Cochlear Implant Part 6

As I noted in the previous posts, I’ve been trying to catch up on my updates.

May/Early June was an uneven month. The good news was the CI continued to work well. At follow up appointment on June 4th, my sentence comprehension up to 92%, pretty close to normal hearing (in the controlled environment of the booth). This time the audiologist did a new test, introducing to levels of background noise which made it a lot harder to hear the sentences. She was surprised that with the low level of background noise my comprehension was still pretty high at about 75%. Most people go down 30%. But at the higher level of background noise my comprehension plummeted because I couldn’t pick out the voice at all from the background noise.

On the other hand, everything else seemed to break. First the Compilot (the little box/necklace that streams sound directly from my phone and the TV to my processor and hearing aid) stopped working. Then the hearing aid in my left ear started acting up. And of course I realized it wasn’t working when I was on a trip. I was visiting my mother in North Carolina. It was much easier to understand her with the CI, but I spent several meals in an echoey dining room struggling to make out what the little old ladies on my left side were saying.

But now things are going better. I was able to get the Compilot replaced under warranty and the hearing aid repair was simple (apparently you have to change the microphone filters on this model regularly). I’m enjoying a variety of audio books (including a Cosmic Horror Anthology narrated by my friend Zach Brewster-Geisz). I now have Skype calls with Mom regularly without worrying about the caption service. I even watched an episode of “The Daily Show” without captions which was more enjoyable because the captions are usually a couple of minutes behind and garbled.

And most important, it’s much easier for me to figure out what my wife and kids are saying, even when they are talking from the other room.

So I’m finally caught on on my cochlear implant updates, but I may post on more with some general thoughts and common myths about cochlear implants.


Cochlear Implant: Part 4

Update from April 9th

Things are going very well with my CI and much faster than I expected. Speech is coming through much clearer and I can now in many situations understand what people are saying without speech reading. I’m now able to understand a lot of what I hear on audio books and NPR (though it depends on the speaker and whether there’s background music or noise). My wife notices a dramatic improvement and I am also understanding my kids much better.

Music still sounds strange though after some practice simple pieces sometimes sound normal. If there are a lot of things going on at once (e.g. multiple instruments) it starts to sound distorted. Also people’s voices sounded a little lower than they should (not like Darth Vader but as if everyone was slightly hoarse) and everyone tended to sound similar. For example, I could tell male voices from female voices and my kids sound different from my wife. But other women’s voices sound very similar to my wife with the CI and other kids voices sound like my kids. This is a little disorienting when I hear other people and kids talking and keep thinking it’s my own family.

But now that I’m allowed to wear my hearing aid again in my other ear (the audiologists strongly recommend using just the CI at first to help your brain adjust faster) I’m feel like I have the best of both worlds. It took a few days to get used to the hearing aid again, but now I feel like speech comes through clearly on the CI and music and the tone of people’s voices comes through on the hearing aid.

I also finally get to use the Phonak ComPilot streamer which sends sounds and music from my phone directly to both the CI processor and my hearing aids.

Cochlear Implant Activation: Part 3

It’s hard to believe I haven’t posted anything since March 2nd. I meant to put up more regular updates about the cochlear implant because so much was changing so quickly. But as often happens, life got busy and time got away from me. And soon, what once was completely novel became the new normal (in a good way).

I was also under the illusion that I had posted a third update, but I was mixing up various e-mail updates I had sent out with my blog. I’ve pulled some text from two of these-mails to give more accurate description of what was happening at that time. I will post one below, the next one tomorrow, and then a more current update after that.

From March 24th

Overall things are going very well. At my last appointment (3 weeks after activation) the audiologist did some word and sentence tests (both while covering her mouth and with the recordings in the booth). It was very weird to realize that I was actually understanding her even when I couldn’t speech read. The recordings were a little harder but I was able to understand a lot of them. I was amazed when she told me I got 75% and that before the CI with hearing aids I got 0%. Wow! It’s really hard for me to get used to the fact that I can understand a disembodied voice saying some more complicated than “Say the word “Baseball”

Real life is messier of course, but I’m definitely understanding better in many situations. My wife was surprised when I understood some of what she and her sister were talking about to each other in the car when I was sitting in the back seat. I’ve also had the effect that other people with CI’s mention where I have to focus on the person and their voice to understand.

