...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! =)
- Mood:
grateful
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...
- Location:Home
- Mood: relieved
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
- Mood:
ditzy
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! =)
As I stated in my previous post, when Martin first turned my Esteem on at the lowest setting, it sounded very much like my hearing before I was implanted with the device. Not impressive, and I thought I might be in for disappointment. Martin turned the volume way up, and the sound of my voice was very loud. I could hear my swallowing, yawning, ear popping, and a cord rubbing against my shirt.
When we came back to the conference room, Martin set the Esteem at a comfortable level for me. It honestly sounded a little similar to a hearing aid. It wasn't quite the completely natural sound I'd expected, but it also didn't have the hollow, artificial sound that a hearing aid can have. So I guess it was kind of in between these. I was pleasantly surprised with what I was hearing. My implant is in my right ear, so when I put my hearing aid in my left ear, I was really surprised at how much better everything sounded. This was because the hearing was more balanced among both ears. The bad thing is my aid is about 13 years old, and it keeps cutting off, so it's on its last leg. Marty and Amy's voices sounded natural, Martin's voice would sometimes sound a little sharp.
Before we left, I went to the bathroom, and this is embarrassing to say - but the sound of the toilet flushing sounded like Armageddon had arrived. It was loud! The ride home was a little overwhelming. So much noises coming from everywhere. I played around with my remote until I found a comfortable volume. The noise of the tires on the road was loud, and I was trying to listen to music, listen to Marty talking, and identify different sounds. I'd given up on my hearing aid because it would cut off at the slightest noise, so that left me to sort all these sounds out with only my implant. It was just too much going on at once.
We got home, and I immediately felt more relaxed. It didn't seem so overwhelming. Once inside, I started noticing a few things I couldn't normally hear. I heard Emily slurping her drink from a cup. Marty was testing me out by whispering, and I heard most of it. I heard the porch screened door open and close. After Marty left for work, I tried calling him and listening with my implanted ear (I could never use the phone with this ear at all). It didn't work, sounded horrible. This was to be expected though, and who knows, maybe with a bit of practice, I can learn to use my right ear. It's only the first day, so I haven't had time to adjust, but I'm finding that I prefer to turn my Esteem off while I'm talking on the phone. It's because the loudness of my voice in one ear distracts me from listening with my other ear. This increased volume of "head sounds" will eventually fade to the background, as my brain re-learns to tune these sounds out.
I am constantly sticking my finger in my ear, expecting to feel a hearing aid in my implanted ear. My brain keeps telling me I am wearing a hearing aid because of the increased volume of sounds, so I'm having to constantly remind myself that I am not wearing an aid. I couldn't resist jumping in the shower so I could experience being in water and still hearing as if I were wearing an aid. My first impulse was to jump out of the shower! See..I have to keep telling myself there is no aid in that ear. The water raining down over my head reminded me of being in a car wash and hearing the water stream roll over the roof of the car, lol. It's true...
I was VERY excited about trying out music for the first time after being turned on. I was tired of walking around with only one ear bud. My first two songs (carefully selected!) were "Miracle Drug" by U2 and "Sunshine" by Mark Owens. At first, it sounded really bizarre hearing the music better in what was previously my worse ear. But my ears quickly adjusted, and I was really, really pleased with the quality of the music I was hearing. It sounded so much richer, and there were backing instrumentals that I heard that I didn't even know existed. Very happy with this!
So this really winds up the experience so far. It's only 6 p.m. so I still have a lot of time left today to experience all these new sounds and sensations. I'm gonna update as I get more adjusted to my Esteem, the next few days should be interesting. Of course, tomorrow, I can gripe about how much louder Marty's snoring is... ;D
- Location:Home
- Mood:
curious - Music:"Sunshine" De3licious Misery/Mark Owens
I'm back home from my appointment, and I'm feeling slightly overwhelmed and maybe a little disoriented by the experience (normal reaction). I am dividing the day among two posts, one detailing my appointment, and one detailing my reaction to being activated.
