Wednesday, March 13, 2013

My Esteem Story: Covered by the Oprah Winfrey Network (OWN)

As many of you know, the Oprah Winfrey Network (OWN) did a story on me over a year ago for a show called Lost and Found. My story is about how I lost my hearing and was able to find it again after having been implanted with the Esteem. They interviewed my parents, Fraser, and I and also filmed my Esteem activation when I heard for the first time in years without hearing aids! 

After waiting patiently for over a year, I was notified that my episode would be airing on Saturday, March 16th at 7:00 PM EST (see the attached picture for a little sneak peak - I am pictured in the lower left hand corner).  The show runs 60 minutes and there are 3 segments. Mine will be the middle segment of the episode called "Life Changers".  The time is subject to change (it has already in the last 2 days) so you may want to check the schedule on the OWN website (http://www.oprah.com/own) on Saturday morning just to be sure. 

Hope you are able to tune in! :)

Wednesday, February 27, 2013

Some Potentially Exciting News

I just found out today that my employers will be switching health insurance providers and that as of March I will be covered by United Healthcare. This may not seem like a big deal to many BUT this provider has covered the Esteem surgery for some patients in some states! Which means, that there is a possibility that I could have my other ear implanted without having to be $45,000 in debt.

Although this surgery is a huge risk and I have had some hiccups along the way, I would not think twice before having my other ear implanted. Before, cost had been a concern, but if it is possible that insurance would cover this, it would be such a miracle!! Even if my hearing is just as good as it would be with hearing aids, not having to deal with hearing aids on a daily basis is what makes the whole process so incredibly worth it.

I love being able to have conversations with my husband in the dark, with the lights off, in the middle of the night when neither of us can sleep; I love being able to hear and feel safe at night, when I am driving, when I am swimming; I love the thought of being able to jump into a pool or the ocean without worrying that my hearing aid would get ruined; I love being able to hear while I am showering.

I am just beyond excited at this moment and pray that this will all work out!

Saturday, February 2, 2013

On! and back off...

All I have been able to think about for the last week is turning on my Esteem. On top of the fact that I am going crazy not being able to hear, I am dying with anticipation of what everything will sound like. Will it sound different? Will it sound better? Will it sound clearer? Will I like it? Will it be loud enough? Will I be able to understand people? Did this surgery make a difference?

I have kept my remote in my bedside table and I have found myself just staring at it at times. Wanting so badly to reach over and turn it on. Every time it caught my glance, I would get an adrenalin rush. There is something so appealingly frightening about the unknown, especially when you know how great the end result could potentially be. I felt like my future was sitting right in front of me and I just couldn't wait to see what was in store for me. 

Each night over the last week, I became weaker and weaker as I realized just how difficult it is to hear without my Esteem. I just couldn't take it anymore. So, I made the executive decision that I was going to turn it on, just for one quick second to, you know, to see what it sounds like. Dr. Murray, as well as other Esteem patients, had warned me that I may experience feedback and that things may not sound quite right at first. My ear was still healing and would continue to be healing over the next couple of months. Knowing this, I tried to keep my expectations at a minimum.

I placed the remote over the processor that lies underneath the skin behind my ear. I took a deep breath and with a click of a button, I heard a familiar beep. As I looked around the room searching for a signal of sound, I realized that I had been holding my breath. I let out a heavy sigh. Ok. It was definitely on. I couldn't help but smile. I could hear myself breath again! I could hear myself laugh with joy. I could hear saliva swishing in my mouth. Oh, how much I missed all of these bodily noises!

So many emotions came rushing through me in this moment. I felt like this giddy excited little kid on Christmas! It was like I had just been injected with the greatest drug and happiness was running through my veins. I started flipping through the different programs and volume levels to see if there was any feedback. There was none! Had everything healed? I wonder why they wanted me to keep this off for another 5 days? 

I wanted so badly to keep it on forever and go explore sounds, but I felt so guilty having turned it on and going against what I was told to do. There was obviously a reason Dr. Murray wanted me to keep it off for two weeks and I really did not want to take any chances at this point.

That night, all I could think about was turning on my Esteem again. Maybe Dr. Murray would be okay with it knowing that I had not experienced any feedback? I decided that it would not hurt to ask so the next morning, I emailed Dr. Murray's office to see how he felt about me turning it back on for good. I checked my email about every 5 minutes until he responded that afternoon telling me to go for it! Parts of me felt skeptical about "rushing the system", but   I was desperate for sound in my left ear. 

I turned it to the highest setting right off the bat. It took only a couple of hours for me to get past the overwhelming sensation of the "me" noises, like breathing, swallowing, and chewing. It was then that I realized that even the loudest setting did not seem loud enough for me. Voices were not very clear either. I knew that it was early in the process but I couldn't help but feel a pang of disappointment. It was almost if my heart had stopped for a moments time. For the remainder of the day, I had to keep reminding myself that my ear was still healing, my program/settings were not properly adjusted, and that even the littlest bit of sound is better than nothing.

That evening, my ear started to feel bloated with pressure and I had an overwhelming sensation that my ear needed to pop. It felt as if my ear was swelling and was going to explode. I reached my hand behind my ear and began to skim my fingers along the tape that rested peacefully over my incision. When I touched the middle of the incision, the pressure became worse. It wasn't painful, just different and uncomfortable. I felt like something was not right and began to worry that I had made a mistake by turning it on too early and starting off at such a high level. Although I was mentally ready to have my Esteem back on, I knew that my ear was not physically ready for this. 

