How the time passes, a new year

As I sit writing this, there are just over 8 hours until 2014 comes, a new year, which will bring new joys, new sorrows, new challenges, new adventures, new friends and hopefully much more of the same happiness I have had this year. I want to take this time to recap the year.

While most of 2013 was a blur, there are a few things that stand out.

In February I was diagnosed with a rare brain disorder that threatened to take my precious eyesite. I was diagnosed with IIH, which I have written about here, herehere, here what it feels like, and a little bit here. And while it isn’t getting better… it is only sometimes getting worse. And the best news I could hope from with this… as of right now, my eyes are safe.

Come May… my most common thought was how to make the things in my head more appealing, how can I show them off? How can I… honestly… make them LESS BORING. And I came up with magnetic decoration! I still have, and occasionally use these.  I also, was moving. I moved from my home in Colorado to my new home in Arizona at the end of May. I am still working with the same company, but have moved locations a few times.

In August I confronted a prejudice I have, when it comes to communication, visual communication actually. I will admit, and did admit, I had seen Cued Speech as a lesser form of communication, I thought it was weird, I thought it didn’t work, I thought it was… useless. I don’t think that anymore. I feel it has its uses, I feel there are times for it. And while I will not be using it as my main method of communicaiton, I have been learning it.

In October I wrote about my Left CI failing, and while it happened at the end of August, I’m not counting that as an august post. It was hard, it was annoying, but it was replaced in November, just 2 days short of my 25th Birthday.  November also was activation which went remarkably good. And I am now doing well with my implant.

This month I have written an N6 Review and I still love it. I also have been to the dentist what feels like enough to make up for the many years I went without seeing one… something I will NOT be doing again any time soon. I will be going to the dentist for my 6 month check up just as I should.

Another very exciting piece of news… my sister is getting married June 1st!!! This will mean a trip to Colorado! It will also mean I will have to wear a dress and figure out how to keep my Cis on with an up-do.

I think this is enough for now (read back if you have to) and I will try to post more often in 2014.


Adventure at the Dentists

The same day I had my left CI activate, I also made a visit to… the dentist. If there is one thing I’m scared of, its dentists. I had called ahead a week and scheduled the appointment, informed them I would need an ASL interpreter, and was told that would be no problem. Making the call was hard for me, and I was imagining how difficult it would be actually going. With my CI’s, although I can hear and understand fairly well, when I am nervous, upset, scared, hurt or otherwise indisposed, my comprehension goes from good to absolutely pitiful. For this reason I needed and wanted an ASL interpreter.


I was able to muster the courage to go to the dentist, it was only because a friend of mine was going with me. When I arrived, signed in, I was then informed, there would be no ASL interpreter for the first visit… because… “there was no communication” in that first visit. Not only was I scared, but now… I was livid. The one thing I was counting on to make this visit at least a little bearable was that I was finally going to be able to understand what was said, 100%… That didn’t happen. The dentist was a jerk, he talked down to me like I was a child, I only understood about 30-50% of what was said… and that was only because my friend was helping me. I decided to show him why an ASL interpreter was necessary, I turned my voice off, and started just signing, he looked petrified. He told me that they didn’t schedule interpreters for this appointment because about 50% of them didn’t happen. I informed him of other options than a live interpreter for appointments where they don’t know if it is going to happen, such as VRI from companies like Purple or ZVRS. Then I got xrays that hurt like heck and scheduled a second appointment to review. I was mad, and I was very close to not going back.


When I talked with my partner, who had visited this office, I was told, I saw the wrong doctor… so I called and changed the appointment to the right dentist, and hoped for the best. I told them I would REQUIRE an ASL interpreter, and informed them of the law.


Well, Monday I went, and… there WAS an interpreter… I have to say being able to take my Cis off, and not having to hear the drill like I did before my hearing took a complete nose dive, and not wearing my hearing aids during the appointment to attempt to understand, but being able to SEE what was said… made the appointment much much less evil. I have to go back and have a bit more done, but I finally got my front tooth fixed I damaged when I was young, it seems it was damaged to the point where it needed a root canal.


