(NL-0050) CI Disaster – A very long Rant.

My honeymoon with Cochlear is over, that’s for sure.

Here’s my opinion: The N5 BTE really sucks. At least it does for me.

It’s Christmas Eve Day (is 1:26 AM daytime?) and I’ve finally (finally!) gotten around to posting here. Many apologies to the folks who have been after me for updates. Last anyone knew, I was doing just dandy. That changed some-what.

This post is long. Be warned, you will need some time to read it all.

Normally I am pretty easy going and have learned to deal with things I can’t change in life. But this time, there are so may issues with the new Nucleus 5 BTE and all the outside hardware that I’m not going to be “nice” here. I just can’t.

On December 4, I visited my Surgeon to make sure that the incision was healed up enough to activate and wear the BTE (behind the ear) unit. A few days before that, I had noticed I had a pretty bad headache every morning when I woke up. My headaches seem to have been caused by the way I sleep.

I sleep on my belly and have to have one ear or the other on the pillow. I know for a fact that I swap sides (turn my head over) every hour or so, as my wife is a light sleeper and tells me so.

Since I had the left side implanted, I have been “forcing” myself to sleep on the right ear for a full eight hours.

Aside from the fact that I never really got a good sleep (waking up every hour or so), I seem to have a very heavy brain.

I know this because many folks have told me my head is full of rocks and rusty old metal sprockets. Some of those people have even suggested the presence of lead, saying my head is indeed very dense. Lets hear it for gray matter.

At any rate, my right CI is forever trapped between my dense, heavy brain and my well packed and very dense feather pillow. The pressure I had been putting on the right CI seems to have been causing my headaches. The doctor said I could now try and alternate. I did and this had immediate positive results for me (no more throbbin’ noggin). There's a lesson in that for all you prospective bi-lateral folks.

The other issue I brought up to my doctor was that the new CI incision seemed to be healing up a lot slower than the first one. Even though the outside of the incision looked ok, I continued to “bleed out” when I was asleep. Fortunately, I have been using old pillow cases for the last month. The bleed outs stopped a few days ago, thank goodness. Healing up fine now.

On December 5, I went to have my new CI activated. More problems.

A big problem is that Cochlear did not ship the hospital a complete CI kit. I had a Nucleus 5 implant put in for the left side (my right side is an N4). The N5 is so new that Cochlear seems to be having trouble getting enough product out the door. As a confirmed Test Engineer, I know the problems that come with trying to manufacture and ship a new product, especially a medical device. It’s much more of a challenge than climbing Mount Everest. Trust me on this.

My kit shipped without a backup BTE. It shipped without rechargeable batteries or a battery charger. It shipped without an audio cable that has an isolation transformer (Cochlear calls it a “mains cable”). God knows what else it is missing. I was not and still am not a happy camper.

The backup BTE was found a couple of weeks later, apparently roaming the halls of the hospital where I had the implant put in. That BTE was finally delivered to my audiologist on December 8 (more on that later).

Also, as I discovered, the N5 system does not have rechargeable batteries, because Cochlear is waiting for FDA approval (the USA seems to be the only place that can’t get rechargeable batteries yet). I am thoroughly unhappy with this situation. It could be YEARS and YEARS before the FDA gets it’s butt in gear and makes an approval. I’m not gonna buy batteries for all that time. It’s wasteful, not environmentally friendly, and dang expensive.

And things just get better (not).

The initial activation and mapping went ok. But the N5 BTE really, really, really (did I say “really”) is not at all what I had expected or wanted.

The N5 is smaller, but the same weight of the N4. It is water resistant (a very good thing). But, in almost every other way, it fails to give me any reason to use it.

There is no longer a display to show the state of the BTE. Just idiot lights. It’s completely impossible to open the “latch” of the audio accessory socket unless you happen to be carrying a screwdriver with you (and yes, the CI kit comes with a screw driver).

I find it totally appalling that, unless I have a tool handy, I literally have to disassemble the N5 BTE just to plug in an audio cable. I use my audio cable about 20 to 30 times a day (with my PC). I also use it for my IPOD. It’s totally insane to have to carry around a tool to use a BTE. Simply insane.

The design of the BTE is such that Cochlear placed the “on/off and change program” button butt-up-next to the coil assembly wire. I don’t know about the average person, but I have large fingers. It’s very difficult to press or even find that button. I can’t imagine the effort elderly folks will have to undertake. I can’t see anyone with even mild arthritis operating an N5.