I decided to turn it off and keep it off for the next couple of day until I reached my two week marker. I think this was God's way of telling me that I need to be more patient and that good things will come to those who wait.

Thursday, January 31, 2013

Life with One Ear...

... is not fun. I feel uneven. I feel incomplete. I feel null and void. I feel like a large piece of me is missing. The left side of my body feels like a black hole that is going to suck me in. It is like sound cannot be decompressed. It cannot be processed. It comes in through one ear and the pressure just builds and builds until I feel as if my head is going to explode.

My tinnitus is back. I haven't experienced this sensation in over a year! To hear a constant ringing is just plain annoying. It is making it difficult for me to sleep. It makes a lot of things difficult. Like conversation. I cant hear myself speak. I cant even hear myself think for christ sake. This sensation is all-consuming and not in a good way. Once the ringing starts, it is near impossible to make it go away. I try plugging my fingers in my ear to make this horrific noise go away. It won't. As I lay in bed writing this, I wonder if this offbeat symphony will ever go away.

Life with one ear, and not a great one, is just plain awful. I did not expect things to be as hard as they have been. I do not know how on earth I ever did this for 8 weeks after my initial surgery. Looking back, I do not remember it being that bad, which is probably why I thought 2 weeks would be a piece of cake. It's not. It's just plain torture.

I hate not being able to hear well; it makes my heart feel like it is going to explode. I hate that I feel frustrated all the time. I hate that it makes me snappy. I hate that I cannot have a conversation without putting 300% energy into hearing one sentence. I hate that I have to ask "what?" 3 times before hearing something. I hate not being able to hear in the shower. I hate that my night is so silent and dead. I hate that I cannot talk with my husband in bed anymore. I hate that I cant hear the whispers of the wind.


To be completely honest, I think what I really hate is what my life is like without my Esteem. I have spent the last six months focused on the fact that there is a problem and I have put all my energy into finding a solution and just simply being heard. While this energy has been put to good use, I am realizing that I have lost sight of all the positive aspects the Esteem has brought to my life. It gave me hope. It made me believe in miracles. It gave me confidence to challenge myself, to be myself. It brought me out of my shell. It allowed me to, once again, have faith. To open my heart to the world again. It brought back my zest for life. It pushed me on the path to acceptance. 


It changed me.

I must always remember the day my Esteem was turned on. It was the day I became whole again.

Saturday, January 26, 2013

Getting my Hair Did

The next morning Fras and I met my parents at their hotel for breakfast and attempted to figure out the best way to wash my hair. After my initial surgery, Dr. Marzo had not provided us with any strict guidelines; his only request had been to simply wait 5 days before showering. Easy enough. However, Dr. Murray's request were quite demanding. While he did give me permission to "shower" 3 days after surgery, I was told that I would have to keep the incision behind my ear dry for 10 days and water out of my ear canal for 8 weeks. Essentially, he was trying to tell me that I could wash my body but my hair would have to stay dirty for at least 10 days. I mean, how in the world did he expect me to wash my hair without getting the incision wet? 

At first, I didn't think that 10 days would be that bad. How dirty could my hair get if I would be sleeping and not very active? However, the day of my post-op appointment, when they took the helmet off, is when I realized just how bad my hair situation was going to be. In order to avoid shaving large amounts of hair, Dr. Murray slicked back my hair with a glue like substance to keep it away from the incision. While this is good in theory, as I would rather have gross hair than no hair at all, it was definitely no treat for the eyes to see.

The post-op instructions from Dr. Murray's office provided some suggestions for how to meet these insane guidelines. The only way to remove the glue was to massage hand sanitizer into the hair. So, I decided to start with this as a first step. I carefully brushed my hair to make a very stylish 80's side ponytail, leaving the crunchy portions of my hair flowing free. For about 20 minutes, I repeated the following two steps over and over again: massaging in hand sanitizer and brushing out the crunchiness; massaging in hand sanitizer and brushing out the crunchiness. Once I had gotten most of that out, it was time for the hard part.


In order to avoid water getting in my ear, the post-op instructions suggested placing a cotton ball in the ear canal then covering with Vaseline. In theory, this seemed so simple and getting the actually cotton ball inside my ear was, but every time I tried to smear Vaseline on the cotton ball, the cotton ball would come right out. When I would put it back in, the Vaseline on the cotton ball, as well as the remains on my fingers, would make the areas around my ear all oily. I thought the point of showering was to get the oil out and here I was making things seemingly worse. Once the cotton ball was in and greased up, we placed a plastic bag around my ear like a cocoon so my ear canal was now safe from water. 


Now we had to find a way to keep the incision dry. The post-op instructions did not provide any suggestions for how to do this. What? Did they really just assume that people would go 10 days without washing their hair? That is absurd! I wasn't sure how to go about doing this, so I posed this question on the Envoy Esteem Patients Group on facebook (i.e., an online support group for current and potential Esteem recipients - a place to share experiences, to ask questions, and to gain more information about the implant). Other patients suggested simply holding a thick towel over my ear while having someone else take care of washing my hair. Since I couldn't think of anything better, we decided on this method. 

While I kneeled in front of the bath tub with my head hanging over the edge, I held a towel over my ear while my mom washed and rinsed my hair. After about 20 minutes and 3 shampoo coats later, my hair was clean at last! My "freshness" was complete. I finally had the herbal essence moment I was looking for! Ahhhh Yessssss!

