Tuesday, May 15, 2012

Hearing with a Cochlear Implant is absolutely a Brain Thing

Hearing with a Cochlear Implant is absolutely a Brain Thing.  Let that thought sink in for a minute.

Recently I flashed back on the memory of my visit with my surgeon, August 2010. After telling me the risks of the surgery, he told me that getting fully used to a cochlear implant could take up to two and a half years.

I thought to myself, I'm a person who has worn hearing aids most of her life, the doctor doesn't get it that I am a high functioning deaf woman. Getting used to a cochlear implant will be challenging but it will be a slam dunk for me compared to someone who hasn't worn hearing aids for years.

WRONG.  NOT GONNA HAPPEN!

The good doctor is absolutely correct.  One year and seven months later after that initial Activation Day, November, 2010, my doctor knew what he was talking about.

The more recent the hearing loss, the more hearing memory you have.

The biggest mistake that someone can make is to put the auditory rehabilitation process in overdrive and race to the finish line. You set yourself up for disappointment that way. It is kind of like being back in school: So and so didn't study for the test and missed the last two classes and got an A.  So and so studied his ass off, took copious notes, studied for three nights straight, and got a C.

You literally are learning to hear all over again.  I cannot stress this enough. The harder you push yourself with listening to National Public Radio, music, "listening" exercises, the bigger the frustration and getting overtired.  That's a good way to bring on a migraine.  That hasn't happened to me, personally, because I knew not to push it.

I have said the hardest thing that I have ever done was to remove my behind the ear hearing aid to my unimplanted ear and wear my cochlear implant processor in my left, newly implanted ear.  My CI audiologist was right.  We had to force my brain to hear.  By June 2011, I was used to wearing my cochlear implant processor, and felt so imbalanced when I put my ancient behind the ear hearing aid in my right ear. I did get a taste of what hearing with two cochlear implant processors COULD be like.

 I wear my cochlear implant processors from sunrise to sundown.  The hearing process with the second cochlear implant - my right ear this time - is a lot easier now that my brain recognized the second cochlear implant. I had hopes that on Activation Day, March, 2012, that my brain would "click," and recognize the implant.  It did. My right ear has been catching up quickly. The same thing happened when I wore a hearing aid for the first time in my right ear when I was in college, at the audiologists' suggestion.  From then on, I hated what I called "single-sided" deafness.

I think back to November, 2010, and just laugh.  Sounds were wild and crazy, alright. My sisters were like, "Yay! Mindy can hear!"  And the entire time I'm thinking, Oh My God, this is NOTHING like hearing with a hearing aid!  My older sister wanted to know if I would be able to hear with an ipod one day.  I think back to her comment and just laugh all over again.

My "WOW"! moments have usually happened when I wasn't even TRYING to listen. The first time I heard a bird call, for instance.  I just knew that the sound was coming from the trees and wondered if that was a bird I was hearing.

Now, that I am bilateral, hearing with two cochlear implants, my world is a lot noisier, but I am starting to discriminate sounds - hearing different bird calls for instance, or different ring tones from a phone.

The thing that continues to stun me the most, is how deaf I am.  I am just floored at how I managed for so many years WITHOUT the benefit of cochlear implants.  I am reminded of that fact every night when I take my cochlear implant processors off and recharge the batteries.  My world was still silent, even with hearing aids.

How can you put a price on hearing?  I continue to be blessed beyond measure - experiencing the gift of two cochlear implants - a dream that is still out of reach of many.

Hearing with two cochlear implants is priceless.

Sunday, May 13, 2012

Distinguishing Bird Calls

I can now distinguish between the bird calls of a Cardinal, a Blue Jay and a Robin.  One afternoon I had just finished mowing the grass.  I heard this rather persistent bird from my neighbor's tree. It was pretty loud.  I saw a flash of blue and white and knew that the bird call came from a Blue Jay. 

Another afternoon I saw a male robin in my neighbor's front yard.  I went inside to drop my mail inside my townhouse, and then came back outside to watch the Robin and see what he would do.  He opened his beak and started calling. I just stood there, watching and listening.

I never get tired of listening to the birds. This is my second spring of hearing with a cochlear implant in my left ear, and my first with my right ear.

It has been an insanely busy month, both with work and weekend activities. Yesterday I ran into two alumni from deaf school days who I had not seen in years. It was good to see them and say hello and catch up on life. I told them I was now bilateral and had my second CI implanted in February.

A week ago Sunday I attended a baseball game of a minor league baseball team.  What was cool about the event, is that there is a section of the stadium where you can bring your dogs with you. I don't have any pets at the moment, but animals sense I am a animal lover.  I got adopted by a standard Yorkie who decided its owner wasn't paying enough attention and climbed into my lap and happily settled down. It was fun to listen to the sounds of baseball and enjoy the company of people and the dogs.

My world is indeed noisy.

Being bilateral and hearing with two cochlear implants is such a gift! 

Sunday, April 29, 2012

Some challenges

About a week ago I had a nasty surprise. It was Monday, and we had really stormy weather over the weekend. I was feeling off and sounds felt unnecessarily loud.  I came home and had a light dinner, and sat down to watch the news.  All of a sudden the television volume was loud. It is set on 27.  I turned it down to 13.  Then I experienced spinning dizziness as in taking a narcotic type dizziness on top of my head and in both ears along with tinnitus. 
I got really nauseous, and barely made it to the bathroom where I threw up dinner.