But wait.. the N5 comes with a remote and that’s what the remote is for, right? Big easy buttons? Simple interface? No problem, right?

Yeah, right.

Aside from the fact that I carry a phone and an IPOD with me at most times, I can’t see why on earth I also need to carry a remote for my BTEs. The remote does not come with a case or a belt clip (of course you can buy an over priced case from Cochlear, but you won’t get one in the CI kit (what were they thinking?).

And the user interface on the remote must have been written by several drunken monkeys.

I hold five engineering degrees. I still (after a month) cannot find the functions I want to find on the remote. The menu system is completely un-intuitive. It does not use any mainstream icons or tools that I’ve ever seen, and it doesn’t seem to hold a charge for more than a couple of days (where as my TV remote can go for a couple of years between battery changes)…. Oh and there’s no battery that you can replace. You have to use AC or plug it into your computer to charge it. I know that the internal battery is not going to last as long as the BTEs or the implant.

So what happens after 3 years and the Lithium Ion battery croaks? I guess I’ll have to shell out for a new remote.

And…. when you plug the remote into a windows PC for charging, the PC asks for a driver, which, of course Cochlear does not provide and does not mention that you would need.

Actually, I’m really surprised that the PC-to-remote charger cable connects to the USB data lines. Why on earth would it need to do that? Does Cochlear intend to allow me to upload/download data into the device? I think not. So now I have had to modify my PC to ignore the driver request. Maybe later I’ll hack into the remote and see if I can reprogram that GUI (graphical user interface). It really sucks, and that’s the nicest thing I can say about it.

And, get this, there’s a menu selection to “reset” the BTE.

--- RESET! ---

Why would I ever, ever need to, or want to, reset a BTE? Is Cochlear telling me that the BTE can lock up (think Windows on a PC)? Can a BTE scramble itself so that the firmware inside of it just gets “lost” … ????? Jeepers!

Take it from an old Engineer; anytime you see a “reset” function on a medical device (or any other device), it’s a bad, bad, bad sign. It usually means that the design is not robust. In my opinion, there’s no way to put a positive spin on that. Sorry.

Oh, and you can reset the remote too.

Funny, but my very complex TV remote does not have a reset button. I wonder why?

My right N4 maps were transferred to the new N5. It seemed to work ok. But later on, when I used the phone with my audio cable and PC, it was very apparent that the sounds I hear with the N5 are not the same as the sounds with the N4. Don’t know why. Something needs tweaking.

And….. the saga continues….

I had to go to Santa Barbara to visit with one of my clients. This was the day after the missing N5 (for the right side) was found and programmed. So off I went on my trip with two new N5s and a remote controller.

I had the left N5 activated on December 5. The right side N5 on December 8.

On December 10, at about 10 PM, while watching TV in my hotel room, my left side went completely quiet. Dead silent.

That’s not a good thing when you are 250 miles from home and you didn't bring your backup BTEs (stupid me).

The left side N5 BTE seemed ok. It would respond to the remote. It responded to all on-board BTE button commands. I could see on the remote that the microphone was picking up sound (there is a somewhat crude sound meter on the remote). However, the BTE insisted that it could not communicate with the left side implant. I was really concerned that the implant had stopped functioning. To make matters worse, I had not taken my N4 BTEs as a backup, so I had to wait until I got back home to verify that my implant was not damaged.

I tell you, it’s a hard thing on the mind to have just had an implant and then, without warning, to think that it has failed. Every thing I could test on the BTE pointed to one of two things: the BTE output to the transceiver coil was bad or the implant was bad. Not a set of choices I wanted to see.

Fortunately, it was the BTE’s driver output to the coil that was bad. After I came home I found that my implant worked just fine with my N4. But I am now very, very concerned with the reliability of this new N5 BTE. It was only seven days from turn on to failure. Seven days. That’s really disturbing.

Well, on to other issues (oh yes, there are more!)….

Today I bought a bluetooth ear piece. On it’s website, Cochlear states:

Bluetooth Friendly

For safe hands-free connectivity. The intelligent design of the auto telecoil allows it to automatically detect sound from a Bluetooth headset when it’s worn on the ear.

And if you believe that, I know of a big bridge in San Francisco that I can sell to you. Only ten bucks.

No, the BTE does not detect sound from the bluetooth headset.

Well, I take that back. It does detect the sound, but only if I remove the headset from my ear and physically hold it against the BTE (a distance of about 1/4 inch). So, yeah, it works, but it’s not hands free. You have to hold the bluetooth headset at all times.

