Wednesday, April 29, 2015

He who has ears: Part 2; Ear 2, Day 1

This is significant. For the first time since I was diagnosed with Meniere's disease in 1993, I have 2 ears that work.  They may not be the ears I was born with, but they work.

Activation day for ear number two went very similar to A-day for ear number 1.

My appointment was at 9 a.m. and I was introduced to my new audiologist. She showed me a few things with the new processor and discussed what she was intending to do. Her goal for the day was to turn the processor on and send me home with a program to get used to some sound. To do that they need to hook your processor up to the computer and, as the brand of implant I have calls it, MAP your sound thresholds. You start with what is known as your T level, or the level at which you can first hear a sound.  My implant has 22 channels and they start with lowest tones and work the way up to the highest.  She only sets every 4th channel and then the computer program "sweeps" the ones in between. They are then checked to see if they all sound the same volume. T levels are a challenge because it is to be the softest you can possibly hear. Well, that is softer than my tinnitus rings.

When the T levels are set, she moves on to the C levels, or the loudest sound you can tolerate, without it being painful.  The same process is used. from lowest tones to highest, and then once again a "sweep" is made to fill in the blanks.

After she turned it on (I will return to that moment in a bit) we talked about the T and C levels, partly because we needed to just chat to see how things sounded.  I learned some interesting things. I asked her how my levels compared to "average" CI recipients, and she said my T levels were quite a bit softer than most. That doesn't mean I will hear better or worse, it just means that I do not need as much power for stimulation to take place.  She also was very impressed with the difference, in points, between my T and C levels. This is known as Dynamic Range.  She said that the goal on A-day is to achieve a dynamic range of 12 points average. Mine was 50. Wider is better because it gives more sound, which aids understanding.  She related that she had just activated another client's second implant. This client had been deaf from birth and was in his mid to late 20's.  On this person's A-day, she struggled to get 12, so my 50 kind of blew her away.

After the T and C levels were set, it was time. She looked at me and said, "are you ready for this?" I read her lips because she had turned off my first implant to program the second. Then she hit the button.  As I put in my prior blog, I had no idea what to expect. With the first, I had understanding immediately. I had no reason to expect those results again, but I was hopeful.

It was as close to emotional I have become with my implants. I once again had understanding and comprehension. That isn't what had me emotional, though. I knew I eventually would get to that point. What made me almost break down was the fact that for the first time in 20 years, I could hear out of both ears. At the same time!

Keep in mind that this is NOT typical of what happens on A-day. Most people will acquire understanding and comprehension, but it takes time.  Some longer than others. I feel just so blessed that I have had this response in both ears.

Of course, I got a whole suitcase of goodies again, including the rest of the wireless accessories. I purchased the mini mic in February and have been using it with just one implant. It is my personal microphone. If I am in a difficult hearing situation, I just give the mic to the person I want to hear, and his or her voice goes directly to my processor, bypassing the microphones on the processor, and blocking out the background noise I don't want to hear. Today it was paired to my new processor. Now sound will go to both at the same time.  I also chose to receive a bluetooth phone clip with this processor. I now can talk, hands free, on any bluetooth compatible phone, direct to my "ears". No more trying to find the "sweet spot". This was paired and the audiologist went across the hall and phoned me on my cell. I heard her in both ears and understood most of what she said to me. This will improve.  And I also got a TV streamer to hook up to my TV at home that will send the sound, in stereo, direct to my ears. And the last major item I got was protective sleeves, Aqua plus, that make my processors 100% waterproof.

I have 1 more  part of A-day to go. I go back to start the fine tuning, as I call it, of the new processor. New maps will be done fairly frequently to adjust to the changes in my new ear. At some point hearing tests will be performed.  I will post the results.

But for now, I CAN HEAR!

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, April 24, 2015

He who has ears: Part 1; Ear 1

The time between cochlear implant surgery and activation day (A-day) can be a time of anxiety for many people.  This is a huge undertaking. Chances are there is no going back, if there was any hearing left to go back to in the first place.  There is always an underlying hope that it is successful and worry that it may not be.  There are plenty of amazing videos to be found on Youtube of A-day, yet I wonder if they present a true picture of what takes place.

I was told by the audiologist on my first A-day that there are usually lots of tears shed when the implant is turned on for the first time, but not necessarily tears of joy. More like tears of relief that it worked.  Maybe it's a fine line between the 2. On my first A-day I shed no tears, but I do remember a smile on my face that just wouldn't go away.

Think about it for a moment. Here I was, a man who had been unable to have his hearing tested for at least 10 years because it had flatlined at the level of a jet engine, the loudest they could test, and with the press of a key on the computer keyboard I was back to normal hearing range.  If that isn't a miracle, I don't know what one is.

Granted, I was always told along my journey back to hearing that I was way ahead of what is typically seen. It may have something to do with being late deafened, it may have something to do with having normal hearing in the other ear the entire time I was deaf in my first implanted ear. Whatever the reason, with the press of a key, I was back.  I distinctly remember thinking to myself, as the audiologist pressed the key, that she had lost her mind if she thought I was just going to start hearing and understanding her. But in fact, that is just what had happened.