I’ve also learned to be careful about saying how much better I’m hearing to people I don’t know well. This guarantees that I have to ask them to repeat the next thing they say. Waiters are still a real challenge because of the background noise and the fact that by the time I focus and start to get what they’re saying they’ve finished talking.

One problem I’ve been having for the last week is feeling off balance. I had some of that right after the surgery but it seemed to clear up within a week or two. But a little over a week ago it started up again and got pretty bad for a while before finally subsiding (mostly anyway).

I’m not sure if flying made it worse. It definitely started a couple of days before our trip, but it seemed worse after the flight. For better or worse we were in Las Vegas so it was normal to be staggering around off balance. I never actually fell down, but I had a few close calls and learned to use the railing on the stairs. Hiking in Red Rock park was also a little stressful since my balance was still a little off. By the end of the trip, I was almost back to normal but I still feel a little bit off balance especially after I’ve been sitting for a while.

On the plus side, it was nice to have no change in my hearing after flying even when I could feel my ears popping from the pressure.

Cochlear Implant Activation: Part 2

(Sorry no pictures this time. Otherwise I’ll never get this posted)

As I mentioned in my previous post, I was very happy with how far I had come in my first week after activation. By the time of my second appointment, the R2D2 sounds and random chirping had started to disappear, I felt like I was hearing about as well with the CI as I did with hearing aids (meaning I could hear voices but usually needed to speech read to understand what was said), and I was comfortable just wearing the CI without my hearing aid. Most environmental sounds were coming through louder and clearer than with hearing aids. The main thing that was different was that most voices sounded deeper and as if the speaker was hoarse. For example my daughters (ages 2 and 5) sounded like adolescent boys.

The audiologist was impressed with how much progress I had made and she was able to skip ahead one appointment. Apparently people at my level of hearing loss who have worn hearing aids most of their lives often have a much harder time getting used to the CI and the high tones. She gave me a new program that had more high pitches in it. With the new program, her voice sounded clearer and not so hoarse/deep, but she also sounded very sibilant (like her “s” sounds were very loud and sharp). She tinkered with the program and gave me something called “Clear Voice Low” which had more high pitches than before, but still not as much as the regular CI program. We did a tone test and I did much better than I did with hearing aids and was actually very close to normal hearing according to the audiogram.

After the appointment, I found it much easier to hear voices. I was able to get through a meeting at work with two people I hadn’t met before and only miss a few things. When I got home I was able to understand my wife and the kids much better. I’ve had a lot of trouble understanding my two year old since I had the surgery and had to rely on one hearing aid and it’s been frustrating for her (two year olds in general are not known for their patience). She often repeats herself with an exasperated “I SAID . . .” With the new program I understood much more of what she said.  The kids still sound a little like they’re gargling, especially if they are yelling or if I’m not focusing on them. But overall I feel like I’m understanding them much better and they sound less like adolescents with laryngitis.

My wife even tried saying some random words without me looking at her, and I was able to understand most of them. This is something I would never have been able to do with my hearing aids. In the car I asked my older daughter to say something in the backseat and was able to understand her.  I listened to a little NPR. It was still hard for me to understand, but sometimes I could pick up the thread and follow the story for a bit (especially when it was one of regular NPR voices speaking versus someone they were interviewing).

When we went to visit my wife’s cousins, I felt like I was following them much better than usual. I still have to focus on the speaker and speech read. And I still lose track of the conversation a lot.  But it was much easier for me to pick up the thread than it’s been in the past. One cousin in particular tends to talk fast and I felt like I was able to keep up with her better than usual which was great because she usually has something interesting to say.

