Sunday, November 14, 2010

Map Time

Another mapping appointment for the CI (cochlear implant) came up fast. This was for the one month map of the new CI, "Repeat," and 2-year map of the first CI, "Pete". (The next map will be the 3-month map.) A map is the mesurement of sounds that are comfortable to you and what is too soft and too loud. You can increase or decrease volume and sensitivity when you want for certain situations. This is how I look at the map: On the volume control, the default level (the comfortable level) is at number 6. I can lower the volume (softer levels) and increase the volume (louder levels). The map is always adjusted to your comfort level. Sometimes that means that as time goes on, the brain gets used to the volume and soon the higher volumes are your "comfort" level. Having mapping appointments help you keep the comfort level in the middle of the volume control (in this case, number 6).

I love how I can now wear matching processors. :) Since I can get two processors, one pair (the Freedom) is a back-up while the other pair is the one I wear almost daily. If I had both ears done at the same time, I'd have gotten four processors right away and had two for a backup. I don't know what happens when an upgrade (to a new model) is made-does the recipient get one or two processors with the upgrade?

The map for the first CI, Pete, wasn't changed except that I had programs 2 and 3 switched around. The brain, over the past two years, has found it's "happy spot"-it does't need adjustments to volume, but that doesn't mean that will always remain that way. (There are four different programs for both the Freedom and N5 processors.) Before the last map, Pete had for each program):

P2-Everyday with T-coil (so I didn't have to monkey with the switch fo turn on the T-coil, it was much easier to switch programs. You only have so many seconds to answer the phone....)
P3-Focus with beam

Then P2 was changed to the "Noise" feature and it was like "Focus" but background noise is compressed with the zoom feature. (More on that later.)

Then I wanted P2 and P3 switched so that I could go from "focus" to "noise" (kind of like zoom to super-zoom) in each step).

So now it's like this (N5):

P2-Focus with Beam
P3-Noise with Zoom

For the Freedom processor:

P2-Noise (no zoom because the Freedom doesn't have zoom-see below)
P3-Focus with Beam

(Keep in mind that the Freedom does not have the Zoom technology, only the beam feature. (Cochlear has added "zoom" to it's SmartSound technology. The N5 is the only one with this feature. The Freedom has the beam feature, though. The new "zoom" feature can zero in on the speaker directly in front of you and somehow lesson the background noise even more than Beam can. This is why I wanted my programs to be set up that way-I could go from "zoom" to "super-zoom.") The second CI (the N5), Repeat, the right ear, has this

P2-Everyday with more volume
P3-Noise with ZOOM


With the Freedom, P3 is Focus with Beam

After the map was done, I had to be tested to see how "Repeat" was doing, hearing-wise. My test scores were good for a "one-month-0ld". :) I had 50% word discrimination and about 90 something percent together. I had sentence tests and they seemed to be more challenging than usual. I don't know if the standards were raised to see how a patient can really hear in extreme situations, but take my word for it, it was HARD. It seemed to start off easy. I could hear the sentence in a noisy background, then after each sentence (and there were different male and female voices) it seemed like the background noise got louder and LOUDER. Whew. I had to shake my head a few times signaling that I didn't "get" it. Now, that's more "realistic". I am not good at all in noise. I can be in a noisy restaurant/bar and just sit there, not being a part of anything because it's difficult to socialize and be sociable at the same time. It's frustrating.

I will always identify myself as a deaf person. I have lived with hearing loss all my life and it's so much a part of my life. I still struggle to hear, especially, like I said before, in noisy places. I can talk on the phone, but not all phones work for me. Cellphones are the worst for me. Certain people, like my mother, are easier to hear on the phone. Maybe it's because I'm familiar with her voice or maybe she is just attuned to accommodating me. The CIs have helped me hear at levels I don't remember hearing or haven't heard in a long time. It's amazing how, when your hearing deteriorates, you don't notice that so much, at least with me. You just keep going with what you have.

But at the same token, where my vision loss is concerned, I remember more of what I used to be able to see. The stars. Seeing at night. (Now it's just dark. People are dark moving shadows. If there's a light, it offers just a glow around it and I can see things in that glow, but farther out, it's just dark shadows.)

I have a "space" problem now. When I'm in hallways, I feel like I"m taking too much space and need to stay either as close to one side as possible, almost shoulder-touching the wall next to me (I tend to knock things that are hanging on the wall this way.) or if the hallway is very narrow, I'll want to stay in the middle as much as possible-it's like I have this claustrophobic problem.

