New CI info website

A Call for Help Gets Answered

CochlearImplantHELP.com, a new and comprehensive website aimed at helping current and future users of cochlear implants and their families, announces the website launch today.

A need was identified to help others better navigate their journey to receiving a cochlear implant, whether for themselves or for a family member such as their child. And cochlearimplantHELP has been created to help them wherever they are on their cochlear implant journey.

Whether just starting to learn about cochlear implants or a seasoned cochlear implant user looking for ways to connect to a favorite piece of electronic equipment, cochlearimplantHELP has what you need.

Please take a few moments to peruse the site, and feel free to link to it or share it freely. CochlearImplantHELP.com can be found on the World Wide Web at

http://cochlearimplanthelp.com/



Check out this site! Pretty neat stuff.

MAPping today!

Had a MAPping appointment with the audie from Denver today. She makes 2 trips up to Wyoming each year to do MAPping appointments with her Wyoming clients, once in the spring, and again in the fall. It's really great she does this.

My grandparents drove down as they were curious about the process. They arrived at my apartment and we hung out for a bit, chatting and playing with my crazy dog. Then we took off for the Special Ed. Services building, as the CI audie likes to "take over" the school district audiologist's office and sound booth. My appointment was at noon. My mom, sister and nephew were already there just hanging out. My sister was curious of the process too, and mom pretty much kept the nephew busy during my appointment.

Got into the office and sat in a chair. Allison swapped out laptops (the client she saw right before me has a Cochlear device). She now has to bring two laptops, one for Cochlear users, and the other for AB users. She got my Harmony hooked up, but the computer wasn't picking up on it at first so she had to make a phone call. But soon enough the laptop was reading my processor, yay! She was a bit nervous as she had a client coming from another town who is also an AB user as well. She brought up the high frequencies a bit, in hopes I would be able to pick up on the 'S' and 'SH' sounds better, and loaded up ClearVoice! My old Program 3 is now Program 1 (I was on Program 3 for about a week), Program 2 is similar to 1 but with the bumped up higher frequencies and CV Medium. Program 3 is higher volume of Program 2.  And on the Neptune, we decided to add 3 more programs to it (same as 2/3 on the Harmony, but with even more volume). She says maybe by May or June, I will probably have to send her a processor so she can add more volume or whichever and send it back to me, then I'd see her again July 13th.  I also gave her a copy of the DVD of my implant activation, and she asked for my permission to use it with other clients or something. I told her go for it, use it for whatever! Gave a copy to my grandparents as well.

Allison also tested me real quick in the sound booth. Just playing the tones and seeing if I could pick up on them. I was getting up to 50-75 dB range, but nowhere near 25 like she was hoping, but it's still early yet. Says to take it easy with the auditory training, to not rush into it or train too hard. Oh no problem there. I haven't even been doing the Listening Room CLIX traning on a daily basis. Maybe every other day or so. It depends on how I'm feeling by the time I get home in the late afternoon (if I'm really tired or not).  Also did a quick test of 'baseball' or 'airplane' first, then eventually 'baseball' and 'toothbrush'. Ok, toothbrush and baseball is still reallllllly tricky to figure out, but I already knew that just from the Clix practice, getting words mixed up on that too. I'll get it eventually, will just gave to keep working at it and letting the brain figure everything out.

Then I was done! We left and headed to the ihop for lunch. I realized I was hearing the air conditioning going in the car, so I turned off my hearing aid, pulled the headpiece off then put it back on. I heard the AC, then it tuned out! Kind of cool. I did start getting a bit of a headache on the left side of my head during lunch, so I turned down the volume.After lunch, grandparents dropped me off at home so I could get going to work. Drove to work with my windows rolled down for a short while, didn't hear the windy sounds. And at work, I don't have to listen to the AC going. Before, without clearvoice, the AC was like a "whrrrrrrrrrrrrl" going on in my head, but now, nada. CV is quite neat! Have since been very slowly turning up the volume a bit to see how I'm tolerating Program 2. Am to keep an eye on any face twitching going on too, as sometimes the stimulations from the implant's electrode can sometimes cause the facial nerve to twitch/react, which hasn't happened yet.

Listening practice

Tonight I decided I needed to check out the Listening Room at HearingJourney.com.  First, I just browsed around, seeing what the Listening Room had to offer. Navigated my way to the Teens/Adults section, Listening Activities, Discrimination Activities. Ooo Clix! I've heard/read of that while lurking through the HearingJourney.com forums. So I downloaded the Beginner's Clix program, and got that up and running.  I did the 10 lbs Warm Up first, repeating the sounds so I could get an idea of what they sounded like. Then I did the Test - On Your Own, which covers all 10 levels. Certain words or sounds were very tricky, but I ended up scoring 70%, which I think is not too bad at all! And I am hearing little bits of speech sounds here and there. Like 'aaaAAAaaa', I'd hear the AAA portion more than the aaa's. That sort of thing. Very interesting. I am really happy with the Clix program so far, and will continue to work with it. I wasn't hearing ALL of the sounds or words, just little bits here and there. Mostly I was experiencing the sensations, so during the test, I'd listen, look at the words, repeat the word/sound if necessary and click on what I think the word/sound is. It's definitely a tricky process, but hey, my left ear needs all the practice it can get, right?