Today I had a Skype call with my mother. My set-up for this is more complicated than a usual Skype call. First we call each other through Skype on the computer to get the video going. Then I mute the Skype/computer microphone and call my mother again through Hamilton caption service. The caption service places a call to our regular phones and then shows captions of what my mother says on my computer screen next to the Skype window. If all goes well my mother and I can see each other through Skype, hear each other on the phone, and the caption service helps me figure out what my mother is saying. This set up works better than anything else we’ve tried and gives her a chance to see her granddaughters. Unfortunately the captions often lag behind or get garbled. Sometimes they just stop for no apparent reason and I have to place the call again. So it can be frustrating when my mother says something that I don’t understand and I’m waiting a while for a caption that may or may not help.

Last week, the call went about as it usually did with hearing aids. Some stretches went ok, other stretches we got stuck as I tried to understand what my mother had said and the captions took a little break. Today there was a significant improvement where I only had to glance at the captions a few times during the call to figure out what she had said. I’m still not ready to try the call without captions, but it was a lot less frustrating than it usually was.

I’m also now a big fan of the Advanced Bionics T-Mic. One of their selling points to differentiate themselves from the other cochlear implant processors is that the processor for the microphone kind of hangs down so it’s actually right near the ear canal opening instead of being up behind your ear.  The main reason for this is so you can hold the phone to your ear normally instead of trying to find the microphone up on top of your ear. One of my challenges speaking on the phone with hearing aids is that I often had to hold phones in odd ways and often the phone ended up too far away from my mouth so the other person couldn’t hear me either. For this reason I often end up using the speakerphone function which is more convenient but often lower sound quality.

I was skeptical of the T-Mic but I found it did actually work quite well with both a regular phone and my iPhone and it felt very comfortable holding the phone against my ear. An additional bonus in this super cold snowy winter is the when I wear a hat that fits over my ears, the T-Mic actually hangs down below the hat so I can still hear pretty well.

It amazes me that in one and a half weeks I’m already hearing better than I have with hearing aids for almost 30 years. I feel incredibly lucky because I know the adjustment period is much harder for many people, and many don’t feel like they get any real improvement for months if ever. I imagine the rest of the process will be much more gradual but I’m looking forward to seeing what happens with the next program and I’m very glad now that I decided to get a cochlear implant.

Cochlear Implant Activation: Part 1

My activation was last Wednesday (a little over a week ago). It’s been pretty busy since then, so I’ve fallen behind on my blog.

But before I get into the details, I want to congratulate my wife for passing her board exams to be a Nurse Practitioner!

On the day of the activation, the audiologist first did all of the paper work. Then she put the pieces of the processor together. Next it was time to actually put the magnet of the processor (or the headpiece) on top of the magnet that was now under the skin on my head. This turned out to be a little tricky. The audiologist had to switch to the strongest magnet and cut some hair over the implant to get it to attach. But in the end it stayed in place.

Then came the moment of truth. She turned it on the processor and started testing it. This meant she was sending tones from the computer to the processor and the implant). It definitely worked but was really weird. There were extremely high tones inside my head in a rhythmic pattern almost like a woodpecker. I could tolerate the sound, but it was very shrill and uncomfortable. But my wife and I were both relieved that it was actually working. We both had the same unspoken fear that somehow I would end up with a dud implant that wouldn’t do anything.

Then audiologist turned on the microphone on the processor so I could hear her voice. The funny thing is I was expecting to hear something out of Star Wars (R2D2 beeps or Darth Vader voices) or Peanuts (Charlie Brown teachers). But ended up with something more like Fantasia or the Hunchback of Notre Dame. Every sound around me set off a series of high-pitched sounds that often sound like bells, loud wind chimes or like someone playing random notes on a harp or piano. Occasionally I would get a “Zing!” sound like someone in a Disney cartoon waving a magic wand. I thought I could faintly hear the voices of the audiologist and my wife, but it was hard to pick out from all the bells and jingling sounds. I couldn’t tell if I was actually hearing their voices or just imaging the voices as I read their lips.