I have to say… it wasn’t as bad as I had thought. The best thing was being able to understand everything, and STILL be in complete silence. When I didn’t have to use my HA’s to attempt to understand what was being said while he was in my mouth, but instead could take my CI’s off and see everything that is being said, I felt much more comfortable.


I have another appointment next Thursday… and thankfully with this dentist at Comfort Dental, Dr. Abe Miller, was nothing like this… which is how I picture all dentists.


N6 Review

Cochlear has recently released their Nucleus 6 processor. There are due to be many advancements with this processor. With my recent revision surgery, I was able to receive 2 N6’s, one for the right (original implant) and one for the left (revision). While there is still much that hasn’t been approved for it, even though it has the capabilities within the processor, I have to say I do see an improvement.

First let us see what Cochlear has to say about the processor.  Nucleus 6 Features  (I’m only going to be posting what is new with the N6, and doesn’t have to deal with the internal piece.

  1. Better than a Hearing Aid –

Because all a hearing aid does is amplify sound. It makes everything louder, including background noise. This is where a cochlear implant can really seem like a miracle worker. It’s designed to not only make sounds louder, but clearer.

  1. Sound can change quickly. Now your sound Processor can, too. –

Every place is different. With different sounds. One minute you’re walking down a quiet street, the next you’re stepping into a crowded restaurant. You go from a concert hall filled with music to a stadium filled with cheers. And now, thanks to synchronized microphones and SmartSound® technology, you’ll hear your best in all of them.

Unlike most sound processors, the Nucleus® 6 Sound Processor has synchronized microphones that focus on the direction the sounds are coming from, filtering out what you don’t want to hear and tuning in to what you do.

Then the innovative SmartSound technology optimizes the sound to enhance your hearing in any environment, including ones filled with music or background music.

If you prefer to have more control over your hearing, you have the choice of using the sound processor or the remote assistant to make simple modifications to your hearing so you hear your best in any situation.

  1. Our Most powerful Microchip yet –

The heart of the Nucleus® 6 Sound Processor is a chip that’s 5 times more powerful than our previous sound processor. It’s powerful enough to take advantage of an entirely new concept called data logging. And it will let you use future innovations, including advanced wireless technology. As the breakthroughs come, you’ll be ready.

  1. A Processor so smart, it can tell you where its been

It can be hard to remember what happened yesterday, let alone the last month. With data logging, you don’t have to. It records exactly how your sound processor is being used every day. It fills in all the gaps, so your audiologist gets a more complete picture of your hearing experiences, and makes any necessary adjustments so you can hear your best.

For parents, the data logging functionality provides added confidence that your child is hearing their best at all times. For the first time ever, key information about your child’s Nucleus® System can be downloaded by your audiologist for evaluation. This is a minute-to-minute, comprehensive record that lets the audiologist know how your child is using the system and if it’s being used correctly, especially when you cannot be with them.

  1. It’s a whole new wireless world. And you’ll be ready

Just being able to use the phone like everyone else is life-changing. That’s why our Nucleus® 6 Sound Processor comes with a telecoil so you can talk on the phone without plugging anything else in. But that’s just the beginning. The Nucleus 6 Sound Processor has a chip that’s 5 times more powerful than our previous sound processors. And soon, you’re going to be able to put all that processing power to good use.

With a simple software upgrade that’s under development, your Nucleus 6 Sound Processor will directly connect to an incredibly wide range of 2.4GHz wireless devices . You’ll use Bluetooth-enabled music players and some hearing aids without any wires, ear buds or additional accessories hanging around your neck. The audio signals from your TV, stereo and GPS will broadcast right to your sound processor, just like it was an extra speaker. Whatever wireless wizardry they come up with, you’ll probably be able to connect to it.