I even played with Cochlear's Hope app on my iPod touch for a bit tonight as well. I have the lite (free limited) edition, which you can download to your ipod touch/iphone/ipad from iTunes or the App Store. I forget how much the full app costs, but I figured the lite edition would be fine for now. It may be more aimed for kids, but it's still listening practice. There's a picture that comes up, with a word under it. You tap the screen and the device will say the word. I will tap the picture a few times to repeat the same word over and over.

There is also another app available at the App Store/iTunes that's free and called Hear Coach. It's made by Starkey Labs, and several folks from HearingJourney were raving about it. I tried it the other day but couldn't make sense of anything so I think I'll wait and try Hear Coach again another time. Just level 1 is overwhelming for me so far.


I also got out my Phonak FM unit (the Handy-Mic transmitter, and the mlx receiver that I originally got with my Phonak Supero hearing aid), and it works great with the Neptune! That was a fun experiment. Have the transmitter charging up so it's ready to go whenever I want to use the FM.  I used the  audio interface cable that was in my Neptune box and plugged the Neptune into my laptop for the Clix program. Works great too! Of course, if I want to use the direct connect with either processor, I have to use it with battery operated devices. So I can use it with my ipod touch or my laptop if they're not plugged into the wall.




Here are the scores I got tonight:

1 week since activation

It's been 1 week since activation. Still hearing electronic tones and feeling sensations for sounds with the implant. I have been noticing though, if I wear my hearing aid alone, it's fine and I hear "normally" with the hearing aid. But as soon as I put the implant processor on, it's like as if the volume on the hearing aid has been turned down. Is this because my brain is trying to balance out both ears? It gets so confusing as it's still tones and not actual sounds in the left ear, and normal sounds in the right. As soon as I take the head piece off, hearing aid ear is back to normal again. Just find that interesting. I've also been trying to keep the hearing aid turned off as much as possible so the left ear gets all the practice. I have slowly worked my way up to Program 2. For a few days, I would start off at Program 1, and when I feel like I'm not getting much of anything anymore, then I'd bump up to 2 with the volume turned down, and slowly turn up the volume. Yesterday and today, I've been starting off with Program 2 with the volume down, easing my way up to the 12 o'clock position with the volume wheel.

I've also been feeling something poking through the skin behind my left ear, right along the groove in three different spots. Definitely feels like some stitches have been left behind. I had my primary doctor look today, and he says there's definitely something (he couldn't pull them out, they're kinda stuck). He was thinking they were just scabs at first, but then he took a closer look with tweezer and more lighting and yep definitely seems like stitches left behind. Have sent a message to Kelsall's assistant and am waiting for a response.

I think I am hearing the turn signal ticking in my car when I drive (I've been keeping the hearing aid turned off in the car). At first I could just feel it, but lately I think I'm starting to hear it a bit. It's like my brain knows the actual sound it's making from the right ear so it's connecting it to the left ear. I can't tell if I am definitely hearing it, but it seems like it. Definitely slow progress!

Turned on!

My implant was turned on today! Such an exciting day!

We made the trip down to Denver yesterday. Got up at about 7:30ish and got going. Made it over to the implant center and waiting for my 9 a.m. appointment with the audiologist Allison. She ran a bit late so we weren't take to her office until about 9:20 or so. That was fine. We got situated in her office, and Allison brought in 2 suitcase-type boxes, and both of Advanced Bionic's monkeys, Buddy and Melody! Oh I figured I'd see Buddy, but I certainly wasn't expecting to see Melody too! So that was pretty exciting. I got my video camera ready and handed it over to my stepdad so he could record the actual turn-on. Allison dug through the boxes, pulled out the Harmony pieces needed. Got a Powercell plugged into the charger so it could charge up while we were getting the Harmony processor tuned up and loaded. One magnet was definitely not enough to keep the headpiece on, so she had to get another magnet out of her own box (apparently the OR lost a magnet when they used my headpiece to test my internal implant during surgery...!).

My Harmony was connected to the computer, and Allison ran the NRI test. She said she would run the NRI test again after about 10 minutes, so we could see the difference in numbers of the electrodes' responses. One electrode had a high number (24), so she thought there was an air bubble or something. Then she ran through the volume/sensitivity levels, and I started feeling and hearing the beeping going on. Whoa, weird sensation. When we got to the higher frequencies, I was overwhelmed pretty quickly, so Allison kept the high frequency levels low enough for now. Got everything loaded, ran another NRI test so we could see the difference in the numbers (the electrode that had the 24 number dropped down to 6.4, which was much better!). Then she turned me on! Stepdad recorded my reaction and all. I was hearing beeps for every sound that was going on, and feeling a lot of pulsating going on in my head. My brain even felt like it was vibrating! Very weird stuff. Even felt like a heart beat going on in my head for a little while there too. Allison played with the volume some more, saved that set for Program 1, and increased the volume for Programs 2 and 3 so that I can work my way up over the next couple or so weeks.

