So how is the implant working?

I have to say, the hardest question to answer lately is when someone asks me 'so how is the implant working?'. No matter how I try to answer it, it's really difficult. I try to remain positive when answering, but there are days that I may plain out sound completely depressed about my progress. It's just like asking someone 'how are you feeling today?'. You don't always get a happy, chipper response.

Anyway, that said, I saw the audiologist today for a new mapping. When she asked the dreaded question that I knew was coming, I just looked at her and said, 'ya know, I know its working, but it is just not where I would like to be and honestly this is all testing my patience levels'. She just kinda laughed and said ok, well, let's discuss some things and see what I can do to try and help you out.

I have been wearing the processor between 8-10 hours a day. I don't always put it on first thing in the morning and there has been days that I've walked out my door forgetting to put it on. I still have my hearing aid in my non-implanted ear and I can hear some from it, so its very easy to forget especially in a hurry. The first couple hours are rough, having to start out at a low volume and increase the volume throughout the day. I do wear my hearing aid quite a bit through the day, which I really need to try harder to not rely on it so much. It's VERY hard to do especially when you have kids to keep an eye on through the day. So when they are watching TV or playing nicely, I'll turn my hearing aid off, it goes back on when they come out to me needing something. When I'm not needing my hearing aid on for any reason, I turn it off. I should spend some more time on AVT (audio verbal therapy).

The audiologist went through the series of beeps, telling her what I can tolerate and such. This time we did some listening of 4 words (bathtub, toothbrush, sandwich, and hot dog) she said without lipreading and trying to figure out what word it was I heard. I got bathtub and sandwich no problem. Toothbrush and hot dog, I would get them mixed up as well as thinkng toothbrush was bathtub or hot dog was bathtub. We also did series of some sounds, such as eeee, oo, shhh, sssss, ahhh. I got some of them as well, but also mixed some up. I told my audie then that 'I can definitely see how this is going to be a lot of work to learn to hear again from my implanted ear'. I was put in the sound booth to press a button when I heard the static type noise. Honestly because of the change she had just made on the processor and hearing all the annoying noise, I could NOT hear or at least not able to tell the difference between what was making my nerves go haywire or if it was the static sound I was suppose to be hearing.

I left her office with another appointment in 2 months. Let's see what kind of progress I can make until then. Meanwhile, for those of you considering getting implanted, I think that my blog can just give you an enlightment of it is possible you may not hear 'speech' right at activation. I read MANY MANY blogs and stories prior to my surgery and activation, that I had such high hopes I'd be one of the lucky ones. I also seemed to have read more stellar success stories than I read of ones that weren't as the 'success' we want to have. Ultimately, our goal is to be able to comprehend speech and when that doesn't happen at activation, it is a complete let down. It is an absolute amazement though that I even picked up ANY sound at all. So when I hear things such as the horn on a car blaring, door shutting, blinker on the car clicking, the kids screaming/fighting with each other, or even water running, it is enlightment to me that my implant IS working. And eventually I will get to my ultimate goal of comprehending speech, just going to take a lot of time and 'brain training'.

So how is the implant working? Just like it should. :)

Baby Steps Towards Hearing

I haven't posted in a while and thought I'm long overdue for an update.

I just over 2 months post activation. I am still struggling, that's not to say there has not been any improvement, I'm just not where I had hoped to be. I'm also not saying all this to discourage those considering getting a cochlear implant. The implant *IS* working, just to get to the point that I understand speech with it, is going to take time.

My nerves are still in a haywire mode, that when I put my processor on in the morning, I'm hearing all kinds of annoying noise from a constant 'eeeeeee' to twittering birds or ringing. Sometimes the 'loud' and annoying noise actually gets to me that I so just want to throw the processor off! I've resorted to turning the volume down and increase it over a period of time throughout the day. After about an hour or so of putting the processor on, that noise calms down and I can hear enviromental types of noises. Some of the noises make sense from what I remember, others are 'what was that?'. I have two young kids both aged 5 and under, that I cannot really rely on asking someone 'what was that noise?' successfully. My 5 year old can *maybe* tell me but I'm always second guessing him. I do try to ask my husband about certain sounds I hear from time to time as well. Its really funny because sometimes noises I'm hearing are clearly not evident to him.

I know when someone is talking, but there is NO comprehension of what is being said unless I have my hearing aid on in the other ear or I'm lip reading. I have better luck in some speech comprehension when I direct connect myself to my laptop and play videos/music, etc. It is still not clear enough, but I do occassionally pick up a word or two.

I'm still new to this and still working at it. They were not kidding, it takes time. I know 2 months is not a long time, but it has felt like an eternity to me. Everyday I strive to hear something new to put into my memory. Baby steps towards hearing, theres nothing wrong with that, especially if you're a patient person. Patience is NOT a strong virtue of mine. And this is definitely something that is testing me!

Activation Success

I actually have been dreading writing about my activation because I don't want to sound like a downer, although I know I needed to get updated. So I'm going to say a few things first then I'll go on in detail.

1. DON'T and I seriously mean DON'T get your hopes up for activation to come out hearing speech. Regardless of how many success stories you read, its just simply not possible for EVERYONE to have the same success. Just remember if you hear any sound at all, it means the implant is working and that it's going to take time for your brain to process what it is hearing.

