http://vestibular.org/sites/default/files/page_files/Documents/Cognitive%20Aspects%20of%20Vestibular%20Disorders.pdf
She confirms many of the issues that I have discerned on my own and mentioned in previous blog posts. I have also developed her coping strategies. (Except "listening instead of reading" due to the double whammy...my hearing impairment.)
In a previous post, I told you that, after three tests, I finally qualified by Medicare/FDA standards for cochlear implants but chose to not go through with it because, for the first time, I was told by the audiologist that the procedure could cause worsening balance. I've changed my mind. At a recent appointment with my Neurotologist/Implant Surgeon, he pointed out that balance function is seldom even checked in implant recipients because it isn't usually an issue and that I have so little vestibular function that any further loss would hardly be noticeable, if at all.
I have asked the question "how many holes can one have in one's head?" in regard to a new study of vestibular implants. In other words, can I have an implant to improve my balance as well as an implant to improve my hearing? My Neurotologist said that he doesn't know; that no one is yet walking around with those things; that they are in the beginning stages of the study as cochlear implants were decades ago. He pointed out that of my two problems nothing can currently be done for my lack of balance, but that implanting a cochlear device to improve my hearing CAN be done, NOW. Because Medicare will cover it since I understand less than 30% of what I hear in each ear, he called it "a $50,000 gift from society."
I have pondered the pros and cons and asked opinions of close family and friends. We agree with the doctor that the cons seem to be minimal. A hearing aid in the right ear does little to improve my hearing and aids do not compensate for cochlear loss. On the pro side, while a cochlear implant will not restore my independence, it will make my dependence a lot less confusing and frightening.
A couple recent examples of fright and confusion due to my hearing impairment:
On the return trip, at our connecting point, weather disrupted service and the airport was filled with thousands of stranded passengers including us. Being jostled around in crowds is a nightmare for one with a balance disorder and even more frightening and confusing when you can't hear. I was momentarily left alone in the departure lounge when, after an announcement that I couldn't understand, people began to move about. I asked the woman next to me what the announcement had been as she was rushing out of the area and I could not understand her response. I checked my smartphone app and learned that there had been a gate change, but I couldn't leave the area without the rest of my party. When they returned, we rushed to the new gate, weren't boarded and had to return to the gate we had just left to wait for the next flight.
We weren't boarded on the next flight and had to overnight at an airport hotel. With so many stranded, my son was lucky to find a single room for us with two beds. Once at the hotel desk, I whipped out my credit card to pay for our room. Meanwhile, my son was right next to me in conversation with another front desk employee. I thought he was just signing us up for the morning shuttle and was thoroughly confused when they handed him back his credit card and a room key. Again, because they weren't speaking directly to me, I had no idea that a 2nd room had been found.
Friends have kindly told me that they want to help but that I must tell them what I need. I have been negligent in that and have since spoken to my son and grandson and told them that, in situations like that at the airport, I need one of them to stay with me and, in situations like that at the security check point and at the hotel, I need to be spoken to face-to-face, "Mom, this is what is happening..."Despite the problems, I love my one-on-one time with my son and grandson. My son has always been able to make me laugh, sometimes at the most inappropriate times and places, and my grandson is very sweet and attentive.
We ended up renting a car and my son drove the remainder of our trip to get us home that evening. I was able to just lounge in the back seat while he did all the work.
I've notified my Neurotologist's office of my decision and am awaiting word from his assistant as to when my implant surgery will be scheduled. He is booking about 2 months out, so it will most likely be mid-October.
