That's what the Esteem has provided for me - a whole new world! You can thank me later for having that song stuck in your head now - haha! :) I've started so many blog posts and never seem to finish them because I just don't know how to put all of this into words. There have been some pretty major developments in the last few weeks, so I guess I should share!
1) BIG NEWS: Anthem Blue Cross covered my 2nd Esteem at MORE THAN 100%! There were MAJOR issues with the surgery center and insurance this time around. The surgery center neglected to fill out the right paperwork then called and demanded $19,400 the night before my surgery. Seriously. But, y'all, God is so good. I had that money saved from the reimbursement the first time. Normally, I don't have money like that sitting in my savings account, but He provided. Anyway, when the surgery center filed with insurance they billed for the correct total ($39,000 - SERIOUSLY!) but did NOT use the code for the Esteem device, just for the surgery. Needless to say, they did not get reimbursed for much....so neither did I. About a week ago, I got word that they corrected their claim to include the code for the Esteem and Anthem reimbursed the surgery center $21,700 for the device. Now I just have to get reimbursed from them...which should be fun, considering they still haven't reimbursed me from the first surgery. I am also still fighting Anthem to cover the surgeon's portion of the surgery, which they did the first time, but not the second. Good times, y'all! As stressful as all of this is, BlueCross covered TWO Esteem surgeries in California! That is groundbreaking!
*Note: I am being VERY open with dollar figures here, which makes me nervous, but there are several potential Esteem patients reading this who need to know details. If you are a patient and want the codes used, please email me and I will gladly share everything with you! When I had my first surgery, God provided every step of the way, even when it seemed impossible to me to come up with $30,000. He IS our provider and sometimes He uses insurance companies. :)*
2) PR: I got a call from my surgeon's office (His office manager is one of my favorite people in the whole world!!!!!) asking if I would be willing to be involved in some publicity for Envoy, the company that makes the Esteem. Yeah, me. You can stop laughing now. :) I am SO not a good speaker and I don't particularly enjoy talking to grown-ups, but God has performed a miracle in my life and if I am given an opportunity to glorify Him, I have to take it. I also want to get the word out about the Esteem. It still overwhelms me to think of this incredible change in my life and how it all came about because a girl I went to high school with (Hi, Tori!) watched Good Morning, America one day. If I can share this incredible opportunity with other people, I will. The same day that I got confirmation that Anthem covered the device, a representative from Envoy called and now I'm just waiting to hear from the PR firm. I have no idea what this will entail and I'm kinda scared to death, but I pray that God will use me to glorify Him and to open doors for other people to experience this.
3) New experiences: After a year of hearing, you'd think that I would run out of new experiences, but that has NOT been the case at all! Just today, a group from church was working on our float for the Memorial Day parade and one of the guys was joking around with kids in the backyard of the house while I was standing in the garage. I couldn't understand every word he said, but I got a lot of it. I didn't think anything of it until a lady said, "Even Jill heard that!" Little moments like that still amaze me. I even went on a motorcycle ride two weeks ago! That would never have been fun for me with hearing aids. The wind noise would have been unbearable if I'd kept hearing aids in and nothing was fun if I didn't have my hearing aids in. We rode a motorcycle up to Sequoia National Park and found a great little meadow there. Standing in this meadow, in the middle of God's beautiful creation, listening to the water in little streams...our God is so good! Now I'm crying again! :)
4) Healing: My ear is still not healed. I haven't tested my tympanograms since activation, but I can tell there's improvement because I don't hear fluid in my ear. I can tell it's not completely healed because the Esteem still whistles a lot. It is so weird to hear whistling inside my head. Unfortunately, this whistling usually starts about 4:30 a.m. It's a very convenient alarm clock, I suppose. :) I will go back for hearing testing this summer and that should provide more information about the healing process. It's completely normal to heal slowly. Even with the diminished quality and the whistling, though, it's 100 times better than a hearing aid ever was.
I know I say it over and over again, but this has been life-changing. I am a completely different person than I was a year ago. Life is just so much easier when I don't have to struggle to communicate!