I'm forever walking into things below my hip-a chair, a bike, the dog, a "wet floor" sign in stores. That's when the cane can come in handy so I don't do that. I can put my hand out in front of me and see my hand, but my arm disappears into this invisible void. I know it's there, but I can't see it. Imagine a piece of paper with a drawing of an arm. The hand is smack in the middle but someone erased the arm. It's just not there. The peripheral vision is gone.

The only thing I can say is that hearing loss was always with me and I'm used to the daily struggles of hearing, listening. (Yes, I'm hearing a lot more with the CIs than I ever did with hearing aids, but like the hearing aids, when I take off the processors, I'm in a soundless world.) This vision loss came upon me later in life, so I notice the changes more. I have a lot of "good vision" memory (optical memory, if you will) that it's more of a grieving process for me than hearing loss is.

I keep thinking to myself, if I didn't have RP (retinitis pigmentosa), would I still have gotten CIs? I can't answer that. Two years ago, I still had one working ear before implanting the other ear that didn't pick up speech. (I didn't realize how bad my hearing got, but I worked with it because that's what I was used to.) If the time came when that ear, the good ear, didn't benefit from the hearing aid, would I have gotten a CI? Maybe. Then I would be without the good ear, the "back up" ear. I'd be in total silence.

Most people I have talked with about CIs have gotten them after both ears didn't benefit from the hearing aid. They were used to hearing something. Once no speech was able to be picked up by the hearing aid, it was devastating for them. So, yes, maybe I would have gone that route eventually.

I am not sorry I got the CIs when I did. I did it because I wanted to hear more to make up for my dwindling vision. I'm hearing things so much better. Most of all, I'm hearing speech in my darkening world. I'm not totally out of touch with the world in the dark with my CIs on.

Friday, November 05, 2010

Two-week Map of Second CI

Comparison of the processors I couldn't tell you which
one I liked better. Both are great products for me.
In this picture, both coils and cables with the magnet is not shown.

“Shari,” I heard my name being called while Hubs and I were in the waiting room. I was in the middle of looking at my left processor, the older one, the Freedom, to double check that I had the T-coil on because it did sound funny. I must have click it on when I was listening to my iPod on the way there. (This way Hubs is happy listening to what he wants and I'm listening to what I want. Fair, right?) Once I plug in the iPod to the processor, I have to press on the bottom button till I see "EA", meaning I got the iPod connected. I have to press the middle part of the button. It has a sideways lever on it for lowering and increasing the volume so I have to press it in the middle. But, yes, always a but, there's also a way to press in the T-coil, which makes listening to the phone, FM systems, etc, so much easier for some people. I did have the "MT" displayed on my processor, so I pressed the button to deactivate the T-coil. The "M" stood for microphone.

It was odd, because I did make sense of my name being called with the new ear alone. I don’t know whether I heard my name or just that I heard someone say something that would make me look up. I was in the waiting room and sooner or later, my name would be called, right?

I smile at my audie and both Hubs and I get up to make our way down the hallway towards her office. I kind of “hugged” the wall. Hallways make me a little claustrophobic. I get paranoid about how much room there is for others to walk by. I kept my eye on the phone that was on the wall in the hallway. At the last visit, I knocked the handle off the phone with my “hugging”, er, close proximity to the wall. I passed it without incident. (And of course, they didn't forget that I did that. LOL)

We got settled in “Amy”, the audie’s, office. She measured eight more electrodes in the area of my comfort level (between soft and TOO LOUD!!). Now I have a total of 13 of 22 electrodes mapped. The other nine is turned on, just not measured yet. (I was wrong before when I thought the rest of the electrodes were still turned off; they just weren’t mapped.)

Amy turned on the newly mapped electrodes. It was PERFECT. Usually I need a little more adjustment, maybe it’s too loud yet and I have to get used to the volume or something is still a little “off”. It still had the “Alvinoid” sound to it (high-pitched). But it was comfortable.

She mapped the other Nucleus 5 (N5), the latest model from Cochlear, to the old implant on my left ear. Now I am wearing matching processors. The Freedom, the older model, will be my back-ups. Both Freedoms have been fitted so that one processor is mapped to the first implant and the other is mapped to the new implant so if I wear them, I'll be wearing the same model. I did feel funny the last two week while wearing one N5 in one ear and the Nucleus Freedom in the other.
Because both Freedom processors have ID numbers on them, they were originally mapped for the left ear (the first implant), Amy tried to set it so that one of them can be designated for the right ear. She couldn’t get it to switch. She called someone and then, staring at her computer, she said, “Okay, I got it.”

