Aural Rehabilitation: Interactive Computer Program

I recently purchased an interactive computer program that was specifically designed for Cochlear Implant patients. The computer programs is called Sound and Beyond. I have found this program to be fantastic and extremely helpful in my Aural Rehabilitation. Since this program is designed for hearing impaired individuals, the training uses word pairs that are very tricky so it really test your ability to differentiate between different sounds that we have not been able to hear for however many year. It is inexpensive (only $25) and the Cochlear website actually provides free updates to those who own the game, so whenever they improve the programming, you can download the changes for free!

Below are the activities that are provided:

• Vowel Recognition
• Consonant Recognition
• Word Discrimination
• Everyday Sentences

Since individuals with Cochlear Implants do not hear as naturally as those with the Esteem, there are some activities that are not as necessary. These are listed below:

• Pure Tone Discrimination
• Environmental Sounds
• Male Female Identification
• Music Appreciation

There are also more advanced modules available which include telephone speech training, adaptive noise training, and open set recognition training (where you have to write out the sentence or word).

This program can be found here: http://hope.cochlearamericas.com/sound-way-beyond. 

First Esteem Readjustment

Today was my readjustment appointment. It has been about 16 weeks since my surgery and 8 weeks since the Esteem device was activated. I have to say that this has been a very long 2-month in becoming acclimated to the Esteem and I have not officially even made it all the way through the C program. Due to my cold, I am still hanging out at C3. 


Not to say that I am unhappy with the Esteem, but I wish I had been prepared for what a learning process this would be for me. I went into this experience thinking my life would change drastically over night and the reality of the situation is this is a learning process and takes A LOT of time. I was told that for some people, it takes over a year! 


While the sound that I do hear is natural, I have a long way to go in regards to learning to hear again. For the last 10+ years, I have become very dependent on reading lips, watching TV with subtitles, and I essentially stopped talking on the phone, so I literally lost my ability to truly comprehend by hearing. I hear by looking not by listening. I truly believe that part of the reason I am having a difficult time adjusting has a lot to do with how much I have isolated myself from situations that require me to hear. I wonder if I had continued to put myself in all those uncomfortable situations if I would still be having this much trouble understanding what people say. 


The Envoy Technician I met with today told me that I am still becoming acclimated to the device and that I really need to be practicing, every single day, how to hear without reading lips. She suggested that I find some old children’s books and have my husband sit in front of me, with the book in front of his face covering his lips. He would read one sentence at a time and after each sentence, I would repeat it after him. She suggested starting with childrens' books since the words and sentences are not very complex, and working up to more challenging books/articles/stories. Also, I told her I had looked into Auditory/Speech Therapy and asked what she thought about this. When I suggested this to the first Envoy Technician I worked with, she didn’t think it was necessary and just stressed what a learning process this is. However, my Technician today said that every little bit helps and thought this may be a good idea for me, particularly, since I am so dependent on reading lips for comprehension. This type of therapy is pretty expensive ($100/sessions) for my husband and I considering our financial situation and with my hubby still out of work, it is just financially not in the cards for me right now so I am hoping and praying that the new year will bring good fortune so that I am able to do this and help myself.

Overall, I felt that my readjustment appointment went fairly well and I have to say that I felt less emotional and much more satisfied with my appointment and settings compared to my initial activation. Having the film crew around for my activation made me feel a little flustered and it wasn’t until the end of the appointment, when we asked the film crew to leave, that I was able to address my concerns. At that time, most of the adjustments had already been made. I didn’t realize this until today, but I feel like I wasn’t really asked during my activation appointment how things sounded. I feel like I wasn’t really a part of the programming, and I guess it was probably because everything was so new to me and I didn’t know what it should have sounded like. I probably wouldn’t have been able to tell them either! 


Today, I feel like the focus was on me and I was able to test out a bunch of different program and volume settings to see which was the clearest for me. There were times in the appointment where the Technician would go back and forth between 2 different settings a couple of times before I could tell the difference and pick the one that was clearest for me. She also read out loud which allowed me to see which setting provided the most clarity in speech. One thing I thought we were going to do was listen to music, and I had mentioned it at the beginning of my appointment, but it totally slipped my mind by the end and I forgot to bring it up again so we could determine the setting that is best for listening to music. I will have to remember this next time if Music is still sounded pretty crappy...