  1. Built to be strong and Durable

To truly experience a world of sound, you have to get out there and explore the world around you. That’s exactly what the Nucleus® 6 Sound Processor was designed to handle. With a special water-repellant nano-coating, the Nucleus 6 is resistant against water, sweat and humidity all the time.And, built on a titanium foundation – the highest strength-to-weight ratio of any metal – it’s strong enough for whatever adventure life has in store for you. For even more peace of mind, it’s backed up with a 5-year warranty that’s just as strong.*

  1. 5-Year, No quesitons Asked Warranty

You can worry less with the most comprehensive warranty out there. In keeping with our promise to Hear now And always, your Nucleus® 6 System comes with a no questions asked 5-year warranty.*

The 5-year warranty covers your:

✓ Sound processor ✓Magnet
✓ Coil ✓Remote
✓Cable ✓Battery Holder & Cover
  1. Convenent Remote Assistants

To help you feel confident your hearing is optimized and your Nucleus® System is working properly, we designed the Nucleus 6 with another industry first, our two-way remote assistants.You have two to choose from.The advanced remote assistant puts you in control of monitoring and managing your hearing with built-in diagnostics, simple navigation and troubleshooting features.

The pocket-size remote control allows you to adjust your settings without touching the sound processor.

  1. Accessories that let you hear just the way you want


Whether you want to be discreet or live out loud, the Nucleus® 6 Sound Processor allows you to do both. With a wide range of colors and sound processor covers to choose from, you can have a different look every day.

The Nucleus 6 Sound Processor is small and fits securely and discreetly behind your ear.And with our range of soft earhooks that have been ergonomically designed, it’s as comfortable as it is discreet.

In addition, the Nucleus 6 Sound Processor comes with disposable batteries that last for up to 60 hours of life, so you can wear it all day without worry.*

*Rechargeable batteries for the Nucleus 6 Sound Processors are not yet available, pending FDA approval.

That’s a lot to Live up to… so lets look at each feature quickly.

  1. Better than a hearing aid

Yes, My implants are better than my Hearing Aids were, but you have to remember that 1. Cochlear implants don’t work for everyone. 2. Not everyone qualifies for a Cochlear implant. 3. A cochlear implant doesn’t replace normal hearing.

  1. Sounds Can change quickly. Now your sound processor can, too (SmartSound iQ)

Unfortunately… I can’t comment on SmartSound iQ yet, as it isn’t FDA approved. I must say I am excited to try it though.

  1. Most powerful Microchip yet

Can’t argue, but I can’t say for sure

  1. A processor so smart it can tell you where its been

This is very cool. I went back for my one week checkup, and was able to see how my progress was made, and how much time I spent on each program, and with what accessories. This is very exciting as it will help both myself and my audiologist plan for what will need to happen in the future with my CI and what programs will be appropriate for me.

  1. It’s a whole new wireless world. And you’ll be ready

Again, not FDA approved.

  1. Built to be strong and Durable

The N6 is lighter than the N5. It feels a little less durable… but I think only time will tell.

  1. 5-Year, No quesitons Asked Warranty

It is important to note, this is only with new surgeries. For upgrades / replacements it is still a 3 year warranty.

  1. Convenient Remote Assistants

I do have both remotes, and will cover that a little later. The size difference is amazing.

  1. Accessories that let you hear just the way you want

The earhooks are much more comfortable, as is the snug fit, I will again make more comments on this later down. I LOVE the processor covers, and the fact my coil can now be colorful! Exactly what I wanted! (I really do like color!)

So as for their claims, so far it seems like they aren’t making any false claims, just a few that haven’t been approved from the FDA yet.

The first thing I noticed with the N6, was how light it was. The weight difference doesn’t seem like it would be much, but it really does make a difference. When you have a device sitting on your ear for 10+ hours a day, especially right after surgery, the new ounces makes a HUGE difference.

