Revision

Friday morning, I had a minor procedure to relocate my right Esteem.  Admittedly, it's hurt quite a bit more than I expected, but I'm doing very well.  The whole surgery experience was great this time!  After my surgery last December, I was pretty nervous about dealing with the surgery center again, but they actually filed the right paperwork with insurance this time and all of the nurses were wonderful.  I even had the same pre-op nurse and anesthesiologist that I had for both of my other surgeries.  I begged both of them to NOT let Dr. S remove the implant, even if it was infected or doing damage.  That was my big fear! When Dr. Shohet arrived at the surgery center, he was pretty shocked at how bad the skin around the implant looked.  See, the implant and somehow come loose inside my head and moved to the back of my neck. It should be just behind and above my ear.  He confirmed that it was "mobile" and needed to be moved.  In fact, he said if we had waited much longer, the skin would have broken.  I can't even imagine how awful that would have been! They gave me the option of being sedated instead of using general anesthesia, but Dr. S wasn't sure what he would have to do, so we went with general.  Fortunately, they used a much lighter dose this time and I woke up really easily.  The post-op nurse was wonderful and gave me 3 cans of apple juice so I didn't pass out this time either! :)  She also gave me plenty of pain medicine via IV, unlike the awful nurse I had last year who refused to give me pain meds or juice.

In surgery, Dr. Shohet did not even disconnect the wires on the implant.  He didn't have to drill out more space in my skull either.  Basically, he just opened up the same incision and moved the sound processor back to where it was originally, but this time he stitched it to the bone.  I didn't know that was possible, but apparently it is. :)  He did say there was no sign of infection but some of the fluid was cloudy so he took a sample just to make sure.  The device stayed on the entire time and I woke up hearing out of it.  We came home that day and I felt really good.  Yesterday, I was pretty groggy and sore but the pain meds are helping a lot.  I am only taking Tylenol for pain today because I have to go direct the church choir in a few minutes, but I feel pretty ok.  Interestingly enough, this feels a lot like my first surgery.  My throat hurts, my neck is sore and I'm really swollen, but I'm so grateful that I can hear.  It's absolutely worth it!  As you can see, my head already looks MUCH better.

In recovery

                

Minor Complicatiom

As always, I want to be brutally honest on here. I hope that this blog is (first off) a testimony to the goodness and power of God and (second) a source for prospective patients to get real information about the Esteem experience. Y'all know I LOVE my implants and an BEYOND thankful for them. However, I've had some problems with my second implant. Surgery was rough, recovery was no fun and the ear pressure is STILL not normal. You've read that. What most people don't know is that the pain from the surgery never went away. It's been almost a year so I was starting to get concerned. I also noticed it seems to have moved in my head (the sound processor, not the middle ear components.) I mentioned that last week when I went for a hearing test and, long story short, I'm going to have a MINOR revision surgery next Friday to reposition the device. It should be quick with very little recovery. I can keep the device on the entire time and the dr won't even adjust anything in my ear, just the sound processor. Obviously, I'm not looking forward to it, but I'm thankful that Dr. Shohet and the wonderful MaryKay were able to schedule surgery quickly and that this should stop the pain. My biggest fear was that my body is rejecting the device (which it kinda is) and it would have to be removed. Thankfully, that is not happening. God is so good! I would appreciate your prayers on Friday the 13th!

This is what the implant site looks like right now. It should not protrude so much or be red and swollen. To compare, this is my left implant:

In EXCITING news, Envoy contacted me a while back and asked me to speak at a seminar for prospective patients. It was a blast!! What a joy to share this journey and see others who may get to experience this as well!

Bone conduction testing..so fun!

Sometimes I Forget

Sometimes I forget just how blessed I really am.  Being able to hear is my normal now, which is an incredible gift...but I never want to take it for granted.  The past few weeks have been REALLY stressful for me, with a LOT going on in my life that is very unpleasant and it looks like things are going to get a lot worse before they better.  It's so easy to dwell on the negatives and the stress and wonder why God doesn't just intervene.  Then TWICE in the last week, I went to parties with big groups of total strangers and enjoyed it.  That is amazing!  God is so good and has blessed beyond my wildest dreams.  Two years ago, I had never even heard of the Esteem.  I was very much a loner who only wanted to be around a few select people because it was safe.  I could never have imagined willingly subjecting myself to big groups of strangers much less having fun in that situation.  Really, y'all, that was my worst nightmare before.  At one of the parties this week, I hardly saw the ONE person I actually knew before the party.  While I would love to have spent more time with people who are dear to me, it brings me to tears to think that I was able to go into a room of total strangers and be comfortable introducing myself and making small talk.  Small talk is a BIG DEAL when you're deaf.  It's so hard to talk to people and try to figure out new speech patterns and accents.  Then last night, I was comfortable being the center of attention a few times.  REALLY!  God is so good and He leads us.  I need to remember that now, when things don't seem so rosy and sunshiny.  He IS faithful, He HAS blessed and He will continue to do so!

