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!

Tears

I'm watching my little cousins tonight while their parents are at a dinner. Ellee, who is four, has the same hearing loss that I do, though hers is worse. It's genetic. Fortunately, hers was diagnosed early and she received a cochlear implant when she was a year old. We're both "bionic girls."


Tonight, as I was putting her to bed, I started crying because it hit me. All of the miserable crap I went through as a kid -always feeling left out, the lost/confused feeling, never enjoying sleep-overs, etc-she will never experience! And if I am blessed with babies someday, they will never have to experience that either, even if the inherit my defective genes. :) Thanks be to God!

If Ellee or I had been born 50 years earlier, we would have had no choice but to sign, go to deaf schools, live like a deaf person. Despite the deaf community's claim that being deaf is great because you have friends everywhere, that life would be so isolating. Until I was 25, I had never met a single Deaf person. I can't imagine going to boarding schools and not being able to communicate with my family or people at my church. What a lonely life that would be! As much as I hate still being single and not having kids yet, I am so thankful that amazing technology like this exists now. It makes the wait a little easier knowing that the Esteem will make me a better wife and mom someday and if my kids are deaf, they can get implants early. I pray that my kids have normal hearing, but if they don't, God has graciously and miraculously allowed us to live in a time where technology is available to help us. He is so good!

Balance

For the first time in my life, I have balanced hearing.  Even with two hearing aids, my right ear was always  much, much better than my left.  Since my first activation, my left ear has been much, much better than my right (even with a hearing aid in that ear).  To be honest, I've been overwhelmed.  I think people are disappointed when they ask me about it because I'm not acting excited or bubbly.  I am excited, but right now, I'm just overwhelmed by sound, change, and gratitude.  The whole experience has been different the second time around.  It's been much more difficult and stressful, but it's definitely worth it.  Again, I'm realizing how much I missed out on before and how much easier life is.  I've been trying to make a list of things I've noticed since having both implants working.  I know I'll leave things out, but here are some highlights:

1) Birds!!!!  Tuesday morning, I walked outside to get in the car and heard THREE different kinds of birds chirping!  All the chirps were different!  I'm used to hearing pigeons (I wish I could program the implant so I don't hear those!) and other birds with deep, low sounds, but the sweet high pitched chirps are new.  It took me a while to figure out what I was hearing.  Then yesterday, getting out of the car at work, my carpool buddy said, "Hey do you hear that?" and it was a different bird.  I didn't know what the sound was until she told me. :)

2) My stove beeps when I turn on a burner.  I've lived here for four years and I use the stove A LOT but I never knew that. :)

3) Praise team practice was tough.  It's very challenging to sing in a group when something changes with hearing.  I'll get used to it, but now that I hear everyone's voices so distinctly within the group, it's challenging to hear the music.  It was pretty funny, though, that I kept asking my dad to turn the volume of the music down because it was WAY too loud....and it was as low as he could set it.  :)  I am so very thankful that, even with the severe loss I've had all my life, I was able to hear music and pitch and sing. That is simply God being gracious.  It is a lot easier to match pitch now that I can hear myself inside my head.

4) I did not realize that you can still hear yourself singing when you're wearing ear buds.  With the Esteem, I hear my own voice inside my head, like people with normal hearing do.  Before, I couldn't hear myself until it came through my hearing aids...so I never knew I could hear myself with earplugs or ear buds.  Crazy!

5) At work on Thursday, I was washing my hands in the restroom and someone in another room said, "Hey, who's in there?" and I answered.  I didn't realize what happened until she said, "Jill?  You heard me??" :)  It's really nice to not have to lipread!

6) Also at work, I heard a few 8th graders talking while their teacher was explaining some math concept so I shot them a dirty look.  Another 8th grader looked up and said, "Hey, I thought you were deaf."  HAHA!  That was priceless. :)

7) Sleeping is tough.  I'm having an alarm installed because all the noises are scaring me!  Turning the implant off is not an option for me because I need to be able to hear at night.  The safety concerns were a big part of why I wanted the Esteem.

