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Looking back...

Several people have asked me to share my thoughts on the Esteem and how it has made a difference in my life. With my two year anniversary approaching, I thought it would be a good time to look back and reflect.

I'm incredibly lucky that I even found out about Envoy and the middle ear implant when I did. It came at a time when I realized that I needed to hear better, but my hearing aids just weren't helping as much as I would have liked. It was a bit scary - taking part in a clinical trial, and putting my trust in the company and its representatives. I knew I was taking a risk, and it was a risk that truly paid off for me.

My implant has become a normal part of me now. Sometimes I wonder how I ever got along without it. Even now, two years later, little things continue to surprise me. The other day, my youngest daughter had been home sick. We were waiting at school in the car/pick-up line, and I heard something. I looked at my daughter, and said "What's that noise?" She said "That's the fire whistle." I had actually heard the fire siren go off in another town! Sometimes at night, I can even hear the train rumbling through town, about six miles away.

There's something so serene about sitting outside on a beautiful day, and not only hearing the birds sing, but being able to identify at least three different birds singing. Or sitting on my porch and listening to the soft patter of the rain and the distant thunder.

One thing that has really been a blessing to me is being able to sleep at night with my implant turned on. I will admit, I often prefer to turn the implant off at night. But I can leave it on when I need to, which is often. My middle child suffers from migraines and stomach migraines. Her stomach migraines cause her to vomit repeatedly, every 10-15 minutes, all through the night. So she has to sleep on a cot beside my bed so I can help her. Leaving my implant on during these nights allows me to hear her each time she gets sick, so I can immediately help her through it. With hearing aids, this wouldn't be possible.

You know, I had titled this blog 'Building My Self Esteem,' because I've always had self esteem issues related to my hearing loss. Any person with a significant hearing loss will often feel like they don't fit in. It's such a struggle to communicate with others that it's often easier to just withdraw and shy away from social settings. Because we are so hesitant to join in socially, people tend to think we are snobby or unapproachable. It's a vicious cycle. We often try to hide our hearing loss or our hearing aids, because we feel like it instantly labels us as disabled. I've had instances where I would tell someone I was hard of hearing, or they would see my hearing aids, and they would immediately begin speaking in a very loud slow deliberate voice, as if I had some severe mental handicap. It's no wonder we often feel compelled to hide our disability! The remarkable thing about the Esteem is that it makes me forget that I even have a hearing loss! All of my family and friends have noticed that my self confidence has gone way up. I'm not so shy and introverted anymore.

Just a couple of years ago, I never would have imagined just how much my life would change. Because of the Esteem, I found the courage to go back to school. I now work one-on-one as a peer tutor in kindergarten. I also work as a substitute teacher. Communicating with young children is no longer a struggle. It's a pretty amazing thing to be able to carry a conversation with someone who's sitting in a different room. I can even recognize and sing along to the music that's playing from my daughter's room, on the other end of the house. I can pick up quite a bit of my daughters' conversations when they are talking in their rooms. And it's funny - they still can't get used to this. They were so used to knowing they were out of earshot before, and now I can actually hear and comment on their conversations. 

"Huh?" and "What?" are no longer the most commonly used words in my everyday speech. (My mother once commented that my middle name should have been 'What.')

I noticed that I no longer make people look at me when talking to me so I can read their lips.

One great thing about the Esteem is the ability to turn it on or off, change programs, or adjust the volume. It's truly wonderful to hear almost normally, but sometimes it's nice to just briefly sink back into that old familiar world of quietness. Whenever I have a headache and the kids are being too loud, I turn the Esteem off, and the pain is cut in half. Otherwise, I rarely change the program or volume with my remote. This seems to be the norm with most Esteem patients though.

I will be doing my annual testing in the next couple of weeks, and I'll see if I can get my before and after test results so I can post these. Maybe then I can really show just how much my hearing has improved with the Esteem. Having the surgery was a huge decision for me, one that I do not regret at all. There has been a few bumps in the road, but it has been an amazing journey.