Ok so it was just ONE thing I wanted to say. Now don't take that wrong that I'm depressed about my activation because I'm THRILLED that I even picked up any sound in my implanted ear that has not had any stimulation for approximately 9-10 years with speech. Prior to surgery, I had minimal residual hearing in that ear, but was mainly just environmental sounds and they typically had to be loud in order for me to hear them. After surgery, that completely killed ANY residual hearing I previously had.

So why do I seem not so excited after a SUCCESSFUL activation? Because of so much researching I did, reading others success stories, etc. I really *REALLY* thought that because I had previously heard speech in this ear at one point in time, that I would actually been able to hear speech at activation -- even if it was mumbled, chipmunky, Mickey/Minnie Mouse, Darth Vader, or whatever other sound. Just so long that I heard actual spoken language. From all the reading I had done, I just felt that I had a pretty good chance of that happening. It didn't happen, so yes, I was a little bit disappointed in that. It does NOT mean I'm going to stop trying and it also does not mean that I'm not pleased thus far with my results... I did hear SOMETHING! Perhaps had I attempted to do cochlear implant shortly after my right ear went kaput, I may have been more successful at activation. What I am hearing is some environmental type sounds. They are not clear at all yet. But more I am dealing with a constant high pitched shrill sound as well. Turning the volume down on my processor helps some and if I have my hearing aid on in my other ear it tends to drown the shrill sound to the background some. I turn my hearing aid off in the other ear as often as I can, but there are times I NEED my hearing aid on in my other ear to be part of the 'hearing world'. This high pitched shrill sound is annoying to say the least, almost like when you go up to a microphone and get too close how it squeals back at you -- well imagine having to hear that on an almost constant basis 'EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE'. However, after talking to a few people and the audiologist, they are confident that this is all normal and its my 'punishment' that my brain/auditory nerve is putting on me. My brain needs more time to adjust to decipher what it is hearing. Afterall, its only been a couple days since I was activated. The audiologist did schedule an appointment for me next week Tuesday if over the holiday weekend here the shrill sound is still there, to come in and get an adjustment.

I am NOT a very patient person by any means, so I won't lie, I am frustrated and feel like I just wanna pull the processor off! Not because I can't hear speech but mostly because of this shrill sound. If I was hearing the little bit more of environmental sounds better over this shrill sound, I'd feel better. I know this is a process, I know it takes time and I know I need to have patience. Need to keep chanting that in my head 'patience, patience, P-A-T-I-E-N-C-E, whats that spell?? PATIENCE!'

Recovery Update

I haven't updated since surgery because life had gotten busy. Here in Michigan, the weather is finally starting to warm up and be beautiful! I end up spending a lot of time outdoors with my kids, so getting on the computer gets put on hold.

Recovery for me went pretty good. The first few days I was quite sleepy and slept a lot. The pressure bandage on my head was allowed to come off the Saturday following surgery, trying to remove that was difficult! Husband and I finally got it off and I was allowed to take a shower, just had to be sure not to get any water in my implanted ear as well as no direct spraying on my incision. (TIP: Using a cotton ball dipped in vaseline and putting in your ear is a good barrier for keeping water out of your ear.) I felt somewhat human after having a shower. Trying to figure out what to do with the mess of my hair was another story! My surgeon shaved off WAY more hair than I had expected him too. I seriously think they need to require surgeons to go to barber school! LOL

I couldn't sleep in my own bed, so I ended up sleeping in my recliner for about a week after surgery. I missed my bed so much! I tried to sleep in my own bed before my stitches removal appointment the following week, but trying to do so hurt, was way too much pressure on my head and made me feel really sick. It also seemed to bring on a really loud roaring noise. I tried again after I had my stitches removed and was successful! The stitches gave me a feeling of 'tightness'.

The top portion of my ear on the outer side is numb and anything hitting or touching it is very bothersome. Everyone that has had the surgery and had the same issue, has said it went away after some time. So I hope that it does!

Other that what was mentioned above and on my previous post (recovery immediately after surgery at the hospital was the worst for me)... I never had any 'major' pain. I kept up on pain meds and took all my antibiotic prescribed, I weaned myself of most pain meds by day 5. I had some mild discomfort and I would just take a regular Tylenol to help. Oh and where my hair was shaved, talk about itchy city as it tries to grow back in! And since the weather is getting nicer here and warm outside, it itches more!!

Up next, activation... that happens this week on Wednesday the 23rd! This will be interesting to find out what I do pick up with the processor. I'll update later this week, if I find the time to get on the computer after activation.

I'm finally a bionic woman...kind of...

