Tuesday, April 15, 2014

Cyborg Adventure: Realistic Expectations



    Shortly after I wrote “Managing Expectations,” I returned to my surgeon’s office for a CT scan and a final evaluation before my surgery.  At that appointment I had a conversation with the chief audiologist that sounded a lot like the blog I had just written about managing expectations.  He pulled out several sheets of paper and went down a list of potential realities and risks.  Even though I had already written about expectations, and even though I was not surprised by such a conversation, there were things on that list that made me think. 

    First, I can expect that there will be a “non-disfiguring” bump on my head where the implant is located.  Duh.  I mean, I’ve seen it, it’s really pretty small, but they would have to grind half-way through my skull to make it flush with the rest of my skin.  I don’t think that I would mind a bump nearly as much as having a hole in my skull.  Besides, I’m just not that vain.

    There is a chance that I might experience “increased tinnitus.”  While I suppose this is possible, I’m not especially worried about this one.  My hearing loss began with tinnitus and if there is one-word that describes much of this adventure, tinnitus would be that word.  The ringing in my ears never stops.  Sometimes I don’t really notice it, but I’ve been to rock concerts with our church youth group and could still hear my ears ringing above the screaming guitars.  So yeah, I suppose it’s possible for my tinnitus to get worse, but I’m not sure how it could.

    It is possible that I will experience dizziness.  Several folks online have said that this may be one of the main reasons you shouldn’t make plans for the first week of your recovery.  It isn’t surprising that dizziness is common considering that they are poking holes in, and inserting wires into, the organ that not only gives you the ability to hear, but also provides your sense of balance.  The good news is that even though I might experience dizziness, it is very rare for this to “be prolonged.”

    Next, there were things that were a little more serious.  Although, rare, it is possible for the surgery to be a failure.  That is sobering but I suppose it’s good news that such occurrences are rare.  Also sobering was the news that, in perhaps 1% of cases, the facial nerve can be damaged during surgery which can cause numbness or partially paralyze your face.  Aside from any damage to the facial nerve, it is also possible for me to experience “numbness or stiffness around the ear” and my sense of taste could be affected temporarily.

    It is possible that in installing/inserting the cochlear implant, that the surgery might cause a leak of “perilymph fluid.”  I had to look that one up.  Perilymph fluid is a fluid contained in a part of the cochlea next to where the implant goes.  If this leaks (and doesn’t stop) it can cause dizziness and might require another surgery to stop the leak.  I’m hoping that doesn’t happen.

    The last two were the most sobering. Med-El, the manufacturer of the cochlear implant I will receive, talks a lot about how their thinner, softer implant is designed to “minimize” damage to the cochlea.  I allowed myself to think that meant I might still retain some natural hearing.  The audiologist was clear that with the insertion of my implant, I will most likely become totally deaf in my left ear.  The only consolation is that since I have so little hearing left in that ear, it probably won’t make much difference anyway.

    Med-El, like everyone else, likes to share good news and success stories about their products.  I have read stories about folks who sing in choir, and a concert cellist who was able to return to the orchestra after receiving an implant.  I knew that many people cannot hear music, even with a cochlear implant, but I allowed myself to hope that I would be able enjoy music and perhaps even to sing again.  I was told that since these implants are designed, first and foremost, to aid in understanding speech, they are not optimized for music and it is possible that music may never again be a part of my life.

    I still have hope, but as I manage my expectations, I have to remember that sometimes reality can be harder than we want it to be.

Still, we press forward.


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