Saturday, May 25, 2013
Wednesday, May 1, 2013
Concerts and Ramblings
It feels odd posting on here now because having two working ears seems normal now. I'm still amazed every day and hope that I never lose that, but it feels natural to hear now. I have had a few "firsts" lately to share! I LOVE music and am very thankful that I can experience music in a whole new way now. I can hear intricate details and distinguish instruments. I can ENJOY music that I used to hate because now I can hear the sounds instead of a roar. It is nothing short of wonderful!! Since my first Esteem was activated, I've wanted to attend a love concert but never had a chance until last week. I was pretty nervous that it would be too loud or I'd be hypersensitive, but at TWO different shows in very different venues, I didn't even have to use my remote! It was soooo much fun to really enjoy a concert. The company wasn't so bad either. ;). After almost a year with one Esteem, I can't believe how different so many experiences are. It's surpassed my greatest dreams.
Lately, I've been thinking about growing up without hearing. I was really fortunate to be able to function with hearing aids, but now I get how awful they are and how much I really did have to struggle. High school would have been a completely different experience if I'd been able to hear. Part of me wishes I'd never had to go through all of the hard things that I did. However, I get to experience a miracle every day. Those of you who know me know that I worry about everything and over analyze everything. It's no fun and it's NOT ok for a Christian. It's always been a struggle for me. This Esteem journey, though, has changed a lot. God made me able to hear. He did that! I never dreamed that would happen but it did! Knowing that helps me trust in other situations. If God can heal me, He can take care of everything else. Being able to see (well, hear haha!) God work like that is so worth every painful hearing related experience I've ever had. He is amazing. I am constantly in awe.
Lately, I've been thinking about growing up without hearing. I was really fortunate to be able to function with hearing aids, but now I get how awful they are and how much I really did have to struggle. High school would have been a completely different experience if I'd been able to hear. Part of me wishes I'd never had to go through all of the hard things that I did. However, I get to experience a miracle every day. Those of you who know me know that I worry about everything and over analyze everything. It's no fun and it's NOT ok for a Christian. It's always been a struggle for me. This Esteem journey, though, has changed a lot. God made me able to hear. He did that! I never dreamed that would happen but it did! Knowing that helps me trust in other situations. If God can heal me, He can take care of everything else. Being able to see (well, hear haha!) God work like that is so worth every painful hearing related experience I've ever had. He is amazing. I am constantly in awe.
Wednesday, April 24, 2013
Group work
It's been a while since I've updated this!! Things are going GREAT with both Esteems. The right ear is healing verrrrrrry slowly. It still hurts a lot and some days it whistles, but it is so worth it. I'm amazed EVERY SINGLE DAY. I'll go back for a hearing test this summer. Hopefully by then, the numbers will reflect the incredible difference. Of course, audiograms cant begin to show how much better life is now.
I'm almost done with my special Ed credential now (thank you, Jesus!). I've done most of the work online but am having to take an on campus class right now. It's my first with two working ears. :). Last week was the first class and we had to work in groups the entire time. Pre-Esteem, I despised working in groups. It was so hard to figure out who was talking and then lip read and make sense of everything. But this time, it was easy!!!! A few minutes into class, a guy said, "Ok, we're the fun group. This is our group for the rest of the class!" I GOT TO BE IN THE FUN GROUP!!! It seems silly, but when you're deaf, you can't be fun in a group. It's too hard! For the first time since I started school, I got to have fun doing a group project and I wasn't the weird kid. I cried on the way home. God is so good to me!
I'm almost done with my special Ed credential now (thank you, Jesus!). I've done most of the work online but am having to take an on campus class right now. It's my first with two working ears. :). Last week was the first class and we had to work in groups the entire time. Pre-Esteem, I despised working in groups. It was so hard to figure out who was talking and then lip read and make sense of everything. But this time, it was easy!!!! A few minutes into class, a guy said, "Ok, we're the fun group. This is our group for the rest of the class!" I GOT TO BE IN THE FUN GROUP!!! It seems silly, but when you're deaf, you can't be fun in a group. It's too hard! For the first time since I started school, I got to have fun doing a group project and I wasn't the weird kid. I cried on the way home. God is so good to me!
Sunday, April 7, 2013
Esteem-iversary
Friday was my first "Esteem-iversary." I feel like a broken record, but I am still amazed by how much this device has improved my life. It doesn't seem possible that it's been a year. I'm still discovering new sounds and learning how to hear. I guess that will be a very long process!:)
Ironically, I've had the worst hearing week in a while this week! My right ear is just refusing to heal. The fluid that will not dissipate gets worse at certain times, usually when I'm sick. Orange blossoms are in full bloom here so my ear is pretty messed up! I feel like I'm under water. The worst part is that the Esteem whistles A LOT. It is freaky to hear whistling inside my head!!!:) I've found that it usually whistles most in the morning, after I've been laying down, so I'm sleeping on four pillows. :) I've been turning that ear down at night, too, which helps. Fortunately, I haven't been nauseated or dizzy too much. I can handle a little whistling if I'm not sick! And hey, at least I can hear the whistling!