We arrived for my appointment, and I was really nervous, maybe even more so than I was before my surgery. Amy checked my ears and said they were clear, no fluid, and my eardrum was vibrating normally. Most patients still have some fluid left at this point and may not get full potential from the Esteem right away. Amy then took Marty and I to the conference room where we met our Envoy engineer, Martin, again. I believe Martin said he is originally from Argentina, very nice man, his accent can be slightly difficult at times. He's very patient about making himself understood though.
I sat at the table, and Martin was beside me with a laptop. He explained a little about the Esteem, he said we would first turn my Esteem on at a low level that would closely match the level of hearing I had before I was implanted. Then he showed me how to use the remote, and asked me to hold it against my head, where my implant sits. I did so, and he turned the Esteem on. There were three loud beeps, which scared the crap out of me! He then talked a little bit and asked my thoughts on hearing with the implant now.
At this point, it wasn't impressive, it was at a very low volume. (After this came a series of volumes and adjustments, so this probably won't be a fully detailed account) Martin then told me I would hear a series of tones, and to raise my hand when I heard them (this was some sort of testing). After that, he increased the volume until I indicated it was at an uncomfortable level. When that was established, we turned my Esteem back to the lowest level, and went to the booth for testing. We tested my hearing at the low level as well as the high level. With the implant turned to the highest level, my voice was extremely loud. Some noises, such as swallowing, ears popping, and yawning were more prominent as well as an attached cord rubbing against my shirt.
After completing the testing in the booth, we went back to the conference room. We discussed the implant and remote some more, and Martin mapped my three different programs for the remote. This is basically like a rough draft, different levels of volume, with Program A being the lowest and Program C being highest. Each level has a volume control of 1 to 6. After I've adjusted to hearing with the Esteem, Martin will set up the programs for different situations such as everyday chatter and noisy restaurants. While Martin and I were talking so I could get a good feel of the implant, Amy came back with my left hearing aid, and I put that in. The quality of sound was much better since my hearing was more balanced between the two ears. I was also very pleasantly surprised at how loud I could turn the volume on my device, because several others have said their devices were turned on at a low level. Martin and Amy explained that this could be because other patients may have fluid in the ear, thus preventing the eardrum from vibrating properly. They also stressed that every patient's experience is different, so we can't really assume our experience will be the same as others. Martin said he would prefer it if I would keep the device on at night, to get full benefit from it, so I guess I am stuck with hearing Marty's snoring after all, darn! =) After a bit of tweaking and final instructions, Marty and I left. My activation/tweaking appointment is scheduIed for September 8th @ 11 a.m. I have two pictures of the my new remote below. My next blog entry will focus on my reaction to having the implant turned on.
The second generation Envoy Esteem remote: 
This is my Esteem remote and my iPod video, just to give you an idea of the size: 
- Mood:
tired - Music:Noise, noise, noise!!
It's been just over a month since I had my Envoy Esteem surgery, yet it seems like it's been much longer. I'm getting a bit impatient, I am so ready to finally have the device turned on! August 15th, 21 more days to go...
I can no longer tell the implant is sitting under my skin unless I touch it. The slight pain and uncomfortable feeling when lying on my implanted side is no longer there, I can't even feel the implant while lying down. I was a little worried about that, not knowing if I would always feel a bit uncomfortable while sleeping on that side. The numbness in my ear is mostly gone. I do have some slight numbness left, and it seems to be at the top of the ear, but it's difficult to pin-point it. It doesn't bother me though. The taste disturbance is almost completely gone. I notice a slight disturbance once in a while with certin foods. Like the numbness, it doesn't bother me at all. I'll post an updated pic of the implanted area soon!
I've found it increasingly difficult to hear now that my right ear is completely deaf. Those who know me, know I've always hated hearing aids and I've always avoided wearing them. Now, however, I've become totally dependent on my left hearing aid, I feel like I can't function without it. I have much more trouble distinguishing which direction most sounds are coming from. It's interesting - I thought my right ear was pretty useless, but I had no idea just how much I depended on having hearing in both ears. Now that I'm wearing my left aid full time, I've noticed I've missed out on a lot that I couldn't hear at all without some type of aid. I can now hear:
- birds singing
- our wind chimes tinkling
- the wind blowing
- the a.c. unit running outside
- the kids talking in another room (and actually understanding some of the conversation!)