Once I put the N6 on, and it was turned on, the other thing I noticed with my right (older) ear, was how much… quieter it was. It wasn’t that I couldn’t hear things, it was that the background noise was much quieter. It was almost as though the volume for the background noise was turned down, while the speaker’s voice was turned up. It was wonderful. Before with the N5, I would have to struggle to hear if there was any background noise, with the N6 it is much easier. Now, it is also important to note, there is new software that hasn’t been applied yet, because it hasn’t been approved by the FDA, this includes the SmartSound iQ, the Noise Reduction and the Wind Noise Reduction software. Even saying this… background noise is MUCH better. I can’t say why this is, I’m curious if it has to do with the 5x more powerful microchip or because the microphones are in different locations than before. The everyday program, or what is now called the “Home” program on the N6, is better than the noise program on the N5, yet without sacrificing clarity or access to sound.

The ear hooks are also much more comfortable, and while 99% of the earhook I do like, including that it is much easier to take on and off, and it doesn’t break nearly every time it is removed, the issue I have with it… it falls off a bit more often than I would like. This morning for example, I went to put my processors on and one of the earhooks was missing… thankfully I had my snugfits with me, and was able to use those. I guess I will have to purchase more earhooks just in case. Everything else about the earhook I love. Much more comfortable, more pliable, and holds onto my ear much nicer.

The remotes are very nice. I’m very happy I was able to get both remotes. The remote assistant has a different user interface than the remote assistant for the N5. You have more options, and it is much more colorful. You can also access things, such as volume and sensitivity in a much nicer manner. You also don’t have to quickly turn the remote off in order to switch between advanced and simple mode for controlling the processor. The remote control is so much smaller than the remote assistant. It is about the size of a processor. It is nice, and in order to pair the remote to a processor, you just have to touch the processor to the back of the remote. The remote control does have a much more limited ability to control things when compared to the Remote Assistant. You can choose between volume and sensitivity, you can’t control both. You can change programs, you can turn on and off t-coil… other than that, there is nothing more you can do. I have used the Remote Assistant much more often than the Remote Control.

The new case that comes with the processor is also much nicer, with more room. The coil covers are beautiful, even if they are limited. The processor covers don’t quite fit, but I’m wondering if that has to do with the batteries not being approved yet (which will be shipped to me free once they come available) or if it has to do with there being two models of the processor, one with an accessory port and one without.

Another important aspect, battery life. While I am using the disposables, the rechargeable are theoretically suppose to work with it, but I admit, I am leery of trying it. With my N5’s, the disposables would last me about a day and a half at most, without changing my map on my right side, my N6 disposables are now lasting me 3 full days. This is extremely exciting. I’m hoping that when I get the rechargeable this may mean that I will be able to use the smaller battery, and not the standard battery.

All in all, I am extremely impressed with my new n6’s, and I am excited for the features that will come with the FDA approval of things such as SmartSound iQ and the wind noise reduction programs. If you have the chance to upgrade, I would suggest you look into it. I know it isn’t a cheap process, but if you have the insurance coverage and the spare cash, It will be very worth your while. Although… you may want to wait until the wireless portion of the software has been approved, because then you will be able to choose wireless accessories with your upgrades. As I get farther along with my N6’s I will be adding more to the review.

Activation… Hopefully for the last time

After seeing my surgeon for my post op, I went in for my activation. Both of my appointments were at Arizona Hearing and Balance.  I was given two new processors, and one was to be for my left (new) ear, and one was to be for my right (old) ear. These processors were Cochlear ™ N6 processors, my old processors were Cochlear ™ N5 Processors. I will explain the processors in a different post, with my review.

This activation was a little different, having already been through it, I knew what was going to be happening, and I was expecting it to actually, be worse than it was. My brain should be able to understand things better, having already had a CI, and this being a revision.

It started off the same, hooking the new processor up to my head, realizing I need a stronger magnet, and it falling off again and again.

I listened to the beep, and they were beeps not static (to see why this is exciting, click here)!!  I counted like a normal mapping, then… she turned it on.  And while it wasn’t static, it wasn’t great. It wasn’t bad… but it wasn’t exactly how I had hoped for things to go. It sounded very… robotic again… but… sound was there, and it wasn’t static, so that was a step in the right direction.

There was also a student at the activation, although she didn’t actually touch my mapping, she was just observing, and I expect was just starting her practicum, or whatever it is called for Audiology Students. She was amazed that while tests were being run on my CI, my audiologist and I were able to have a full conversation in ASL, and said she was interested in learning too.