While it felt great to finally have my hair clean, OH MY GOODNESS! What a process that was! I couldn't believe I would have to go through this every time I wanted to shower. In a moments time, I felt helpless and I hated the idea of not being able to do something on my own. I quickly abandoned these thoughts because, in reality, it is only 10 days. For some people this is a lifestyle. Just as many people take their hearing for granted, I had taken my independence for granted. It made me realize just how easy it is to feel sorry for ourselves and to take all of Gods gifts for granted. At the end of the day, it is up to you to find the beauty of the storm. 

Friday, January 25, 2013

Home Sweet Home

After almost 5 days in San Jose, it was time for us to head home. Most people typically head back home a day or two after surgery, but since I had experienced so many complications following my initial surgery (i.e., nausea/vomiting/fever/pain), we wanted to give ourselves a bit of a buffer in case I responded similarly to the revision surgery. 

Thank goodness I didn't! 


Recovery thus far has been a piece of cake compared to last time. To be completely honest, we probably could have left the day after surgery. But I have to admit...I definitely did not mind having an extra couple of days to relax at the hotel and have other people take care of me for a change. I am so very grateful for my husband and mother-in-law who made this trip seem like an actual vacation. I am a busy girl on the go and it is not very often that I am able to just relax and take it easy. I almost forgot how nice it is to just not do anything. To not have to worry about going to work, making money, paying the bills, making sure the house is clean, that the dog has been fed, that I called so and so back. For the first time in a while, it was just about me me me. Was I comfortable? Was I feeling okay? Did I have enough to eat? Was there anything I needed? I must say that I was loving all of the extra attention I was getting from my husband and was a tiny bit disappointed that this mini-vacay was coming to an end. The stress in preparing for this revision surgery had put some strain on me and my husbands relationship, to say the least, and I feel that this trip helped restrengthened our bond. It gave me the reassurance that I am not alone in thing. That I have a partner for life.


While I had enjoyed these lazy days, I was anxious to get home and back into the swing of things. However, I had been so wrapped up in, well, me-time, that I completely forgot we were flying Southwest Airlines and had to check into our flight 24 hours in advance in order to ensure that we had a decent boarding position. Luckily, my husband had also, surprisingly, thought of this and woke up early to check us in and print our boarding passes. We ended up in the "B" boarding group which was okay, but did not guarantee that I would be able to find a window seat on the right side of the plane (so I could rest my head without putting pressure on my left ear).


My husband sensed my anxiety about this (partially because I was not so discreet about it), so after we checked in and got settled at the gate, he ventured to customer service to see what he could do. He explained to them that I had just gotten surgery and requested that we be one of the first to board the plane so I would be able to find a comfortable seat. They agreed and gave him a little blue envelope that we were to present upon boarding.

As promised, we were the first passengers to board the plane. We took the first available seats that we laid eyes on; right in the front row which mean lots of space, leg room, and a window to lay my head against (my poor husband took the middle seat). I popped a pain pill and off we went. I had been worried that ascending and descending would make my ears pop, which, I could only imagine would be a very unpleasant experience. Fortunately, I slept baby the whole two and a half hours. If my ears were popping during the flight, I did not seem to notice!


I woke up as the flight attendants were making their final rounds. I was so groggy and in a haze that I almost forgot that my parents would be meeting us in Denver. Their plane had arrived about 20 minutes before us and we had planned to meet up with them at baggage claim. I cannot tell you how nice it was to see them. There is nothing in the world like having your mom there to take care of you and get you settled.   


The first thing I said when I saw my mom was, "we HAVE to do something about my hair." At this point, it had not been washed for 5 days!! I have very thin and straight hair, so, as you can imagine, it had become stringy and greasy real quick. I normally cannot go more than a day without showering! My parents laughed, and said they would help me take care of it tomorrow. Everyone was tired from a long day of traveling. 



While my parents and I collected our bags, Fraser went to get our car from the long term parking lot. After a 30 minute car ride, we were FINALLY home. Ahh... There is really no place like home! 

As my husband and I laid in bed that evening, we both felt as if some weight had been lifted off our shoulders. The worst was over and we had made it through yet another roadblock in our lives. And to our surprise, we were still alive, standing tall, with big smiles on our faces. While life seems almost impossible at times, the strength we gain from these experiences are irreplaceable. They help mold us into who we are as individuals as well as in our relationships with others. I know one day I will look back on this and realize just how strong it made me and nothing will seem impossible anymore.

Thursday, January 24, 2013

Revision Surgery (Part 4): Hearing Aid Adjustment

On Thursday, the day after my post-op appointment, I was scheduled to see Dr. Tucker so that she could adjust the hearing aid for my right, non-Esteem ear, as this would be my only ear for the next two weeks!

As I had mentioned in a previous post (click HERE to view), I lost and had to be fitted for a new hearing aid right before I left for surgery. When my hearing aid finally arrived the week before surgery, my audiologist was able to fit my hearing aid with a standard adjustment based on my most recent hearing test (which had been almost a year ago). She knew I was in a bit of a time crunch and wanted to get it to me as soon as she possibly could. I had been worried that it would not sound right since I was not there during the fitting, but I was actually surprised by how much better everything sounded with my new hearing aid. However, being being the perfectionist that I am, I felt the need to have another test conducted so that my hearing aid could be more personally programmed to fit my needs. 