 


My Patient Testimonial video


Back in January, Envoy invited myself and other Esteem patients to Washington D.C. to film patient testimonial videos. This is the video I made. My sister, Jennifer, can also be seen in the video with me, she is also an Envoy patient. A huge thanks to my friend, Mahvin, for helping me embed the video!

Well it wasn't so funny then...


Something happened recently, it was really embarrassing at the time, but it's pretty funny now. It was a regular day at home; Marty was at work, and the kids were at school. I wanted to call Marty, so I dialed his number and listened to it ring (I use the phone with my non-implanted ear). Suddenly, I heard three distinct beeps in my implanted ear. I went into an absolute panic.

About this time, Marty answered. I started screeching that my implant just beeped. It couldn't possibly be time for the battery to die, I just got the implant in 2008! If it was beeping, something was wrong! Somewhere in the conversation, I heard the beeps again and said, "oh my God, it just beeped again!" I was tearing up, in full panic attack. Marty said, "Yeah, I heard it beep." I thought that was incredulous, but he did indeed hear it. So there I was, pacing around the house and panicking, Marty told me to hang up and call the doctor. So I did.

I told the receptionist that I was an Envoy patient, and that I needed to talk to someone on the team immediately, it was an emergency. She told me Steph and Amy weren't in the office, and Dr. Kraus was with a patient. I explained that I heard the beeps from my implant, and it wasn't time for it, and that I was very upset. She took my number and said she would pull Dr. Kraus so he could call me back ASAP. I hung up, and soon heard the beeps again.

But wait...it sounded different this time. I ran into the kitchen, and it hit me...the beeps I was hearing was coming from my oven. I was baking some blueberry muffins and had set the timer. I was mortified. You may be wondering how I'd mistake this for the implant. Let me explain...


I've heard my oven timer beep hundreds of times. Well, maybe not hundreds, seeing as I'm no Rachel Ray in the kitchen... When I called Marty, I took my hearing aid out (again, I use the phone with my non-implanted ear). I just prefer listening without my hearing aid. Having the phone pressed against my ear sealed out any other noises coming in that ear. Because I was listening on the phone with that ear, the beeping timer sounded like it was beeping directly in my ear. Once I had hung up the phone, my hearing was once more even.

I raced to call the doctor's office back, and hurriedly explained that my implant had not beeped, that I had heard one of the kids' toys or something. I was too embarrassed to tell the receptionist what really happened. I had been hysterical, thinking something was wrong with the implant. So yeah, I felt pretty stupid afterwards...


Back in D.C.


On December 17, 2009, I went to Washington D.C. to speak about my experience with the implant. I was invited back to D.C. by Envoy Medical on January 15, 2010. This time, I was invited to take part in filming for the Envoy Medical website, informational dvd, and tv commercial.

Marty could not go with me this time, so I went with Jenn and her husband, Steven. Jenn is my sister, who also has the implant; she was invited as well. We arrived in D.C. in the early evening, and checked in at the Dupont Hotel. The Dupont was absolutely beautiful! After we settled into our rooms, Jenn, Steven, and I met up to go out to dinner. We chose a nice restaurant right across the street, and had a nice dinner.

I ordered room service for breakfast, and then met Jenn downstairs at 8:00 a.m. We were scheduled to begin filming at this time. We found out that the schedule had changed, and we would begin the day a little differently. Besides myself and Jenn, there were three other patients who would film as well. It was decided that we would all go down to the NEWSeum to shoot some footage first. When it was our turn, Jenn and I filmed a few scenes together. It felt a little strange having the film crew follow us and see other people watching!



 





 



When we got back to the hotel, it was time for me to film my individual part. This time, I was placed in front of a green screen, and had to talk about my experience with the implant. Let me tell you - this was awkward!! You walk into the room knowing exactly what you want to say, but the minute the camera starts rolling...you forget everything. I rambled and stammered a bit, and did the best I could. Shelly, Kendall and Amy helped me stay focused, and a couple of jokes helped to break my tension. I finished my filming, and immediately wished I could start all over as I started thinking more clearly. Jenn was next, and I stayed in the room to watch her. She thought she bombed too, but she spoke so much more eloquently than I did.