Latest and Greatest

This is loooong overdue, but I went for a follow-up audiogram/Esteem testing back in August and got excellent results!!!  I was very, very nervous that I would need a revision surgery to remove scar tissue because of the feedback I was getting at higher volume levels.  Thankfully, the sensor and driver are both working extremely well and there is no evidence of scar tissue!  I was also anxious to see my tympanogram.  For some reason, my right ear did not heal well and my tympanogram (movement of the ear drum) was flat for months.  As of August, it was still reduced, but not flat.  A flat tymp means that the eardrum is not moving at all.  A reduced tymp means that it's moving some, but not like it should.  Even with a reduced tymp, however, my hearing results were INCREDIBLE!!!!  On the pure tone test (the "beep" test), I was at normal levels through 2000Hz  - amazing.  My left ear, which healed quickly and easily, is not testing as well now, mostly due to a program change.  In order to reduce the feedback in the right ear, the audiologist changed my main program.  It's very complicated and technical (though if you are an Esteem patient and want the details, email me), but I'm not hearing quite as well in my left ear now.  The trade-off is that I don't get constant whistling in my right ear, so it's definitely worth it. 

Pure tone (beep) testing is great and all, but what I really care about is understanding speech.  Normal conversation is about 50 decibels.  With my hearing aids, I could hear ZERO words at 50 dB in my left ear and about 60% in my right.  Not great.  Remember, those numbers are in a soundproof booth as well...not real life, especially for a teacher.  Now, at 50 dB, I can understand 88% of words in my left ear and 92% in my right.  That is nothing short of amazing.  If you look at the graph below, the pickle shape is where speech sounds fall.  In my right ear, I'm getting most of them now.  I still miss /s/ and /th/ and a few others, but it's an INCREDIBLE improvement over my pre-implant levels, as you can see.  God is so faithful.

Healer

I've loved the song Healer for a long time. I absolutely believe that God is Jehovah Jireh - the God who heals. Experiencing that in my own life, though, brings a whole new meaning to the song. Today, I sang that in church AND played the guitar. Before my surgeries, I couldn't play the guitar. My guitar sat in my room for years. Now, thanks to my new ears and a great guitar teacher, I am able to stand up in church and proclaim that God IS my healer. He is so good!

I also noticed today that I can hear the pages in our worship binder turning. I suppose that means my right ear is FINALLY healing!:) Actually, I think flying several times over the last few weeks helped a lot. The feedback is greatly reduced and I can leave it on volume 2 at night now. For several weeks, I had to turn it to 0 at night. This healing has been a long time coming, but it's worth it! 

I'm finally going back for more hearing tests on Friday. I'm very nervous, as always. (Megan, if you're reading this, I MISS YOU!!!) The new audiologist is good, too, and very sweet. It's just always scary to see the actual numbers. I know my quality of life is dramatically improved but I want the numbers to show it, too. :). Fortunately, we have a super awesome day planned after the appointment, including a Willie Nelson concert. That's another thing that would not have been fun with hearing aids. Yes, God is good. If you think of it, please keep me in your prayers  on Friday. 

The Negative

The Esteem has been nothing short of miraculous.  It is wonderful and life changing and unbelievable.  I could ramble on for hours about the amazing ways it has affected me for good. 

But I want to be honest on here.  There are some definitely negatives to this experience.  Of course, the expense and the pain of surgery and the adjustment period are big downsides and I expected those.  There have been a few other negatives that I didn't expect, though.  Let's elaborate...

1) Sensory overload - With my first Esteem, I didn't get too much of this.  The adjustment was smooth and healing was fast.  The second go round has been a completely different story.  I think the ear is FINALLY starting to heal and suddenly things are LOUD.  I mean, REALLY LOUD.  I don't have the right Esteem on full volume but some days, it is so loud, I can barely stand it.  Being in Oklahoma this week has set my allergies off like crazy which means some days are good hearing days and some are bad.  Today was a good hearing day........but then we went to a BBQ.  Everything was so loud and overwhelming I wanted to crawl into a hole.  Unfortunately, I only knew a few people there, so I didn't have familiar voices and there was so much noise, I couldn't stand it.  I tried plugging my ears and turning my Esteems down, but nothing worked.  I got a horrible headache within 15 minutes and was actually nauseated just from the sensory overload.  It was NOT fun.  Obviously, when I think about it rationally, I'm amazed that I can hear all of those sounds and that anything can be loud enough for me to feel overwhelmed by sound, but at the time, it was miserable.  I didn't expect that, especially not 7 months after my second surgery.

2) Personality changes and social changes

This one is complicated.  I like studying personalities and knowing my "types."  Before my surgeries, I was VERY introverted.  I thought that was my personality, but it turns out that I found it draining to be around people because HEARING required so much energy.  Now, I'm an ENFJ.  Look it up.  It's totally me.  Adjusting to be extroverted has been really, really hard, though.  I really did not enjoy being around people before my Esteems so I have a very small circle of friends.  Now I want to be around people ALL.THE.TIME but it's hard to make more friends as a grown up.  I also have the social skills of a deaf person.  No offense intended, but it's really challenging to socialize when you can't hear...and it's really hard to overcome that later in life.  Part of being deaf is knowing that you don't really fit in.  You can't hear what people are saying, so you miss out on a lot of conversation and IT SUCKS.  It really was the worst part of hearing loss for me.  I had enough hearing to know I was missing out on something, but felt ostracized most of the time.  It's not because my friends were jerks; I just knew that I couldn't follow the conversations and was always left out.  That's not the case anymore, but learning to make new friendships and overcome the crazy fear of being excluded and rejected has been REALLY, REALLY challenging.  I definitely did not expect overwhelming loneliness to be part of this Esteem journey, but it is.  Before all of this, I needed alone time because people were exhausting.  Now, alone time is lonely and that is just no fun at all. 