I managed to get an appointment the Friday before I was leaving for surgery. However, looking back, I kind of wish that I would have just stuck with the settings she gave me originally. While I was more than grateful that my new audiologist was able to get my hearing aid to me so quickly, our personalities had definitely clashed while she was trying to adjust my hearing aid. The entire time I continually expressed my discomfort, as some sounds felt piercingly loud to the point where I would actually cringe. Normally, I would say the louder the better, but since my hearing has decreased at such an expedited rate, I have become increasingly concerned  that my hearing aid may actually be damaging my hearing. So, over the past year or so, I have tried to be cautious about having my settings "too" loud.

No matter what I said, my audiologist just would not listen to me. During the entire appointment, I had felt like she was basically telling me that what I was experiencing was wrong or impossible. Like she knew what the heck I was experiencing in that moment! It was like she programmed my hearing aid strictly based on my new test results and didn't care to tweak it further as she told me, "The test do not lie". After more probing, she turned the entire volume down a couple of notches, which did not seem to help remove the piercing tone in the slightest (just made the sounds that did feel comfortable quieter). I also had the feeling that she was trying to rush me out of there because after a few tweaks she seemed to just give up and tell me that there was nothing more she could do. I left my appointment in tears. I was actually so upset that instead of going straight to work, I took a detour home to calm myself down. Since it was a Friday, and I was leaving early Monday morning, I, unfortunately, was not able to "fix" things before my trip to San Jose, and quite frankly, I was even not sure if I ever wanted to go back and see her again.

Anyways, during my pre-op appointment, I had told Dr. Tucker about what had happened and expressed my concern with the piercing and uncomfortable pitches. While she seemed concerned for me, she was not sure if she had any available appointments on such late notice. As amazing as she is, she somehow managed to fit me in on Thursday, the day before we were scheduled to leave. As you can imagine, I was beyond relieved.

I do not know why but I have had such a difficult time finding an audiologist in Denver whom I feel comfortable with and trust; someone who will listens to my every need and concern; someone who treats me like I am their only patient (even if it means making others wait). Essentially, I have not been able to find someone as wonderful as my audiologist in St. Louis, Jennifer. 

I have to say that Dr. Tucker definitely met my approval. She is such a kind person and seems to really care about her patients. I felt as if she listened to my concerns and made tweaks and adjustments based on what I was telling her. She even went the extra mile to make loud noises so that we could figure out the tone that was uncomfortable and make sure that it was no longer piercing. If something did not sound right, she would try something new. She did not give up. She also was able to customized programs so that I would be able to turn the volume up and down, which my audiologist in Denver said was impossible to do with only one hearing aid. 

I left that appointment feeling much more comfortable and happy about my hearing aid adjustments which gave me faith that there are doctors/audiologist out there who do truly care about US as people. Who sympathize with our everyday struggle and want nothing more than to help us and make our lives easier. 

What I realized today is that, sometimes, being your best advocate is not always about asking the right questions, or being informed, or pushing your doctor/audiologist to get you what you need. Sometimes, it is not even about you; it is about them. To them, you may always be just another patient; another piece of paper. And unfortunately, there is nothing you can do to change that. Except...well...walking away. Just like any relationship in our lives, your relationship with your health care provider must be built on trust and you must feel that "spark" or "connection". So, what I realized is that being your best advocate is sometimes, simply, knowing in your heart what you deserve and when it is time to walk away. 

Wednesday, January 23, 2013

Revision Surgery (Part 3): Post-Op


Although I had a difficult time sleeping through the night, I woke up the next day feeling pretty darn good and in minimal pain. No "day 2" vomiting and nausea like last time. My neck wasn't killing me; I could actually move it and could easily lay up and down without wanting to scream. And I was surprisingly hungry! Really hungry! It may have been the Vicodin but I was feeling pretty darn good.

The entire morning, all I could think about was my post-op appointment with Dr. Murray that afternoon as I was excited to find out what he had discovered and what he thought about everything. Dr. Murray had debriefed Fraser and Lydia after my surgery but did not give them any of the details. Just that the surgery went well, I was doing great, and that they only found scar tissue so the full revision surgery of replacing and reconnecting the driver to the Stapes did not happen.

While I was very happy to hear that everything was connected properly, I was scared by the fact that all they found was scar tissue. Was there a lot or a little bit of scar tissue? Where did they find it? Would the removal of this scar tissue be enough to fix the problems I was having? Were the problems I was experiencing real or just the limitations of the device? Did I make the right decision in pushing for this full, behind the ear surgery? I had a million questions running through my head and was so scared that I would forget them all in my Vicodin haze. As I laid in bed, I opened the notes app on my iphone and started typing out all my questions and concerns. Once I felt more prepared for my appointment, I was finally able to relax and rest a little, which I needed.



Next thing I knew, Fraser was waking me up for my next round of pain meds and we were off to my post-op appointment. It was typical that my pain meds were due right before the appointment. I had a lot of ground to cover with Dr. Murray and I wanted to be focused, alert, and, well, conscious. As I stepped out of the car, I remember feeling the Vicodin haze set over me. Woah! This was going to be an interesting appointment…


After checking in, Rebecca took me back to get my blood pressure and temperature. I was then taken to a room where Lydia and Fraser were waiting. Dr. Murray followed a couple of minutes after. It was time to get down to business.

Dr. Murray first removed the helmet-like bandage that was protecting my ear. Ahh! Finally, my ear could breath again! I was getting really sick of that thing… He took a look inside my ear and said that everything looked great. While he was doing this, he was attempting to ask me some questions, but Hello! I only have one ear and not a great one (you have seen my test results) and you are not on that side of me nor are you looking at me. I CANT HEAR YOU!!

