So I have been keeping a secret.

I have a favor to ask–after reading this please to not call/email/contact Vanderbilt about this study.  As of this writing they do not have all the particulars worked out to bring more  people in for the study so please do not contact them.  When the information is available, they will post it on their website and hopefully I will remember to post it here on my blog as well–someone will find out and let everyone know asap.  Thanks for your understanding the situation.

I am honored to have been selected as one of the first outside of the Vanderbilt family to participate in the Vanderbilt University cochlear implant study we learned about in March (http://news.vanderbilt.edu/2013/03/high-fidelity/). Because of this I thought it might be important/interesting/helpful if I blog about the experience so others can share it along with me and learn more about what is going on. Below is my introduction to my experience—I am writing this on Monday before my session on Thursday, May 2.

I promised that I would not share this with the cochlear implant social media world till Vandy gave me the OK. I was told that when the press release was first published Vandy was inundated with calls, emails, inquiries from all over the world (South Africa, Sweden, Pakistan, Australia and US) including some high profile users who will remain anonymous in this blog. I don’t think they understood the power of cochlear implant social media when they released the information. Never one to be left out, I too emailed them asking about the study and received the same reply as everyone else.

So the question becomes, how was I so lucky to get invited to come so early in the study. It has been very hard keeping this secret while the cochlear implant social media has been exploding with excitement over the possibilities this study may bring but I’m proud of myself for once keeping my mouth shut—I did give a few hints. I owe it to a lovely ENT resident physician who happens to be my favorite daughter-in-law—love ya Britni. You know how life is, sometimes you are just plain unlucky and then once in a while you get lucky and this is one of those cases where luck was with me. I was telling Britni about how excited everyone in the cochlear implant community was about the research and it just so happens that she was working with Dr. Robert Labadie, director of the study. So since I am her favorite mother-in-law, she asked him about the study and told him I was interested and thus my Vandy journey began.

Britni told me what I needed to be accepted and I set out on a mission to gather the data and get it ready for Vandy. Within a few weeks I was contacted by D r. Labadie’s research nurse and asked to come to Nashville for a CT scan. The nurse knew I would be in Nashville for Easter weekend and arranged for me to come to the hospital at 4 pm on Friday. Unfortunately, spring break traffic was horrific from Ohio to Nashville and what should have been a 6 hour trip took almost 8. Although we were late, the nurse graciously waited on us and the CT scan was completed—took all of 15 minutes. I also brought with me my pre cochlear implant CT scan and they checked it to make sure the images were clear enough to be used—this scan needed to be in a specific format or it would not have worked. I was told that the study group would look at the scans and my current maps and in about two weeks if everything was OK they would contact me to set up a time to come back for my first session/mapping for the experiment. Since everything looked fine on my CT scans and a mapping strategy was put together for me by the team and I was asked to come back May 2 to begin the next part of the study.

Coincidentally, I was sent by a researcher friend (not by anyone at Vanderbilt or associated with Vanderbilt including my daughter-in-law), a copy of an unedited article on this research that has been accepted for future publication. Although I don’t consider myself a geek I do like reading the research articles and many times I don’t understand the lingo but get the jest of the article. Interesting that it appears I MIGHT get the new strategy in only one ear. This especially interesting to me because I know I hear better in noise with two cochlear implants than with just one so the thought the two ears being programmed differently to give better results was intriguing (when I say differently I don’t mean just different T and C levels but a totally different approach). The other thing that is interesting to me is the fact that I have two electrodes turned off on my left side. These electrodes are turned off because they cause pain if turned up very loud. The reason I find this interesting is when given the option of turning them off completely or just turning them way down I thought turning them off completely gave me better sound quality. My experience seems to play right into the Vanderbilt study as they too turn electrodes off and people are reporting better sound quality in noise. I do not have a link to the article but will try to post later.

I will post more comments when I return home in a few days. I am trying to keep a diary to thoughts about it.

Thanks again for not contacting Vanderbilt and bugging them.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s