Later that night, Jenn, Steven, and I met and hit the town. We rode the metro, that was really cool. We saw the White House and all the memorials and monuments. The Lincoln Memorial was awesome! I didn't get to see Iwo Jima, unfortunately. We walked around for five hours, and we were exhausted!

Envoy Medical allowed us to stay an extra day. I met everyone downstairs for breakfast. Three other patients had flown in to do their own filming. One of these patients was Craig, who I'd been in touch with online. I absolutely loved meeting other patients and hearing their stories! One woman (I'm thinking her name might have been Mary?) was the 3rd patient in the U.S. to have the surgery! Talk about brave...

Jenn, Steven, and I left around 10:00 a.m. to go to the National Holocaust Museum. This has always been a huge dream for me, so I was very thankful that Envoy let me stay an extra day so I could do this. We only had 1 1/2 hours to look around, so I had to hurry along the museum. It was breath-taking. We went back to the airport soon after, and went home!

From my understanding, the footage will be used on the Esteem website. Visitors will be able to click several patient photos and see us speak about our implants. The footage may also be used in a dvd and television commercial. I will be notified when the editing of the film has been completed. Envoy Medical seems very excited about moving forward, and they are ready to do some mass marketing. It was an awesome experience in being a part of that. I also had a great time with Jenn and Steven, too bad we can't do this more often!



Some photos of Jenn, Steven, and I in D.C.








The big day is almost here!

I am excited! Thursday, February 4th, 2010, is the day the FDA will issue the final approval for the Envoy Esteem implant! With this approval, the Esteem will hit the market and become available to any adult who is eligible to receive the implant. Envoy Medical has been fielding calls from people who want to know more about the device, and there's even a list of people who are already signed up to receive the implant as soon as possible.

It seems like we (the patients) have waited forever for this day to come. Now that it's almost here, I cannot wait to see what will happen over the next few months and years. The engineers at Envoy Medical are constantly working to improve the device, and one day we'll see smaller remotes, smaller implants, and maybe even a rechargable battery.

February 4th is the day the Envoy Esteem will officially move forward to the next chapter. I suppose it is possible for the FDA to deny approval; but with the unanimous approval and support of the FDA advisory panel, I don't think that's likely. We shall soon see! 


Great news!!

I know I've been out of touch for a year now, I'd adjusted to my implant, and there wasn't much to tell. Now, I'm excited to say....


THE ENVOY ESTEEM IMPLANT HAS BEEN APPROVED!!


I was invited to speak at the FDA panel meeting in Washington D.C. on December 17th and 18th. Envoy Medical sponsored my trip and expenses. I brought my husband with me; it was his first time flying, so that was pretty interesting. He was a little afraid of the plane, and I was far more afraid of the cab ride. Those people drive like they're competing in Nascar! >.<


Anyway, we arrived Thursday afternoon, and stayed at the Marriott Washingtonian Center. Our room overlooked a beautiful lake. We hit the boardwalk on the lake and ate a nice lunch. That evening, we went down to the lobby and met four other Esteem patients, as well as several people on the Envoy team. Besides my sister Jenn, this was the first time I'd actually been able to meet others who actually had the implant as well. We mingled for a while, and then we all went out to dinner. I really enjoyed this! The next morning, we met for breakfast in the hotel (at that time, I met my doctor, Dr. Kraus), and then rode to the Holiday Inn, where the meeting would be held. The meeting started at 8am, and didn't end until a little after 5pm. There were about 20 members on the FDA panel. We listened as Envoy and the FDA gave their presentations, and as the panel asked questions. We broke for lunch, and the meeting resumed at 1:15. This was when the patients would give their testimonies. There were seven patients present to speak: myself, Marcia, Amy, Andrea, Susan, Craig, and one other I met only briefly. We were given five minutes each. I had my speech prepared, but I was a nervous wreck, and I think I rushed through it a bit. I spoke about my life-long dislike of conventional hearing aids, and how the Esteem has changed my life. The Esteem implant has made a huge impact on my life in this past year, but that's another blog. Anyway, we all had a chance to tell our stories, and I teared up a bit as I heard everyone else speak - their stories were so much like my own. The only question the panel had for us was if we experienced any taste disturbances, which only one of us did for a brief time.