- rain falling
- music or tv playing in another room
- cars passing by
- my parrot saying phrases in another room
- distant thunder
- the cat meowing (I always thought he was quiet!)
- the fire department scanner chattering from inside the closed barn
So you can see that there's a lot I miss out on, simply because I've never liked wearing hearing aids. This makes me even more anxious to have my Esteem turned on.
And let me tell ya...one bonus to having the implant is something I'd never even considered before...I won't have to worry about losing the darned thing! ;D Since I've begun wearing my hearing aid, every other day I find myself panicking because I've misplaced it (I'm notorious for losing my belongings like the car keys, my sunglasses, my iPod, now my aid...).
I feel like a kid on Christmas Eve, the wait is killing me!
- Mood: hopeful
I am not a doctor, so I cannot tell if I posted this picture in the correct angle, I think it is correct though. Not sure what the dark line above the implant is. Certainly nothing in my head. At least I hope so, lol!
- Location:At the surgical center
- Mood: groggy
The area feels much better now, and is only slightly tender to the touch at the bottom.
If you look closely, you can see the outline of the Envoy Esteem implanted under my skin.
- Location:Home
- Mood: cheerful
I had an appointment with Dr. Kraus yesterday. We took the kids with us, so it was a fun day. My appointment was at 4:30. This was to have my stitches removed. I was pretty nervous! I'd never had stitches before, and the incision site was a bit sore, so I wasn't sure if it would hurt. The nurse took me to the back, then cleansed the surgical site with alcohol and iodine. Then we waited for Dr. Kraus. Dr. Kraus came in and spoke with us, asked me how the hospital stay was, and how I've been at home. He assured me that removing the stitches was a painless procedure, and it was. I could hardly feel it at all, and it lasted all of 3 to 4 minutes. He cleaned the incision again, and put some kind of ointment on it. He said I still have some fluid in my ear, so I could expect more post-surgery drainage. Not a problem.
I asked Dr. Kraus about the number of patients who had been implanted with the Esteem so far. He explained this, and wrote it down for me. Phase 1, the Esteem I device, was active from 2004 to 2006. There were 73 patients implanted in the USA during this time. My sister, Jenn, was a patient in this first phase. Phase 2 and 3 are actually parts of the same study, has been active in 2008, with a total of 60 patients implanted in the USA. 18 of those patients were implanted in the Greensboro office. I think there are still a few people who are awaiting surgery for this phase, and this phase will close sometime in mid July.
Dr. Kraus is great about answering questions and explaining things until you are satisfied. He seems to be the type of person who is genuinely interested in interacting with his patients, and I think he'd sit with you for hours if that's what it takes to make you walk away feeling that every minute detail of any little question you have has been fully discussed. And if you're an Envoy patient, or a hopeful candidate, you know how much we obsess over every little detail! :D
So anyway...we went home, and I was so happy to finally be able to get a proper shower, that I got a little carried away and washed my hair three times. You could say I had an Herbal Essence moment, haha. The incision area feels much better without the stitches, and guess what..all the feeling has come back in my ear! That was a big deal for me, the numb sensation just creeped me out.
August 15th! It's gonna be a long wait. It can be pretty difficult to hear in many situations right now, but that's a small price to pay. 49 days to go (but who's counting?!). I'll post a pic of the my ear without the stitches soon.
I've noticed that mornings seem to be the hardest, probably because you've spent the night trying to sleep with the shield on, and putting unavoidable pressure on the surgical site at times. I'm much more aware of the surgical site now - there's a constant dull ache, and a feeling of fullness. Touching my ear leaves a peculiar sensation below my ear lobe, not sure how to describe it. I've felt a bit nauseated at times, and my sense of taste isn't quite back to 100% yet. Some foods taste normal, and some foods taste curiously bland or dry.