Surgery was Thursday, April 26th. Whew, what a day! We had to be there at 8:15am, but becasue of traffic and construction, we were a few minutes late. No big deal. I got to the registration desk to check in, the nurse was already calling to see if I had checked in yet.I was taken back to be prepared for surgery. Scheduled for surgery at 10:15am, but that didnt happen. Doctor was running a little behind. It was noon before I was taken back and in the OR.  I remember getting into the OR and moving over to the table for them. Then came the gas mask and them telling me to breath in deep breaths and it wasn't long I was gone. I was in recovery about 3pm. Woke up small peeks in the recovery room, everytime I tried to wake up more, I got sick to my stomach. So they had to get me medicine for that. My throat had hurt like crazy since they put a tube down my throat. Talking was a challenge because of the tube they put down my throat. I had asked for something for my throat, was told until my nausea was under control they didnt want to give me anything. They did let me have some ice chips to see how I could handle that. That felt sooooo good! I couldn't have the ice chips too soon after each other, but believe me, I was so wanting them sooner than I could get them!

I also had a massive migraine while in the recovery room! They said well do you suffer from those? I said yep. So the nurse had to go get something for that. I think they gave me what I normally would get if going into ER because it almost instantly took it away. I couldn't talk real well so I didn't bother asking too much, plus I had a hard time comprehending anything as it was being so groggy.

I finally was taken to a private recovery room where I could be with my family. They were all trying to wake me up, mom, husband, sister and her husband. Honestly, I just wanted to sleep... leave me alone is all I kept thinking. But I also did NOT want to stay overnight there either. No matter what, I did, I just simply was having a hard time waking up long enough to get some food and drink. I managed to force myself awake long enough to try. I ate some saltines, and I've never disliked saltines so much in my life! I might as well have been eating cardboard! Yuck! But in order for me to get the vicodin I wanted, I had to have something in my stomach, so I got some water and got through it and finally got the pain meds I wanted about 7pm.

I was given my discharge instructions and took it easy getting ready to go home since I was so groggy still and didn't want to get up. It was 8pm before I left the hospital. The car ride wasn't as bad as I was expecting. The bumps sucked, yes! But as long as I kept my eyes closed, I didn't feel sick to my stomach for the car ride. If I just peeked even a lil bit, I felt instantly nauseaous! Finally got home about 9pm.

Mom ran and bought me some chicken noodle soup, jello and Sprite so I could have something to eat. I was hungry, but didnt trust the nauseaous feelings.

My head bandaging is crazy! It's a foam/rubber type material, coflex perhaps? Kerflex? I don't know. I had a strap that ran under my neck/chin area. Let me tell ya, it was hurting me so bad, interferring with locking up my jaw, disallowing me to eat or talk well... I cut the strap. The rest of the bandage is just fine as far as still being tight. But I can at least talk and eat now without constant pain!

So I'm on my way to better hearing... a few weeks before I get activated with the processor and find out what I do hear at the start. This will be interesting. This will officially mark me as a full CI borg, bionic woman... LOL :)

Since I'm updating this blog the day after my surgery and its taking a lot for me to do so, I'm going to stop for now and I'll update some more later on. I just wanted to get something on here. It's that time of night for me to try and get some good sleep. Time for pain meds and antibiotic and off to sleepy land I go as a new bionic woman!

Eek! 29 days til surgery...

I had my pre-op clearance with my primary care physician today. Everything is looking good and I'm on my way....... Other than some allergy issues I'm currently having which is causing some massive drainage into my throat and coughing so much, doctor feels this needs to clear up before surgery that is scheduled in 29 days. That should be plenty of time get this all cleared, then I need to stay healthy and see the surgeon's nurse a week prior to surgery.

On my drive home, I'm thinking about all this and it hits me... "Holy crap, this is really happening and coming so fast". Let's just say my stomach kind of dropped and everything hit me like a ton of bricks with the realization. I've been pretty calm thus far, but why am I all of a sudden feeling so blue?! I'm excited that I may have the chance to finally hear better than I do now, but all that uncertainty is really creeping me out. I'm sure this is normal and as the days come closer, I will probably start to feel even more 'scared'. This is a major surgery!!!

I've had my wisdom teeth removed, all 4 at one time, I was put out for that. I had surgery on my armpit to remove sweat glands that would swell so bad and cause me so much pain, though I was awake through this surgery. And I've had 2 C-Sections, awake through that as well. I've also had a cardiac ablation done, which I was awake through too. So I'm not a virgin to surgery by any means. So I'm not sure WHY I'm having such a hard time with this one. I don't think its the procedure itself, I think its just some overwhelming fear of what will happen afterwards.

Advanced Bionics gets FDA approval for Clear Voice!

Advanced Bionics gets FDA approval for Clear Voice, FINALLY! Here is the press release:

website: http://www.advancedbionics.com/us/en/system/footer/about_us/corporate_news/2012/clearvoice_launch_us.html

Advanced Bionics Launches ClearVoice
in the United States

-- FDA Approves the Industry’s Only Speech Enhancement Technology
for High-Performance Hearing--

Valencia, CA, March 19, 2012 – Advanced Bionics (AB), the global leader in cochlear implant technology and a subsidiary of the Sonova Group, announced today the approval of ClearVoice™* in the United States. ClearVoice is already approved for use in Europe, Asia and Canada. The availability of ClearVoice in the United States will take place over the next few weeks as clinics are trained by AB. Recipients should wait to contact centers until after Monday, April 9, 2012 to begin scheduling programming appointments.

