Sunday, October 14, 2007

A New Bilateral Map

Last week, on my day off (Columbus Day), I went to the University of Tennessee in Knoxville to have my processors mapped by a new audiologist. Now that I have settled in with my bilateral cochlear implants, I am free to choose the audiologist for my mapping and maintenance service. I know I've said this before but the most important relationship that a cochlear implant patient has is not just with their doctor who performs the surgery but it is with their audiologist who programs the processors, provides therapy, and other ongoing maintenance. This is a lifetime relationship. There is no question that there is a shortage of audiologists that are trained to work with cochlear implant patients, especially in our area. I was not completely happy with the service that I was receiving from my doctor's audiologist (and office) and have made the decision to go elsewhere for my processor needs and therapy.

Julie, at the UT Department of Audiology, is my new audiologist and she is wonderful! She normally works with children but several adults in our area have found their way to her and have highly recommended her. She says she enjoys working with adults because they give her feedback that the children can't. I had been trying to get an appointment with her for over two months but we could never make our schedules work because we are both so busy. My session with her and her graduate student was over two hours and I was exhausted by the time we were finished. I'm used to one hour appointments but not 2 1/2! But, Julie worked her magic on my processors, made some suggestions based on what I had shared with her, changed some settings and parameters, and fixed some mistakes that my previous audiologist had made. She also gave me a new program to try at a faster rate. (But I am not crazy about it and will probably go back to my original rate.)

What was interesting was that she could not get an NRT (neural response telemetry) for my left ear, which is the implant I received two years ago. For those of you who don't know what this means, it is a test that is done to directly record neural responses. Surgeons use this test to make sure the implant is working properly and is effectively stimulating the hearing nerve fibers in the inner ear. It a quick test and is done in a matter of minutes.

Audiologists use this test, also, when mapping children because it sets up the progamming parameters automatically and speeds up the mapping process. (Children cannot always sit still like adults can.) During a NRT test, an electrical signal is sent to the implant electrode and the activity in the hearing nerve is recorded. All of the 22 electrodes of the cochlear implant can be measured if required. This NRT test can be performed during the cochlear implant surgery and at the follow-up appointments any time after surgery.

Because of some previous errors in the programming of my left processor, the map could not be read on Julie's computer, even though she could see the rest of the information (serial number of processor, map numbers, my name, etc.) When she started the NRT test on the first electrode, it sounded like a telephone ringing in my ear. Then, my eye and face started twitching involuntarily and got worse in a matter of seconds. I told her my face was shaking and acting funny and she stopped the test right away. Then she moved to a different electrode. Same thing. We did this with all of the electrodes and still could not get a reading and my face was doing strange things every time! The test was affecting my facial nerve. I've heard of this happening to other CI patients when they get their processors mapped but have never experienced it firsthand. It felt like I had a paralyzed face that was out of control and it was giving me a headache! Luckily, I had my previous map with me on paper (I get copies after every session) so she put the parameters in the computer manually. Then she adjusted them and continued with our mapping session.

My right ear is my newest implant and I favor it. It was my favorite ear when I had hearing aids, too. I had a NRT performed on it back in March and got an excellent reading on it a week after my activation on that side. Julie wondered that maybe we could not get a NRT reading on my left ear because it is not my favorite side. So, the next time I see her, we are going to try a NRT test on my right ear (we ran out of time to do it.)

One of the things Julie did differently was that after she "tweaked" my map a little bit, she held a magazine over her lips (so I couldn't read them) and read a paragraph out loud to me. Then she made some more adjustments and read the same paragraph again. I had to tell her which one sounded better. Kind of like an eye test for glasses. We repeated the process several times until we settled on a map that sounded right to me. I even got more words each time she reread the paragraphs.

After a few days, I could tell a huge difference with how I was hearing and what I was hearing. It took awhile to get used to the new settings. They were so different that I've had to turn down the sensitivity and volume on BOTH processors. I'm hearing things more clearly and distinctly and am picking up more words and sentences on the radio and phone. I also feel more balanced. I feel like I got new ears like a person gets new glasses! My bird clock sounds better and so do the birds! Their songs are different, too. I don't know if it is because of the cooler weather or if it is because the crickets are quiet again. I am sitting outside as I write this and can hear the wind in the trees - it is such a soothing sound.

My previous audiologist had told me that I would not need another map for at least a year but after four months, I knew things were changing and not sounding quite right. I've taken charge of my hearing health from the very beginning and knew what to expect and what to look for. If I had not done my research or found the support groups that I have with other cochlear implant patients, I would have been lost. Sadly, that is not the case with everyone and there are those who are disappointed with their implants because they can't hear right or have not received the proper care in their mapping sessions.

Cochlear implant surgeries are not money makers for surgeons or their hospitals. This is hard to believe because the surgery and equipment is so expensive (over $70,000 per ear). The surgeons and clinics get their income from their patients' follow up care appointments through their audiologists. So, it is very important for surgeons to have competent audiologists on staff who are trained to work with cochlear implants. The decision made by patients to have cochlear implant surgery is not made lightly. CI patients have a right to proper and adequate professional care afterwards because, after all, it is a lifetime relationship.

Julie told me that cochlear implant patients should be mapped at least every three months during the first year. So, I will see her again in January, after the Christmas holidays.

But, every day is Christmas for me because I can hear!


Anonymous said...

Wow, just wow!
I love that you find the sound of wind in the trees soothing, that says so much for the implant and particularly the wonder of a good map and a fantastic audiologist. So glad you are a take charge person and found Julie! I would think she enjoys the adult patients tremendously since she can't get that feedback from children. I'd love to take Ethan to someone who also saw adults because the learning curve from the feedback they provide would surely affect the mapping choices made for the youngest patients. (I LOVE our audiologist too!)

Thanks for taking the time to share that experience, it was so eye opening for me.

Laurie said...

This was a learning experience for Julie, too, because I gave her confirmation on some things that she had been doing with children. For example, she automatically puts the ADRO program in every child's processor. I told her it was my favorite program and heard the best with it. She loves her adult patients as well as children. In fact, my surgeon has been trying to "woo" her to his office with no luck!

Anonymous said...

I do love having the audi and surgeon on the same team. It's great to have everyone on the same page with E-boy, particularly since he can't tell us for himself what is going on in his head/ear.

I'll be interested to read a future post of yours telling us about the left ear and NRT responses.

That must have been totally bizarre to feel your facial nerves going out of whack! Yikes.

(oh, and that fair was in Lancaster, the Fairfield Co. fair is the last one in Ohio)

Laurie said...

I'll let you know about the NRT for the left ear when I have it done again in January. Don't worry, nothing is wrong with the implant there. My previous audiologist had labeled it the right ear when it was actually the left so something happened to the map after my right ear was programmed (which we did first)!

Abbie said...

Wow Laurie, I just loved reading this. Sounds like this audi is a keeper! She sounds very thorough and genuinely listens to what you have to say. That must be such a comfort to you. I'm so glad you found her and I will be looking forward to hearing all about your tweaks and twangs! :)