I think all the drugs are wearing off, causing me to crash a bit, and just slow down in general. I still can't complain. Though this dull ache is constant, it's still pretty mild. Perhaps a 3 or 4 on a scale of 1 to 10.
I'm having fun showing off my stitches! It's fun to watch people's reactions flicker between horror and morbid fascination. :D Everybody likes to touch the area where the Envoy Esteem device sits.
Oh yeah..mom came over and helped me wash my hair today. It hadn't been washed since Tuesday night, before surgery. I feel like a million bucks now, haha. I will have my stitches taken out Thursday (appointment is at 4:30), then I will be able to get the area wet, thank goodness!
- Location:Home
- Mood: tired
- Music:"The Best Was Yet To Come" Bryan Adams
Over all, everything's ok. I'm getting some of the feeling back in my ear, and I'll be really glad when the feeling completely returns. It's just a very odd sensation - having a numb ear. Marty went back to work today, and Carly's been helping me get dressed and keeping the stitches clean. Other than that, I'm pretty much able to carry on as I usually would.
Carly took a better picture of my head. I thought there was a way to post the picture so that it's hidden unless individuals choose the click and view the picture, but I'm not seeing that option. So the pic isn't too bad, but if you're especially squeamish, you might want to avoid it.
Oh yeah..even though my worse ear was implanted, I am amazed at how much harder it is to hear with only one ear now. I can't hear my phone ringing, and the kids have to repeat most of what they say. Sounds really odd, and makes me realize that my left ear isn't quite as good as I thought it was, lol.
The side that was implanted. As you can see, you cannot tell that my head was shaved for surgery.
This is the plastic shield, placed over the surgical area. I think I was feeling a bit high here, lol.
Another view of the plastic shield.
This picture is a bit dark, but you can see the stitches that curve behind the ear and upward. The band-aid at the bottom is where my drainage tube was.
Marty was so nervous that he might oversleep and miss the alarm, that he requested a wake up call, set the alarm clock, and set the alarms on both his phone and mine! And here I thought I'd be nervous.. We got everything together, checked out of the hotel, and drove to the surgical center. I was feeling a little scared, but nothing like I thought I'd be. I was a bit quiet, didn't really have much to say. We went in to the center, I signed some paperwork, and within a few minutes, I was called to the back. I changed into a gown, cap, and socks, and a nurse took my vitals. She also placed a small patch under my left ear to help ward off dizziness and nausea. Then I laid in bed for a few minutes until the anesthesiologist came by. He went over the anesthesia procedure, then left. The nurse numbed my left hand via a small needle, and pushed an IV needle in (I didn't feel this at all). The IV didn't take, so the anesthesiologist came back and placed a temporary IV in the crook of my elbow. He explained he would put a better one in once I was asleep. They would also place a tube in my throat and a catheter in my bladder while I was asleep. That was fine by me - do whatever you have to while I'm sleeping and blissfully unaware, lol. I met my care nurse, Julie, a very sweet lady!
Marty came back to sit with me a few minutes, and Dr. Kraus came by for a small chat. I remember the nurse saying she was putting something in my IV to help me relax (I thought she meant a nerve relaxer or something) and I remember them wheeling me out of the room. At that point I was out. Surgery was started somewhere between 8 and 8:30 a.m. and was completed around 3 p.m. I came to with a couple of nurses waking me, I guess, and telling me everything went well. Dr. Kraus was there as well, and told me that the driver in my processor was one of the best performing ones he's seen yet. There were no complications at all. I was trying to fight off the anesthesia, but I soon realized that I was fighting a losing battle there! So I was very groggy, and I was a little sore. On a scale of 1 to 10 with 10 being the most painful, I rated the pain as a 4 or 5. I had a plastic ear cup covering the surgical site, and a drainage tube connected to a little pouch,which sat in a pocket in the front of my gown. The nurses wheeled me up to my room, and gave me two Percocet tablets, and I was feeling pretty darn good. I took a small nap, and when I woke up, Chris and his mother came in to the room. I met Chris online a couple of weeks earlier after discovering that he was in the study as well. Chris would be having his own surgery the next day. We all had a nice chat, and they left maybe an hour or so later. Other than a bit of soreness in the neck, I was feeling absolutely no pain in my ear.