I gently reminded him (I think I was nice…) that I could not hear him and that I was going to have to look at him to hear. He sat me up in the chair, rotated it about 90 degrees so that I was facing the chair he would be sitting in, sat back down, and rotated his chair so that it was facing me. He laughed, smiled, and said, “Better?”. Yes, Dr. Murray. Didn't you know that trying to listen, while loopy on Vicodin with only one ear is quite a challenging task?


Okay. NOW it was time to get down to business. I told him that I had some questions but would ask them after he updated me on everything that happened yesterday. 

The surgery was about 2.5 hours long and he found absolutely nothing wrong with how my Esteem was surgically implanted. Everything was connected perfectly, and he actually mentioned that he thought Dr. Marzo had done a “beautiful” job. He did, however, find scar tissue, but in only one spot that, he said, is almost impossible to prevent. He showed us the diagram to the right and circled the general area of where the scar tissue was found. I am not very familiar with the anatomy of the inner ear but it looks as if the scar tissue was found around where the sensor and driver are located. I only remember asking him if there was scar tissue on the driver and his response was “Yes”. While he did not mention the degree or amount of scar tissue that was found, he did say that the scar tissue was located in a place that was likely affecting the functioning of the device and thereby, my hearing.

Dr. Murray, unfortunately, did not conduct any test on the Esteem before removing the scar tissue, but once the scar tissue was removed, he performed a test on the driver and it was a “perfect A”. He was so surprised by how well it was functioning that he had to test it a couple of times just to be sure. He also pointed out that we now have a baseline for what my driver scores should look like which will help them not only determine if the device is functioning as it should when tested at a later date, but it will also help them more quickly and easily detect issues in the future.

When I asked him if he thought this procedure would improve my hearing, he said that we will not know until I turned it on in a couple of weeks. Dr. Murray is always very careful about what he says and I know that he is trying to protect himself and not give me any false expectations, and rightfully so, but I really do hate the “lets wait and see” answers. Don’t get me wrong. I LOVE Dr. Murray as my surgeon and doctor; he really is wonderful and I honestly believe he does his best to answer each of my questions as completely and fully as possible (except, of course, when my ADHD brain kicks in with a new follow-up question that I feel the need to ask before he finishes answering my previous question. Yeah. Fraser totally called me out on this.). But you sometimes have to pick apart his brain to get the answers your looking for. When asked about the gain that people typically see when scar tissue is removed, he said there is about a 30-40% gain on average.

I next asked if he thought there was a good chance that the scar tissue would come back and he told us that, again, he wasn't sure but that in his experience it typically doesn't. He mentioned that I should keep track of my early experiences, especially if I notice a drop at any point during the first couple of months as this may be an indicator that the scar tissue has returned.

I think the most significant question I asked him during my appointment was if he felt that the surgery was “worth it”. He shared with us that without going in there behind the ear, he would never have been able to confirm that everything was connected perfectly; he would not have been able to detect that scar tissue actually existed in this location; and he would not have been able to remove scar tissue in this location through an in-the-canal approach.  Additionally, he again stated that the scar tissue was in a place that was likely affecting how the device was functioning. While he was unsure how much improvement I would see as a result of removing the scar tissue (we would have to wait and see), I think the conclusion was that we all felt the procedure was a good idea.

The last thing we spoke about was what I should expect in weeks to come. In regards to my recovery, he was glad I was feeling well (maybe a little too well during that appointment) and should be able to wean myself off of the pain meds over the next few days; that I should not take any blood thinners (e.g., Advil or vitamins/supplements) for the next 2 months; and that I should avoid strenuous exercise for 2+ weeks. 

In regards to activating the Esteem, he told me that I could turn it on in two weeks. Two weeks? I cannot tell you how THRILLED I was about this! Two weeks is WAY better than two months! It had only been a day and I was already anxious to turn the darn thing on. 

He then spoke a little bit about how the device had been programmed; The Engineer had set the A, B, and C programs to have very generic settings that were similar to my current settings. When I asked if there was a particular program I should start on, Dr. Murray suggested that I spend the next month or so playing around with the different programs, being sure to try them all in lots of different environmental settings. It will not be until my first adjustment that they uniquely fit the device to better meet my needs. Interestingly, he said that I should witness my “best results” 3-4 weeks after I turn on the device and that this is when he would like for me to come in for a check-up and further testing.

As we left the appointment, I remember feeling exhausted, overwhelmed, and overloaded with the copious amount of information I had devoured in our conversation with Dr. Murray. While there were many parts to our conversation that lead me to feel hopeful about my future results with the Esteem, there was a little part of me that was worried if the gain I would get would be enough. Enough to help me hear "normally" again. Enough to reach my high expectations. Enough to put me back to where I used to be before my hearing took a turn for the worst. Removing the scar tissue from one messily little place seemed like something so small and minor. How could this ever make a big impact? I wasn't sure. 

But I sure as hell couldn't wait to find out...

Tuesday, January 22, 2013

Revision Surgery Pictures (Gross but Cool!)

I had requested that Dr. Murray take pictures while he was conducting my revision surgery and a few are posted below. I apologize but I am not quite sure what each of the pictures actually represent, but still pretty cool!









