Tuesday, July 14, 2009

Just keepin' it real.

Long post ahead!

I have had a really hard time coming to and writing on this blog for several months. I know it's been neglected...we've had the Walk4Hearing, the HLAA convention, and most recently, I went to the Northeastern Cochlear Implant Convention in Massachusetts just last weekend...and I haven't written much, if anything about any of those events. I really feel bad about that...there was a lot to say about all of those events...but this blog just hasn't been a comfortable place for me to be lately.

I have a really good reason, and I have been hesitant to share for a long time, but it's finally time.

On September 11th, 2006, I went under the knife for the first time to implant a cochlear implant in my left ear. It had been without sound for thirty years, since the time I was four years old. When I lost the hearing in that ear, the doctors told my parents that I had no usable hearing in that ear and a hearing aid wouldn't be helpful, so in all that time, I never heard a single sound in that ear.
At activation, I felt sounds in that ear instead of hearing them. Within a few hours I was hearing sounds but despite the best efforts of my incredible audiologist we never were able to program out the sensation. The best way to describe the sensation that I feel is a jackhammering feeling inside the skull. Not at all pleasant. I toughed it out for a few months and then gave up on it, since I still had a hearing aid that gave me a little benefit in my right ear.

I soon lost the remaining hearing in that ear, and on November 5, 2007 I was implanted in my right ear. Two days before Thanksgiving I was activated and we knew from the first MINUTE that this ear was going to be dramatically different. I could hear voices immediately and was comprehending speech before I ever left the office. Within two weeks I scored a 96% on a test comprising of sentences intoned by a male voice...and I wasn't lipreading. Before the CI I only got about half of what was said...WITH lipreading and the tiny bit of sound I had left.

After I had had that CI for a few months, I started questioning all the problems I had with my first implant. Was it possible that there was something wrong with it? I had a lot of pain and fullness in that ear...was there any possibility at all that perhaps something had gone wrong? I discussed this with all of my family and friends, my surgeon and audiologist, and several of the people that I knew that worked with Advanced Bionics, and after much discussion it was decided that it wouldn't hurt to reimplant that left ear and just see if it made a difference. So in August of 2008 we gave it one more go and I went back under the knife for the last time. Five weeks later I was activated and the results were only somewhat better. I have no pain in that ear anymore, so that benefit was immediately obvious. I still felt sensation in addition to sound, though.

However, this time my attitude was different. I was going to keep that baby on at all times...whenever my right ear was on my left ear was going to be on with it. If the sensation could be defeated, I was going to do it. I was much more determined this time. I was going to be bilateral...I had gone through the surgery twice and I was going to make it happen.

Well, almost a year later, here's the update...being bilateral isn't working for me. At my last mapping two weeks ago, my audiologist and I talked about giving up and going back to my one good ear alone...I have been so VERY frustrated. Because of the sensation that my left ear feels, I have to keep the volume and sensitivity way down. Because of that, I can only hear the louder sounds...my audiogram on that ear is about in the 70 db range, and I have practically no comprehension at all in that ear when it's tested alone. My brain seems to have reassigned a lot of low frequencies to that ear, so I do have a richer, fuller sound with both of them on. However, if I am in a situation that is noisy at all (and I have five children, so just being at home often puts me in that situation) the sound that the left ear gives me is actually a huge distraction to my right. After a certain loudness threshold, everything sounds garbled. I have been VERY frustrated with that situation, simply because when I only had one ear, I heard MUCH better in groups than I do now. I'm a very social person...and I love group situations. I HATE being in groups or on a plane or in the car and having to struggle again when I know how easy it was before when I only had one ear.

If I had a magic crystal ball and it told me that in two years, three years, five years, all of this would magically get better and I would have super hearing, I would have a lot more strength to keep on going. But it has been almost three years since I first implanted that left ear and I am telling it like it is: I don't see enough improvement to keep on doing this when I KNOW I can hear better with one ear alone. This is not an implant issue, or a surgical issue. This is the issue of a brain that went without sound for thirty years, from a very early age, and doesn't seem capable of creating new connections past what it already has.

I have a very supportive group of friends and family, and most of them have thrown out constant encouragements of "Don't quit!" "Don't give up, maybe it will get better!" and the like. And I think it's because of those people that I have stayed with it as long as I have...I haven't wanted to say, "This isn't working for me" and let everyone down. I also love the volunteer work that I do with Advanced Bionics and had fears that a volunteer with a non-working ear wouldn't be of much use to a company whose business is making people hear. It has been so hard to come here and blog...this is supposed to be about bilateral implants! The title and even the link reflect that.

This weekend I went to the Northeastern Cochlear Implant Convention and while I was there I went to a workshop with a bilateral panel. Four bilateral users, all with the Advanced Bionics implants. Audience members were encouraged to ask questions to the panelists about their likes and dislikes about being bilateral. "What is the best thing about being bilateral?" was one question. One of the panelists, who was probably in his mid 50s, spoke up and said, "I don't wear one of mine. I was born deaf in that ear and despite the fact that I wore that implant for 14 months, it never did work for me." I nearly fell out of my chair. Why did they have him on a bilateral panel? What good was his being bilateral if both ears didn't work?

I talked to him for a good while after the workshop and we compared notes. I told him my story and he said, "Thank you for sharing that. I think that people are afraid to admit that occasionally they just don't work. I gave it my best shot and it seems like you have too. I have one ear and it's great and I am thrilled to have that." And those are my feelings. I cried all the way through my sushi at lunch because of the relief of finally admitting it to myself...I can't keep doing this. I can't keep wondering what other people are going to think. I can't keep worrying that someone might be nervous about being implanted after hearing my story. I can't keep keeping on for everyone else. In order to hear my best, one ear seems to be my best option.

I have one more possibility under my belt. There is a very simple programming strategy called CIS that was used a while back in previous implants. It delivers less information at a slower rate, if I understand correctly, and might possibly be able to reduce sensation just enough so that I can increase sound enough to balance those two ears. It's not commonly used and it's a bit tricky to program in so there's a possibility that it might take some doing to make that happen, but after I have tried that (and I am fairly positive that it won't make a difference), I can honestly say that I have done everything I can think of to make being bilateral a success and can walk away with no guilt at all. I talked to a friend at Advanced Bionics today about my volunteer work; did she think I could still be an effective mentor if I gave up? Her reply made me cry:

"...We value you and your experiences and going forward, they will continue to be valuable to all who connect with you, regardless of the direction you move. If you return to being a person who uses one CI, that will be your perspective and the point of view from which you will share your experiences.
...The bigger issue is really what you want to do and need to do for your best hearing experience. It sounds like you have given that tremendous thought and have come to a conclusion that works for you. Whatever you decide, AB, and I think more importantly, you family, friends and those of us at AB who know and care deeply about you, will be completely supportive and behind you 100%.
So please take any guilt or disappointment you think we might have off the table and out of the equation. That is simply a non-issue."

So that is what I am going to do. The next few months will bring more mapping appointments as we attempt the CIS strategy...I should know fairly quickly if that will work or not. If it doesn't, I will have to retrain my brain to bear the entire weight of hearing again. It won't take long but it will require several mapping sessions to get it right again.

I have zero disappointment about not being able to hear with that ear. I had zero expectations of it going in, and after three years, I feel almost a sense of relief to know that the end may be in sight. I may not have surround sound any more, but I will have the best hearing I can have, and, my friends, isn't that what we all want?

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