The audiologist said that was pretty normal for someone like me who has worn hearing aids for a long time and hasn’t heard those high pitches in a long time (if ever). She tried a couple of different settings to see if she could make it less jangly, but it didn’t make mush difference. And while it wasn’t very pleasant to listen to, it wasn’t so bad that I wanted to rid the processor off my head. I was a little disappointed. While I hadn’t expected a rock star activation where I would be able to understand voices right away, I hadn’t expected the initial sounds to be so annoying. The audiologist asked me to wear the processor as much as possible until the noises settle down and I could handle a higher volume. She put 5 programs each with a slightly higher volume and told me to work my way as high as I can over the next week.

After the appointment I went to work. I didn’t have to talk to anyone right away which was just as well. I just sat at my computer typing which set off all kinds of chimes and bells. But I realized I could hear the regular clicking sound of the keys and the mouse too.  If I focused on what was making the sound the jangly sounds gradually settled down but there were still lots of random ones that didn’t seem linked to any sound. I had a break through when I realized one sound setting off the bells was the sound of my own breathing. Once I realized that, I could hear my breathing instead of bells and that made a big difference.

Unfortunately I had to go to a board meeting that evening. I still couldn’t really hear voices with the CI, so I had to turn on my hearing aid for the meeting. I thought I might have to turn off the CI, but it ended up just being a soft jangling sound in right ear while I listened with my left. But some voices may have been mixed in the jangling, because I felt like I followed the meeting better than usual.

The next morning we had a tour of the local school we are thinking of sending one of our daughters to next year. Again I felt like I had to keep my hearing aid on to understand anything on the tour. It was a tough morning. It’s always hard for me to understand on tours because you’re following someone around and the environment and angles keep changing. This tour was worse than usual even though it was a small group because the school was filled with hard walls and floors and the ceilings were high. In addition, the parent leading the tour often had to speak quietly because we were right outside the classrooms. The CI was just jangling sounds in my right ear and more annoying this time. I actually wanted to turn it off but I was afraid I would drop it if I took it off and took the battery off (I had forgotten I could put it into standby mode).

But after the tour, I went to a presentation for work. I was planning to do the same thing, keep my hearing aid on so I could understand was the presenters were saying. But partway through the first presenter, I realized I didn’t really care that much if I missed some of what she said. So I turned off my hearing aid to see how it would go with just the CI. I was pleasantly surprised to find that when the hearing aid was off, the jangling actually calmed down a bit and I could hear the speaker’s voice softly. Over the course of the presenters I moved up several programs which got the speakers voice to a more normal level and the bells started to subside. I was still speech reading to understand what the speakers were saying, but now I could hear their voices and I felt like I was doing about as well as I did with my hearing aids.

From that point on I was able to rely almost completely on the CI. I kept my hearing aid in my ear without turning it on for the first couple of days. But I soon felt comfortable just wearing the CI. I still got chirps and whistle regularly but now it sounded more like R2D2 was following me around or like I had a bird on my shoulder.

Environmental sounds came through pretty clearly, louder and sharper than they did with my hearing aids. I could hear truck engines chugging in traffic. Unfamiliar sounds and complicated sounds still turned into bells and chirps and sometimes I wasn’t sure if I was really hearing birds chirping or if it was and new sound being turned into chirping. I  The rustling of paper and wrappings was incredibly loud as was keys rattling. People’s voices sounded deeper and more hoarse than usual with a slight underwater quality to them. My kids in particular sounded like adolescent boys. But I also found I could pick voices out better and understand occasional phrases without speech reading. With hearing aids the TV in the next room was just random noise. Now I could pick out a voice talking and occasionally understand what it was saying.

Each morning when I turned on the CI, program one seemed quite loud, but I would try to cycle up to program 5 as quickly as a could over the course of the day.

I was pretty happy with how things were going, but things were about to get better:

Coming next: CI Activation Part 2:The new program

Cochlear Implant Update

I had my surgery on Wednesday, Jan 29th. For some reason I was very nervous all week, but on the day of the surgery itself I felt fine. We got there at 9 and ended up waiting in the waiting room until almost 11. Then they took me back to another waiting area to change into a gown and get my IV. They didn’t actually take me to the Operating room until about 12:00.