I can get better sound by leaving the N5 in normal mode (T-coil off) and holding my phone up the BTE (but the sound still is bad).

And speaking of phones. It is well known that 3G phones don’t work well with T-coils. My phone is a SideKick. It makes a heck of a racket with a T-coil.

With the N4 BTE, I can not use the T-Coil and so I just place the phone next to the N4 BTE and it sounds great. When I do this with the N5, the phone audio sounds really tinny and garbled. So bad, in fact, that I can’t use my phone at all with the N5. Some improvement, eh?

Ok, well, there are more issues I have and I am sure I will discover many more in the next few months, but I’ll stop at this point.

Right now, I am wearing my N4 BTEs. One is beige colored, the other one is gray. My wife can’t stand the color mismatch ( heh heh!). But I can hear fine with them. They are easy to operate and easy to use. I see no reason to ever want to use the N5s.

My left N5 has been sent for repair. I refuse to use the right side N5 until I get the left one back, and even then, I can’t say that I will use the N5s at all.

I really believe the N5s were designed with children in mind. Why else would there be the following features?

• Smaller than N4 (but weighs the same)
• Can lock the battery case (so kids can open it and swallow the batteries)
• Can lock the button controls via remote (kids love to push the buttons)
• Can control the BTEs via remote (parents can control the BTEs on a child)
• Audio cable socket cannot be opened without a screwdriver

I can easily see how the N5 would be a God-Send for parents with infants and toddlers. I know I am the wrong demographic for the N5 as I'm a "way too critical Engineer."

In my opinion, anyone but small children are the wrong target demographic for the N5, and that’s sad as I know Cochlear put 2 or 3 years of R-and-D into the N5. My advice to all is to stick to the N4s for now.

In conclusion, given the time of the year, I end on this cheery note:

Bah, Humbug!

…dan…

[11900]

(NL-0049) CI Surgery One week Later

It's been one week since I became a dual implantee. This time around the surgery and recovery seems a lot easier.

It also looks as if I've joined an elite club. As far as I can tell, there are only about 3000 bilateral CI folks in the world (see Wiki source). If anyone knows a more current/correct number of bilateral CI folks, please comment. (I admit to being lazy here as I did not spend more than 10 minutes researching the number).

Anyway, I was up and about the day after the surgery, although I stayed home. Minimal ringing in my newly implanted ear. Minimal dizziness. I didn't take any pain killers. So far only a total of five or six regular off-the-shelf Tylenol. I was able to drive on Wednesday.

Most of the "agony" of the past week had to do with not being able to sleep with my left ear on the pillow. (It's true: I'm such a big baby. Heh heh).

Other interesting things: I have more sensation on the skin of my left ear than I had on my right side after the first surgery. And my sense of taste (on the left side), while a bit dull for the first couple of days, seems to have "almost" returned to what it was before the surgery. So I'm happy about that.

The new Nucleus® 5 implant on my left side is a lot thinner than my right side Nucleus® 4 implant. I can't even feel the left side implant under my skin. There is no rise, no bump, nothing I can feel at all. The right side implant "bumps out" about a millimeter.

Here's a photo of my noggin' as of today (sorry for the skin color mismatch here, but do-it-your-self point-and-shoot-photos tend not to win any Pulitzer prizes!).

The right side ear was implanted in March this year (2009). The scar has almost faded to the same color as my hairless head. You can also see the "impression" of the BTE coil that I had just removed before taking the photo.

The left side of the above photo shows last week's implant scar. It's all closed up and water tight (I can take showers) but it it's still on the mend. I remember the right side looking like that for at least a month or so.

Activation is set for Saturday, December 5. I'll write more at that time.

...dan...

[11346]

(NL-0048) CI Surgery Day

Surgery went ok. This time around it seemed to be easy. No rush, no fuss, no problems at all. And in the after effects, I don't feel anywhere as near dizzy as I did after my right-side implant. And I have no pain at all and have not taken any pain medication. That seems very good to me.

Here's the review of yesterday's events:

Arrived at the hospital around 5:35 AM. Roxanne captured this lovely photo of my existing right side CI. I think this is the first actual photo of me with the CI showing.

The pre-op nurse took this photo. Roxanne tries to hide here but can't escape the wide angle shot (ha!). I am all decked out in my "breezy" surgical gown. Good thing that there is not a mirror on the wall behind me.