I was warned that the patch that was placed behind my ear would cause me to have an extremely dry mouth, and boy - were they right! I tried a soda and chocolate pudding, the soda was ok. Then I ate a bit of chicken noodle soup, and even the soup tasted dry. It was as if I'd stuffed a bunch of crackers in my mouth, with no water to wash it down with. We were given ham sandwiches from a local deli for dinner, but I couldn't eat it. Marty snuck off and bought me a pizza from Pizza Hut and some donuts from Krispy Kreme. I did manage to eat a bit of pizza.
At once point, I freaked out when a small bit of watery blood suddenly gushed from my nose. Dr. Kraus said this was normal, and it only happened that once. I took one Percocet for the neck soreness, and this was really only because I was getting the feeling the nurses wanted me to take a pain reliever periodically. So again, pain was pretty much non-existent. Sleep? Forget it. Hard to do in a strange place, with nurses taking your vitals every hour. The next morning (today), Dr. Kraus came in around 7 a.m. with a nurse, and they removed the plastic cup and cleaned the surgical site. The surgical site looked great, and he removed my drainage tube. He talked with us about what to expect, and how to care for the area. After a bit of small talk, he left to prepare for Chris' surgery. I had my IV removed, got up, got dressed, and we left. I had a little bit of drainage on the way home, just had to dab it up with a paper towel. We got back home around 11 a.m. and filled my prescriptions for an antibiotic and some Percocet. I'm feeling great. I got home, cleaned up a bit, ate some lunch, gave Emily her birthday presents. Took two Percocet tablets, and here I am, blogging! My ear feels really weird and numb, almost as if it's gonna fall off, lol. Seriously! The area around it feels fine though, I can't stop feeling the bump where my Envoy Esteem is sitting under my skin. I'm very pleased with the way things went, and even more pleased that I'm not in any pain. Chris should be coming out of his own surgery right about now, and I'm anxious to see how he did.
I can't say enough about Dr. Kraus and his team - they were absolutely wonderful! I knew I was in good hands.
So now, the real wait begins. Two whole months before my Esteem is activated. Even though they implanted my worse ear, hearing with just one ear is more difficult than I thought it would be. I can't hear my phone ringing most of the time. It's gonna take some getting used to. I hear some normal clicking and popping in the implanted ear occasionally, but cannot hear anything else at all.
If you have any questions, I will be more than glad to try to answer them! I'm gonna post the pre-op pics, and then I'm taking a nap!! =)
- Location:Home
- Mood: relieved
- Music:Silence!
Part One -
My pre-op appointment was Tuesday at 9:30. We left home about 5 a.m., drove to Greensboro, ate breakfast at The Cracker Barrel, and then went in to The Ear Center. We first met with Dr. Kraus, the doctor who would be performing my surgery. Dr. Kraus just has a wonderful personality, and was really great about explaining everything in full detail as well as answer any questions to your satisfaction. First he told me about his medical career and Envoy Medical Corporation (the people who sponsor the study). Then we discussed the Envoy Esteem implant and operation. He explained why I was able to re-enter the study. Before, the requirement was a speech discrimination score of 60% and above. There was a lady in another state who scored 37% (I think), and Envoy sent her over to Germany to be implanted (this device has already been approved over there). After her device was activated, she went from 37% to 58%. That may not sound like much, but it is a huge difference. Because this lady's implantation was successful, Envoy and the FDA was asked to allow other patients with low scores to be implanted. The doctors were given permission to implant 8 to 10 people in the country, with scores between 40 and 60%. Dr. Kraus and his staff knew I should qualify, and that's why they wanted me back in. Again, I scored 52% in each ear, so I definitely fit into this category.
