Why did I decide to do bilateral cochlear implants and also do them at the same time?
My process started 5 years ago, when I was finally realized that hearing aids were not going to help my hearing. It took 4 years to accept that I was going deaf. When I finally called for my appointment at Vanderbilt Medical Center, I had reached my point - accepting the next step. My appointment was June 6, 2006. I went through a series of test with my Audie, a CAT scan, and a doctor's appointment with Dr. Labadie. By 3 o'clock I found out I was approved for Cochlear implants. I know people who go through months to find out if they are even candidates. I found out within hours. Then I met with Dr. Ladabie. He explained my choices - one or two implants. He explained about risk and procedures. I listened and asked one question - what is the differences between one and two implants? He brought up sound location and noise discrimination. Then I asked this, if I wear two hearing aids then why not wear two cochlear implants? He said most people wear one, but research states two can be a benefit. To me it was a no brainer, get two now and not do one at a time. Plus I also hoped to get in a research project to help with the cost of surgery. So I left Vanderbilt with my three kits one from each company - Med El, Advanced Bionics, and Cochlear. Off to research and decide.
I chose Advanced Bionics. My reasons behind it was not research base or technology. I'm sorry to say I went with two things the rechargeable battery and the looks. I loved the look of the T-Mic and the batteries. I figured this, I have to wear these for at least the rest of my life, so why not pick something I like the looks of. I felt all were fantastic, but go with looks. I am so thankful I did make this choice, they are fantastic.
Denied, Denied, Denied.......My insurance denied my second implant based it being investigation. Vanderbilt filed several appeals for me and each one was denied. My next step was to asked for help. Let Them Hear is an organization in California that fights insurance denials for cochlear implants. They took my appeal and fought for me. They kept in contact with me, even as I was making the decision to just do one implant and move on. I must also say my insurance trust also was involve with the appeals and working with BCBS to have this approved. I can't express how many people put time and effect to get this done. I am overwhelmed to this day at the people at Clarksville Schools and Let Them Hear Foundation, who did this. They were so unselfish in this quest. My quest.....thank you.
I finally had surgery July 19, 2007 and activation on August 8, 2007. These are two dates that I will forever remember. They are embedded into my mind just like the birth of my daughter. What has bilateral implants given me? It gives me a surround sound, location of sound, and two ears that work. Separately the ears don't seem to give a complete crisp sound, together they work together. Music is easier to listen too. I can tell which child is talking in class or asking for my help. I hear this pss....Mrs. Deleon how do I do this.....pss....can I go to the restroom. So in my career it is a benefit for bilateral.
I hear this all the time, the myth and the questions. So the choice was mine. My family assisted in deciding, but in the end it is my ears, my body, my choice. I also chose to support families that make this choice for there children. I know how hard it is to make this choice. I took me 5+ years.
The big differences in my success and failure were my expectations. I know I don't have "normal" hearing. My expectations were to be able to have a hearing conversation with my daughter. My cochlear implants have given me more than that.
This blog has allow me to accept my deafness and the journey it leads me on. I have met some fantastic people. I have changed my views on a lot. One thing has not changed, that cochlear implants are a personal choice and we as a community should provide support and accept others. Discrimination either deaf/Deaf, Hard of Hearing/hard of hearing. hearing/Hearing just destroys Culture and Communities, we can't let it destroy or divide ours.
I want to include a few articles and web sites that provide resources that I use.
http://www.cochlearamericas.com/PDFs/outcomes_using_bilateral.pdf research from Cochlear
http://www.alldeaf.com/ forum
http://www.bionicear.com/printables/reimbursement/BilateralCIBibliography-092006.pdf research on bilateral implants
http://www.cnts.ua.ac.be/Publications/2004/SGDDDYG04/publi069%20to%20print.pdf interesting article
There are so many more, this is just a few.
http://contradica.blogspot.com/ My favorite blog in the whole Internet
8 comments:
You're such an inspiration! Teaching is a tough job. I cannot imagine teaching while being deaf, but you prove to me that deaf CAN DO! I agree about the bilateral implants. Everyone I know who has gone bilateraly is very happy with the results. I'm still on the fence about the experimental hybrid. Thanks so much for blogging out your thought process on this. Kim :-)
Thank you so much for sharing. Valerie! You are my hero for going through all that with BlueCross...when it was my turn I hardly had to wait at all...because you had done all the work. THANK YOU! :)
Thank you for sharing your hearing journey. I look forward to reading your CI Activation.
Thank you for taking the time to fight the battle to be bilateral.
It's a blessing to meet people like you!! Thanks for sharing
Kim
As I read this entire post, the one adjective that comes to mind is strong. You are indeed a classic example of a strong willed woman. I sit here and I get weak in the knees just thinking of doing both ears at once! I can't comprehend how you went to school everyday and taught those kids but somehow you did it and it is absolutely mind blowing!
The strength that you possess as a deaf woman, a mother, a wife, and a teacher are truly admirable qualities. You rock my socks val! :)
Let us know how your activiation goes.
BTW what is a T-Mic? You chose your brand based on the look of that. I don't know what it is.
Felicity
Hmmmm...
Makes sense to do the bilateral CI at once. My son still talks about it but I don't pursue it with him... I just ask him if he'd like to read the CI blogs to have an idea and often he says "later", so I leave it alone... he is still happy with his hearing aids (he has progressive hearing loss and it is a matter of when his hearing aids would no longer benefit him.)
BUT... for me... hmmm... I like hearing sounds (I wear AVR's ImpaCt aids and I love hearing high frequency sounds except for my children's yelling when they fight... grrr...) The audiologist informed me a few months ago that I might be better off NOT getting CIs because my aids benefit me greatly. Soooo....
Thanks all....I never looked at teaching as difficult with my hearing loss. I just wanted so much to be a teacher, really be a teacher, so I did. Others are more in awe then I am. I just hope I get to do it for a long time. Teaching is my life.
Karen, I hear the new hearing aids are fantastic for high frequency loss. I had almost no hair on my cochlear and I could not benefit from it. Wish I could have. Also you have auditory memory from wearing hearing aids and that is a big benefit if you ever change aids or for cis.
Jen, thanks and good to see you. I am glad that you did benefit from the change in policy at bcbs. They were ugly.
http://www.bionicear.com/Products/Harmony_HiResolution_Bionic_Ear_System/Connectivity_Options.cfm?langid=1 Is the site to see what a t-mic looks like. I love it.
Even though I've met you, I haven't read this until now. Thanks for your pioneering in the bilateral CI issue! It is a no-brainer to me too. I live here and now, and want to make the most if it. Not halfway ;-)
Give me both at the same time thanks... It remains to be seen if they will allow that her in Norway... I'll fight for it, thanks to people like you who went and did it and then shared your knowledge about it afterwards...
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