Revision Surgery Roadblocks

It has been quite some time since I last blogged and so much has happened during this time. Hopefully this post will fill you in on all of my Esteem happening over the last couple of months...

As I had mentioned in a previous post, I was scheduled to have my revision surgery in October, but after speaking with Dr. Murray in August, we had decided to postpone the surgery to January 2013 in hopes that whatever issues there were with the cement would be resolved by this time. Shortly after this conversation, I was notified that Envoy Medical’s business structure had changed and there was a possibility that the cost of my revision procedure, and any future procedures, would not be covered as I had initially been told.  This was very frightening and upsetting for my husband and I, as these extra costs were not something we had anticipated or budgeted for. I was also worried that I would have to settle with the lack of clarity I had been experiencing. Yes … I could continue my life the way things were and be OK. But, there would always be a part of me that felt like something was missing. That something was not quite right. Like there was more that could be done. During this time I felt like my fate was no longer in my hands and all I could do was wait it out. If I hadn't already done that enough...

The staff at Envoy were very communicative during this time, even though there was not a lot of substantial information that was being shared. All they shared with me was that my “data” would be gathered and reviewed by a Board of Envoy Medical employees as well as Dr. Murray in order to determine if a revision surgery was “deemed fit”.  Those were the exact words used. To be completely honest, these words made me feel like I no longer had someone looking out for me. I didn't even feel like someones patient. I felt like a four-sided piece of paper among a dozen others in a large pile of paperwork.

After a long and torturous month, which seemed like an eternity, I heard from Dr. Murray’s office out of the blue to discuss the results of my “case”. During this conversation, I was first told that Envoy would pay for one full revision surgery (i.e., replacing and/or reconnecting the driver and/or battery) and one scar tissue removal surgery. This was a huge relief. However, any logistical costs, such as hotel, airfare, car rental, etc. would not be covered. While I had suspected this would be the case, all I could think about was how these extra costs would leave a very large hole in my wallet.

We also attempted to come up with a strategic plan for moving forward. Dr. Murray shared that it was very difficult for him to detect the root of the issue without having seen my ear, but from what I had mentioned in regards to the lack of clarity and experiencing distortion, that the issue was likely due to scar tissue. He suggested taking baby steps as we move forward and to start by removing scar tissue. If my hearing did not improve from this procedure, then we would reevaluate the situation and likely move forward with a full revision surgery. He told me to contact his assistant to schedule this procedure once I had some dates in mind.

After speaking with Dr. Murray, I was thrilled that everything was finally moving forward again and I wanted things to happen as soon as possible. As I hung up the phone with Dr. Murray, I rushed to my computer to send Dr. Murray’s assistant an email to let her know I would be there at Dr. Murray's earliest convenience. For a moment, all I could think about was me, my ear, and being able to hear again. Images of what my life had been like before I lost my hearing flashed through my mind. The teenage girl getting in trouble by her parents for spending endless hours talking on the phone, the girl who didn't think twice before answering her phone, the social butterfly who loved to be around others, the girl who didn't care what other people thought of her. The girl I once was. The girl I was starting to find again. The fun-loving girl who was ready for a major comeback.

As I was standing at my desk hovered over my computer, my dog began whining at me, as if to say, “What the heck is wrong with you?”. That is when reality hit. I have a dog to take care of …  I have a house and family … I have a job … I have  R-E-S-P-O-N-S-I-B-I-L-I-T-Y … ugh.  How on earth would I be able to coordinate all these different aspects of my life on such short notice? Oh … That’s right … I wouldn't … Sigh … I had been defeated.

When Dr. Murray’s office didn't hear from me, his assistant, Rebecca  contacted me to see if I had an idea of when I would like to come in for this surgery as Dr. Murray’s schedule was filling up quickly. I told her that with my planned out of office for Thanksgiving and Christmas, and given my expected work for these month, I would probably have to wait until the New Year. She mentioned that Dr. Murray had availability the week of Thanksgiving and proposed that the surgery happen during my already anticipated out of office. GENIUS!! 

I asked her to pencil me in temporarily and that I would give her a definite answer by the end of the week; I had to work this out with my husband and supervisor at work before making a final decision. Thankfully, both my husband and supervisor were supportive of this idea so my husband and I decided to take a detour to San Jose, CA before heading to St. Louis, MO (my hometown) to spend the thanksgiving holiday with my family.