Revision Surgery (Part 2): Surgery Day


The morning of my surgery, I woke up around 9:30 AM to find my husband hovering over me, smiling and smelling like syrup. I was surprised that I had slept so well given the circumstances and that his noisy morning routine did not wake me. I was grateful he had let me sleep in because I do not think I would have been able to stand watching two people eat while I was not allowed to eat or drink anything until after my surgery that evening (if I would even hungry). The smell of syrup on my husband was already making me grouchy.

When I hopped into the shower, I think my brain finally began to wake up. Holy Crap! I was getting surgery today! For a moment, an overwhelming sense of anxiety hit me hard, and my stomach began to tie itself into a thousand little knots. I think what concerned me most was what my recovery would be like. The only knowledge I had was of what I had experienced after the initial surgery, which was absolutely the most horrible, painful, and miserable experience of my life. I know that sounds a bit dramatic but its true. It literally was the most painful thing I had ever experienced in MY life. Was I ready to go through that again? Could I handle going through that again? I wasn't sure.

We arrived at the surgery center around 10:30 AM. My surgery was scheduled to begin at 12:00 PM. When we arrived, I signed some consent forms and was then taken into the back to go through some additional paperwork that I had not been able to complete over the phone the day before. While we were going through this, I made sure to let her know how sick and nauseous I had been after my initial surgery in hopes that she would give me a little something to prevent this from happening again. The nurse left me to change into a lovely hospital gown while she checked with the anesthesiologist to see what they would be able to do for me. I was grateful to learn that the nurse would be able to give me some medicine to prevent nausea; however, she did mention that there was still a possibility that I would be sick again like last time as nausea and vomiting is a very common reaction to anesthesia for young females getting ear surgery. At this point, I was willing try anything so that I could at least say I was proactive and tried.

The nurse hooked me up to an IV, gave me an anti-nausea pill to swallow, and also added a anti-nausea meds to my IV that was given to me in a couple of doses every 10-15 minutes. After the first dose, the nurse finally went to get my husband so that he would be able to sit and wait with me before they took me back. I was getting nervous that I would not have any time with him before surgery, and when he walked into the room, his eyes filled with tears, and I could tell he had been thinking the exact same thing. 

A couple of minutes after my husband was brought back, they notified me that the first surgery of the day had concluded and that they would need to clean the room before my surgery would begin. This took about a half hour and during this time we got a couple of visits. 

First, we met and spoke briefly with the Anesthesiologist who would be taking care of me during the surgery. Since the nurse had already given me the anti-nausea meds, there was not much to do or for us discuss. 


A little bit later, Dr. Murray popped his head into my room to see how everything was and to let me know they were almost ready for me. When he walked into the room, his near presence gave me the excited adrenalin boost that I needed that morning. It was the same excited and hopeful spark that I felt before my first surgery. I really like Dr. Murray and more importantly, I trusted him as my doctor and surgeon. I knew I was in good hands and if my hearing was able to be fixed in any way, he would be the guy who could do it. For the first time that day, I felt very confident and sure. I was ready to take this on! Again! Whatever my fate may be!

Shortly after Dr. Murray’s visit, a new nurse that I hadn't met yet informed me that they were ready for me. I gave my husband a big hug and kiss and told him I would be waiting for him on the other side (in recovery that is). The nurse grabbed my IV and, together, we began walking down the hallway to my final destination. As I lied down on the operating table, they had me untie the back of my gown and spread my arms to either side so they would rest on these wing like attachments to the operating table. 

I have to admit that this process was a bit nerve wrecking for me. Prior to my initial surgery, the nurse had given me what they like to call “3 Margaritas” to take the edge off so that when I was wheeled in the operating room, I was already pretty out of it; I barely remember a thing from my first surgery! This time I was wide awake. As I tried to calm myself down, I remember staring up to find these huge over sized operating lamps above my head. As I looked from left to right, there were a couple of nurses scurrying around me to get everything ready. Looking back it was sort of cool that I got to see what a surgery room looked like; however, in this moment I was feeling a tad bit overwhelmed. 

Next thing I know, an oxygen-like mask was placed over my face and I start to freak out a little bit. I was having trouble inhaling and felt like I couldn't breath very well. I remember actually grabbing the mask and looking around to see what the heck was going on. The mask was removed and when I looked up behind me I saw the anesthesiologist. Oh. Right. He smiled and told me to relax, close my eyes, and take a deep breath. So I did.

When I opened my eyes, the surgery was over and there were two nurses on either side of my bed. I vaguely remember looking to the nurse on my right and telling her how beautiful she was. When I started to become a little more conscious, they brought my husband back and gave me a little something to eat and drink. I remember having terrible dry mouth and it being very difficult to eat the crackers because they kept sticking to the side of my mouth. I also remember being extremely thirsty. BUT most importantly, I did not feel sick or nauseous one bit, so whatever the doctors had given me before the surgery worked like a charm.

After I had gotten a little something in my stomach, the nurse asked about my pain levels. I said it was about a 5 on a scale from 1-10. The area around my ear and neck was sore, for sure, but the pain was nothing near what I had experienced with my first surgery, and for that I was VERY grateful. In order to discharge me, they wanted my pain levels to be at about a 2-3, so they gave me a Percocet to speed up the process.

The Ride Home from Surgery
When they gave me the okay, my husband helped me get dressed and boy, was that an interesting process. I had worn a button down, black leggings, and UGG boots that morning. We definitely had some difficulty getting the leggings on to say the least. Note to Self: Do not wear fitted clothing to surgery. Comfortable? Yes. Convenient? Not so much. 