8) I'm trying to learn to play my guitar again.  The first time I strummed a chord, I cried.  I've always been fortunate that I can hear individual notes in a piano chord, but never could in a guitar chord. Now I can. :)

9) I LOVE bubble baths!  Being able to listen to music in the tub is fantastic!


I know that, soon, I won't be overwhelmed and will be excited.  Until then, be patient with me. :)  This is an amazing experience and I am so very grateful, but it's a lot to adjust to as well.  It's still surreal in a lot of ways.

Activation, take two!

Yesterday was "activation" for my second Esteem.  It went really well!  I was super nervous because Megan (my MUCH loved audiologist) is no longer working with my surgeon.  I was really pleased with the new audiologist, though.  I was mostly nervous because there was a technician from Envoy (the company that makes the Esteem) at the appointment.  I had heard lots and lots of horror stories about the techs.  Several other implantees were really unhappy because the technicians would only set new activations with factory settings.  I knew I would NOT like that at all and really appreciated Megan's individualized approach.  Fortunately, I had a great experience!!  The programs are individualized and I felt like I was listened to.  My right Esteem (2nd one) has the exactly same settings as my left.  Being bilateral is really new for me because I've always had a 20 decibel difference in my ears.  It will be an adjustment, for sure!!

 My goal in writing this blog is multifold: First and foremost, I have an opportunity to let everyone know about this miracle that God has allowed me to experience.  I want to glorify Him!  The other main reason is that I was so grateful for other Esteem blogs before my first surgery.  It's a very new procedure and I don't know anyone else (in "real life") who has been implanted.  It's nice to read about other peoples' experiences.  For this reason, my mom took LOTS of pictures yesterday so I could show y'all what activation is like!  I realize a lot of you reading this are friends and family of mine (and I'm so very thankful for all your sweet encouragement through all of this!) and many of you have probably never had a full hearing test or seen any of this before.  Hopefully it's interesting and not boring! :)  The pictures are out of order because Blogger is not cooperating!

Bone conduction test:
I have (had?) sensorineural hearing loss, meaning that my hearing loss is caused by dead or improperly formed hair cell nerves in the cochlea.  The other type of hearing loss is bone conduction.  To test bone conduction, they put a little headpiece against the bones on the skull and transmit sound through it.  Obviously, this is kind of unpleasant when you have a relatively new implant in your skull! :)  You can't see the headpiece here but that's what the wires are for.  This is the first test they did yesterday because I had already turned the implant on.  At my first activation, Megan activated the device ASAP (or I might have gone insane!) :)

To transmit the new or updated programs to the implant, I have to hold the personal programmer (remote) against the implant.  In this picture, Arineh is updating the programs in my left (first) implant.

Because my implant site has been super tender this time, it HURT to hold the personal programmer against it for a long time.  The headband is supposed to keep it in place but it didn't work because my head still hurts!

Testing the device!!  The audiologist has to do some tests on the sensor and driver of the Esteem and find the maximum gains.  During these tests, I have to hold the remote against the implant.



Intense focus here.  Actually, it just hurt a lot and I was in pain, but focus sounds better, right? :)  (Arineh, I hope it's ok that I put this picture of you!)

Pure tone test (aka "beep test").  This is like a school screening test but much more thorough.  The audiologist plays beeps or warble tones at various frequencies (500, 750, 1000, 1500, 3000, 4000, 6000 and 8000 hz) and records the lowest decibel at which I can hear them.  The thing in my hand is what I press when I hear a sound.  The wire coming out of my ear is an earbud-type device that transmits the sound.  Now that I can hear in both ears, I have to turn off the implant that is not being tested.  I HATE THIS TEST!!!!!!!!!!!!!!!  Any of you who know me realize I am VERY analytical and I HATE to fail at anything so, of course, I hate hearing tests.  The first few beeps are okay but then I imagine beeps because I know I *should* be hearing them.  It's stressful...seriously.  I hear beeps for hours afterward. :) This is also when the audiologists tests for Speech Reception Threshold (SRT) and Word Recognition/Speech Discrimination.  For SRT, the audiologist reads a list of two-syllable words (airplane, cowboy, hot dog, sidewalk) and gradually reduces the sound until I can't understand it anymore.  For Word Rec, they play this obnoxious CD of a man with an annoying voice saying, "Say the word_____" and a bunch of one-syllable words.  One syllable words are a deaf person's worst nightmare!  We usually miss out on beginning and/or ending sounds of them.  For instance, dark/darn (that's one I missed back in August).  The vowel sound stands out in words but those consonants are tricky!