Of course there have been been challenges along the way, but going back has never even crossed my mind.

So now here I am nearing my second A-day. I honestly do not know what to expect.  It may be the same response as the first, it may be nothing like it.  The only thing I know for sure is that it is not a good idea to have high expectations. But, really, when you are deaf, what direction can you go but up?  You can't get "more deaf", you can only hear something, or nothing, and either way I am really no worse off than I am right now.

I still haven't decided if I want to, or even can, film my second A-day. I am not sure that seeing it on video as it happens will make it more real. I may have a better opportunity to explain what happened in words rather than video.  I just know that I am eager to find out what my response will be.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, April 17, 2015

A reason to celebrate

1 year. One very short, yet very long year. That is approximately how long it has been since my last full on, down for the count attack.  Reason to celebrate, or just be more alert?

With the given unpredictable nature of Meniere's disease, I think I will do a little of both.  I can look back at the last year with a sigh of relief, yet must always have in the back of my head that it can change at any moment.

And what a year it has been. Heartache, tough decisions, and hard choices mixed in with unbelievable blessings and opportunities.  I have learned more about myself in this past year than any other, and I have learned more about the good will of others than I ever expected.  New friendships gained, old ones strengthened. I have learned to not look within myself for all the answers, but to depend on God for his guidance.  I have become closer with my wife and children.

I am incredibly thankful for the medical care I have received from unbelievably talented doctors.  Their knowledge has not been lost on me.  I am thankful to have a great clinic in my "back yard".

Certainly there have been setbacks along the way in the last year, days where I just wasn't 100%, but just by my being more willing to lay out what is going on, I have found more respect for what I am dealing with than in the previous 20+ years of living with it, trying to handle it on my own by "toughing it out".  Sometimes you just get tired of carrying the burden alone.

What brought on this year of relative relief? I wish I could give an absolute answer. I do honestly believe the use of intratympanic steroid injections played a large part in helping to calm my ear down.  It is also possible that this was the final battle in my right ear as well.  The only way I will ever know for sure is time.  The longer I go without any attacks, the more confident I will become.  It has taken me a long time to get back to the level of confidence I am at right now, and I am no where near where I was prior to June of 2013.

The confidence is something that I am not sure I will ever get completely back, and maybe that is a good thing.  Good because it will not allow me to let my guard down, to pay better attention to what my body is telling me. Maybe I won't miss the early signs of an imminent return of the attacks or wander through life oblivious to their possibility.

Maybe that is what wisdom is all about. Finally figuring out your limits, and having the strength to acknowledge them, but at the same time not giving in to them, rather, knowing where to look to overcome and being willing to ask.

It would be nice to be able say that I am done with this but nearly 22 years of experience tells me otherwise. Vigilance will be always part of my life.  Having a broader network of people to lean on should make that easier. I wish I could also say what the future will look like for me. I am still working on figuring that out. Believe it or not, I am actually looking forward to that part. It is kind of exciting to not know what is coming my way.  I have already been blessed with some of the things I have been doing.  A new job that I have enjoyed, working for a good friend.  Opportunities that may develop from that job, and many other possibilities.

So, yes I have reason to celebrate, even if I am not finished with this disease, because it has, in the long run, made me a better person.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Friday, April 10, 2015

Let's get real about what a Cochlear implant is and isn't

Cochlear implants.

These 2 words have the ability to bring a huge smile to the face of many people, and yet have the ability to infuriate many others.

Having just had surgery to receive my second implant, I feel it may be fitting to share some history, knowledge, and my reasons for having them.


Although the greatest achievements in Cochlear implant technology have come in the last 30 years, the story of electrical stimulation of the ear dates well into the 1800's when Alessandro Volta began using wire rods placed in his ears to see if he could stimulate them.  Although very crude, he was able to achieve a sensation he described as ‘une recousse dans la tate’ (“a boom within the head”).

It was soon discovered that using direct current could not provide satisfactory results and the research switched to using alternating current in the mid 1800's which produced a sound like "the beating of a flies wings" in a persons ear.

All of the emphasis on hearing to this point was dedicated to the outside of the eardrum. In the 1930's Russian researchers found that hearing could persist without the eardrum and ossicles, leading to the conclusion that stimulation for hearing actually took place inside the cochlea.

In the 1950's research switched to the possibility of direct stimulation of the nerves within the cochlea itself, again beginning with a single wire placed in the cochlea being able to produce "sounds", but not any hearing ability.

In the 1980's the first single channel Cochlear implant was approved by the FDA for implant in children with all of the safety and efficacy issues being resolved.

In Australia, at the same time, a multi channel Cochlear implant was under development which was found to be far superior in speech recognition, and all research and development has been geared in this fashion since.

What a Cochlear implant is

Although alluded to in the history of the implant, what exactly is a Cochlear implant?

In it's most basic description, it is an implantable medical device designed to replace non functioning hearing.  It is a prosthetic device.