The scariest part was actually when the nurse (who was very short) was wheeling me down the hallway in this bed/chair thing. She tilted the chair back so she could see but I felt like we were drifting around corners and just barely avoiding crashing into stuff.

Seeing the operating room with all the lights and everything was kind of scary too, but the nurses were really nice and made sure I could see their face as they told me what they were doing. They also had me keep my hearing aid on the side they weren’t operating on so I would be able to hear both before and after the surgery. Then the anesthesiologist told me to let me know whether I could still feel his fingers on my arm, and after few minutes I was out.

Waking up was the part I had dreaded the most because in the past I’ve been very disoriented and groggy coming out from anesthesia. But this time was different. I felt like I just woke up all at once and said “I’m here” as they were rolling me down the hallway.  I wasn’t in any hurry to do something silly like move, but I felt like I knew what was going on. I asked if the tight band across my forehead was the bandage.

Once they got me settled in, they asked if it was too tight, and I said yes. They tried to loosen it a bit, but that didn’t seem to help much. But I figured I would get used to it. They got my wife. She and the nurse chatted about nurse stuff. The only awkward thing was that because my wife was on my good side with the hearing aid, the nurses kept trying to talk to me from the other side where their keyboard was before realizing I couldn’t hear anything on that side and couldn’t really turn my head to look at them.

I felt fine until they cranked the bed up into sitting position. I started to get nauseous so they gave me some medicine for it. That did the trick but also made me sleepy. So as my wife helped me get dressed and into the wheel chair it was all I could do to keep my eyes open and focus on what was going on. I still wasn’t having any pain except for the bandage across my forehead. In fact the right side of my head felt numb. But I also didn’t feel like I could turn my head. So I just stared straight ahead as they wheeled me to the parking garage and my wife got the car. I never really even saw the person who was pushing the wheel chair. I felt rude but I wasn’t going to twist around in the wheelchair so I could see the person and talk to her. I just said thank you to the phantom wheel chair pusher as they got me into the car.

We managed to beat the worst of rush hour traffic and got a parking place right in front of the house. I felt ok walking but I let my wife help me up the stairs and into the house just in case. Then she took my shoes off, got me settled on the couch, and made me a smoothie so I could take my pain pill (tylenol with codeine).

That first evening and night were the roughest part. The bandage felt like a vice across my forehead and the pain was worst over my left temple (almost completely opposite from the site of the surgery). The surgeon said to take the bandage off the next morning, but if I really wanted to I could take it off earlier as long as I kept it on for at least 12 hours. I didn’t really want to cut it off in the middle of the night and then sleep with the incision uncovered, so I resolved to make it through to the next morning.

I tried to read my book  but had trouble reading more than a page or two at a time.  I had my wife bring down my Tintin books knowing that comic books were probably closer to my level. But even those I could only read a little at a time before having to stop and drift off for a while.

My temples were still throbbing. The pain pill helped, but not a lot. The only thing that really seemed to help was if I rubbed my left eyebrow right below the bandage. My fingers were so cold it was like having a built in ice pack. But I ate some ramen and went to bed early. I woke up every hour with my mouth horribly dry and checked how many hours left until my next pain pill and until I could take off the bandage. I felt like a kid waiting for Christmas morning, except in the case the present I wanted to unwrap was my own head.

At 6:15 I couldn’t wait anymore and woke up my wife to ask her to cut off the bandage. She was surprised not realizing I had been counting down to this moment all night. But she got the scissors and a towel (in case the dressing was messy) and at last I was free of the vise! My forehead had two big welts on it (the scabs are still healing a week later) and was all puffy. The incision was a dull distant ache around my ear, but nothing compared to that horrible bandage that had been squeezing my head all night. I guess the pressure helped the incision close up and heal well, but I don’t know if it had to be that tight.

