Making the Decision
In October 2016 I was out for a nice perfect 5 mile run. After a shower I was headed out the door again to take my daughter out to observe a horse competition where she takes her lessons from. We had music playing in the car and I remember as I pulled up the long dirt driveway to the facility. Music in the car has always been a bunch of gibberish, for real, it sounds like a lot of noise and the words I hear sound like it is being sung in a different language. Which is why I usually prefer what I call simple music and I love my kind of music! As I was talking with my daughter, while driving (a feat in itself to be able to do this) I noticed that what I was hearing was starting to sound different. Everything had a different tone. I thought to myself, ‘Oh no, not now, not this again.” This was a beginning of another episode. It has been a few years since the last one. Even though this is something that I have struggled with off and on since I was 7, it wasn’t until 2017 when it received a name. EVAS. Enlarged Vestibular Aqueduct Syndrome. EVAS doesn’t affect everyone the same way. As I would learn from a neurotologist at University of Utah hospital, my case is a little more special. My episodes typically start off with everything sounding “different” it may be sudden, within an hour to a day where everything I could hear, I couldn’t hear any longer. But on top of that, there was a “bad” tone, so so muffled. It was like all the sounds all had one deep note. There was no variation. Then there was the vertigo. This will put me in bed for days at a time with my head fixated to one position, one spot. Can’t even turn my head left or right, it has to stay still otherwise the world will move. Then there was the tullio which is sounds make everything move in my vision. My husband, Jeff not only had to help take over the kids care but he also had to make sure they were very quiet around mommy. The vertigo will usually subside after 1-2 weeks. The tullio usually remains for a long time. In fact, I have it constantly but it isn’t as severe and it is tolerable because to this degree, I am used to it. At about 4-6 months, the variations to sounds usually, very slowly, subtly start to return. My ear somehow is able to heal and my hearing tries to return. Over time however, my hearing has progressively gotten worse.
After that fall episode, I wanted some answers which led me to University of Utah Hospital. It was thought that maybe I had Meniere's disease on top of the EVAS because of the symptoms. I was started on diuretics and other drugs to help decrease the salt levels but it didn’t have any impact on me other than losing a few pounds. That is when Dr. Shelton decided I was one of the few with this special type of EVAS. There is no cure, no treatment but there was a recommendation, cochlear implant.
I have always been closed minded about receiving a cochlear implant. The idea of doing something permanent, to risk all of what I have left, wiped out terrified me. I had always had hope for the future that something better would come out, or better yet, a cure! What if a cure was found and I had permanently damaged my cochlea? Another part is the mechanical sounds. I didn’t want everything to sound like mickey mouse and bells. The cochlea would get sound from an electronic device rather than natural vibrations (very amplified at this point). Music is very important to me, even if what I hear isn’t like what everyone else hears, it is what I know and it is what I love. As I was considering the possibility of just maybe doing a cochlear implant I decided to meet up with a new audiologist to see if I was even a candidate for a cochlear implant. It was a 2 hour test. Sitting in the booth for 2 hours, raising my hand every time I heard a beep and even when my head makes up a beep. Then it was words, then it was sentences, with noise, without noise. When it was done, she said, “You are a mother, a nurse, a wife, trying to live life, you must be exhausted!” Here was someone who had an idea of what I was going through. Even though she could hear she knew. Just acknowledging what I was feeling helped me feel a little better. With how little I could hear with the assistance of my hearing aids. I was only hearing 15% in a very clear, noiseless sound booth. Trying to hear day in and day out, trying to concentrate, understand, fill in the blanks. I am tired. I am tired of trying to hear.