Built on AB’s proprietary HiRes Fidelity 120™* technology for high-performance hearing, ClearVoice has been designed to automatically analyze and adapt to each listening situation encountered throughout the day, separating the distracting noises from speech so that communication can be a truly effortless experience. The technology was developed to help recipients communicate clearly and confidently in a variety of challenging listening situations, including restaurants, cars and classrooms—without ever needing to change a program or make an adjustment to their sound processor.

ClearVoice is the first and only speech enhancement technology on the market, further solidifying AB’s position as the industry’s innovation leader.

“Advanced Bionics remains firmly committed to developing industry-leading innovations that deliver improved hearing performance for our recipients. We are excited to launch another first with ClearVoice, which helps our recipients understand speech and communicate better than ever before,” said Hansjuerg Emch, Group Vice President of the Sonova Medical Division that AB falls under.

Delivering the industry’s only clinically proven superior performance, ClearVoice has been designed by Advanced Bionics to provide recipients with these important benefits:

• Improved speech clarity in noisy settings
• Enhanced lyric understanding for music enjoyment
• Easier, more effortless listening in real-world settings
• Outstanding hearing from morning to evening with no adjustments needed

ClearVoice will be available for recipients with HiRes 90K and CII implants who use a Harmony or Neptune sound processor.

“Helping our recipients enjoy life to the fullest and connect with the people they love is a true privilege. ClearVoice takes that connection to the next level by making communication easier and more natural on a daily basis,” said Gerhard Roehrlein, CEO and CTO of Advanced Bionics, LLC.

AB’s cochlear implant system features the world’s most sophisticated technology to bring clearer, high-resolution sound to those affected by significant hearing loss. Now with the addition of ClearVoice, AB has once again delivered a performance innovation that enables recipients to hear their best.

“I hear much better in restaurants and other crowded settings. I have attended several concerts and the sound has been excellent,” said William Vandoleweerd, an AB recipient who uses ClearVoice daily. “I know I hear better with ClearVoice and that makes me a happy camper.”

For more information about ClearVoice, contact a local Advanced Bionics representative or visit AdvancedBionics.com.

Activation date scheduled

Just a short post... I have my activation date scheduled for May 23rd! This is the day that the processor is turned on for me and find out what I do 'hear'.

The countdown begins til I get activated, where I will hopefully HEAR.... 3 months 3 days... and counting...

Surgery is scheduled!

I met with the surgeon yesterday. We went over some questions I had and we both agreed that cochlear implant would be ideal for me. I did find out that I will NOT be able to go bilateral right off the bat as previously discussed. Medicare has changed some things and the chances of me getting a second implant is slim to none. That's ok, I will just move forward with the one implant for now and hopefully in the near future I can work to try getting the second implant. In some ways, this actually gave me a sigh of relief. I was really apprehensive about going and doing both ears at the same time, even though I knew it would be for the better to get it out of the way now; one surgery, one recovery, etc. But that silence for 4 or more weeks was what was bothering me. And now, I know I don't even have the option of going bilateral at the moment, I'm relieved in some way that I know I'll still be able to hear with my better ear that I can wear a hearing aid in. But I'm also somewhat mixed up in emotions because I know eventually I'd like to go bilateral. I'll just have to go through surgery and recovery all over again if I'm able to explore going bilateral at a later date.

Surgeon expressed that the fact I was not born deaf and my hearing loss has been progressive over the years, he feels I will benefit very well with a cochlear implant. Especially since I do have 'speech memory'. He let me know that there are certain signs that he has learned over the course of the years he's been doing cochlear implants that lets him 'guess' how a person is going to do with an implant. And for me, he expects that I will do excellent with it. And he was very pleased with my decision to go with Advanced Bionics for my implant. Told me I made an excellent choice and did my homework. So that made me feel even better about my decision for choosing AB.

So anyway, surgery is scheduled! April 26th is the day. I swear when the scheduler gave me the date for surgery, I felt like I lost my stomach. (You know like when you're riding a roller coaster, you reach the top and are ready to go down, that kinda feeling.) It was kind of like 'wow this is really happening'. I'm sure my feelings about this will get more 'scared' the closer I actually get to the surgery date.

I have quite a few things to do prior to surgery to get taken care of. I have to get an MRI done which is scheduled next week Friday. I need to get into my doctors office for a couple vaccinations the surgeon wants me to have soon so that the vaccinations can start 'working' prior to my implantation. Persons with cochlear implants are at higher risk for meningitis. These vaccinations will help curb that from happening. I also have to get scheduled for pre-op clearance from my family doctor, meet the surgeons nurse one week prior to surgery, and meet with the cochlear implant audiologist again to choose the processor I want (as well as some of the accessories).

I'm really glad that my surgeon does not require psych evaluation done for the cochlear implant as I have heard some people had to have a psych evaluation done. I'm sure I would fail that miserably! I don't like being asked questions and be evaluated on your answers... it makes it feel like 'trick questions'.

Until next time...

What I look forward to after getting implanted and activated

I've been asked several times since I've been considering a cochlear implant, what do I look forward to after I'm implanted and finally activated? There are many answers to this, but the first and foremost answer would be to be able to hear my kids as they grow, I do NOT want to have a silent world and not be able to communicate with them. It is apparent that my hearing is degrading fast and I need to do whatever I can in the realms of my world to make that happen!