 

The FDA had some questions about the taste disturbances and revisions (out of 57 patients, three required revisions after surgery). They also asked about a couple of patients with severe hearing loss, who made huge improvements after scoring near 0% at 50db aided. I was one of these people. The questioning was brutal, the FDA was very meticulous in covering all grounds. Envoy was well-prepared, and I thought they did a great job handling the panel's questions.


The FDA voted unanimously to approve the Envoy Esteem, with a few stipulations. From what I remember:
- a trial for bilateral implants was approved (a trial for the second implant in current patients)
- the device was approved for sale to moderate-severe hearing loss patients only
- one month hearing aid trial required
- risks clearly defined in advertising


This was a very exciting moment for all of us! After years of waiting and hoping, the implant was finally approved. We're told we could possibly have the second implant done as early as April. I am extremely excited about this! Envoy continues to work to improve the device, and they're also currently designing a pocket remote that will not have to be touched to the head to change programs or turn on/off. I'm not sure if patients with bilateral implants will have one remote or two. I'm rather curious since I use my remote everyday.



Envoy is buzzing with excitement, and it looks like they plan to advertise the implant nationwide. I can't wait to see how this takes off now that we've gotten approval. I truly hope this company will be able to reach out and touch lives the way that it has touched mine. I've been in good hands with Envoy, they've taken care of me, and I can see they are genuinely interested in the patients' experiences with the implant.


By the way, my husband and I ended up staying overnight Friday night so we could be present for the entire meeting and the vote at the end. Of course, as luck would have it, we got snowed in! Two feet of snow - such a beautiful sight. It was quite an adventure, and we didn't make it home until late Sunday, but Envoy made sure we were taken care of. I'm glad I was able to be present for such a huge moment for Envoy. I feel like I have an invested interest in the company, not only because I am implanted, but because my seven year old daughter - who is also hard of hearing - could very well one day benefit from this astounding technology!




Envoy patients: Susan, myself, Craig, Marcia, and Amy

Envoy patients at the meeting: Susan, myself, Craig, Marcia, and Amy

It's been just over a month now...


...since my Envoy Esteem implant was first turned on (August 15th).

I've begun to realize that it really is an adjustment. When my implant was first turned on, I thought it was a piece of cake, what's so hard about it? Now I know..it's just easy to get a little overwhelmed at times because you have so many new sounds, your brain has so many new sounds to process. As an example, right now... I am sitting in a chair at the kitchen table. I can hear:
- the chair squeaking
- the house giving the occasional "settling" creak
- the fish aquarium humming
- keyboard clicking
- the dog barking
- cars passing by
- the air conditioner
- my water swishing in the cup as I drink
- my "head noises" such as yawning, chewing, breathing

If I were sitting here before the implant, I would probably only hear the keyboard and my chair squeaking. Still, it's very quiet right now, so it's not overwhelming. It does get overwhelming when I have all of the children at home. I think they are all behaving the same as they always have, but to me, it sounds like they are talking/yelling at the top of their lungs! Every single day I find myself telling them to lower  their voices, stop being so loud. Now, I'm trying to refrain from doing so, and to remind myself that it only sounds loud to me. I also occasionally fight the urge to turn my implant off at times, just for some peace and quiet.

Speaking of the kids...I don't think they are big fans of my implant right now. Why? Before the implant, I couldn't understand any of their conversations from another room. Now, I hear and understand quite a few. Example: I'll hear the kids bickering in their rooms on the other end of the house, and one will say "I'm telling momma!" I'll call out, "No, you're not, I don't wanna hear any tattling!" (If you're a parent, then you'll know how annoying it is when a child runs to tattle because his/her sibling dared to look at them the wrong way)  I then hear silence as they wonder how I could have possibly heard that. I'm beginning to discover just how smart kids really are, and they know how to take advantage of your hearing loss! ; )

Anyway, being in loud environments is definitely the biggest adjustment. I'm still working on it, and I even start back at school tomorrow, being a peer tutor to the kindergartners, yikes... I do fine as long as I remind myself to take things slow.

