Surgery #4

Pre-surgery selfie!

As disheartening as the results of this surgery are for me, the surgery itself went really well.  I knew I was pretty emotionally fragile so I wanted to go by myself for all the pre-op stuff.  Thank God (seriously!), I had the same pre-op nurses and anesthesiologist as the last surgery.  They are all WONDERFUL.  One nurse and the anesthesiologist have been with me in all four surgeries.  Having them there made this ordeal so much easier.  I remember before my first surgery, the anesthesiologist (who said to call him Chris) came in with a cup of coffee, joking around and put me at ease.  He's been like that for every surgery.  You should know that surgery doesn't scare me.  I don't get nervous and I'm usually pretty entertaining, especially once they start the happy juice.  This time was different because I was very subdued (though not nervous.  Trusting my doctor completely takes away the nerves), but Lois (the nurse) and Chris were wonderful.  I remember at one point saying, through tears, "I know you're trying to make me laugh and I really appreciate it even though I can't laugh right now!"  It makes all the difference to have such sweet people there.  

I sincerely hope that NO ONE ever has to undergo this ordeal, but just in case, here's the rundown.  Dr.  Shohet said to take two pain pills before surgery because I did not want to be under general anesthesia or even sedated.  I took those and life suddenly didn't seem so bad. :)  We got to the surgery center at 8:30, filled out the paperwork and waited an hour before they called me back.  Surgery was scheduled for 9:30 but didn't actually start until 11:00.  The nurses, Lois and Karen, were wonderful.  They kept bringing me warm blankets and checking in on me.  Somehow, I stayed calm.  I really don't know how.  After an hour or so of waiting, Dr. Shohet came in and that's when I started crying.  He is SO wonderful and patient and sweet.  I know he really did not want to put me through this.  He explained EVERYTHING to me and we discussed anesthesia.  Even though I know I really didn't have a say in the matter, he made me feel like I did (If you read this, thanks for that, Dr. Shohet!) He stayed and talked with me for quite a while.  After that, Chris came in and was also wonderful.  He was also so genuinely apologetic and caring.  That REALLY makes a difference.  I didn't feel like a number or a problem; they made me feel like they care about ME and hurt with me.  They even let me take a box of tissues into surgery. :)  Chris wheeled me into the OR himself and talked the whole time, which seriously helped. Once we got in the OR, he took me phone and snapped some pics.  See what I mean?  He's awesome.  

I was sedated for part of the surgery (and Chris said I could have a 6 month supply of Versed to get me through until my implant is on again.  I'm still waiting on that…) but I remember some of it.  My face was covered (unfortunately) so I couldn't see anything, but everyone in the OR was super sweet and they talked to me the whole time.  Of course, as soon as the battery was removed, I couldn't understand anything.  That…well, that sucked.  I do remember Dr. Shohet telling me that there was no infection and explaining sutures and someone asking me about what grade I teach.  I was really surprised that the tugging and stitching wasn't uncomfortable.  I could feel it, but it wasn't uncomfortable at all.  

I started crying again when people started asking me questions after surgery and I couldn't understand them.  It was just so heartbreaking.  My post-op nurse was wonderful, too.  She offered to sit with me and talk, but I really wanted to be alone so she let me be.  Dr. Shohet came to check on me and his reaction was so kind it makes me cry just thinking about it.  He told me how everything went and asked if I was in pain.  When I said no, he held his hand to his chest and said, "Just here?"  It was so strangely comforting to know that he understands.  Later, my mom told me that he told her, "You and I can't possibly understand what she's going through right now."  He also told her that he can see the difference in my personality from when we started this journey.  Right now, having my feelings validated is very important.  Knowing that my surgeon CARES and tries to understand is touching.  Chris came back to see me again as well and was also so caring.  Because I'm such a relational person, I have to feel connected to people who are taking care of me.  Those two made it clear that they care about me, not just as a case, but as a person…it wasn't just my skin or the implant, but ME that they were concerned about.  That speaks volumes.  When Mom and I were leaving the surgery center, they were both standing outside and stopped to talk to us.  I don't remember what they said, but I do remember thinking, "As awful as this situation is and despite how horrible I feel right now, I am so blessed by these two men."  Prospective Esteem patients, you could not be in better hands than those of Jack Shohet.