I, unfortunately, am still getting over my cold and have a bit of congestion so the Technician was not able to advance my profile settings very much. From what I understand, her programming was telling her that my feedback threshold was higher and that I could take another step up, but whenever she set my device to that higher level, I would get high-pitched screeching feedback. The Technician has a little device that checks the amount of fluid in my ear and it indicated that there was some fluid, most likely from my cold and from not taking my allergy medicine in the last couple of days. She said this excess fluid in my ear is likely causing the feedback at the higher settings. So while I was able to gain some volume and range, it is disappointing that I couldn’t have gained more because of this stupid cold!

The way my device is currently programmed is A is my “Everyday” setting. B is my “Background Noise” setting, which I will use when I am in noisy places. This setting does not contain many of the lower frequencies of sound so is supposed to help eliminate background noise. My C setting is my “Music” setting and contains all frequencies and tones. She was a little concerned that when I am feeling better and there are les fluids in my ears I will want more volume, so instead of having 0-5 volume settings within each program, my volume range goes from 0-10. For some reason, having this wide range makes me feel a bit more in control of my hearing. As I did in the last 2 months, she said I will really want to keep track of how different noises sound on these settings and which situations are still difficult so she can fix these issues as best as possible during my next readjustment in 2-3 months. I left the appointment today on A7.

I also completed a hearing test, which I requested from my Envoy Technician. She said she would email this to me within the next couple of days, so I am very excited to compare these to my original hearing test scores. I feel like I have noticed such an improvement and hope that my hearing test reflects this.

My appointment lasted 2.5 hours and I truly feel satisfied that all of my issues/concerns were addressed and that the device is set in the best way possible to fit my needs, considering the fluid build up from my cold. While I cant help but feel a little disappointed that I was not able to get the boost I was hoping for, the situation is outside of my control so I must accept that this is my reality and move forward from here.

Well, that is pretty much the gist of my re-adjustment appointment. I also feel like there have been some positive changes in regards to my level of hearing and new sounds. I didn’t think it was possible but I feel that all noises generally sound crisper and clearer to me. Especially my whistle. Also, before my readjustment, I found most noises to sound more high pitch than I remember. I barely recognized my moms voice on the phone. Now, most noises seem to have a bit more base, which makes everything sound deeper, and to me, more “normal”. Probably because I am not used to hearing these high pitched tones as that is where my hearing loss is more profound. I have also found that noises that used to be extremely loud and cause distortion with my Esteem, such as cars driving by downtown or the blow dryer, actually sound "comfortable" and not too loud. I also found that I can hear pretty well on my cell phone but my work phone is still a bit difficult for me. I think I am going to have to play around with this more. Finally, all of my bodily noises (i.e., chewing, swallowing, drinking, etc.) are noticeable again.

While I was at work today, every time I went into the kitchen, I heard the refrigerators running. At the end of the day, I heard the dishwasher going too. There have been so many occasions where I would open the dishwasher and not realize it was on because I couldn’t hear it. The refrigerator and dishwasher are both noises that I have not heard in the 4 years I have been with my company, so this was pretty exciting for me. I had a large team meeting today and didn’t really notice the difference that I was hoping for, but I do think this has a lot to do with my dependency on reading lips more than the clarity of voices. Sometime I feel like I am attending a meeting in a different language. I can physically hear everyone in the room, but I just don’t understand what is being said most of the time (unless I am looking).

Since my appointment was downtown near were I work, I had Fraser drop and pick me up from work today. My mom called me as I was getting into the car, which I surprisingly heard on vibrate in my purse. She was anxious to hear how everything went so I updated her on the details of my appointment and she told me that I "sound really good". I was sort of frustrated when I talked to her so I wasn’t sure what she was talking about. She said that my voice sound better and more clear AKA less lispy. My mom still claims that she never noticed my speech impediment, but come on mom, its pretty apparent. Mom’s. Always trying to make us feel better about ourselves.

As I am sitting in bed writing this, I can hear the dishwasher going off in the kitchen 2 rooms away. Since my activation, I have been able to hear this noise while in the kitchen, but never this loud and clear from a distance.

The only thing I have not tried to do today is listen to music but my hubby, puppy, and I are roadtripping from Denver to St. Louis (12-14 hours) on Wednesday, so I am sure I will have plenty of opportunity to do test this out.

Head Cold and Feedback From My Esteem

Most of the feedback and distortion I have experienced with my Esteem has sounded oceany or like a crackling noise. Up until last week, I had only experienced the high pitched screeching feedback twice. However, I have only heard this on the highest profile setting (C5) and it has never been constant. The first time I heard this type of feedback was about a week before Thanksgiving when I got out of the shower and wrapped my hair in a towel. My ear was folded within my towel when this happened so, once I adjusted the position of my ear the feedback went away. Just to be safe, I changed my programming to C4 that evening. I wonder if having water in my ear caused this feedback?