Please know that the incredible joy this journey has brought me and the amazing freedom outweigh ALL the negative a million times over.  It's been surreal and magnificent...I read Fancy Nancy today and the adjectives are sticking apparently. :)  I do want to be 100% honest, though.  Lots of people read this from all over the world (which is crazy to me...but welcome, y'all!) and you need to know what you're in for with the Esteem.  It's not all sunshine and roses and smiley faces.  It is the most incredible experience I've ever had, though, and I thank God for this blessing every day.

Freedom

I started this post last week while I was in New York and have soooo much more to add from this week!  Let me preface it by saying this: I got the Esteem for ONE reason.  I wanted the freedom to do things without dealing with hearing aids (water parks, traveling with people, swimming, listening to music in the shower, etc.).  I did not expect to get better hearing than I had with hearing aids (though I did get that).  This post is all about how much freedom the Esteem has given me!

From last week:

As dramatic as it may sound, the Esteem has really given me a new lease on life.  It’s been a 14 months since my first activation and I feel like a completely different person in so many ways.  I’ve always been an active girl, ready to try new things and go new places, but only if I was with someone with whom I felt comfortable.  You see, when you can’t hear, it’s really scary to be somewhere new.  Think about all of the times you have to hear instructions or information.  When I was 14, my family went to Hawaii and we had a BLAST on a tour through the rain forest.  It was awesome, but I would never, ever, ever have been able to go on a group tour without someone I know.  I never wanted to go beach camping because water meant taking my hearing aids out and that was miserable.  The anxiety that comes with not hearing is pretty intense.  Of course, I never realized that was WHY I felt so uncomfortable and scared in new situations without a familiar person.  I thought that was just me. 

            Yesterday, I was in Niagara Falls.  I had been in New York for a conference so I decided to drive over and see the falls.  I had planned on going by myself (that wasn’t scary) but got talked into doing a tour…and LOVED IT.  I was on a bus with 20 people I had never met before and somehow became the social butterfly of the group.  Shocking, right?!?!  I also managed to get hit on by a 60-year-old…those of you who know my tendencies in dating are not surprised by that, I’m sure!  All of that aside, after a few hours of talking to these complete strangers and even posing for pictures with them (really!), it hit me.  I would never have been able to do that before.  What I thought was just a natural shyness was really due to my hearing loss.  My eyes are filling with tears as I type this.  What an amazing gift God has given me!

 Tonight:

This week, I've been in Oklahoma with my darling little Gavyn and Brynna.  I have to upload all of the pictures when I get home and I'll edit this post to show some, but here's the big news: We went to a water park for two days.  We stayed at the Great Wolf Lodge in Dallas, which has a huge indoor water park.  First off, we stayed in a hotel.  That is a crazy experience for me.  How do y'all sleep in hotels when you can't turn your ears down??  It is LOUD!  Next, I stayed in a hotel WITH PEOPLE and didn't have a panic attack once.  I hated being with people overnight when I wore hearing aids.  Once I took them out, I was completely cut off from everyone.  It was miserable.  Now, it's not. :)  Then...the water park!  We spent hours playing in the water, taking silly pictures of ourselves under water and going on water slides.  I got to do it...all of it...and enjoy it.  I wasn't freaking out about not hearing the kids or feeling left out of everything.  It was just normal and fun.  Normal and fun is kinda what I was hoping for. :)

While we were in Dallas, I finally got to meet Ashton, another Esteem recipient.  Believe it or not, I had never met another person who has an Esteem in real life.  I used to be part of a support group on Facebook but left that because of some nastiness toward other people.  It was awesome to finally meet someone!  Of course, Brynna had to be in on the action, so Ashton had more of an adventure than she'd planned for - haha! :)  

This week has been BUSY.  Of course, if you know me, you're not surprised. :)  I like to be on the go constantly.  The big hearing related fun has been our "camp outs."  Gavyn (6) & Brynna (4) want to have camp outs every night.  This was NOT an option when I wore hearing aids.  Needless to say, we've had a camp out every night this week. :)  We pile onto an air mattress or one of their (twin size...) beds and watch movies and giggle until they fall asleep.  I'm supposed to be "camping out" right now but I couldn't sleep.  No one tell Brynna I got out of bed.  She ordered me to stay in bed until she wakes up! :)  

Going to a water park or having sleep-overs with my niece and nephew may not seem like a big deal, but to me, this is HUGE.  I would have been so stressed by both of those things before my surgeries.  It really is the little things in life that matter and the Esteem gives me the freedom to enjoy those little things!