My husband and I arrived in San Jose on Monday morning (November 19th), checked into the hotel, and went straight to my pre-op appointment at Dr. Murray’s office. During the first hour or so of the appointment, I met with an Esteem Engineer (one I had never met nor worked with before) who conducted some technical test on my Esteem as well as hearing tests to examine my pre-surgery gain.

I then met with Dr. Murray to review my test results. Essentially, Dr. Murray conveyed the same thing Melinda had mentioned to me back in June: that my test results have a peak at 1000 Hz and 1500 Hz and that this peak is likely the result of the Esteem Driver not being fully nor properly connected to the Stapes. Additionally, Dr. Murray examined my ear and found scar tissue build up on my ear drum. While it seemed that both issues were present, something we had not anticipated prior to this visit, Dr. Murray shared that he would not know the extent of the issue until he was able to get in there and really take a look. 

So, there I was … in San Jose … miles away from home … planning to take things slow … planning for the best case scenario (just scar tissue) … and … coming out with the worst case scenario (both issues) … leaving with much heavier baggage than I came with.

While we could move forward with the scar tissue removal procedure as planned (and save the full revision surgery for a later date), there is a 50/50 chance that the scar tissue will come back after the full revision surgery. If it did come back, then it would become a cost issue for husband and I. How in the world would we be able to afford this procedure when my two surgeries are up and Envoy is no longer obliged to pay for my future surgical needs?  It is terrifying to think that I have only two chances to get this right. 

Dr. Murray left the room so that my husband and I could contemplate what we wanted to do:

1) Do we do what we came here to do, which would leave the possibility of having to pay out of pocket for an additional scar tissue removal procedure at a later date? 

Or…

2) Do we consider this a "wasted" trip (and wasted money I might add) and come back at a later date so that we are able to potentially save money in the end by having both procedures done at the same time (but only being counted as one of my two procedures)?

As my husband and I were discussing the pro’s and con’s of our choices, Dr. Murray popped his head into the room to let us know that he could move his other appointments around so that I could have both procedures done the next day. My heart lit up.  My initial response was “Um… OK!!!!”

As Dr. Murray looked back and forth between my husband and I, my husband cleared his throat and softly said my name snapping me back to reality. “What about our flight leaving tomorrow? Would you be able to handle flying if you have a bad reaction to the pain and anesthesia again? What about work? Could you handle going back to work next week after having a much more invasive surgery than planned? Also, not being able to hear for 2 months is a lot different than not being able to hear for 2 weeks as you had discussed with your supervisor and co-workers?” Dr. Murray left the room again to let us contemplate this new idea.

My chest began to tighten and my heart filled with disappointment. I hated my husband at this moment for asking me these questions. For asking me to think with my head instead of my heart. For asking me to be realistic. What about me? What about what I want? What about what is best for me? Do I matter anymore? I am so tired of being thrown around. Of waiting and rescheduling and waiting more. I am so sick of having to accommodate to everyone else. I don’t want to prolong the inevitable any more. I want my life back. I want my hearing back. I have been through so much over the last year. When is it my turn to have something good happen? I deserve to choose me. Just this once.

I buried my face in my hands wanting to scream out in anger and frustration. Thinking back on this moment, I am not even sure whom I was truly mad at.

My husband?  For shattering my dreams and asking me to wait when he knows that I want this more than anything in the world.

Dr. Murray?  For having me come all the way out here and waste my time, vacation, and money to tell me something I was already told in June.

God? For testing my patience and making me wait. There better be a damn good reason he keeps putting this off! It is not fair that I hear of so many other peoples effortless success while I keep hitting roadblock after roadblock.

Myself? For not being able to fully accept myself as an individual with hearing loss and wanting so badly for the chance to hear again that I would so selfishly drop everything in my life for this.

All of the above?  Yes, all of the above.

When I finally lowered my hands from my face, I looked up, directly in my husbands eyes and said, “I … hate … you” because I knew he was right and I hated him for being right. My husband and I sat in silence until Dr. Murray reappeared and I told him that “we” decided to wait. That day, I blamed my husband for the decision we both knew in our hearts was the best one because, well, sometimes we just need someone to blame to help provide reason for the unfortunate things that happen in our lives.

I may have lost this battle, but I will keep fighting until I win this war. I truly believe with all my heart that everything happens for a reason, and that God has a plan for each and every one of us. There is a valuable life lesson that can be taken from each and every one of these setbacks and while I may not know what that is right now, the personal growth I have gained from this experience has already made the ride well worth it and I look forward to the 2nd phase of this journey to begin after my revision surgery ... January 22nd!!