Once I got myself together, they put me in a wheelchair and Fraser wheeled me out the back door where Lydia was waiting for us. I was definitely feeling out of it on the ride home as you can probably see from the picture.

Skyping with my Parents
We arrived back at the hotel around 5:30 PM that evening. I watched a little TV, ate some yogurt and crackers, Skyped with my parents, and then went straight to bed. I was so so exhausted and could not wait to go to sleep. My pain felt manageable and I could actually move my neck this time so sleeping was somewhat comfortable; even with the big helmet on my head!

Although I was very tired when going to bed, I did not sleep very well throughout that first night. My husband was worried about my pain management as this had been something that he had not done a great job regulating after my initial surgery. So, during my recovery he had me on a timer in order to avoid letting my pain get ahead of me. However, the timer was not completely necessary as I would start to feel pain about every 3-4 hours, and, naturally, my body would wake itself up. I wouldn't be able to fall back asleep until my next does, so in order to kill time, we would watch a little TV, have a little snack, and by the time I was able to get the food down, it would be time for my next dose! Then, it would be back to bed to start the whole process all over again...and again...and again...

Monday, January 21, 2013

Revision Surgery (Part 1): Pre-Op


Fraser and I arrived at the San Jose Airport around 1:30 PM on Monday afternoon. My mother-in-law, Lydia, had flown into San Francisco, rented a car, and drove to San Jose to pick us up. When we got to the baggage claim, she was already there waiting for us and I have to say, her near presence was very comforting to me as it brought a sense of serenity to the anxious aura I seemed to be carrying that morning.

We had very little time before my first appointment, so we quickly checked into the hotel, grabbed a bite to eat, and made our way to the Camino Ear, Nose, and Throat Clinic. When we arrived, I was sent back so that the onsite audiologist, Dr. Tucker, could conduct some routine hearing tests. I was a bit surprised to be working with an audiologist, as I normally met with an Esteem Engineer for testing in the past; However, this shift was not completely surprising as training audiologist had been a part of Envoy’s new business model in order to make routine testing and adjustments for the Esteem more accessible to clients. 

Once the testing was complete, Lydia, Fraser, and I met with one of Dr. Murray's staff to review information regarding my before and after surgery care. Before my initial surgery, we were provided with very little information about what to expect after surgery and I will admit that this was partly because we were not even sure the type of questions to ask when we had the chance. Because of this, my recovery from the initial surgery did not go very smoothly; I was very sick and in a TON of pain. Words cannot explain what a terrifying experience this was for not only myself, but also my parents and Fraser who had been there to take care of me. We had all felt as if we were thrown into an unfamiliar situation without any idea of how to respond. Even when Fraser had contacted Dr. Marzo's staff the day after my initial surgery for more specific directions on managing my nausea and pain, they had not been very direct with him and even called me a "baby". I know that I may have a low pain threshold, but How Rude!

Therefore, you can imagine how surprised and grateful we were to have someone willing and able to sit down with us, review the information we needed to know, and allow us to ask questions. They even gave us a paper copy of what they told us in case we forgot (which our tired brains obviously would have - that was a lot of information!). I think that Fraser and Lydia were especially grateful of this time as it allowed them to feel more prepared and confident in providing me with the appropriate care after surgery.

And it gets better... We were provided with a cute little carrying case to hold all of the medications I would need on my road to recovery. The convenience of having my prescriptions filled and all ready to go was so nice, as we were all very exhausted and in no mood to spend our evening navigating an unfamiliar town trying to get my prescriptions filled. I have to admit that I was totally LOVING the organization at this office and was really impressed that they had thought to include even the littlest things, like stool softeners. This is embarrassing to admit but anyone who has taken pain medication for a period of time knows how important that is. 

January 2013 Audiogram (Conducted by Audiologist)
A=Left, Esteem Ear
O=Right, Non-Esteem Ear
X=Left, Esteem Ear (when off)
The last portion of my time was spent with Dr. Murray to discuss the results of my hearing test and so that he could answer any outstanding questions we had about the procedure that would take place the next day. 

In regards to my hearing test, the results showed that the hearing in my right, non-esteem ear had decreased roughly 10 decibels across almost all frequency levels since my last test about a year and a half ago. This was not a huge surprise to me as my hearing has declined at this expedited rate since the end of high school. Dr. Murray did not have much to say about this pattern except that we should keep an eye on it and that he has seen patients in which the loss suddenly stopped and stayed the same for a while. I asked if I was still a candidate for the Esteem and he said yes, but that if my hearing loss continued at this rate that I should consider looking into a cochlear implant. Dr. Murray spoke very highly of the cochlear implant in improving clients ability to understand speech and suggested that the cochlear implant would likely become fully implantable within the next 5 or so years.

November 2012 Audiogram (Conducted by Esteem Engineer)
E=Left, Esteem Ear
X=Left, Esteem Ear Before Implant (Baseline)
The test results for my left, Esteem implanted ear remained relatively the same as the test conducted in November (give or take a little). However, my word understanding increased from 60% to 78% when tested at 70 db. This test is generally showing that my hearing with the Esteem falls within the lower spectrum of everyday speech. However, when compared to my baseline results, there is very little gain (see test from November on left). 