While research is ongoing, today all commercially available Cochlear implants consist of 2 parts; an internal electrode array inserted into a persons' cochlea, and an external "processor" that performs the task of taking sound and converting it into a form which can be used by the internal electrodes via radio frequencies through the skin.
Sample internal electrode array
External processor

The external "coil" is held in place over the internal "receiver" by means of a magnet making it possible for the external to be completely removed without any visible evidence of a person having an implant.

In the United States there are currently 3 manufacturers of Cochlear implants used- Cochlear, Med-EL, and Advanced Bionics (AB).  Just as with automobiles, all 3 will get you where you are attempting to go, and all have different "add-ons" which may appeal to different people in different ways.

What a Cochlear Implant is not

Now that we you have a basic understanding of what a Cochlear implant is, lets discuss what one is not.

First off, I will make the very bold statement of it not being evil.  There are many who feel this technology is not only not needed, but a threat to many people who have them.  I argue that it is no more evil than having a pacemaker, wearing glasses, etc.

Second, straight out, it is not a hearing aid.  It's function is not even close to that of a hearing aid. Hearing aids do just what their name implies, they aid a persons' existing hearing. But what happens when hearing aids are no longer of any benefit?  That is when it may be appropriate to investigate a Cochlear implant.  As I said before, it is a prosthetic device to replace non-functioning hearing.

Third, it is not a cure for being deaf.  I will always be deaf. I just use a Cochlear implant as a way to cope with being deaf, in the exact same way a paralyzed person uses a wheelchair, or an amputee uses and artificial limb, or other assistive device. In it's purest form, that is all it can be.  When I take off my processors, I am still deaf.

And lastly, a Cochlear implant is not for everyone.  It is a personal decision that you must make in consultation with your medical care team.  For some the choice is made for them because they will not benefit from it, for others the choice is left entirely up to them, and perhaps they don't believe it is how they want to cope with their loss.  A person also needs to qualify, medically, for one. You have to meet certain criteria in order to be considered a candidate.

Why I have Cochlear implants

As for me and my decision to have, now 2, Cochlear implants, it comes down the simple fact that I choose to hear.  I would find it to be a great challenge to learn sign language as the only source of communication, and the implants allow me to get back most of my former life.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness

Saturday, April 4, 2015

What just happened? Why? What do I do now?

I am on the verge of a major step because of Meniere's disease and I am a bit introspective.

April 8th I undergo my second Cochlear implant surgery. Hard to believe that just 2 short years ago I didn't even really know what one was, or think I would ever have or need one, and now I will have two. I keep finding myself asking the 3 questions in the title of this post.

It is still a bit surreal.

Yes, it came on a bit more slowly than just the last two years, but they have been the ones with the most dramatic effect on my life. It has been a time of major change due to how the disease affected me, and how I handled those effects. It has been 2 years of soul searching I never thought I would need.

You may have read some of the other posts and my discussion of my hearing loss. The fact is, for 18 years I was deaf, stone cold deaf, in my left ear, and at the same time, had perfectly normal hearing in the other. I am not diminishing what people with hearing loss go through, but in reality, during those 18 years I did not have any hearing disability, just a minor inconvenience of not hearing in one. Then one day it all changes. I have been through this before. It's part of the disease. It will come back, it always has before! But it didn't. Except for a temporary reprieve of four months following a steroid injection that even shocked my ENT. Instead it just started a downward trajectory that could not be reversed. It seemed as though every time I had a hearing test it was down more.  You just don't know how much it can affect you, until it's gone.  I hated, yes hated, trying to talk to people. I just felt stupid. All I could do was stare blankly. Worse, I felt there was no upside. A life of silence, except for the constant ringing, was all there was for me.

I knew it could happen, it wasn't a total surprise, yet I still find myself in a bit of a state of denial. I will wake up from this dream and my hearing will be back. They have to find a cure soon, don't they?  This isn't really happening, is it?  But it is.

The why question is one that I will never know the true reason in this life.  I can only trust that in God's infinite wisdom, it is for my best. I still find myself looking back to search for the cause. What did I change? What changed around me? How could I have prevented it?  Truth is, the answer may very well be- nothing.

So here I am with only one way to go: forward. I can't change the past, I can only try to figure out the best way forward.  For me, the first step in that direction is the implant.  I love my first one. I hope to say the same of the second.

I am fortunate to find myself in the hands of a man widely regarded as one of the best ENT/Surgeons in the country at one of the best clinics in the country.  I can go forward with the confidence that I am going to be well taken care of.

I can go forward knowing that I am much more open to opportunities as they present themselves.  I have no idea what those will be, but I am open and willing to look at anything.

I can go forward hoping that the worst of Meniere's disease is behind me.

I can and will go forward with a smile on my face and a positive outlook on my life.

I can go forward with rediscovered hearing that only 1 or 2 generations ago was not even a dream in someones head.

I can go forward knowing that whatever is in my future, it will be for the best and that gives me the most peace I have had in a while.

'Til next time


Just a guy trying to live with an invisible, potentially debilitating illness