The night of Thanksgiving is when I heard this high-pitched feedback again. I had spent a long day at work (yes, work!) in effort to save my holiday time for Christmas and we had spent the evening with Frasers’ parents cooking and eating dinner, so I was pretty exhausted that evening. Fraser collapsed in bed and I jumped in bed on top of him, laying my head on chest. This was when I heard the squeaky high-pitched feedback for the second time. I looked at Fraser and asked him if he heard it too. He seemed puzzled as to what I was talking about. As a joke, my husband calls my hearing aids my “squeakers” because every time I try to cuddle with him and lay in his nook, they would produce a loud screeching feedback that he could actually hear.  I guess he cannot hear feedback from my Esteem!

Throughout my life, even as a young child, I have always experienced seasonal allergies but since my surgery, my head congestion has been a bit out of control. I have been coughing up some questionable mucus and just feel like I have a permanent sinus infection. Interestingly, I have not actually felt sick. I was told by Dr. Marzo that I should expect to have some head congestion for the next couple of months and that taking an over the counter decongestant should help reduce the amount of fluids and make this a bit more manageable. During my activation, I was told that head congestion or having a cold may make it more difficult to hear, as it would when a person with normal hearing has a cold. I was also told that having a cold produces fluids in your ear which could also cause feedback. Throughout the last couple of month I have been taking Zyertec D pretty consistently and have found that this does have an effect on how well I am able to hear. I am generally able to hear much better when it is in my system.

Towards the end of November, I saw my doctor for a check-up and told her what I was experiencing. She put me on an antibiotic for 10 days but that didn’t really seem to do the trick. For the last week, I have been experiencing the high-pitched screeching feedback every time I blow my nose. Basically, my ear would pop while blowing my nose and I would experience this feedback until I swallowed and my ear had un-popped. This was even happening when I went down to C3. When my ears popped, it sort of hurt. The pain was not unbearable but it definitely didn’t feel good! I have only had one ear infection in my entire life and I just remember my ear popping and it feeling similar to this.

So, basically I have been experiencing the signs of a cold for the last month but I did not actually start feeling sick until this weekend. When I woke up yesterday, my nose was so stuffed up I could barely breath, my glands were so swollen I couldn’t even talk, and I was coughing up some questionable mucus. I spent most of the day sleeping, which my puppy Rufus did not like.  He kept sneaking into the bedroom with his ball, trying desperately do play fetch with me. At one point, he dropped his ball underneath the bed and started whimpering because he couldn’t get it. I stuck my head underneath the bed so I could grab his ball and my ear started screeching with the high-pitched feedback but this time it did not stop. I had to turn my ear down in order to get this feedback to go away. Something was definitely not right.

First thing this morning, Fraser called the doctor and made an appointment for me. She said I have an ear and sinus infection (boo!) and put me on the Z-pack, steroids, a decongestant, and cough syrup so I hope to get this cold out of my system before my readjustment appointment next week. I am very concerned that this will impact my appointment and I pray to God that everything will work out for the best.

First Day with my Envoy Esteem Implant Activated

Today, my Envoy Esteem implant was activated and it was probably the most emotional day of my entire life. I didn’t know it was possible to experience so many emotions in just one day. I want to capture all of my pure emotions so that I never forget how incredible today was. Wow. I do not even know where to start, so I will just start here.

I have a remote to turn my device on and off and it has to be placed directly over the device, which is right behind my ear (you can feel it if you touch it).  The Envoy Technician said that sometime it takes a couple of tries to get it to turn on, but I got it on my first try. When it was turned on, the first thing that I heard was my own voice and it was super loud. I never really knew what my voice sounded like until today. I sound a lot more nasally than I ever realized. I couldn’t believe how loud everything was. The sound I heard was a lot more natural than I expected it to be but still very different than what I am used to hearing through my hearing aid. Everything sounded so loud that it almost sounded a bit echoy, like I was in a tunnel or something where every single sound in the room was bouncing back and forth. I started to cry because I haven’t heard anything this loud and clear in a LONG time. I started to hyperventilate a little bit and could barely catch my breath! That’s when I heard myself breath for the first time. Wow. I didn’t realize how loud this sounds. Just the thought of how amazing this moment is made me laugh, which was REALLY overwhelmingly loud. This made me cringe a bit! Then I started to talk again and realized again how nasally I sounded. I decided I needed a tissue to blow my nose. Again… WOW that’s loud! Was all of this really happening to me? I couldn't believe it!