The drive home was miserable.  Stop and go traffic is HORRIBLE with that stupid ear bubble.  We finally made it home and Mom has stayed with me since then.  I have felt really good overall, but I got really sick during the night last night.  It's only been one day and I'm already bored out of my mind and desperate for contact with people.  I feel good overall.  I'm swollen and sore, but good.  I miss hearing so much.  When I got my first Esteem (the one that is still on), I couldn't believe how clear everything sounded.  Now, I can't believe I was impressed by one!  If anything, this horrific 6 month ordeal will make me even more grateful for this miracle.  

My sweet friend Philip sent these beautiful yellow flowers on Wednesday.  How sweet is that?!?!  I was so touched!!  Envoy Medical's CEO sent the other flowers today.  When I got my first implant, I was NOT impressed with Envoy.  The company was horrible to deal with.  Over the past two years, they've made some major changes and it's a completely different feel.  The CEO sent me flowers!  What kind of company does that??  Once again, it is so nice to be cared for as a person.  I don't feel like a number or random case.  One of Envoy's employees (Amy) is also dually implanted and she has been in touch with me a lot through this.  I think all of my Esteem friends are horrified at the thought that this could happen to any of us.  Amy has been in touch with Envoy's audiologists and they're trying to come up with some kind of short-term solution to get me some kind of help.  Conventional hearing aids are not an option because the bones of the middle ear are not connected, meaning sound cannot get to the cochlea.  BAHAs aren't strong enough for me to enhance the bone conduction hearing that I still have.  There are a few other options, apparently, and Envoy is trying to figure out something.  I'm very thankful for their concern!

One day down…way too many to go!

Rambling

Surgery is a few hours away. I'm not planning to post this until later but I need to write all of this. My support network has been amazing through all of this. You don't know how much every single text or message has meant. I'm not up to taking about it and please don't try to hug me because I will fall apart. But I appreciate written communication so so so much. That will be my primary means if socialization for 6 long, dark months. This is literally the second time that this has ever happened. No one I know has seen someone go through this situation. It's "like" some other hard things in life, but it's also very unique. There's no way I can make anyone understand but let me try to clarify a few things. 

The implant works. It works PERFECTLY. I'm not in pain. There is no sign of infection. The problem is that the skin around it broke. I think it's because my glasses constantly rub on it. My surgeon thinks the skin is damaged from when the implant moved before and because I'm thin skinned (he means literally, I think figuratively). Because he's brilliant and I trust him, I'm doing what he says. Listen to this part, though: if I wanted to, I could have the device completely explanted. They could reconstruct my middle ear and I could wear a hearing aid. But I'm not doing that. The Esteem is WORTH six months of pure hell and another surgery to reattach the battery. It's absolutely worth it. 

I'm not anxious about surgery. That's NOTHING. In fact, I'm planning to be awake and not even sedated. The horror here is six months of total deafness in my good ear. It's going back to the way life was before this miracle. Now that I know what life can be like, I can't imagine how painful it will be to go back to that. 

So will I get through this? Yep. Don't have any other option. Believe me, I've tried to find it. I'd like to be out in a medically induced coma until I can hear again but I don't think the dr would agree to that. This isn't going to kill me. But that's what makes it hard. For some reason (mostly what the deaf community says), people think hearing loss is no big deal. We can still function. It's not like being blind or losing a limb. And you're right...it's not. But it's horrible. The worst part of hearing loss is isolation. And WE DO NOT CHOOSE TO ISOLATE OURSELVES. I'm going to punch the next person who says that. Whether we stay home or force ourselves to socialize, we are alone. With other people, we are completely lost and confused all the time. We don't fit in at all and we know it. But despite all of that, life goes oh. We don't get a reprieve. I was talking with another Esteem recipient about this and she pointed our that if I had been in an accident or had a surgery with a long recovery, people would be lining up to help and I would not have to face normal life while I recovered. Exactly. In this case, that doesn't happen. My friends and family are wonderful. They want to help. But they can't. They can be there for me but sometimes that's harder. It's just so isolating. I have to keep living life during this time. It's just hard.

