Wednesday, August 8, 2012

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. :)

Tuesday, July 31, 2012

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!

Friday, May 25, 2012

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!'

Sunday, May 20, 2012

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.

Friday, April 27, 2012

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!

Wednesday, March 28, 2012

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.

Monday, March 19, 2012

Advanced Bionics gets FDA approval for Clear Voice!

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


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