So in no specific order, I will list what I am looking forward to:

• Watching TV without relying on captions! There are times when I'm watching the news, segments are not captioned because it is a live feed or whatever. So I miss out completely on what was being said.
• Listening to music and actually hear the words. I have always just based my choice on music by hearing it on the radio, if I liked the 'tune' of what I was hearing, I'd investigate what the song name was, who is was sang by and then I'd find a way to get the lyrics. When I was younger, I used to record songs from the radio on my tape cassette recorder and get the lyrics and replay the song over and over again, reading the lyrics and memorizing them that way.
• Being able to communicate with my husband without him having to repeat himself several times. He has a speech impairment that it does make it difficult for me to communicate with him. LOL How in the world did we end up together? A hard of hearing person with a speech impaired person? Ironic, eh?
• Using the phone again and not having people repeat themselves so much. I dread using the phone now for fear I'm not going to hear the person on the other end, but I do it anyway when a situation presents that I cannot just have my husband or another family member/friend help me take care of.
• Being around water and hearing my kids and other enivronmental sounds! Whether for safety reasons or for excitement.
• Date night to the movies! I want to go to the movie theatre and enjoy the movie because I can hear!
• To be able to attend a chuch service and actually HEAR what is being said! I have always felt spiritual, but because of my hearing loss, I've never been able to attend a church and understand the service.

I am sure there are some other small things that I look forward to, but these are like the biggest things that I hope to acheive with getting a cochlear implant. My expectations/goals might be set high, but I'm not going to expect that I will be able to do all of the above. But I will work diligently to learn how to hear my world that best I can. All things are possible, without dreams, nothing can happen.

I want to mention one thing that annoys me...  people tend to think its VOLUME that I need increased to understand something. So they automatically say 'well we can turn up the volume' or 'we can get a surround sound system to help you'. It's not that at all, its clarity and the tone. I try to remember that unless you have hearing loss yourself, people will not understand this. While I can lip read exceptionally well, it is still very hard to be in a meeting type atmosphere and understand anything at all. I struggle during family get togethers to understand everyone. And I rarely recognize when someone is actually trying to talk to me until after they've said my name a few times in a louder tone. In noisy environments, its difficult to communicate with someone in person even when they are right in front of me because I cannot block out background noise to understand the person in front of me. The phone, forget it! I have had so much trouble with the phone for the last couple years, I don't even try anymore.

I'm hoping going through with a cochlear implant will open up my world of hearing. It is NOT something where when the processors are turned on that I will hear immediately (maybe I will, but its rare). Getting a cochlear implant does not mean that I'm no longer hard of hearing/deaf, I will always be deaf... just the cochlear implant is a tool for me to help me understand speech. It is not a magic wand that restores hearing. I will be hearing with my brain, which takes practice and perhaps once my brain starts to comprehend that speech I'm hearing, it will work like magic. It is something I will have to work at. While this all takes time and patience, I will need the people on this journey with me (family & friends) will also need to be patient with me as well.
At the end of the day when I go to bed, I will have to take the processors off, I will be deaf and in complete silence! I worry about not hearing while I'm sleeping because of my kids. I know I have my husband that can help me out in this, its just I feel as in a role as a mother, that I need to be attentive to my kids needs as much as possible without the reliance of someone else. This will probably be one of my biggest struggles. But I hope that by knowing this, that I can prepare myself mentally and prepare my husband to know that he will have to be my ears for me at night. I will most definitely need to get some assistive device that will wake me up to get Jared ready for school. I need to look into those options and check into the costs. Will probably be something that vibrates under my pillow or turning my lights on and off... I do NOT want my husband waking me up every morning by jerking me around. I would seriously get highly irritated over that. It has happened when my hearing aid battery has died and I don't hear the alarm, he shakes me and while it does wake me up, it really startles me. I end up confused til I realize whats going on and then I'm irritated by the way I was woke up. So thinking that I need to be looking for another option that will wake me up when needed.

Talk about superior customer service!!!

Well, after some awesome customer service from Advanced Bionics, the company that I plan to use for my cochlear implant, I'm even more happier with my decision! They have wow'd me to no words to explain how awesome they are!

For the past month, I have met some really awesome folks on a forum that was started by Advanced Bionics. The people I have met on this forum have helped me along thus far by answering questions and giving advice. Ultimately have given me the confidence that I can go through with this cochlear implant without as much fear as I had at the beginning of my journey to making a decision to get a cochlear implant.

I have been looking for a way to explain to my son who is 5 years old about what I am going to be having done. But I wanted to do it in a way that it doesn't make him worry about me and freak out. Anyway, I was told about some material Advanced Bionics has for kids. I was able to get links to a printable coloring book and a video to show my kids. I was also told about a doll, Bionic Buddy and his sister Melody. I didnt get a link to any information in how to possibly get these dolls. So I figured I would chat with a customer service rep at AB's website. The lady I talked to let me know the Bionic Buddy and Melody are given to all pediatric implantees. I explained to her that I just wanted to have a way to expose my kids to this without it being frightening. She then asked me for my address and phone number. She is sending along 2 coloring books, a DVD and a mini Bionic Buddy as well as a mini Melody! And get this, today is Friday... she says I should have this stuff delivered by FedEx no later than Tuesday! Are you freaking kidding me?! That's like super fast! I'm excited to be able to show my kids this stuff! I cannot wait!