Words can't express how grateful I am for this miracle. Our God is able to do so much more than we could ever imagine!!!!!!
Ironically, I've had the worst hearing week in a while this week! My right ear is just refusing to heal. The fluid that will not dissipate gets worse at certain times, usually when I'm sick. Orange blossoms are in full bloom here so my ear is pretty messed up! I feel like I'm under water. The worst part is that the Esteem whistles A LOT. It is freaky to hear whistling inside my head!!!:) I've found that it usually whistles most in the morning, after I've been laying down, so I'm sleeping on four pillows. :) I've been turning that ear down at night, too, which helps. Fortunately, I haven't been nauseated or dizzy too much. I can handle a little whistling if I'm not sick! And hey, at least I can hear the whistling!
Words can't express how grateful I am for this miracle. Our God is able to do so much more than we could ever imagine!!!!!!
Tuesday, March 12, 2013
3 Month Update
Tomorrow will be 3 months since my second surgery. Recovery has been brutal, but absolutely worth it!!!!! I checked my tymp (ear pressure) at school today (thank you, Nurse Sandi!) and it's finally showing a little movement. The tympanogram measures movement of the ear drum. If the ear canal is filled with fluid, the ear drum doesn't move. Since the Esteem does not have a microphone, but uses the ear drum as a microphone (like normal ears do!), it's kind of an issue when the ear drum doesn't move. It can't carry the sound waves because they are vibrations. Now that my ear drum is moving a little, my hearing will get better. Of course, I think it's wonderful right now...and it's nowhere near healed yet!
The best part of the second Esteem is that it just feels normal. With the first one, I noticed every little sound and it was amazing. I was a little nervous that this one would be disappointing because I wouldn't notice every single sound. I thought it would be less exciting. It definitely is less exciting, but it's amazing how natural it feels. I don't have to think to hear. The stress relief that comes with that is the single best thing about the Esteem. If you're not deaf, you don't understand that and I am glad you don't! :) If you are, though, trust me: the Esteem makes life so much easier!
I love music. I enjoy singing and playing the piano. With my hearing loss, everyone was amazed that I can sing. I'm not very good, but I can carry a tune. That is absolutely God's grace. It's also probably a little bit of my stubborn personality. I do not like to be told that I can't do something so I've kind of built my life around doing things that require hearing. That being said, I sing in the praise team at church. We have an electric piano. I hate that thing. Before my Esteem (and after the second surgery when my right ear was totally deaf), I had to stand right in front of the monitor. With an electric piano, I can't feel vibrations in the floor and it is very, very difficult to stay on pitch and in time when you can't hear the music. I usually stood right in front of the monitor, turned it all the way up and put my hand on it so I could feel vibrations through it. Last week, the monitor started smoking and is no longer useable. We've had one praise team practice and one Sunday morning service without monitors and I did just fine!!!!!! We have drums on stage now, too, which helps with timing, but makes it harder to hear the electric piano...but even with that, I could hear the music! It's such a relief to be able to focus on worship instead of obsessing over hearing the music.
The past few weeks have been really stressful and I've been emotional...but the Esteem helps so much! Despite all of the exterior stress, I don't have to feel isolated and like I'm missing so much. I am thankful every minute of every day!
The best part of the second Esteem is that it just feels normal. With the first one, I noticed every little sound and it was amazing. I was a little nervous that this one would be disappointing because I wouldn't notice every single sound. I thought it would be less exciting. It definitely is less exciting, but it's amazing how natural it feels. I don't have to think to hear. The stress relief that comes with that is the single best thing about the Esteem. If you're not deaf, you don't understand that and I am glad you don't! :) If you are, though, trust me: the Esteem makes life so much easier!