Dr. Kraus showed us a skull model with the Esteem device attached, as well as both the Esteem I and Esteem II processors. He also showed us an x-ray image of the device. He hopes the device will get full approval by the end of 2009. We discussed the surgery in full detail, along with the risks. We also discussed how other patients felt about their implants, and any complications that might have resulted for others. There were a couple of temporary minor side effects such as vertigo, slight facial paralysis, taste disturbance, a feeling of fullness in the implanted ear - but all of these side effects went away within a couple of weeks. After Dr. Kraus was finished discussing the surgery and answering our questions, we then went in to the consultation room where we went over the study form/contract. We had to go over all the pages, and then sign them. During this time, I met my engineer from Envoy, I think his name was Martin, but I'm not sure. This gentleman would be in the operating room with Dr. Kraus, and he will be the one to program my device and help with any issues I may have.
Next, I went to the testing booth with Stephanie to finish up my tests. We did a few more tests without my hearing aids, and then with my hearing aids. Of course I was paranoid and had to be reassured that my results would have no effect on my getting the implant. One of the tests was was pretty interesting for me. This consisted of simply sitting in front of a speaker, testing with one ear at a time. Some background noise would be presented, sounding much like the noisy chatter of a busy restaurant. Then a woman would speak a sentence over this noise, and I had to repeat whatever parts I heard. It's interesting because I didn't realize just how much I depended on lip reading until I actually had to repeat someone without being able to read their lips. It's harder than you'd think! So we finished up the testing, did a little more paperwork about my medical history, and then we were all done. I was given instructions for surgery the next morning, given directions to the Surgical Center, and then we left.
Marty and I went to the mall (because we had to buy a 'Bride Of Chucky' doll for my daughter's birthday (she turned 6 today). Yes..you read that right..Bride Of Chucky! Then we found a hotel, relaxed for a bit, then went out to The Olive Garden for dinner. I LOVE me some Olive Garden! Went back to the hotel, took a shower, scrubbed extra hard behind my ears (lol), and went to bed.
And that ends Part One!
At the hotel, trying not to think too much about my surgery the next day!
- Location:Greensboro
- Mood:
anxious - Music:"Creep" Stone Temple Pilots
I'm already climbing the walls.
Even now, my heart is racing as if I took a dose of cold meds, lol. I don't know why I am so nervous right now. I guess it's because of the way things went last time. Even though I've been reassured that tomorrow's testing has no dangers of failing or doing poorly, I'm still in denial. I'm a little irritable around everyone right now. It doesn't help that yesterday was a really emotional day for several reasons, and just a short while ago, I found out that my high school best friend's 10 year old son passed away after battling a life-long illness (Rest in peace, Dalton, you're in God's arms now. To all my friends here at home, please pray for Stephanie, Randy, Kamdin, and Zhoie.)
I want to thank everyone who has been supporting me in my journey so far. Whether it was through prayer, well wishes, help with my family, notes and emails, or other gestures - it really means a lot to me, and you'll never know how much those moments help. Thank you!
I will try to post an update sometime Friday, assuming I'm up to it. Until then! =)
- Mood: scared
Amy just called from the Ear Center. My pregnancy test came back negative (not that there was any concern, lol) and my CT scan came back normal. The biggest news? Amy said that based on the results of my CT scan, Dr. Kraus wants to implant my right ear!! This is the best news I could have hoped for, I am extremely excited now.
Right now, I consider my right ear pretty useless. I cannot use it when talking on the phone, and the hearing in this ear is not strong enough to be reliable. Hearing aids just do not help much at all, especially with this ear. It's gonna seem so weird to actually be able to hear with my right ear. I can't even imagine being able to pick up the phone and actually manage to carry on a conversation with that ear. How strange would it feel to have my worse ear suddenly become my better ear? I am also very relieved to know that I don't have to risk the hearing in my better ear, because there's obviously a chance something could go wrong during the surgery or with the Envoy Esteem itself. If I am happy with the results of my implant, I can always have the left ear implanted in the future.