So yep, I'm officially impressed with this company with their customer service! And from everyone else that has AB from the forums, raves about their experiences being just as superior, I definitely feel like I have chosen the right cochlear implant company for me.

Unilateral or Bilateral?

So I've been reading a lot on cochlear implants. I've been trying to decide whether or not I should just suck it up and go bilateral right off the bat and be deaf for 4+ weeks (4 weeks to activation from surgery, then however long it takes for me to start comprehending speech). I'm only thinking of this for insurance purposes. I'm finding that Medicare is pretty strict on those that request bilateral after they've already been implanted with the initial implant. Some get lucky and are approved, others not so lucky and end up having to go through the appeals process. The more I read, the more I keep thinking I really don't want to be 'denied' to have to fight to get what I want. Although, I'm sure being diligent in the appeals process, I would eventually get the approval.

My original plan was to just implant my weak ear, so that during the 4+ weeks, I at least have the capability of still hearing with my hearing aid in the good ear. Can you just imagine, complete deaf silence for 4+ weeks?! I'm not sure mentally I could handle it. Yes I can lip read extremely well, but to explain to my 5 year old that I can no longer hear him and try to lip read him would be very difficult! Heck would be difficult with my husband too because I've always had a hard time lip reading him as well. My 2 year old, she doesn't talk yet, but by the time I get this surgery done, she could be. And I would hope she would not decide to start talking while I'm completely silent.

I do know one thing for certain, I am anxiously waiting my appointment to meet the surgeon in a couple weeks! I will talk to him about my thoughts for unilateral vs. bilateral then. Perhaps he can give me some enlightment and I can feel better about my decision of what I'm going to do. Meanwhile, time just is NOT getting here fast enough. I want to get things rolling and I'm sure its going to be about a 4-6 month wait for surgery. I think that waiting is going to be the hardest part for me. Lord, please grant me the patience for this!!! I'm finally getting feedback from people that have gotten the Neptune and reading their updates, I'm feeling like 'I WANT MY NEPTUNE NOW!'. I definitely am not trying to hurry my life on by, this is just something I want so badly to be able to hear better someday, that its already becoming to feel like a lifetime before anything happens.

I'll write another blog post later about what I'm looking forward to getting a cochlear implant. Hopefully what I'm looking forward to is not out of the norm for expectations. I will have to make sure I work hard to achieve the goals I want to come from my cochlear implant.

Research: Advanced Bionics or Cochlear America?

I have spent a great deal of time researching about the different options for cochlear implants. There are 3 major companies that provide cochlear implant devices. Advanced Bionics (AB), Cochlear America and MedEl. MedEl is not a choice my surgeon has available for a choice. So I did not research MedEl for this reason. I spent my time researching between Advanced Bionics and Cochlear America. I am not an expert and I'm not trying to persuade anyone one way or another. I'm just going to give you the information that I found to be helpful in my decision to choose Advanced Bionics as the manufacturer for my device.

• AB has world class customer service! They care and they are easy to access with questions and problems. You can chat with them online by going to: www.bionicear.com or emailing them at customerservice@advancedbionics.com. They are also located in California.
• AB also has audiologists on staff willing to help answer any questions you have - just email HEAR@advancedbionics.com.
• Advanced Bionics customer service doesn't just stop. They go the extra mile to make sure you are well taken care of. If anything should go wrong with your processor, they ship out the new processor to your home via FedEx within 24 hours (sometimes 48 hours, depends on the day your claim is made).
• AB works harder to improve their products and listen to cochlear implant recipients as to what it is they want.
• AB has more speech processing strategies. We do not all like the same music (country, classical, hard rock, etc.) so why should be be put into the same way to speech coding strategy? With Advanced Bionics you have choices.
• Advanced Bionics has the industry's best external durability. Just ask your audiologist which device breaks down the least often.
• AB's implant has enough capacity to receive at least ten more years worth of free (there may be a co-pay for audiological services at worst) software upgrades!
• AB's implant (called HiRes90K) is also much more reliable (just 2 failures out of 28,000) and more than twice as durable (it can withstand up to 6 joules of impact versus 2.5 joules for the competition). If you want to be technical right now, Cochlear America's implant is currently under recall so they are reverting back to their older implant which is only 1 joules.
• Neptune - It is the newest and most advanced cochlear implant sound processor available with the advantage of not requiring anything worn on the ear!  In addition, Neptune is the world’s first waterproof sound processor, providing the ability to swim and bathe while continuing to hear the world. While the Neptune does not have T-mic or ClearVoice yet available, it is going thru FDA for approval and is expected in the near future. Harmony is another model offered by AB that is a behind the ear model to be worn, it is not waterproof (however it is rather water resistant such as if you were splashed with water or even were to run through the sprinklers, it is not going to 'ruin' your device), and it does have the T-mic already incorporated. The BTE model is also a lil bigger and bulkier than your average BTE hearing aid.
• Another great feature mentioned earlier is the T-mic which allows you hold a phone naturally over the ear, instead of trying to find the mic somewhere on top of the processor above your ear. With the T-mic, you can even use a bluetooth or headphones with ear buds. The other companies can't offer the T-mic because AB has a patent on it. 
• AutoSound is another feature with AB processors that adjust automatically and adapt to changing listening conditions. Meanwhile, other competitors devices the person would be fidgeting with the controls on their processor to adjust to the different varying listening conditions.
• AB has the highest Input Dynamic Range capability. IDR is the difference between the loudest and softest sounds that are presented to you at once.  AB has the capability to go up to 80. Cochlear only allows you to go up to 45.  Given the choice, it makes sense to be able to have 'control' of where your IDR is.
• AB can stimulate the electrodes faster than any other implant - up to 83,000 times per second. Cochlear can only do 32,000 times per second. 
• AB is working with Phonak to develop a smaller external processor. Phonak is a manufacturer for hearing aids, a leader in miniaturizing hearing aids. AB and Phonak are both part of the same company and the only cochlear implant company with such a relationship. The two companies are in the process of developing a smaller processor currently. Just imagine what the two of these companies may be capable of. Technology has come a long ways since cochlear implants began back in 1985.

