Sunday, January 1, 2006

Hi!! Welcome to my CI blog! If you're here for the first time, let me quickly tell you a little about my story!
I am a 37-year old wife and the mom to five beautiful (hearing) children. If you want to get to know me better personally, I'd love to hear from you, either in an e-mail or through the comments section. I have another blog here. I update it pretty frequently and brag about my kids a lot ;).
I lost my hearing when I was four years old. It happened within minutes, and the cause was never determined. My hearing did fluctuate a little over the next few months, and when the dust settled, I had no usable hearing in my left ear, and only about 5% hearing in my right. I was fitted with hearing aids, took lipreading and sign language classes, and started off to kindergarten that fall.
My hearing remained stable for over thirty years, so I was content to do what I'd always done...wear hearing aids and lipread. However, in March of 2006 I got a rude jolt when I suddenly lost several decibels of hearing right in the middle of a conversation with a friend. It never came back.
I panicked, obviously, and since my hearing was considerably poorer, I knew it was time to move to the next level: cochlear implants. I had my CI evaluations at Bill Wilkerson Hearing and Speech Center and at St. Thomas Hospital in Nashville in June of 2006. I assumed before the evaluations that Dr. Haynes would want to implant my better ear, since I had had absolutely no usable hearing in my worse better ear for 30 years. Based on my comprehension scores, however, he opted to go with my dead (for over 30 years!) left ear. He reasoned at that time that bilaterals were becoming more common and we could always do my "good" ear later, if we so chose.
After weeks of careful research, I decided to go with the Advanced Bionics HiRes 90K implant. At the time I knew that there was a new processor on the horizon geared towards music lovers, and I wanted in on that. AB also seemed to be leading the pack in technological advances, and their customer service was out of this world...whenever I contacted them, I was actually put in touch with PEOPLE, and they all seemed to be caring and helpful. I was sold :).
It took a couple more months to get insurance approval (par for the course) . When that finally happened, though, due to a lucky last-minute cancellation, I had my surgery less than two weeks later, on September 11th, 2006.
I was activated on October 10th, 2006. It was nothing like I imagined it. I didn't "hear" sounds; rather, I felt vibrations inside my head, jackhammer-style. It was not entirely unexpected; in the sound room during the CI evaluations, I was given a hearing aid for my left ear during the testing, and had the same horrible vibrating sensation whenever the tones were played. This was referred to as a "vibrotactile" sensation. Both Dr. Haynes and my audiologist, Susan, were confident that this would get better over time, and they were my first mapping sensation after activation, the tones had a distinct musical quality about them, and the vibrations weren't as strong.
I had a difficult time wearing my hearing aid and the CI together. It was very frustrating trying to deal with the vibrations from the CI and the tinnitus that had developed in my "good" ear. And soon there was another wrinkle: The hearing in my "good" ear started fluctuating wildly, sometimes several times a week. At this point, in frustration, I more or less gave up on my CI. Right thing to do? Probably not. But I wanted to enjoy what little hearing I had left while I had it, and I did.
It didn't last long. One Sunday morning in church, at the end of March 2007, I heard a sharp "pop", then heard raging tinnitus in my good ear, then things gradually started getting quieter and quieter. I figured it would come usually did...but two weeks later, I was forced to accept that it was gone.
At that point I went back to my audiologist, had another mapping session, and handed over the hearing aid. From that point on, I never wore it again. Without the competition from my so-called "good ear", amazingly, my CI flourished. I needed another map a week later because the previous one wasn't loud enough anymore. That was the first time that had ever happened. About two weeks later we were in the car and my son said something from the seat behind me...and I understood him. It was just short of miraculous...I could really hear!
I still have a strong vibrotactile response, which is not due to any flaws in the implant itself, but due to the way my brain responds to stimulus. For this reason, I have never been able to tolerate high sensitivity levels, which prevents me from getting really good speech comprehension...very frustrating and uncomfortable.
In December 2006, when I went back to see Dr. Haynes for a post-surgical checkup, his parting words to me were, "Just let me know when you're ready for a second implant!" I started seriously thinking about it around that time, but was hesitant to go "whole hog" because that would mean giving up my beloved music for at least a short period of time. In March 2007, however, when I lost my residual hearing, it was no longer a valid argument, so I immediately started the process to get a second CI.
My insurance company, BlueCross BlueShield of Tennessee, initially denied my claim, saying that a second implant was not considered medically necessary. We appealed that claim and waited. On August 13th, 2007, I found out that they had approved my fact, they changed their policy entirely, so that everyone in the state of TN that wants bilateral implants can have them...isn't that great? On November 5th, 2007, I had my second CI implanted, and on Nov. 20th, 2007, we switched it on....and I could hear...immediately...and well, at that (YouTube video here). In the first two weeks with that implant, I gained speech comprehension that was better than any I had ever had before. I wish I had done this years ago. We had the usual bugs to work out trying to get the sound "just right" but I am amazed every day at the marvel of technology I have in my has not only given me my hearing back, but it has given me even more than I had before....incredible! I am a huge advocate for cochlear implants...I have seen firsthand the difference they have made in my own life, and I wish everyone could see for themselves how incredible they are :)
I am having my first implant replaced on August 28th, 2008, due to problems that we can't seem to sort out. I am not expecting the reimplant to fix everything...but I am hoping that I will be able to tolerate it better. If my brain and that implant never do learn to play well together, I am ok with good right ear has far exceeded any hopes and expectations I ever had.