I was given four programs for the left side, as I had expected, each with increasing volume, and was scheduled for the next several weeks for follow up mappings.

The intern walked me through pairing my remotes with my processors (Mostly the same as how I had with the N5’s) as well as some of the new features on the N6. While not everything is FDA approved for the N6, there are new features.  Again, this will be in another post.


The rest of Monday included an eye appointment and getting contacts for the first time and a dentist appointment… and that… It might need its own post too…

Surgery… Again

Sorry this is so late, but Its been a crazy month.

I had left revision surgery on Nov 14, 2013. Surgery was scheduled for 11 AM, and I had to be at the hospital at 9AM. This surgery was with a different doctor, and there were some very noticeable differences, but I’m getting ahead of myself.

I arrived at the hospital at 9AM, when I arrived, there were two interpreters there for me, one was sent home as there was no need for two. Both interpreters were very nice, the one who stayed was about 6 months Pregnant. Inserting my IV was much easier, and even though they put it on my hand, it was much better than any of the surgeries I have had in the past. They asked me questions about sleep apnea this time, and oddly, measured my head for research they are doing.

The time leading up to the surgery was very easy, and relaxed. I had very few questions for my surgeon, because I’ve been through this before. They wheeled me back, and I fell asleep instantly (a talent of mine, even without the sleep medicine). The next thing I remember was not being able to breath, signing” I can’t breathe, I can’t breathe” and being very upset by it. No one could understand me, so I started yelling “I can’t breathe, I can’t breathe” they held my hands down, and I kept screaming, fighting them the whole time. My surgeon called this… “Waking up like a tiger” and looking back logic tells me I could breathe because I was yelling, but logic + waking up from surgery do not equal reality. I also remember being very thirsty, and them not allowing me anything to drink, because I had already vomited a few times. Finally I was given ice chips, and… vomited again. At this point, it wasn’t worth it, and I went back to sleep. I was in so much pain, they gave me as much pain medication as possible, and it didn’t even make a dent. They ended up giving me morphine, which made me so cold.

KaciMy mom eventually informed me that if they couldn’t get my pain under control, they were going to have to keep me overnight… this was something I was 100% against, so even though I was in so much pain, I lied… I told the my pain was a 3 on a scale of 1-10… when really it was at least 2x that. They let me go home, and I was given 3 medications. 1. antibiotic, 2.  Pain medication, 3. Anti-nausea medication (my least favorite, but helpful… it was a suppository, so not fun to use). My head was also wrapped up, and I was given Kaci the Koala!!!

Right After Surgery

Right After Surgery

I went home and slept, watched TV shows on Netflix, and slept more. Both my mom and my love were there to help me after surgery, which was so wonderful. 2 days later, Nov 16th, was my 25th birthday. We went to my loves aunts house for “Fake Thanksgiving” and played cards. It was fun, exhausting, but fun. Her aunt made me a rice crispy treat cake (I can’t eat gluten) and it was wonderful and so very sweet.

I was able to take my bandage off the morning of my birthday, and that was a huge relief. They didn’t shave much hair compared with my other surgeon, and there were also no stitches, but it was glued and steristripped together. When the bandage came off, I felt much better… but was a little sad I couldn’t see the progress of my head healing. I was also very swollen, my head was a little oddly shaped for a few days.

no bandage

I had thought about going back to work on Monday… but that plan didn’t pan out. I went back Tuesday, and was a little wobbly (This time I was a little dizzy after surgery… but I did expect this, even though my other surgeries I have not been dizzy).  The sterristripps kept trying to come off, so I had to get some extra to try to reinforce it. Everyone at work was wonderful about everything, and while I was gone, they knew not to expect as much as had been the standard of service.