I love not having to wear a hearing aid in my right ear! Absolutely love it. No more sweatiness, no more occlusion (feeling of a blocked ear canal), no more tenderness after taking the aid out, no more annoying feedback, no more worries of cleaning a clogged aid, no more constant maintenance (as I'm having to do with my left aid), no more limited access to any water-related activities. It's a really neat sensation of jumping in the shower and still being able to hear; and I do still occasionally check to make sure I'm not wearing an aid in that ear. Old habits die hard, and my brain tells me - if I can hear, then I must have an aid in. Some patients have reported some feedback with their devices. I've only had two small cases of feedback - one when I turned the Esteem to the highest/loudest setting, and once when I forced the feedback by holding my breath and blowing through the nose (I was told this can cause the feedback). Otherwise, I have no feedback at all, even when lying on that ear at night. I'm really glad my Esteem seems to be working really well.

I am hearing many sounds that I couldn't hear at all before, and it can be fun trying to figure out the source of the latest sound I've discovered. A few sounds that I could not hear at all before (some I didn't even know existed):
- the washer and dryer beeping when the load is finished
- stove beeping when ready or finished
- microwave beeping
- cellphone beeping as I text (didn't know it did so at all)
- cellphone beeping because of missed call or voicemail
- the cicadas chirping in the trees
- the fish aquarium humming
- house creaking
- conversation in another room
- crickets
- my truck's turn signal clicking (didn't know this existed either)
- my daughter grinding her teeth
- a truck idling

If you'd noticed, a lot of these sounds I just listed are some of the more high pitched sounds. I have a profound hearing loss in the higher frequencies, so these are the sounds I have the most trouble with. And of course, there are many sounds that I could only hear faintly or occasionally before, that I can now hear regularly. I still lip read regularly, but I don't have to rely on it so strongly. Still haven't worked up the courage to try watching tv without captions, or to try listening on the phone with my implanted ear. But again, old habits usually die hard. Just as a blind person may have a surgery to restore much of their eyesight, but may still strongly rely on their comprehension by sound or touch. There's no rush anyway, it's only been a month and there's plenty of time to work towards new goals, right?

I don't know when a new phase will begin or when the bilateral trials may begin, I've heard conflicting opinions, so who knows? The thought of participating in the bilateral trials has weighed heavily on my mind, but that's another blog. For now, I'm just really glad to be a part of the Envoy Esteem clinical trials, and I'm taking it one day at a time. It's been an interesting journey so far!  =)

"I can't turn my ear on!" (dead remote)


I had noticed for a few days that whenever I tried to change programs with my remote, it sometimes wouldn't respond correctly right away. When this happens, I will hear either two or three beeps, and the lights on the remote will flash to let me know the requested change didn't go through. I was wondering if it may be the batteries, but the low battery indicator on the remote wasn't lit up. Someone on my message board had mentioned having problems with her remote, and a suggestion of changing the batteries cleared her problem up.

This morning, after taking the kids to school, I was ready to curl up in the chair with some breakfast and watch 'True Blood,' which is a newly discovered HBO series that I love. I grabbed my remote to turn my Esteem on, and only heard silence when I pressed the button. Tried a few more times, but all I'd get was a flashing light. After a few attempts, the low battery indicator did light up, so I think the remote may only light up when the batteries are too low to be of any use.

So I called Marty up and whined that I couldn't turn my ear on. He got a kick out of that, it's not every day that you hear such a thing, lol. Of course, as my luck would have it, there are no AAA batteries anywhere in the house. I searched everywhere, and I even hoped I could steal some tv remote batteries long enough to turn my implant on. No such luck. Several minutes later, I did manage to get just enough juice out of the remote to turn on, thank goodness, lol.

I'm a little surprised at how quickly the remote batteries died. Our tv remote batteries can last up to a year. It's not a big deal that they didn't last so long, it's only two AAA batteries. I just wasn't prepared with a back-up. I wonder if the other patients' remotes are lasting only a month or so before needing to replace the batteries...

Blonde moment?

No...I'm not intending to make fun of blondes...