Surprised by the increase in my word understanding, I did ask Dr. Murray if there was a difference between the test conducted by the Esteem Engineers and Audiologist, and he essentially said that they are different test. When conducted by an Envoy Engineer, the test bypasses the Esteem sensor so that sound signals are sent directly from the processor to our eardrum for interpretation. When the test is conducted by  an audiologist, signals are sent directly through our ear canal to the sensor and so on. When I asked if one was more accurate than the other, he again expressed that they are two different test and cannot be compared. [Please note that this is my interpretation of the difference that was explained to me. Hopefully this information is accurate but thought it would be good to put a disclaimer here].

In regards to my new test, Dr. Tucker had mentioned earlier that the lack of gain in the low frequencies and the drop at 6000 hz was a bit unusual. Dr. Murray found this unusual as well but felt that overall, my hearing with the Esteem was actually “not that bad”. At this point in the conversation, I was starting to feel a little unsure about my revision surgery as he has mentioned to me on numerous occasions, including today, that there was always the possibility of him going in there and finding absolutely nothing. He asked me, if this were the case tomorrow, would I want him to remove the Esteem. I quickly reported, “Definitely not”. Although it is not perfect, I really do LOVE my Esteem and cannot imagine my life without it! I let out a huge sigh of relief when Dr. Murray followed up by saying that this was probably a good choice for me. 

Feeling a bit concerned and in desperate need of a confidence boost, I asked him if he thought I would benefit from this procedure and if I was making a good decision by moving forward with surgery. In return, he asked me if I wanted to go through with it. While it scared the heck out of me to know that he could go in there and find nothing, I knew in my heart that if I did not go through with this, then there would always be a little voice in my head wondering what could have been. So I said, "Yes, of course".

After my appointments, we headed back to the hotel, cleaned up, and headed to Forbes Mill Steakhouse for dinner, as suggested by Dr. Murray. My husband and I do not get the chance to go out to dinner very often these days, so it was definitely a special treat for us! I could not have asked for a better dinner; the food was absolutely AMAZING!

Over dinner, Lydia gave me something very special to her that had been given to her by her own mother. When her son, my brother in law, was deployed to Afghanistan, her mother had given her a worry stone. Whenever she would worry about her son or was just having a difficult time while he was away, she would rub it to help melt her stress and anxiety away. I know how difficult things were for her when her son was deployed and I can only imagine how significant this rock was to her in getting her through this tough time. She told me that she wanted me to keep this until I began to feel better about the situation and when things finally started to feel like they were falling into place again. 

This gift was truly one of the most heartfelt gifts I have ever received and it meant so much to me to know that I have her support in this journey. I felt very uplifted in this moment as it made me believe for the first time in a while that someday, this journey would be a mere memory in my mind and that I would grow to be a better, stronger, and more understanding individual because of it.

I couldn't have asked for a more perfect way to end the evening.

Sunday, January 20, 2013

Revision Surgery Agenda


Monday, January 21st

7:45 AM        Lydia Departs from New York
American Airlines
Flight # 59
Depart NEW YORK (JFK) at 7:45 AM
Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:25 AM      Lydia Arrives in San Francisco
American Airlines
Flight # 59
Depart NEW YORK (JFK) at 7:45 AM
Arrive in SAN FRANCISCO (SFO) at 11:25 AM

11:50 AM      Alex and Fraser Depart from Denver
Southwest Airlines
Flight # 1030
Depart DENVER CO (DEN) at 11:50 AM
Arrive in SAN JOSE CA (SJC) at 1:35 PM

12:30 PM      Lydia Rents Car at San Francisco Airport

1:35 PM        Alex and Fraser Arrive in San Jose
Southwest Airlines
Flight # 1030
Depart DENVER CO (DEN) at 11:50 AM
Arrive in SAN JOSE CA (SJC) at 1:35 PM

2:00 PM        Lydia Picks up Alex and Fraser at the San Jose Airport

2:30 PM        Check-In Hotel
Courtyard San Jose Campbell
655 Creekside Way
Campbell, California 95008


3:00 PM        Audiogram with Dr. Tucker
6060 Hellyer Avenue #150
San Jose, CA 95138

4:00 PM        Pre-Opt Appointment with Dr. Murray
6060 Hellyer Avenue #150
San Jose, CA 95138


Tuesday, January 22nd

11:00 AM      Arrive at Surgery Center
Silicon Valley Surgery Center
14601 South Bascom Ave. Ste 100
Los Gatos, CA 95032

12:30 PM      Surgery Scheduled to Begin

5:00 PM        Surgery Ends/Head to Recovery

9:00 PM        Head back to Hotel


Wednesday, January 23rd

2:45 PM        Post-Op Appointment with Dr. Murray


Thursday, January 24th

11:00 AM        Hearing Aid Adjustment with Dr. Tucker


Friday, January 25th

10:00 AM      Check out of Hotel

12:40 PM      Lydia Departs from San Francisco
American Airlines
Flight # 16
Depart NEW YORK (JFK) at 12:40 PM
Arrive in SAN FRANCISCO (SFO) at 9:15 PM

1:10 PM        Alex and Fraser Depart from San Jose
                        Southwest Airlines
Flight # 519
Depart SAN JOSE CA (SJC) at 1:10 PM
Arrive in DENVER CO (DEN) at 4:40 PM

4:10 PM        Jane and David Arrive in Denver
                        Southwest Airlines
                        Flight # 818
                        Depart ST LOUIS MO (STL) at 2:45 PM
                        Arrive in DENVER CO (DEN) at 4:10 PM

4:40 PM        Alex and Fraser Arrive in Denver