On a slightly divergent note, I see my blood pressure is just as good as it can be. This reading was taken just after I had walked a good distance and was not resting or in a restful state. That bottom number is really, really good. Let's hear it for swimming laps!

About 6:30 AM, my surgeon, Dr. Ashley Sikand arrived and brought me a "Cochlear Backpack."

Then it was off to surgery. Here is Dr. Sikand working on my left ear implant.

And here is a lovely head shot of me half-awake and half-snoozing after the surgery was completed. Does anyone think I could ever look more stunning than I do here? Wow, I'm so hot!

Anyway, today, the day after surgery, I am feeling pretty good.

Right now Roxanne is making us a lunch of Shrimp w/green bell peppers (yummy!). I can already walk up and down the stairs without assistance, so it's time for me to take a stroll down to the kitchen and eat.

More updates soon.

...dan...

[11155]

(NL-0047) CI Surgery, the left side

Left-side CI surgery is all set for tomorrow morning. Just like last time, I have to be there about 5:30 AM to get ready for 7:00 AM surgery.

And, like the last time, I had a heck of a time with the pre-register people (see my previous post on Suffering Fools and be sure to check out the photo of the Admin Staff). This time round, I would have no part of the foolishness and demanded a supervisor to put an end to the problems. That worked out very well.

This time, I'm feeling a lot less concerned about the surgery. When I had the first CI put in, I had never undergone surgery before. But it was not too big a deal after all. The main thing I am doing different this time, in getting ready for the surgery, is that I am not eating at all in the prior 24 hours before I go in. Last time, even though I did not eat a full 12 hours before the surgery, the effects of the anesthesia made me toss my cookies. I might still have the same problem this time, but at least it will be limited to dry-heaves (I hope!).

Here's a helpful hint for those of you who wear glasses and are contemplating a CI: Today I had the optical-eye-glass place remove the left side ear support from my eye-glass frames. Otherwise I would not be able to wear my glasses at all for a couple of weeks. The CI incision runs the entire length behind my ear and up onto the side of my head. The ear support of my glasses would continually rub on the incision if I don't remove it from the frames. My glasses stay put just fine, even though I have only the right ear support in place. I guess I must have a bigger nose than I thought.

In other things, I've been "taking it easy" since early November. I call this time "a well deserved vacation." My wife calls it "being lazy." I think she may be half right, but I'm going to continue to "be lazy" until January. Nothing much happens, business-wise, from Thanksgiving to January 2nd anyway. Might as well take it easy.

...dan...

[11039]

(NL-0046) Going CI bilateral

It's official.

I'm going CI bilateral.

Surgery is set for November 23, 2009. That happens to be the day after my 5th wedding anniversary. Heck of a present for my weary Doctor/Nurse wife; having to take care of me for an anniversary present.

Guess I'm going to really owe her a few extra favors (and a few new credit cards) at the start of next year !

Took me a while to decide if I really wanted/needed an implant in my other ear.

The most annoying part of having one good ear and one deaf ear is that I can't locate where sounds originate. For example: it's really bad if I am in my garage and the neighbor's dog starts yapping. This dog is a good 300 feet away, but I'll hear it as if it is two inches from my ear. It's not really so startling to me as it is just plain annoying. Also, after the first implant, I discovered that I can't tell where my wife is if she calls me from another part of the house. That's not a good thing either. Hope to improve on that.

Also, it's become very apparent that I have to keep my right side pointed toward people I want to hear. In fact, in several noisy environments, my wife will sometimes followed 20 feet behind me, on my left un-implanted side, and note that I didn't hear her talking to me at all (I swear she does this on purpose!). That never happens if she is to my right.

The new implant, a Nucleus® 5 System, will be on my left side and will be a thinner version of the CI that I have now. I'll have 2 new version 5 BTEs (behind the ear) processors. These newer BTEs are thinner than the version 4 that I have now and have some nice new features that I see will make talking on the phone and listening to personal audio devices a lot easier. However, visually, the BTEs seem to look a lot more "boxy." I don't find the new design particularly attractive, not that I'm particularly attractive anyway, but I do like my current BTE design a lot better. Also, I can't help but wonder how the new BTE's will fit and hold in place with my glasses. I suppose it will be about the same.