She then unhooked me from the computer, and had me play with the dummy Harmony so I could get a feel for how to take it apart and putting it back together while she loaded the programs to my processor. Then I put it on myself, took me a few seconds to find the magnet in my head of course. I'm sure once I've gotten enough practice, I'll get the headpiece on in the exact right spot without hunting around much. Yahoo! I've been turned on! Put all of my random accessories/pieces back into their respective boxes, and handed them over to my stepdad to take out to his car.

Loaded up stepdad's car, then mom and I got out again so he could take off to get to the wholesale house to pick up some things for his flower shop. Mom and I walked down to the Copper Pot for lunch. Burgers and mac and cheese, and oh it was quite a tasty lunch. I randomly turned off my hearing aid here and there, just to "listen" with the implant. Still just beeps, which is to be expected. We then found a Walgreens, got a couple of items there, then headed back to the building the implant center is located at for my 1:30 post-op appointment. We hung out in the lobby, as we still had more than an hour to go before the appointment. Again I turned my hearing aid off and on here and there, and played with my ipod and blackberry. There was this guy with his little boy that sat in the lobby with us for a while, and they and my mom struck up a conversation. Eventually, they left, and we headed up to the 5th floor. Sat in the waiting room a bit longer. Finally I was called back to Dr. Kelsall's office, and waited a few minutes in there. While waiting, stepdad returned. Kelsall came in, we talked, then I sat in his special chair. He turned it around and leaned it back so he could remove the stitches. He also looked inside my ear as well. Said everything looked good. He did spot some blood under the ear drum, but he said that would clear up on its own. Set up another appointment for July 13 for a follow-up with Kelsall (will possibly get an appointment in with Allison for this day too as well), and then I was free to go!

Allison will drive up to Wyoming later this month for appointments with her Wyoming clients. I will see her again sometime on April 23 here in town, whenever we get a time set up. She gives her traveling Wyoming clients preference on time, and the locals will get whatever time she has left basically. Understandable! She said we may try adding Clearvoice then, but we'll see. I'm to try to use the implant as much as possible with the hearing aid off (even just 2 hours a day with hearing aid off will be good). My brain needs to be trained! I haven't heard out of the left ear for so long, so it will definitely take some time before my brain starts making sense of the sounds coming in through the implant. So in the mean time, I'll be hearing a lot of beeps/electronic type of sounds. None of it makes sense, and I do feel a lot of random sensations depending on what sound is going through the implant.

Most of the afternoon, it's been sounding like a busy signal, like when you call someone on the phone but it's busy on the other end. Similar to that. At one point, just before we got to Cheyenne, I heard/felt a truck driver's horn I think. Later on during the trip, I got the sensation someone was knocking on my head... Then I heard something similar to someone tapping on an empty aluminum or tin can. But for the most part, it's the busy signal I'm hearing.  And my brain is already confused with the new implant, that I'm having trouble making sense of speech with my hearing aid in the right ear. Too much going on for the brain very confusing stuff.  Also, after I had been turned on, Allison did a quick speech test with me. She covered up her mouth, and said "airplane," "ice cream cone," and "shoe." I was to tell her which one she was saying. The first few tries, I didn't get any of them. But then I got 5 in a row correctly. I didn't hear the actual words being said, but I felt the sensations in my head as she said them, so I was able to figure out which word matched the sensation I was experiencing. Very weird.  And it's kind of like a shock/blast to my head when the door closes and such, very strange stuff. Hopefully over time, my brain will start making sense of all this and sounds will sound more normal instead of just a bunch of beeps. Will just have to keep exposing the implant processor to different sounds and let my brain figure out everything.

As soon as I got home, I pretty much dove into the boxes, starting with the Harmony box. Got the Powercell charger plugged in and set up to go, read the info/instructions on how to work everything. Same with the Neptune box. I put the Neptune together and put the magnets in the Universal Head Piece (UHP) that came with the Neptune, so that I can use it tomorrow instead of the Harmony. My ear is still a bit sore/tender from the surgery, so I'll give it a bit more time to heal up before trying the Harmony again. Alison put the same 3 programs that are on the Harmony on the Neptune too. She did say if I should reach Program 3 and feel like I need more before I see her on the 23rd, to let her know and I will Fed-Ex a processor to her so she can up the volume some more. Hopefully I can hold out until the 23rd though. I am going to try to spend a few days on Program 1, then progress up to Program 2, then 3 after that. But let's see what my brain wants though.