These are just a few of the highlights that have given me the confidence that Advanced Bionics is for me.  After reading the following blog about Cochlear America, I was pretty set on who I was going with. http://funnyoldlife.wordpress.com/2011/09/12/cochlear-americas-issues-a-recall/#comment-8408. Another thing to note about the link I just posted, the blog has a LOT of valuable information for cochlear implant recipients. Look around the author's site. She has done a lot of extensive research on all 3 cochlear implant manufacturers and is a cochlear implant recipient herself. The direct link to her research is here: http://funnyoldlife.wordpress.com/cochlear-implants/choosing-a-brand/

Here is a good introduction to the Neptune by Advanced Bionics. https://ablearningcenter.adobeconnect.com/_a1012873554/p25bgtomgsx/ On the right, there is a box that says 'Notes', there is the captions to the slide show for those that cannot hear it without the captions.

The Neptune is the device I will be getting. If my clinic provided backup processors like some clinics do, I would probably opt for one Neptune and one Harmony. But since I'm only allowed to choose one, I'm going with what I'm pretty confident that I will enjoy. Both processors rank high, but it is based on your preference as to what you'd want to choose. For me, its the fact that I don't want a BTE model on my ear anymore. I'd love to have NOTHING on my ear. I have long hair so I'm pretty sure my hair will cover the cap where I connect the processor to the implant on my head. And then the cable I would have it go under my clothes and clip onto my pants. I believe the cable would most likely look as if I am listening to an iPod. Then the fact that I can actually go swimming with this is another plus! I cannot even begin to imagine being able to hear my kids in the water and the safety that would come along with that, especially if at a waterpark and a lifeguard is blowing his whistle! I've always had to rely on being very observant of whats going on around me because I don't hear enough to 'just get by'. I doubt that my observant behavior will go away though, its a habit that has been with me for over 28 years now, I'm sure it will take time for me to 'trust' that this new device is going to be my lifetime partner.

I also want to share with you an interesting webpage http://www.citheory.com/  This guy, Mike Marzalek is very intelligent, he has created his own speech processor for his cochlear implant. Very interesting things to read and learn. And he leaves you with his email address if you should have questions. Although I don't understand everything he is talking about, I'm planning on having my dad read it. I'm pretty confident my dad would find this very interesting and would totally know what this guy is talking about and be able to explain it to me better. If not, I'll be emailing Mike myself.

***NOTE*** A lot of my research above, I have taken from notes from various places on the internet.

**Edit** When I do edits, I am adding in comments made on the Hearing Journey forum that I am a member of.

"CA (Cochlear America) can only stimulate one electrode at a time. AB on the other hand, can stimulate 1, all, none or any combination. This is the basic theory around which AB designed the INTERNAL IMPLANT. I am talking about the part surgically implanted in my head. Because of this basic design methodology, the AB internal implant can cause more tones or frequencies to be excited by that internal implant that the sequential mode used by CA. Thus in theory, AB should provide better quality hearing. Beyond that the AB internal implanted processor is using just a fraction of it's capability and future software upgrades to the External sound processor can allow future functions to be used without further surgery. Think about that. Improvements without further surgery. I chose AB for these reasons."  - Ken Fitzgerald