On the way to the appointment, we stopped at Target in Lakewood.  Actually, I found it without navigation or directions...amazing.  Anyhow, I wanted to get a headband because they didn't have one at my first activation.  Unfortunately, the pink one wasn't tight enough to hold the remote against the implant. :(

The actual testing takes place in a soundproof booth, which you can kinda see through the glass.  I sit in there and the audiologist sits in front of the computer.  The headpiece over the computer is for the audiologist, so she can hear me and talk to me during the test.  The computer on the right is specifically for the Esteem.

Two remotes!

After I took the headband off :)  My mom loved this picture.

Great results!  The column on the left is with my Esteem, middle is baseline and right is with a hearing aid (all my right ear).  SRT of 25 dB or lower is normal...so I'm pretty darn close.  I find it hilarious that my uncomfortable level with the Esteem is LESS than my MOST comfortable level before. :)  The discrimination in quiet scores are that annoying "say the word____" test.  Normal conversation is approximately 50 dB.  At that level, I understood 80% of words.  With a hearing aid, I only got 60%.  I do not have test results at that level with no amplification but it would have been bad. :)  At 85 dB (which is VERY loud, a little louder than a piano), I got 96% of words with no amplification.  That's painful with the Esteem. :)  At 70 dB, with a hearing aid I got 96% of words and with the Esteem, 100%.  With my first Esteem, my speech discrimination scores improved over time, as I learned how to understand words through the Esteem.  It will probably do that again.

This is an audiogram.  The Os are my hearing before surgery with no hearing aid.  The E's are with the Esteem.  The X-axis (horizontal) is frequency (which correlates with pitch).  The Y axis is decibel (volume).  Anything 25 dB or lower (0-25, which is higher on the graph) is normal.   It does not show much improvement at the lower frequencies (250, 500, 1K) because my ear is still full of fluid.  If there's fluid in the ear, it's kind of like being underwater or at high elevation.  Once it's healed, I will see improvement in those frequencies.  The gray blob shows where most speech sounds lie.  Right now, there's not much improvement over my hearing aid on this test, but this was my "good" ear.  I had decent hearing with a hearing aid in this ear when it was tested in a sound booth.  Unfortunately, there's no test to measure quality! :)  I'll have to do another post about that soon!

Week 9

Tomorrow will be 9 weeks post surgery. Yesterday, my tymp was STILL flat. The amazing thing, though, is that I can still hear with a flat tympanogram and an unprogrammed implant. God is so faithful. I really can't imagine what things will be like when both ears are healed and programmed. :) I started a nasal steroid tonight and will start an oral steroid tomorrow. That should be fun...:-\ hopefully, that will help with the ear pressure and I can get the implant programmed on Monday!

Random observations:
1) Even with no programming and tons of pressure in the ear, the implant already sounds better than a hearing aid.

2) The stress relief was almost instant when the implant came on. I still can't believe that I was tense my entire life and never knew it was because I couldn't hear. I thought it was just me.

3) paper is LOUD!

4) Sleeping is difficult with sound in both ears

5) Rosco woke me up at 12:30 a few nights ago. I listened and sure enough, a car alarm was going off. I heard it from my bedroom upstairs!

6) Three years ago, on Valentines Day, my date asked if my hearing loss was genetic. When I told him it was, he replied, "By the time you have kids, there will be some new technology and it won't even matter." I thought he was crazy...but he was right. Yes, God is faithful and I am beyond thankful for this miracle.

God Works in Mysterious Ways?!?!