I love music. I enjoy singing and playing the piano. With my hearing loss, everyone was amazed that I can sing. I'm not very good, but I can carry a tune. That is absolutely God's grace. It's also probably a little bit of my stubborn personality. I do not like to be told that I can't do something so I've kind of built my life around doing things that require hearing. That being said, I sing in the praise team at church. We have an electric piano. I hate that thing. Before my Esteem (and after the second surgery when my right ear was totally deaf), I had to stand right in front of the monitor. With an electric piano, I can't feel vibrations in the floor and it is very, very difficult to stay on pitch and in time when you can't hear the music. I usually stood right in front of the monitor, turned it all the way up and put my hand on it so I could feel vibrations through it. Last week, the monitor started smoking and is no longer useable. We've had one praise team practice and one Sunday morning service without monitors and I did just fine!!!!!! We have drums on stage now, too, which helps with timing, but makes it harder to hear the electric piano...but even with that, I could hear the music! It's such a relief to be able to focus on worship instead of obsessing over hearing the music.
The past few weeks have been really stressful and I've been emotional...but the Esteem helps so much! Despite all of the exterior stress, I don't have to feel isolated and like I'm missing so much. I am thankful every minute of every day!
Monday, March 4, 2013
2 weeks and it feels normal
Well, hearing feels normal. The implant site still hurts! I still try to take out my hearing aids at night but adapting to this implant has been really easy! I'm amazed at how much easier everything is. I have to do a lot of reading assessments at work (I teach special ed) that require me to hear the exact words kids say. It was rough before, since many common reading mistakes are common hearing mistakes, too! Long and short vowels, for instance, or beginning and ending sounds or inflectional endings. Today I have several reading assessments and only had to ask one student to repeat herself. That is a tremendous blessing!!!
The other thing that's tons easier is singing at church. It's hard to hear so many other voices (especially if someone is off key) but I don't have to think about how I'm singing so much. I can actually hear myself inside my head, which is very advantageous. With hearing aids, you can't hear yourself inside your head. I am really enjoying that. It's kind if eerie to me. Singing along to the radio is a lot more fun. :) I missed church last night because I was sick, but apparently the sound system blew up. I think that was God intervening. The monitor (that is now fried) buzzed constantly and it was driving me insane now that I can hear it. :)
I've had a cold for the last week. Colds are never fun, but they are worse with the Esteem. In November, I got really dizzy and nauseated. Fortunately, I haven't done that this time. The excess fluid in the ear makes my Esteem whistle, though. That is NOT cool at night. I have a remote but I rarely use it and it stays downstairs so I couldn't turn the implant off last night. Teaching on 3 hours of sleep isn't so great...but what a great reason to be awake!
The other thing that's tons easier is singing at church. It's hard to hear so many other voices (especially if someone is off key) but I don't have to think about how I'm singing so much. I can actually hear myself inside my head, which is very advantageous. With hearing aids, you can't hear yourself inside your head. I am really enjoying that. It's kind if eerie to me. Singing along to the radio is a lot more fun. :) I missed church last night because I was sick, but apparently the sound system blew up. I think that was God intervening. The monitor (that is now fried) buzzed constantly and it was driving me insane now that I can hear it. :)
I've had a cold for the last week. Colds are never fun, but they are worse with the Esteem. In November, I got really dizzy and nauseated. Fortunately, I haven't done that this time. The excess fluid in the ear makes my Esteem whistle, though. That is NOT cool at night. I have a remote but I rarely use it and it stays downstairs so I couldn't turn the implant off last night. Teaching on 3 hours of sleep isn't so great...but what a great reason to be awake!
Sunday, February 24, 2013
Questions
I'm part of an Esteem patients group on Facebook. Before my surgery, it was really helpful to hear other stories. Lately, though, it's been flooded with complainers and skeptics. In the last few weeks, a few questions have come up that I'd like to address here.
1) What was the "breaking point" that made you willing to invest thousands of dollars and risk your residual hearing on a procedure that has no guarantees?
First off, NO medical procedure is without risk. Of course it's risky to break apart the tiny, fragile bones in the middle ear and drill into the skull. It's not pleasant, either. I knew that going into it. Second, the Esteem is a middle ear implant, not a cochlear implant. In surgery, the hair cell nerves are NOT removed like in cochlear implantation. Instead, the incus and stapes are separated. If the Esteem doesn't work for some reason, the ossicular chain (incus, stapes and malleus) can be reattached with ah prosthesis. Hearing doesn't return to pre-implant levels, but there is still some hearing. With cochlear implantation, the hair cell nerves are removed, which destroys all residual hearing. It's a big difference. That was one of the questions I had before surgery.