When I finally came back to reality, I realized I heard crying and sniffling but this time it wasn’t me… I looked over at Fras, Mom, and Dad and they were crying and sniffling.  I not only was hearing myself, I was hearing them too without even having to look at them! I got up and hugged and kissed Fraser. KISSING IS SO LOUD AND GROSS AND WEIRD. Still having a little bit of trouble with this... Once I sat back down, I took a sip of water and I heard the water swishing around in the bottle, I heard the bottle crinkle as I was holding it, I heard myself swallow. Gosh, I am a loud drinker. I wonder if all of these things I was hearing bother other people and are loud to them too. Fraser started asking me what I could hear, and I was able to answer him without even looking at him. This was all so overwhelming for me and my brain started to freak out.

So, the first part of my appointment was having the device turned on. After this, they have to run some test on the device to make sure that everything is working properly. While they were doing this and adjusting the settings, I started to hear a "wooshing" noise in the room. I started to panic because I thought this was feedback from the device. After testing this, we soon realized that what I was hearing was actually the heat blowing! I had actually heard this and noticed when it turned on! I can't remember the last time I took notice of this! As part of the testing and reprogramming, they have to turn off the device and then reprogram it to "minimal gain" because, well, everything is just so overwhelmingly loud at first. When they turned it to "minimal gain", things started to sound a bit hallow and distorted so they had to reprogram it a couple of times to make this go away. The best way I can explain my sound distortion is that whenever a sound is "too loud" for my device, it sounds like what you would hear if you were talking on speaker phone and it was too loud. So the Envoy Technician basically had to turn down the volume as well as eliminate certain tones and ranges of sound so that I am not getting this type of distortion. Once my brain adjusts to the device, I will be able to hear at these levels without this distortion.

During the reprogramming, I found that voices and noises were not as loud as they were at first and I was having a difficult time hearing conversations going on across the room. This made me very upset and I started crying again. I went into this process thinking that my life would change drastically after the device was activated, and while I am still hearing so many new sounds, why was I still having this much trouble understanding and comprehending what people were saying? During the activation appointment you go from hearing all of these new noises so loud and clear when they first turn it on, to being reprogramed to "minimal gain" where you are back to wishing your hearing were better. 

All of the cameras were on me and I was starting to feel overwhelmed. [On a side note, I should mention that the Oprah Network filmed my activation and did a segment on me for a show called "Found" premiering in February 2012. Essentially, it is about me "finding" my hearing again.] I wanted to ask questions and express my concerns to the Envoy Technician but since it was being filmed, the producer was also butting in and trying to get the "shot" that she needed (e.g., close up of me holding up the device to my ear). I took one look at Fraser and he already knew what I was thinking so he politely asked the producer and film crew to leave so that I could focus on talking to the Envoy Technician  oppose to helping the producer “get the shot” that she needed. I felt absolutely awful about this, but I just couldn't handle the pressure anymore!

Once everyone started to clear out of the room, I felt like I was a volcano about to erupt so I asked mom to go to the bathroom with me. Before I even made it to the bathroom, I began to cry hysterically. My mom just held me, comforted me, and wiped my tears until I calmed down. I went to the bathroom and heard myself pee. As gross as this is, the sound was just so loud and different than I remember that I actually flinched and stopped peeing for a second. When I flushed the toilet, it scared the heck out of me! No wonder I was scared of the toilet flushing at nighttime when I was a child! Hearing these new sounds so loud and clear in the bathroom lifted my spirits and gave the emotional energy to get through the rest of the appointment.

I was able to finish my appointment without the distraction of the producer and film crew. The Envoy Technician made some more program adjustments and everything started to sound a bit more natural but I was still having a difficult time understanding people at a distance from me. The Envoy Technician assured me that what I experienced today is completely normal (emotional breakdown and all!) and that it will take some time for my brain to adjust to the Esteem and learn how to hear again. This is a gradual process that takes time; it will take about 6 months and multiple re-adjustments until my hearing is optimal. 

Before I left, I learned how to use the remote control (see picture below). 

There are 3 different programs: a, b, and c. Each program has 5 volume settings. While there is some overlap across the programs, each volume setting is a 3 decibel increase. I was told that 3-5 decibels is the average sound the human brain can “take” in one day without producing feedback and completely overwhelming me. They started me at A3 and told me to adjust the device every 3-5 days, which I will do until I reach C5. During my re-adjustment appointment, they will re-program my device and remote for different settings (i.e., quiet settings, loud settings, etc.) based on my experience over the next two months. Part of the reason they start everyone at "minimal gain" is so our brain can learn to "hear" again. It is important for me to get used to hearing the sounds directly around me, such as my voice, chewing, swallowing, etc., before they open up new ranges and tones.  

