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.
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!!