Everything after that was a cakewalk. While I still couldn’t open my jaw much, and the site around my ear was starting to ache, it was nothing like the head vice. I felt well enough to start something I had been looking forward to for months: watching all six Star Wars movies in a row (real ones first followed by prequels) and start reading some of the books I had been accumulating in anticipation of my recover.

Since then each day has been better. I can open my jaw more and chew better each day. It still aches behind my ear but I don’t usually take any pain medicine except at night. My balance feels slightly off, like one side of my head is heavier (which technically I guess it is). Sometimes I feel like I’m listing a little to one side, and the room keeps moving a little bit after I stop moving. I also have to be careful about titling my head back to look up. But so far I’ve never felt in danger of falling down and each day I’ve been more active.

My wife picked the kids up on Saturday. Sunday we enjoyed a warm day and took the kids to the playground. On Monday we got another snow storm and I even felt well enough to do some shoveling. I’m not sure if that was really a smart idea, but I told myself I would stop if I had any pain or felt dizzy and I was extra careful about my footing on the stairs. I did feel a little off balance a few times but actually felt better once I got going.

But as often happens during snow days/vacation the days flew by quickly and a week has already gone by. Today we got through an ice storm and a power outage. Tomorrow if the weather/roads/septa allow I’ll go back to work. And I look forward to my activation on Feb 19th.

Parent Interrupted (What Multitasking Really Means)

A female professional I know once wondered on Facebook why men are so bad at multitasking. She was frustrated with her assistant who apparently couldn’t juggle his tasks efficiently. Other women chimed in agreeing that men make terrible assistants in part because they couldn’t handle the multitasking required.

I don’t know it’s really true that men in general are bad at being professional assistants, but it made me think about what it really means to multitask. First, the empirical evidence that I’m aware of is that even people who think they are good at multitasking are actually really bad at it. When they try to do two things at once, one task or both usually suffers dramatically, often without the person being aware of it. Think of when you talk to your friends on the phone and you can always tell when they are doing something else because they sound so distracted. Often that person thinks they’re keeping up with the conversation just fine.

So why do we consider some people good or bad multitaskers? Some of it may be being able to switch between tasks without getting confused. Some of it is probably just putting up a good front. Some people are good at seeming like they’re getting lots done and are totally on top of everything when really they have no idea of what they’re doing. But I suspect there’s one really key skill that drives being a multitaskers that the male assistants mentioned above were really bad at: handling interruptions politely.

I think being an assistant (especially if you are an assistant to more than one person) means that you are given a lot of different tasks and people are constantly interrupting you to ask you to do something else or change what you did before. Part of being a good assistant is responding to these interruptions politely without conveying that what you’d really like to do if one more person interrupts you is smack them upside the head.

What does this have to do with parenting? I think most parents already know where I’m going with this. Being a parent of small children means being interrupted every five seconds with new requests, questions, complaints, fights, or all out tantrums. Most non-parents who don’t deal with small children on a regular basis have a vague idea that kids need a lot of attention. These non-parents have no idea of how hard it is to start anything and finish it without being interrupted every step of the way.

A couple of weeks ago, my wife and I took advantage of a rare morning when we didn’t have to rush off somewhere to do something unusual: talk to each other about something other than the kids. After a while we just had to laugh because every time one of use started to talk, one of the kids chimed in asking or demanding something. I don’t mean once or twice or that they were asking for the same thing over and over. I mean over the course of thirty minutes the kids managed to come up with a new reason to interrupt us every time one of us was in danger of finishing a complete sentence.

If you are going to get anything at all done without screaming at your kids to shut up all day long, you have to get used to being interrupted all the time, keep some modicum of patience, and keep trying to finish whatever it was you started before you got interrupted by five other things. You also have to get used to eating everything cold, because nothing says “interrupt me and ask for something” like sitting down to eat something while it’s still hot. This is also why kids these days end up watching so much TV and playing with iPads so much. It’s the only way their parents can get anything done.

So if you’re looking for a good professional assistant who can multitask without losing his or her cool, maybe you should look for someone who has spent time taking care of small children.