Maybe my last experience happened for a reason. Maybe it just wasn't the right time for me. Back in 2005, two days before my scheduled surgery, Dr. Kraus had told me that my right ear did not qualify and we'd have to do the left ear instead. I was pretty disappointed, and very nervous, but I was gonna go ahead with it and allow my better ear to be implanted. Now, I'm glad things have worked out the way they did. I should have put a little more trust and faith in God, and believed that things will work out for the best, one way or the other.
So...seven more days to go! My worries about the surgery and anesthesia don't seem so significant now. I am so ready!! On another note, I received a check in the mail from Envoy today. Last week, I turned in my receipts for food and gas expenses, and Envoy promptly reimbursed me. This check is gonna be cashed and put up for next week. You know it'll come in handy when Greensboro is nearly a four hour drive and gas has hit over $4 a gallon! ;)
- Mood: excited
- Music:"Miracle Drug" U2
I'm not so nervous now about my final testing on Tuesday. Chris (my "surgery buddy" who will have his own surgery the day after mine) tells me that at this point, there's no "pass or fail," just testing with my hearing aids to compare with the test results of my implant. That is such a huge relief. Now I just need to work past my nervousness with the surgery and anesthesia. My mom gets pretty violently sick from the anesthesia, let's hope I'm not so much like her in that regard...
We'll be staying at a hotel after we finish up everything on Tuesday. Haven't decided where I want to stay just yet. We have to be at the Surgical Center at 6:30 a.m. Wednesday morning, and surgery is at 7:30 a.m.
I wonder which ear I will have implanted? I really hope it will be my right ear, that would be awesome to finally be able to rely on this ear, which is definitely the worst of the two. It's kinda funny...my mom and I would always laugh because whenever I'm walking anywhere, I always have to be on the right side. I never really understood why, just thought it was a weird quirk of mine. Well, last week it suddenly just hit me out of the blue that I insist on being on the right because my better ear would then be closest to the person beside of me. It was just a kick to finally understand this habit after years and years of doing so. So back on topic..I really hope they will implant my right ear, but I won't know until Tuesday at some point.
This is the Envoy implant:
To get an idea of how big the device is:
This is the first generation remote:
This is a scan from the Envoy Esteem brochure. It shows what the latest remote looks like, as well as the new processor and other components:
Marty and I drove to Greensboro for my appointment. The first stop was to pick up a prescription for a pregnancy test, and have this done across the street. Nooo...I didn't have any worries, this is just to rule out pregnancy because of the impending surgery. When I went into the Ear Center office to get the prescription, I was terrified for some reason. My heart literally felt like it was gonna explode. We went across the street, did the test, and left. We had some time to kill afterward, so we went to Moe's Southwest Grill for lunch and drove around town. Then we went back to the Ear Center for my 1:00 appointment.
Amy took us to the back, went into a few details about what we would be doing, and then had us watch a 15 minute video about the clinical study. To those who are familiar with the study, this video doesn't offer much new information. It basically discussed details that can be found in the study outline and consent forms. After the video, she took me into another room to begin testing. This part of the testing was new to me, I hadn't done anything like it the last time I was in the study. She sat me in front of a computer screen, placed the ear pieces in my ears, set the volume to a comfortable level for me, and gave me the little push-button cord. Oh yeah, she also put some kinda thing on my forehead used for some kinda measurements, don't ask me what that was, lol. She left me in the room, and I was to follow instructions as prompted by the computer test. The first test was a bone conduction/pure tone audiometry test, the kind where you must press a button each time you hear a series of beeps and tones. We all know this one well. This lasted a few minutes, and then I began another test. In this one, about nine pictures were presented on the computer screen. A voice would say, "Show me the ___, " and I would have to touch the picture that was requested. The volume would increase and decrease, and I had to make a guess even when I could no longer hear the voice. The nine or so pictures never changed. This was a little tricky. After that part was completed, I was then shown a series of pictures in groups of four. These four pictures were of things that rhymed: ring, king, wing, sing. The voice would ask me "Show me the king." The pictures may change to: hat, bat, cat, rat, or any other rhyming words and I would again choose the correct picture by touching the screen. This time, the voice stayed at one consistent volume instead or increasing or decreasing. This test was pretty easy for me, I probably only got one or two wrong. Once I finished this part, the testing was complete. I have to say that I really liked this method of testing. It helps to be alone in a quiet room without any distractions.