My favorite thing people say is, "It's just six months."  JUST?!?!? Cut off your arm for six months. It's JUST six months. Of course that includes the entire summer...the time when I am most thankful for hearing. I also love, "it's just one ear. The other one works." You've got two arms, too. Why would you need both? 

I get that only one other person on the planet has gone through this so no one can relate. My Esteem friends are fantastic. They're horrified. They get it. They know what it's like to be deaf and get hearing and CAN imagine how awful it would be to lose it. I know everyone wants to help and I appreciate it. I really really do. So here are ways to help a deaf person. 

1) Communicate. I won't be good in groups or public settings but I would LOVE for you to come to my house and hang out. A text can totally change my day. It doesn't have to be much. Just say hi or ask how I'm doing or tell me something funny. Keep me in the loop. I was great at being deaf before but now I know what I'm missing. So keep me updated. 

2) Be patient. Constantly asking everyone to repeat themselves sucks WAY more than having to repeat yourself. Trust me. If I'm clingy, give me grace. I feel so lost in crowds that I find someone I know and cling. I know I do it but I can't figure out a better solution. Be patient. 

3) Lighten up. I want to laugh. I told my students that they could have a candy every time they made me laugh. I NEED that. 

4) Don't disappear. You don't know what to say? That's fine. Say hi. Tell me how your day went. I don't need something profound. I just want to be included. Stay in my life even though I'm not myself for a very long 6 months. That's what all deaf people want. We just want to fit in and feel included but our disability prevents that. 

I'm going to need a lot of support in the next 6 months. I don't need help with everyday tasks because my body is fine but my emotions aren't. I need people, really. That's how you can help. 

Thoughts

Writing a blog post a few hours before my greatest nightmare comes true is probably not wise...but here goes. 

The last week has been the worst of my life and the bad part hasn't even started. That sounds dramatic and I've been told that I'm bring dramatic. It that's the case, I think I have that right. You see, I was deaf for 26 years. I didn't know any different and I made the best of it. I thought hearing aids gave me a normal life and I was thankful for that. But I was so, so wrong. 

When I got my first implant and realized how much I had been missing, I realized just how difficult life was when I was deaf. I was isolated and withdrawn. I missed out on so many things. If I try to name them all, I'll fall apart. I am SO THANKFUL for this miracle. Other than Jesus, it's the greatest thing that has ever happened to me. 

I've made it my mission to glorify God and praise Him for this. I know that "every good and perfect gift" comes from Him. He blessed me beyond measure with this and I praised Him. 

But now He's taking it away. I don't believe that God causes bad things to happen but I do know that He could stop this. But He's not. It feels so cruel. So unjust. Really, it's just downright mean. Why let me taste of how incredible life can be just to force me back to the way it was before? It's not right and I am hurting.

But God is good. He is good when this life is unbearably hard. He is good when I've cried until I can't cry any longer. He is good when the fear of the isolation that I know is coming (I've done this before, remember?) is so overwhelming I can't breathe. He is good. I don't understand. I want answers. But I know that my Father is good. 

"The Lord gave, and the Lord has taken away; blessed be the name of the Lord.” (Job 1:21 ESV)

Terrible, Horrible, No Good, Very Bad Day

That's what today has been.  I'm writing this to avoid telling the story hundreds of times because I have been crying for the past 8 hours and can't handle telling the story over and over.

This morning, when I woke up, my hair was really matted and there was a lot of blood on my pillow.  I realized that the skin broke over my right implant (the one I just had surgery on in December).  It's a teeny tiny hole right now, but it has been bleeding a tiny bit all day.  Of course, I was really scared, so I called Dr. Shohet.  He called back right away and we've been emailing most of the day.  The short version is this: I'm having surgery this week to remove the battery on the implant to allow the skin to heal.  I will be completely deaf in that ear for 6 months, at which point Dr. Shohet will attach the battery again in another very minor surgery.