I think what bothered me about this question is the implication that all of us implantees were sitting around refusing to live life while we anxiously waited for some miraculous discovery. That's not the case. I was determined to not let my hearing loss run my life (which is the other BIG issue I have with deaf community, btw). I never reached a "breaking point." I never knew what I was missing. When I heard about the Esteem, it was kind of like, "Hey, that sounds cool! Wait a second...do I want to know what hearing is like???" I'm SO glad I did it but it wasn't because I had some nervous breakdown or couldn't cope. I did the best I could with hearing aids and when something better came along, I jumped at the chance. It's that simple. I also had nothing to lose in my left ear. The hearing was so bad that a hearing aid just gave me a little bit of balance and orientation. That's why that ear was implanted first. As for the thousands of dollars, my insurance did cover it, but this procedure is worth 100 times the cost!!!! How can you put a price on this?!?!
2) Your hearing wasn't that bad. Why would you risk surgery? You aren't getting great gains anyway. You would be fine with a high powered hearing aid.
This question was in regards to my right ear, the one that was just implanted and is still healing. It will take months before the fluid finally drains and we can see the real gains I get in this ear. The person who posed the question apparently can't read because I wrote that...but anyway, my issue here is that the Esteem gives more than volume. My right ear did OK with hearing aids in a soundproof booth and sound going straight into my hearing aid. In real life? Not so much. Of course, I didn't know what normal hearing was like, so I thought it was great. After having the left one implanted, though, I realized what a difference in quality the Esteem was compared to hearing aids. After having one, I definitely wanted the other. Even if hearing aids offered decent quality (which they don't), they don't help if the smoke detector goes off at night or in water or while running. The Esteem is a whole new lifestyle...and one I like a lot!
1) What was the "breaking point" that made you willing to invest thousands of dollars and risk your residual hearing on a procedure that has no guarantees?
First off, NO medical procedure is without risk. Of course it's risky to break apart the tiny, fragile bones in the middle ear and drill into the skull. It's not pleasant, either. I knew that going into it. Second, the Esteem is a middle ear implant, not a cochlear implant. In surgery, the hair cell nerves are NOT removed like in cochlear implantation. Instead, the incus and stapes are separated. If the Esteem doesn't work for some reason, the ossicular chain (incus, stapes and malleus) can be reattached with ah prosthesis. Hearing doesn't return to pre-implant levels, but there is still some hearing. With cochlear implantation, the hair cell nerves are removed, which destroys all residual hearing. It's a big difference. That was one of the questions I had before surgery.
I think what bothered me about this question is the implication that all of us implantees were sitting around refusing to live life while we anxiously waited for some miraculous discovery. That's not the case. I was determined to not let my hearing loss run my life (which is the other BIG issue I have with deaf community, btw). I never reached a "breaking point." I never knew what I was missing. When I heard about the Esteem, it was kind of like, "Hey, that sounds cool! Wait a second...do I want to know what hearing is like???" I'm SO glad I did it but it wasn't because I had some nervous breakdown or couldn't cope. I did the best I could with hearing aids and when something better came along, I jumped at the chance. It's that simple. I also had nothing to lose in my left ear. The hearing was so bad that a hearing aid just gave me a little bit of balance and orientation. That's why that ear was implanted first. As for the thousands of dollars, my insurance did cover it, but this procedure is worth 100 times the cost!!!! How can you put a price on this?!?!
2) Your hearing wasn't that bad. Why would you risk surgery? You aren't getting great gains anyway. You would be fine with a high powered hearing aid.
This question was in regards to my right ear, the one that was just implanted and is still healing. It will take months before the fluid finally drains and we can see the real gains I get in this ear. The person who posed the question apparently can't read because I wrote that...but anyway, my issue here is that the Esteem gives more than volume. My right ear did OK with hearing aids in a soundproof booth and sound going straight into my hearing aid. In real life? Not so much. Of course, I didn't know what normal hearing was like, so I thought it was great. After having the left one implanted, though, I realized what a difference in quality the Esteem was compared to hearing aids. After having one, I definitely wanted the other. Even if hearing aids offered decent quality (which they don't), they don't help if the smoke detector goes off at night or in water or while running. The Esteem is a whole new lifestyle...and one I like a lot!
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