Nucleus 5 v/s Nucleus Freedom (version 4)

As far as improvements, the new system has an "auto" telephone detect; that is to say, as soon as you put a telephone receiver to your ear, the BTE should automatically switch to the T-coil mode (for those who don't know, a t-coil picks up the audio-magnetic field generated by the telephone's speaker). And, better yet, the same auto t-coil feature can now pick up a bluetooth ear receiver. Although it seems like I'll be wearing a bit too much electronics on my ear, that's going to allow me to be "wire-free" to my phone, my computer, my car's GPS map device, and many other audio devices. I think that's a great feature to have, even if I will have to hire a personal trainer to get my ear muscles in shape to hold up all that gear !

I suppose I'm fortunate not to have this problem to deal with.... yet

...dan...

[10500]

(NL-0045) CI at 150 days

It's been 150 days since my CI was activated. Things have been going OK. However, I went in to my audiologist for a tune up. I just wanted a bit more volume and I wanted to have an audiogram (hearing test).

Strange, but no one had yet suggested that I have my hearing checked since the CI was activated. Many other CI blogs relate that hearing tests were done a couple of weeks after initial activation and also that audiograms were made after or just before remapping. It just never crossed my mind to have my hearing checked again.

At any rate, I had the hearing test before the audiologist increased my CI levels. I think should have done it the other way around. Or at least I should have had the remap and then come back later for the hearing test. Oh well, too late for that.

Some interesting results though.

My hearing has really improved. At this point, I went from 120 dB (off the chart) to an average threshold of 25 dB across the entire range (250 to 8000 Hz). That's in the lower end of "normal" hearing. Also, I easily obtained a 90% Word Discrimination Score (missing only two of the random words).

The audiologists seem to think that this is "pretty dang good" but I was pretty well peeved at the person reading the random words. She had some king of dental appliance affixed to her lower jaw (really obvious to a skilled lip reader) and I could tell that she was lisping. But nothing I can do about that now. I really do believe I would have have a 100% WDS score if she was not lisping so much. Bummer. I'll do better next time.

Anyway, after the hearing test, I had a minor remap to increase the audio levels. I had been gradually stepping up the volume during the day (switching from program to program). This is because I seem to have a narrow dynamic range in what I like to hear. That means there is a very small gap between what I think is too soft a sound and what I think is "too loud" sound. I've know about that issue since my first hearing aides (some 20 years ago).

But recently I discovered that I could easily tolerate the louder program as soon as I turned on CI each day and, in fact, the louder program no longer seemed to be loud enough for all environments. Hence my request for the slight remap.

The day after the remap, I tried out the new program on a flight from Las Vegas to San Jose. I used it to listen to some music from my I-Pod and was able to pick out many new instruments and words that I already knew were in the songs, but had not been able to clearly understand. So the new program looks like a good improvement. I also used the new program in several situations where I felt that I wasn't getting as much audio information as I wanted. I am pleased with the results.

One drawback of the new program levels is that I think that I am talking too loud (the CI picks up my voice very well). I'm not used to hearing my voice at that level yet, so it seems I may be talking too low for most people to understand me. What a change that is. In the words of my wife, I used to talk "Like a loud crazy street person..." It's too funny that people are now straining to hear me.

Cheers,

...dan...

(9678)

(NL-0044) China Sounds

More sounds from China. Right now, it's raining and much cooler than it has been. I'm in my home office here in Tianjin City, China, with the windows open. Just listening to the bus's air brakes and the auto's honking horns at the many bicycles crossing the traffic lanes. In the background, I still hear the insects chirping in the trees. Noisy here.

I went on a tour to Shhua Cave, near Beijing. Never had been in a cave before. This on was really large and very beautiful. Lots of echos there, but still able to hear well with my CI.

Oh ... here's a head's up for you. My BTE (Cochlear) is not at all water proof. In fact, it's all I can do to keep it dry here. It's so hot and humid here that I don't need to go the gym for a sauna; all I have to do is step outside.

In Las Vegas, it's very dry, even if it's 115 degrees. I never sweat there. In San Jose, it's pretty dry too. Again humidity is not a problem. But here I find that I can see water inside the battery compartment after only a few hours outside. Good thing I remembered to bring my "dry-store" box. Can't imagine how the BTE would keep working without it :-)

If you live in a very humid environment and are prone to perspire, I would recommend that you take a great deal of care with your Cochlear CI.

New Sound: Water dripping in the cave and the sounds that water makes as a boat cuts across a lake. Delightful.

The best sounds here, of course, are those from my little guy :-) I am continually amazed as how much he has grown and how fluent he is in Chinese and English. Here he is on his 4th birthday (last week!) . What a lady killer ;-)

...dan...

[9087]