I'm a wreck.  I know that God is faithful and nothing surprises him.  I also know how horrible it is to be deaf.  DO NOT LISTEN to the deaf community.  It SUCKS.  The loneliness is overwhelming.  Now that I know how amazing this world is when I can hear, the thought of going back to no hearing is pretty horrifying.  No, it's unbelievably horrifying.  I was at work when I got the news and my parents had to come pick me up because I couldn't drive.  It's that bad.  I turn into this horrible, anxious mess.  I can't do anything because it's MISERABLE to be around people and feel so lost all the time.  I will still have hearing in one ear, fortunately, but this is the exact situation I was in for 10 weeks after my second surgery.  I hated it.  Furthermore, I am really struggling with the recent pattern in my life of being given amazing blessings then having them (very painfully) ripped away. Seeing my dreams shattered over and over is painful.   I covet your prayers.

I am very thankful for my parents stepping in to rescue me, but hate being such a bother to them.  I'm 28...I should have a husband to take care of me by now, but I can't seem to find a man who wants me.  Going through things like this alone is very, very challenging.

I am very thankful for the sweet texts and phone calls from the friends I've told already. Really, it means so much that you care.  Please forgive me if I did not respond or did not answer the phone.  I'm not up to talking but I am so blessed by your concern.

Another positive note is this: The Esteem is amazing.  When this is done, I will have had FOUR surgeries for one ear within 2 years.  And I don't hesitate at all to have them.  My ONLY concern when I talked to Dr. Shohet today was how soon the battery could be reattached.  Of course, I have the option of having the whole device explanted, my middle ear reconstructed and going back to a hearing aid...but there's no way I would choose to do that now.  For those of you considering the Esteem, do it.  It's absolutely worth a few bumps in the road.

I know that all of this will work out and that God is good and that He works everything for good...but today, I'm really hurting.

Surgery #3

Today marks 3 weeks since my revision surgery. It has NOT been nearly as easy as I had expected, but I do feel much better! The pain was better as soon as I woke up...but that might be thanks to the anesthesiologist. :)

Surgery time was scheduled for 12:15, but the wonderful MaryKay at Dr. Shohet's office pulled some strings and got it bumped up to 10:00, so Mom, Daddy and I drove to LA the night before. We got to the hotel at midnight and headed to the surgery center early. I was very very thankful to have the same pre-op nurse as the last two times and the same anesthesiologist. This was BY FAR my best experience with the surgery center. They did all the pre-op stuff ad we sat around joking until Dr. Shohet arrived. When he got there, he asked to see it and was pretty surprised at how awful it looked. He confirmed that the device was mobile and that it would have come through the skin soon had we not done surgery. Seriously. As soon as he saw it, he wrote a script for pain meds. It was bad. I simply adore Dr. Shohet!

Surgery went great. The picture is from Dr. Shohet's phone. Basically, they opened up the incision from the implant surgery and moved the device back in place. Then, he sewed a stitch around it and to my skull. Pleasant, right?:) He never disconnected the device or even turned it off. My fear was that he would have to remove the implant. I was very relieved that he did not!:)

I woke up super easily this time (Thanks, Dr. Vigil, for light anesthesia!) and felt good. My post-op nurse was wonderful and gave me all the juice I wanted. We left be surgery center, went to Starbucks and drove home. I felt good!

The first week was rough. I really did not feel well and I had not expected that. On Sunday night, my incision started bleeding. I was scared and called my mom and Dr. Shohet right away. Turns out, the space where the implant had been filled with blood that had to get out somehow. It "leaked" for 2 weeks. Yuck. Dr. Shohet and MaryKay called every day to check on me. They are so sweet!!!

Thirteen days after surgery, I headed to OK to see my sweet babies. I was pretty tired but had little pain. Right now, I'm in NC. I know a few people here and have met lots. One of my very favorite people on this planet lives here and we've been hanging out with his (fantastic!) friends. That might not seem like a big deal but I am meeting new people constantly and loving it!!!!!!! I never thought that would be possible for me. Instead of clinging to the one person I know, I'm actually talking to people and enjoying it. Our God is so good and gracious!!! His gift of healing is incredible. 

Before:

Surgery:

Right after surgery:

After surgery necessity:

Big difference, 2 days before surgery and 1 day after:

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!