI than headphones now), even though I do not bother to use the cable that will allow me to specifically hook the CI to the computer. I also do not bother to hook the CI to my Ipod when I go running, and just use headphones and my other ear. Mainly due to the sweat I develop when I exercise, but also because the CI is still picky in what music it likes and what sounds it is picking up.

I have been able to understand people a lot easier without having to ask anyone to repeat; however it can still be hard to hear someone who isn't within 6 feet of me, whose lips I can't see, and if there is a lot of background noise. My husband and I have not been practicing speech as much as we should be. Mainly cause he is never home and I'm always busy with schoolwork or just excited to get out of the house. But I can certainly hear when someone behind me is talking compared to me walking away from them in the past because I had no idea.

I have yet to try the phone. Although I have been capable of actually hearing people talk through speakerphone, although, I was only able to make out numbers compared to actual words. I have considered eavesdropping on my husbands speaker calls as "practice with the CI." Haha.

Music is still vague. If there is a lot of instruments going on, especially bass, the song will sound abnormal. A drum will sound like the high pitch keys on a piano. Therefore, the most simple songs tend to sound the best so far, such as Celine Dion's "It's all coming back to me," which sounds absolutely clear. Especially her amazing voice, which makes her songs anyway.

My next mapping is on the 21st, and I'll be mentioning all this to my audiologist and hoping she can make a few more adjustments that will make, at least, music, sound the way it should. Plus, some sounds in speech are still not as clear as they should be, and that might be because high frequencies need to be raised more in order to distinguish the differences.

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? :-)