I got my CI programming and hookup 2 weeks ago. The first part was written 4 days afterwards and I just wrote the second part. I thought you would like to read about my experiences. Please feel free to share with your friends and family. However, I do request that you do not post it to any list, web site, nor publication without my knowledge and consent.
It is now the forth day of listening with my new CI. As you know I had my operation last November and it's been a long wait for me to get hooked up. The operation itself went well and I stayed overnight. The staff at UCSF was great! Common and expected side-effects effected me during recovery. I had vertigo for the first 3 weeks (the first week was pretty bad). In addition, my taste was altered for a while -- food tasted metallic and recently, for a while, my taste was predominately salt. Annoying and funny while trying to drink coffee and wondering if I used sugar or salt!
I am happy to say it's been an incredible four days of listening and absorbing sounds and voices. I can now hear sounds such as the birds chirping and coins clinking into a pay phone. It's been an overwhelming experience!
Last Thursday, Bonnie and I got up bright and early for the 9:00 am appointment with Jan, my audiologist at UCSF. Jan started off with the paperwork, registration and description of the various components of the set of equipment that I got. I had a choice of colors for my headpiece and it was decided that black was the best as it blended in the best with my hair. Jan then showed me my belt worn speech processor and how it works. The headpiece is held in place, via a magnet, on the side of my head where the implant is, and is connected to the processor with a cord. I also have a behind the ear (BTE) processor but it was sent back for a newer model. However, I will not wear the BTE for a while, especially since I'm not done with the programming. I go back next month for a hearing test and we'll know better how well I'm hearing. I will be getting a newer higher resolution programming sometime in April.
Jan then started the programming. She had the speech processor plugged into her computer and started off with simple sounds at low volume. When Jan first turned on the sounds, I couldn't hear anything and my first thought was ooooh my gawd!, I can't hear!! Sounds felt like pressure inside my head. Jan kept telling me to be patient as she had to program me with the sounds and volume. As the morning went, I received more and more sounds and volume. As time went on, my cochlear and brain started coming alive, processing the sounds. We took a coffee break and Jan suggested that I go outside and just listen to the sound. I was absolutely entranced with hearing the various noises, sounds and the nuances within them. For example, I could hear the coins clinking into a pay phone.
We went back again on Friday for more programming and adjustments. Jan said my ear is now receiving the full spectrum of frequencies, from 250 cycles up to 6,800 cycles. Incredible! She gave me a simple word comprehension test and I was able to get all but a couple of words. Now it's a matter for my brain to be able to absorb and process the sounds. I have to learn to hear and to be able to understand voices. We don't know how well I will be able to do so as the process will take several months to a year and more. I do want to let you know that by no means am I 'cured.' I will always be deaf! That said, I am extremely delighted, thrilled and so on. Now, the work of 'training' my brain starts. Bonnie brought me a CD player and Jazz CD. I started listening to the Jazz music and wow! I will definitely be exploring music! The 'training' will be with books on tapes/cds. I will start off with simple children books and go from there. I am and will hear better than I did with hearing aids. How well I will ultimately hear remains to be seen.
It's been a very hard road for me to get to the point of getting a CI, especially to even consider getting a CI. Once I made the decision to get the CI, it felt like a load lifted off me and I felt liberated. I am extremely grateful to Bonnie for her persistence and stubbornness in getting through to me that I should think about getting a CI.
It's now about 2 weeks since my hookup and programming. Everyday is a day of new sound and listening experiences. I've been spending much of my time devouring music! So far I've been listening to Jazz, Mozart and Gabor Szabo. I want to try more Classical and other kinds of music but at the moment, I'm perplexed as to what to get, given the bewildering variety at the stores. What kind of music do you like? I'd love to get suggestions. My next step will be to listen to the Beatles. I have a set of CDs of their early songs with their lyrics so that will be a lot of fun!
The burning question was and is how much comprehension I would have with speech and people talking. I noticed that it has definitely improved. I can now start to understand much of what is spoken on TV with lip-reading. Prior to the implant, my 'TV' comprehension was zip, even with lip-reading. I brought an audio CD book "Winnie the Pooh" and have been listening to it to 'train' my brain. I will definitely buy more audio books -- if you can recommend good ones that would be good for auditory training, please let me know. I've found CDs to be better than tapes.
It's an ongoing process to train myself to listen to voices. I expect that it will improve as time goes on. I just don't know how much it will improve as it is an ongoing process that can take up to several months to a year or longer.
I discovered that people greeted me in low, quiet voices, passing by in the hallways at work. I had no idea! I had to smile ruefully to myself with the realization that I must've come across as rather rude because I didn't respond. I've had lots of CI moments and they've amazed me. In addition, I had no idea that the environment around us is really noisy.
My improvement in my hearing has been incredible and I'm very happy with it. I go in for hearing tests next month and we'll know more how much better they are. In addition, I will receive the new Clarion program that will be released in April. I'm looking forward to it as it will be, from what I read and was told, will be even better than the program I have now.
For those of you who are wondering about the technical details. I have the Clarion CII Bionic Ear (without the positioner) with Platinum BWP Processor. My BTE was sent back for the new model which I don't have yet. My surgeon was Dr. Lalwani and my audiologist is Jan Larky of the UC San Francisco Medical Center.
Bill Zitrin
WolfBZ@aol.com
January 2003