A week or so ago, it was near bedtime and I was waiting for Marty, so I grabbed my iPod and went to bed. I turned to my favorite song, and popped the ear buds in my ears. The left side was working fine, but the right side had no sound at all. Now, my iPod had recently acted up, so I thought it was doing so again. I went through the motions of unplugging and plugging in the headphone jack, turning the volume up and down, turning the iPod on and off, resetting the iPod, jiggling the wires, you name it...

If you know me well, you know that I will grieve heavily the day my iPod dies. So I was nearly to the point of tears, and while muttering a few choice words, I switched ear buds to different ears. That's strange...the right ear bud is working just fine in my left ear? Then it hits me...I had turned my implant off before I got into bed, and that's why I could hear no sound in the right ear.

Amazing how something like that can make you feel like you have the intelligence of a flea, huh? :D

Activation appointment


I know I've gotten way behind on updating my blog, things just get a little busy this time of the year. My activation appointment was on September 8th at 11 a.m. When I arrived for my appointment, Stephanie took me to the back and checked my ear drum first. All was good there, so we went to the conference room where I was greeted by Martin (the Envoy engineer who works on my programs) and two new Envoy representatives. They were two young ladies, and I cannot remember if they are engineers or otherwise.

After the introductions, Martin and Stephanie asked me about my implant and how I was doing. I told them I was doing well for the most part, and I was really enjoying it. I brought up two issues that I'm dealing with. 1) Everything sounds so much louder now. When the kids are all chattering, I'm having a difficult time determining whether they are being louder than normal, or if it just sounds that way to me only. I'm constantly asking them to lower their voices and stop being so loud. 2) Within the last two weeks before my appointment, I was suddenly often feeling very short of breath, and feeling as if my heart were racing. Because my heart was beating pretty fast, I was hearing the heartbeat in my ear - a constant thudding that was often distracting. (Since my appointment, this has nearly ceased altogether, so I think maybe I was just dealing with a little anxiety at the time) I admitted to Martin that I turn my implant off nearly every night at bedtime, simply because it's nice to retreat to a silent world after dealing with a lot of noise all day. He reminded me that I should leave my implant on, at least at a low volume, to help with my adjustment to the implant.

Martin turned my Esteem to a loud volume, and we went to the testing booth for some tests. Stephanie did the bone conduction tests first. Then we started the speech discrimination tests where I repeated the words spoken. This test was done at low, normal, loud, and comfortable volumes. After that, I did the dreaded test which I'm told has been nicknamed the "quicksand test." This is the test where I hear a lot of background noise as if I were sitting in a very crowded restaurant, and I must repeat the sentences that a woman speaks over the noise. The sentences are random so that the patient can't guess at (when you're HoH, you're good at picking up a word or two and guessing what the topic is). This was difficult, but I did as asked and repeated what little I heard. I saw Stephanie and Martin seemed to be discussing some of my test results, so it made me a little anxious. I was just hoping my results would fall somewhere in the realm of what they hoped to see.

After the testing was completed, we went back to the conference room. Stephanie went over my test results. I hope I have remembered these test results correctly... On the test with the spoken words, my pre-implant score was 52%, the test I'd just completed was 87%. On the quicksand test, I went from a pre-implant score of 0% (meaning I didn't get anything correct) to 52%. Stephanie and Martin seemed to be pleased with the results, and Stephanie said most patients will do even better after the first ten months or so. So after seeing that I'd made an obvious improvement on my testing, I'm hopeful that I can improve even more over time. Dr. Kraus popped in for a few minutes, and asked how I was doing. He looked over the tests, and remarked on how well I did at a lower volume. Not exactly sure what he meant, I'm assuming maybe that I didn't have to have the volume at a very high level to comprehend what was being said? I really need to learn more about the tests...


Martin added a new program to my device. This one is for noisier situations, it'll help compress all of the background noise. I immediately noticed a difference. We set up my next two appointments for October 20th and December 15th, and then we left. on the ride home, I really noticed a huge difference with the new program. The background noise such as the tires on the road and the radio chatter didn't seem to be as overwhelming. I could still hear them, them they didn't sort of overpower the conversation between myself and Marty. Definitely liking this new setting!

Will update a little later with the other stuff! =)