I was happy I was able to shower on my own this surgery, because of the sterristrips and the glue instead of stitches, which made me feel much better. I had post op on Nov 25th, as well as activation. My surgeon removed the sterri strips and this is what he found! He said it looked perfect. Such a smaller incision than last time. Next up… activation.Tape Gone

Failure is not an option… but it happens

I cant stand failure, its something that I just do not accept. Unfortunately it is something that occasionally happens to the best of us, in the best of circumstances, at the worst of times.The good news… for the most part things are going well, and my Cochlear implants have a .6% failure rate at 24 months, with one being 10 months old, the other being 15 months. The bad news, I’m included in that .6%.

My left cochlear implant, is not functional… it stopped working properly at the end of August, I had it off because my left ear was hurting, and I was driving. When I put it back on, all I head was static… thinking I was tired, I went to sleep… in the morning it didn’t sound right, things just sounded off, more robotic than normal… so I put my backup process or… I heard the same thing, still the robots, still sounded off. Things started getting worse and worse, to the point that every time I put it on, not only did I hear static, but it also… hurt.


A week later I went in for an audiology appointment, and we determined that 10 electrodes were the ones causing pain, and I had heard a few actual beeps along the way, but not much. When we turned the remaining 12 electrodes on… I could finally hear a voice… but I still heard the static, and just like with a hearing aid… when she turned up the volume, it didn’t turn up the clarity.

A week later I had to go back for an Integrity test, as the audiologist from cochlear wasn’t available for the previous weeks test. I was freaking out at this point… because we were fairly sure my implant was failing, and this test would confirm it… I had also… never met the surgeon that works with my new center. The integrity test showed some issues, and it does look like it is going to have to be replaced… After that appointment, I met the new surgeon I will be working with, he is very nice, short and seems to know what he is doing. Now we are just waiting on insurance… not sure how long it will take, but what I have learned from this in the past… call insurance and piss them off until they just say ok to make me stop… so I’m calling them on Monday.

So even though failure isn’t an option… it happens sometimes. And although it means I’m going to have to have surgery… again… and that just makes me mad. I have come to accept it, I have come to accept the idea that I’m going to have surgery again, and that it is something I can’t change if I want to be able to “hear” again from my left side.

The being unilateral again for the last almost month, has been hard. I hadn’t understood how much the left was helping me understand speech, but it was. It was helping quite a bit in noise too… and this… this just isn’t fun, and it is extremely frustrating.

The only good thing that is coming out of this painful situation is the n6. I will be getting the n6 with the surgery, or that is what they tell me, and the audiologist from Cochlear agreed. Now the question becomes, what accessories do I get… and how many times do I have to call and annoy insurance before they stop being stupid and just tell me to have the darn surgery?


Some updates…

So here are some new updates… not all of them good fare warning.

Update 1.
I am still with the job I’ve had for just over 5 years, and I’m really enjoying it still… BUT I’m now doing onsite tech work. So instead of being in a store front location, I’m working on-site, and right now I’m working a help desk. Its been fun, a learning experience and some personal growth.

Update 2
I just passed 3 months living in Arizona, and I’m still loving it. We go kyaking, and hang out with family. We’ve spent time with family game nights, we have just had a blast! The weather is beautiful! About 85-90, who would have thought that Arizona could have weather like this!

Update 3
My left cochlear implant… well… its stupid. It makes me mad, it isn’t working. I’ve been dealing with little odd issues since the beginning, but… those little issues have progressed into big issues. How? Well… most of the time when I put it on… it sounds like static in my ear. It doesn’t matter if I have the black or the white processor on, it still does it. I’m fairly certain it is a failure of my implant… but I will be pleasantly surprised if it is not. (I will make this a full blog of its own… but just a short little snip in this short update blog)

Update 4
Seeing my mom! I’ve been seeing my mom much more often than before… for the very simple reason… we are much closer!! She only lives about 6 hours away now, so this makes it so we should be able to be around each other much more.

Update 5

IIH… well… its still there (wishing it would have disappeared over night… but it hasn’t). Granted, it is much more stable than it has been… but I still get those feelings I described before… I also haven’t been able to find a neurologist yet, I know I need to… but with all the changes and issues I’ve had… it hasn’t been possible.