Amy gathered the test results and brought me back into the first room where Marty was waiting (sleeping!). She told me that I was now accepted into the study! I think the testing I just completed was pretty much the initial testing to see if you pass all the requirements and qualify to be in the study. I passed this with no problems. I had to fill out a survey about how well I hear in various situations with and without my hearing aids. Then we talked a bit about the study. I need to make one correction: when I said in a recent journal entry that speech discrimination scores needed for participation had been lowered to 40-60%, apparently this is only for a handful of people, and I was very lucky to have been asked if I wanted to participate. It sounds like the Greensboro office has to close this part of the study by mid June, which is why this is a bit of a whirlwind to get me through all the requirements. I have no idea when they begin the next phases, but Marty did say he was told that next year they will begin offering a second implant to those in the study. We found out I would be getting the new improved processor, and we don't know for sure, but hopefully the first battery replacement will be paid by Envoy.
So, on to the most intimidating part of the day. By far!
Amy told me that I now had to do some more testing in the booth, with her. We started out by doing the standard bone conduction test where I pressed the button each time I heard the tones. (By the way, ALL testing was done without my hearing aids.) Next came the big test that I failed back in 2005. Talk about scared! This test consists of listening to a man on a cd telling me to "Say the word ___." Doesn't sound so bad, right? After all, I did great on the computer test a few minutes ago. But there's just something about this particular voice that was VERY hard for me to understand. We started off with my left ear (my better ear by far) and I had the same reaction I did the last time I heard the voice - uh oh, this isn't good, I can't understand him. I immediately began to get fidgety, and I summoned every once of calm I could muster. I repeated the words I knew, made guesses for the words I wasn't quite sure about, and probably made some very off the wall guesses on the words I had no clue about. It seemed like I had trouble on almost all the words, and I was fighting not to give up. Amy tried to keep my confidence up with a small nod whenever I got a word correct, but I still avoided looking at her. She reminded me to stay calm and do the best I could. Then, finally, at one point Amy looked at me and said "You can relax, you're in! You did it!" Talk about a wave of emotions!! Here I swore I would not get emotional and I was fighting back tears. We completed the left side, and then started the right ear. I was pretty sure there was no way I was gonna pass with my right ear. After that, we did another bone conduction test, and then we went back to the main room. She told me I had passed, I was in, I had gotten through the worst of it, and there were no more worries. THIS IS HAPPENING!! I somehow managed to score about a 52% with both ears on that darned dreaded test, so both ears qualify! IF everything goes well, I can have my right (worse) ear implanted. If not, I'll have to do the left ear for now. But who cares?! I made it through!
Amy told me also that Dr. Kraus wanted me back in the study, so it's just an amazing feeling, and I am incredibly thankful that I was given another opportunity when so many others might not have had the chance at this time. These people at the Ear Center are just amazing, they really go the extra mile to help you. I'd hate to be in their shoes the day I get activated, I am sure to be a blubbery mess! :D Anyway, after finishing up with Amy and discussing few details, we were sent off to have my CT scan done. This is just to make sure the implant will fit properly. That was a piece of cake. And then..that's all she wrote. We went home.
I am so very excited, and then at the same time, I have my guard up a bit. I'm just chalking it up to the saying "Don't count your chickens before they hatch." Now that I've gotten through all the hurdles, its clear skies ahead, and the surgery is definitely on. We go back on the 17th to do the testing with my hearing aids as well as to meet with my surgeon, Dr. Kraus. My surgery is scheduled for the 18th at 7:30 am. The clock is ticking!
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