If you read last night's post, you are well aware that yesterday was  f.r.u.s.t.r.a.t.i.n.g!  Today is 8 weeks which was worst case scenario for activation, but hearing it might be four more weeks...that was rough.  I didn't sleep much last night and when I did sleep, I  had crazy dreams.  This morning, I was exhausted and stressed.  I carpool to work and my carpool buddy was driving, which is nice because I am TOTALLY deaf in my right ear.  Think about that for a minute.  You can't lipread if you're driving and you can't hear anything in that ear.  It's loads of fun...  Anyway, she was driving but I was still having a hard time understanding her because you also can't lipread when someone else is driving since they have to look at the road.  I reached into my purse for my remote to turn up the volume on my left (first) implant except I was so tired and frustrated, I accidentally put it on the new, unactivated implant and turned it on.  Seriously.  I didn't even realize it at first!

The reason activation is after healing is because the sound quality is bad when there's fluid in the middle ear.  Based on my tympanogram (ear pressure test), there is still a whole lot of fluid in my middle ear.  It's basically like having swimmers ear the entire time.  Of course, you can't hear well when there's fluid in the ear.  Unlike a hearing aid, the Esteem does use the ear drum as a microphone (which is how normal people hear), so if it can't move, it's bad.  So the sound isn't great, but it works.  There's very little clarity, but the volume helps tremendously.  In fact, it sounds just like a hearing aid.  That's right, hearing aids sound so awful that they make implantees wait practically forever to get activated so it won't sound that bad.  They really do sound awful.  (Note: I know I have lots of family/friends with deaf/HOH kids.  This is exactly why implants are GREAT! Do the surgeries!  It is worth it!)  Even when the implant is not programmed at all and my ear is full of fluid, it sounds just as good as my hearing aids ever did.

Of course, I called my surgeon's office right away.  His office manager  (love her!) told me it wouldn't do any damage to leave it on and was amazed that it sounded good.  I was actually using that ear to talk on the phone.  Before this morning, we were debating whether to do oral steroids to aid in healing or not.  After talking with her and getting a voicemail from the surgeon (love him!), the plan is...

1) Keep the implant on (like I was going to turn it off even if they told me to...)
2) Start a nasal steroid ASAP.
3) Check tymps (ear pressure) on Tuesday.  If they're good, keep using nasal steroid.
4) If tymps are NOT good on Tuesday, start oral steroids.  It's a short round, just five days.
5) HOPEFULLY, the pressure will subside and I can have "activation" on the 18th.  Of course, it's not really activation since I accidentally activated myself, but the audiologist can actually program the device.

I can't believe how good this sounds without any programming.  It's not personalized and it's poor quality, but overall, it's decent.  Having sound in two ears helps a lot.  Now, I can't wait for it to be working at capacity!!  Turning on the implant was really an accident (I swear!), but I kinda think it was God's answer to my tearful prayers all night last night. :)

Funny story: My surgeon is wonderful!  When he left a voicemail today, he told me to do try the nasal steroid then said, "I don't know any details about your personal life, but if there is absolutely no chance that you could be pregnant, try the oral steroids, too."  I laughed so hard!  Obviously, I am okay to take oral steroids. :) 

Brutal Honesty

I've tried to be optimistic despite all the difficulties this time around, but right now, I'm just going to be honest. Tomorrow is 8 weeks since surgery. The 8 week mark is the "absolute latest" healing takes place, but my ear is still not healed at all. I had to cancel another activation appointment today and don't know when my ear will be healed enough to activate. And I'm frustrated. It's not because things aren't happening like unplanned or the other one healed so quickly (like everyone seems to think). It's because I'm exhausted and stressed out and lonely. I go to work and struggle all day. I can't understand my students and, as wonderful as my coworkers are, I'm completely isolated because it's so frustrating to not be able to hear anyone. Then I come home to an empty house every night. Keys not forget the miserable failures my last several dates have been...that doesn't help the loneliness. On top of that, I'm furious with myself for feeling like this. I KNOW that God works everything for good and that this will all be worth it. It's stupid to be so frustrated. I get that, really. I'm trying so so hard to stay positive...but tonight, it's not working.