The Beginning of My Journey

Let me start by saying that cochlear implants have been around for as long as I was hard of hearing. However, we were told because I benefited from the amplification of a hearing aid, I was not a candidate for a cochlear implant. I was also told that I had 'nerve' damage and would never qualify for a cochlear implant. This of course was over 28 years ago... And now the candidacy for cochlear implants have changed dramatically over the course of years with advanced technology available. If I was now the 4 year old toddler who lost her hearing in today's world, I probably would have been a candidate no questions asked right away. Well maybe not because I did have better than 40% speech comprehension with my hearing aids in both ears. So when people have asked me why I haven't gone to get a cochlear implant, I've always just said 'I am not a candidate for it'. At least to my knowledge anyway... until last month when my local audiologist (I've been with her since I was 4 years old, so I trust her completely) told me I really should look into the cochlear implants. With the hearing in my left ear starting to decrease and my right ear already being 'shot', I agreed with her and had her send in the referral to the specialist in my area. I figured it doesn't hurt to find out if I'm even a candidate and go from there. Besides, I don't want to wait until my world is silent before I did something about it. I want to be able to communicate with my family and friends. I cannot imagine having a complete silent world around, especially with my kids! Let's just say, my local audiologist has recommended that I go find out if I was a candidate since my right ear stopped benefitting from a hearing aid about 9 years ago. And every year, she'd suggest it again. I just always shrugged it off as I thought I was hearing 'well enough' and I honestly didn't think it was worth my time to drive an hour away just to find out I was NOT a candidate.

I have already started on my journey before starting this blog. I had the first cochlear implant audiologist evaluation last week. I was SHOCKED to learn that day that I was a candidate! I never expected them to even tell me I was a candidate at all, I figured I'd have to find a way to communicate with my world by sign in the very near future. The fact the audiologist told me I was a candidate threw me off. I thought the results the audiologist got, would then be transferred to the surgeon who would then determine if I was a candidate. Ok, this opened up a whole new perspective to me and I felt a lot of a overwhelming urge to yell out 'Oh my gosh, are you serious?!' I had heard of cochlear implants, heard that many people do well with them, but had done no research for myself as I had just 'assumed' I was not a candidate, so why bother researching right?

So after the testing, the audiologist showed me the devices they work with for cochlear implantation. I saw what the piece is that would actually be implanted under my skin on my head, just behind my ear. Then the external portion that would be the processor and the 'cap' I'd have to place over where the implant was put and they connect by magnet. We did some Q&As, I brought my mom into the room with me to go over everything as well. I understood everything just fine, but having mom there just made it easier for the audiologist to explain things better than I probably could have explained it. And let's just say I felt a little more at ease by the time we left that maybe this won't be so bad after all. This is NOT a decision to be taken lightly. There are risks involved. There is a lot to think about and consider. But yet, I needed more information yet, I was still very hesitant on this whole cochlear implant idea. How is it possible that this will help me hear better?

The processor I was drawn to immediately JUST came on the market to the US this month. It is very versatile and the first waterproof processor out there. I would not have anything hanging over my ear like a hearing aid with other models. This one has wires (like that of using an iPod) that I can take under my clothes and clip the processor to my pants, bra, whatever. Advanced Bionics Neptune, very impressive unit they have come up with. (If you hadn't picked up on my title of becoming bionic and the name of the manufacturer...Just thought I'd put a lil laugh in here.) And after researching the other options, I'm pretty confident with my choice. I also joined a forum, the Hearing Journey with other people on there that have had cochlear implants, some are still waiting for surgery, or are in the beginning stages like me. They are a wonderful group and have been very encouraging and have given me wonderful advice. It definitely helps to talk with people that have gone through the same thing. I even found someone on there that had the surgery done by the same surgeon I will be having as well as the same audiologist. So there was a big plus right there. He had nothing but positive to say about the clinic.

I will lose ANY residual hearing I have left at all in my right ear by having the implant done (it doesn't benefit from a hearing aid for me to process speech, so its pointless, however, I do hear some 'tones' from it still; I would lose those tones and be completely deaf to that ear). It takes approximately 4 weeks after the implant before activation of your processor. I could NOT imagine a silent world for 4 weeks!! This is the reason I have chosen to do my 'weak' ear. This allows me to still be able to hear with my good ear after surgery with my hearing aid. And even after activiation, there is NO guarantee you will understand speech right away. You may hear sounds, and sounds you don't understand, it takes times for your brain and the sounds to work together to 'understand' them.

So the next steps are to meet the specialist that would be doing my surgery for the cochlear implant. He will most likely send me off for a CT/MRI scan to be done, they need to be able to see the shape of my middle ear to make sure that implantation is even possible in my ear. From there, would be getting medical pre-op clearance from my primary care physician and waiting on authorization from my insurnace company to have the procedure done. There may be more things involved, but I won't know that for sure until after I meet the surgeon. As it seems all clinics have their own choice of things to be done for the cochlear implant.

This whole cochlear implant stuff really is a VERY frightening thing to me, but at the same time I think 'what if I can hear so much better than I have before?!'... The fear, I think is mainly a lot of the 'unknown', what is my outcome going to be, how long will it take for me to recover, hear and understand speech, etc. The success rate for cochlear implants is over 90%. What does that 90% entail? What do they consider success? On another note, to be honest, I think its more frightening the fact I'm losing hearing in my 'good' ear and my only thought at first was 'I'm gonna have to learn sign'. which really thats not so bad, but thinking of my world being silent and not hearing my kids is scary! Plus, who am I going to sign with? That would mean my kids and family/friends would need to learn sign too for me to communicate with them. That's not exactly 'convenient'. If it weren't for the strong suggestion from my audiologist that I should find out if I'm even a candidate, I'd probably not even be talking about this. And well, here I am... I have my visit with the surgeon day after Valentines Day.