After my appointment ended, I spoke with the producer to see if I could reschedule my post-interview with them once I was able to emotionally compose myself and get through the emotions of today. Everyone was (surprisingly) very understanding and so grateful that I shared this special moment with them. They told me that what I did today was very brave and will touch and change the lives of many people living with hearing loss. Thinking about this right now, I honestly cannot believe that I had the courage to share my story and let complete strangers film such an emotional and personal moment in my life. I have always been very secretive and private about my hearing loss (some people don't even know that I am hearing impaired!) and I will be sharing this with the whole freaking world!!

I left the appointment in a very overwhelmed and emotional state, especially since I felt so terrible about not finishing my day with the film crew. My appointment was held in a very large and confusing building in downtown Denver with multiple parking garages so it took us about an hour to find our parking place. Once we got to the car, I went to grab my phone and couldn't find it! After endless searching, we found it in a puddle of water under the car (go figure!). We started driving and my navigator was sending us to dead ends and AHHH I just wanted to get the heck home at this point!!  My appointment ended at 3:30 and we did not arrive home until almost 6:00 pm! DINNER TIME! Fras and I picked up some burger from one of my favorite places on the way home. While I was waiting in the car for Fras to run in and get the food, I called mom. It was weird, because when she started talking I actually had to turn down the volume so I could hear her. With my hearing aids, I would keep pressing the volume up button throughout the entire conversation even when it was on the highest volume! I was always trying to find a way to make it louder! I did still have some trouble understanding her but it was much better than I ever did with my normal ear or hearing aids.

I was so nervous before my activation appointment that I couldn't eat so when we finally got home I was starving! This is when I heard myself chew for the first time in as long as I can remember. As I was chewing, all I could think about was how weird and gross this noise was. I felt self-consious and kept looking around to Fraser and my parents to see if they could hear the smacking of my lips. When I took a bite of a crunchy french fry, all other noises around me became invisible and my ears flooded with crunching. Fraser was talking to me and I had NO idea what he was saying. He assured me that when he is eating something crunchy the same thing happens to him.

While hanging out after dinner, I heard stomping. It was Rufus coming up the stairs of the basement! When he approached the living room, I could hear the tags of his collar clinking together and his tail "tap, tap, tap" against the coffee table in excitement! Dad, of course, was making a cocktail and dumping the ice into his glass and I heard him loud and clear across the HOUSE!! Everywhere I walked in my house I heard the creaking of the hard wood floors. 

Before bed I decided to clean up and take a shower. I have severe to profound hearing loss, so without my hearing aids, cannot hear much of anything in the shower. With my esteem, I heard EVERYTHING... the "pitter-patter" of the water hitting the tub, the sound of water filling and emptying in my ear, the "whack" of soapy water hitting the shower door as I lather my body in soap. I cupped my hands together and heard the water splashing into my hands. I heard some squeaky noise as I rubbed the water on my face and lathered my hair with conditioner. Then all of a sudden I heard someone talking. I couldn't understand what was being said so I called out, "Fraser? Are you talking to me?" A few seconds later he popped his head in. "Could you hear me talking in the bedroom?” I replied, “Yes, were you talking to me?". He said, "No, I was talking to my mom on the phone. I can't believe you actually just heard that!". Please note that we had this conversation while I was rinsing my hair (not reading lips). I heard him and actually understood him. I also was able to hear Fraser whistling and running around the house with Rufus. I never EVER would have been able to hear ANY of this before my my implant! SO COOL! [Totally off topic, but I just sighed as I am writing this and I heard myself breath. What a wonderful sound.]. I spent a good hour in the shower just soaking up all of the new noises I was experiencing. I think water trickling is one of the most beautiful and peaceful noises in the entire world. I never wanted this moment to end.

What I am hearing at home tonight is completely different than what I heard at my activation appointment earlier today. Every second is different and a learning experience for my brain. My hearing aid and Esteem also sound different and are picking up on different types of noises. Right now my hearing aided ear (right) is picking up on more distant noises than my Esteem is set to hear. My Esteem ear is picking up on what is going on directly around me (my voice, my breathing, my swallowing, etc.).

I went into this experience expecting that my hearing would be back to "normal" today and I was, at first, very disappointed to realize that it is going to take time to be able to hear again. However, experiencing all of these new noises has been absolutely amazing and has already changed my outlook on life in so many ways! I have all the confidence in the world that this is my miracle and that this is the beginning of my new life.