She only changed one thing with the map on my old side. I have four programs (P1-P4) on it and P1 had everyday (it’s on most of the time), P2 had everyday with the T-coil on it (because it can be tricky timing to push the buttons on my processor while the phone is ringing to switch on the T-coil than it is to switch programs), P3 had Focus on it (it cuts out the background noise behind me so all I can do is focus on the person in front of me, and P4 had the music program on it. The only change was P2; it has Noise now. It’s like a super zoom of Focus. The right side has “everyday” in each of its programs and each is louder than the next so I can keep increasing the volume when the sounds get softer. Sometimes it takes about six months to a year to get the volumes the way you want it. The brain gets used to the volume and you want more. It's mostly because the ear hasn't heard anything at that level in a long time and it can be a slow process to warm up the brain. It's more sensitive at first.

I would never have to worry if I get the processors mixed up and put them on the wrong ear. If I did, sparks will fly. (Just kidding.) Seriously, they just won’t turn on. If I turned it on before putting it on, it just won’t work. I’ll have to switch it to the other ear and voila, it’s working. (With bilateral hearing aids, you don’t have to really worry about that. The left and right earmolds fit to only the left or right side. You can’t put in an earmold backwards.) I remember my last set of hearing aids, the Oticon Sumo DMs, had a blue and red line on it. The blue one was for the left ear and the red line was for the right ear. It was easy for me to remember because of the “r”. “R”ed is for the “r”ight side.

The magnets on my head are not lined up equally. So if people can see my coils sticking to my head, they will see that it's not symmetrical. The magnets on the first CI is lower on the head than the second CI. This may be because I have two different internal implants (the Freedom and the N5) and/or because of the shape of my head is different on one side.

I got a quick training course on the remote assistant again. This time, because both processors are paired to the remote, I had to learn how to adjust anything on one side. Before, only one processor was paired (connected wirelessly) to the remote and a quick program change, volume adjustment, or T-coil turn-on or off could be done. This time going from dual mode (showing both processors were on) to the left side and switching back to dual mode to the right side to make changes or double-checking on the statuses of the battery of remote or processor can be done. It's like standing up straight and then bending to one side. You have to straighten up to bend to the other side.

I can adjust the volume manually by pushing buttons on my processor, too. Lights will flash 1-4 times to tell me which program I’m on and whether it’s turned on or off or when I turn up or down the volume. I don’t have the visual of which program I’m on like I do with the Freedom. This time it’s the lights flashing. Both processors do have beeping sounds that also tell me which program I’m on (1-4 consecutive beeps), along with beeps for turning on and off the processor.

Amy wanted to do a quick hearing test to see what I could hear. We left her office and went to the large sound-proof room. She tested me on what certain sounds I could hear. High tones. Low tones. Staticky tones. Booming tones.

She wanted to see if I had any residual hearing left. I told her that I “tested” it with my hearing aid and I didn’t hear anything. She inserted something in my right ear’s canal. It felt cold and hard. I didn’t see what it looked like. Amy went into the other room and started the second test. I actually was picking up on some sounds. I don’t think I would pick up speech on that ear by itself, though. Most of the time, any hearing, however little, even if it had very little benefit with the hearing aid, trauma from the insertion of the electrode part of the internal implant would damage any hearing that was left. I've heard, though, that the N5 internal implant had less incidence of this. (Not all cases are like this.)

2-weeks after activation, decibels of 15-25-Click once or twice to bigify

Audiogram for CI evaluation of 2nd ear, the right ear-click once or twice to bigify

She said that my audiogram showed that I had reached decibels of 15-25 with the new implant. Wow. That’s a little better than what the other ear was doing at 20-25, if I remember correctly.

She suggested I start using the “Sound and WAY Beyond” disc from Cochlear to do some listening practice or auditory training.

For some people, the second CI doesn’t get all the hard work that the first CI did and it could take longer to get the utmost results. I do remember how long it took to work with the first CI. The hearing aid (HA), though I didn’t get a lot of benefit from it, worked well with the first CI to make things sound natural and off and on through the past two years, I’d turn off the HA and the CI would just sound “different”. Then after the surgery of the second implant, I was forced to go without the HA. Suddenly, the first CI had no choice but work alone. And things sounded “natural”. (The brain is amazing.) It would be very tough for me to “force the second CI to work alone for a month. I don’t have to. I don’t even know if it’s recommended. At this point, I’m just going to work both CIs together.

On the way home, I was really comfortable with the new map.

At the next visit, the one-month mapping and 2 year mapping of the other ear, I’ll really be updating both ears. I don’t think there will be much to change with the first implant. We'll see.