I was intermittently sick for about an hour.  By 7PM the nausea had subsided, but I was tired and decided to go to bed and sleep off the dizziness.  I felt fine the next day, but my stomach was still unsettled, so I didn't eat anything which might upset my stomach.

The whole experience was unsettling because I was a kid who never threw up on carnival rides or got car sick.  I just rarely throw up.

Well, I contacted my otolaryngologist's office - he was also my surgeon - and heard back from the nurse.

The single-sided deafness which I described in an earlier post - wasn't single-sided deafness at all but vestibular migraines.

I have a history of migraines. I have had hormonal migraines - caused by hormonal changes during menstruation, and I have had diet and stress induced migraines.  As I have gotten older, I have "outgrown the headaches" but not the migraines themselves.

If you ever have had a migraine, it is usually accompanied by severe throbbing headache on one side of the head, nausea and vomiting, extreme sensitivity to light and noise, and the need to go to a dark quiet room to sleep.

A lot of people, including myself, were unaware that there is also a link between migraine,  the inner ear and brain mechanisms that influence hearing and balance.

The vestibular symptoms are these:  Vertigo, Imbalance, Dizziness, Unsteadiness, and extreme sensitivity to motion.  I have definitely had four of these symptoms. The sensitivity to motion, rarely.

The hearing symptoms are these:  Muffled hearing, ear fullness, tinnitus or ringing in the ear. I have had all of these symptoms.

I also am affected by changes in the weather, especially a change in barometric pressure. Anytime the weather gets stormy, whether it is rain, snow, extreme weather changes, I feel it, or rather, my body feels it.

After reviewing my medical history and symptoms, I was told my Monday night episode was most likely a vestibular migraine (without the headache) especially as it was closely related to weather changes. I was really shocked, yet not surprised.

I have been watching my intake of salt, sugar, chocolate, red wine, cheese, and stress, so as not to trigger another vestibular migraine.

Hearing is on a spectrum.  There are waves of sound, and even with two cochlear implants, my hearing fluctuates. My office is a noisy atmosphere, and there are people who work in my office who are loud.  They don't do this deliberately, but they are loud.

Environmental sounds are loud to me right now.  It is not painfully loud, but my brain has not tuned out the loud environmental sounds.  Voices still sound scratchy, as do lyrics. My speech discrimination is slowly improving, but I am not yet at the point where I can chatter away on a smart phone.

I spent a nice quiet, relaxing lunch with my younger sister, her mother in law, and two of my nieces yesterday. They were in town to attend a baby shower later that day. The food at the restaurant was delicious and we had a good time.  I was able to carry on a conversation with everyone, and only had to ask the waiter once to repeat what he said. That's a good thing.

I will have another "tweaking session" in about four weeks.  I think I will ask my audiologist to tweak the cochlear implant processors so that the environmental noises are not quite so loud.  I also want to get rid of the scratchiness in the voices.

Still, hearing with two cochlear implants is wonderful.  Hearing is such a gift.  I feel blessed beyond measure.



Wednesday, April 18, 2012

A Tweaking Session, Options and Progress

Yesterday I returned to the Cochlear Clinic for another tweaking session. My audiologist left my left ear processors alone and just tweaked the processors for my right ear. I actually have four cochlear implant processors. One set is worn behind my ears like a behind the ear hearing aid. 

Think of a behind the ear hearing aid without tubing and a earmold.  There is a ear hook with a microphone for the behind the ear cochlear implant processors. That, along with the magnet headpiece is what activates the surgically implanted cochlear implant or turns it on.  

The second set doesn't look like the traditional cochlear implant sound processor at all. You can wear these totally waterproof cochlear implant processors in your hair, clipped to your clothes, using a lanyard, using a headband, or armbands. You still have your magnetized headpieces and the cabling. The left processor is color coded pink, the right processor is color coded blue. You can choose colors - I just did it that way so I could tell which was which. It is convenient- it doesn't matter if you switch up right to left, the processors won't work.  It was engineered that way. I just love the off the ear option, though!

On an earlier post, I mentioned that someone from my cochlear implanted community of friends said not long ago, it is a great time to be deaf because today we have so many choices!  She is right.

Here's an option now available to me with the totally waterproof sound processors which I didn't have before - the choice to take a water aerobics class and to be able to totally understand the water aerobics instructor.  A choice to go to a waterpark with my six nieces and nephews, and to be able to hear the excitement in their voices and screams of delight at cascading down a water slide.

I am hearing more in surround sound than I am hearing new sounds. Bird calls do not sound exactly like.  A Robin's bird call is different than a Cardinal's bird call. I discovered that a co-worker has different ring tones on her office phone that alerts her to who is calling, a supervisor vs. a co-worker, or someone calling with a question, problem or comment.

My audiologist had me take my left ear processor off, leave the right ear processor on, and she covered her mouth and said words to me, airplane, hot dog, sidewalk, ice cream, and so forth, listening with my right ear. I got it 100% right.  Here's the irony.  I didn't wear a hearing aid in my right ear until I was in college.  That ear has technically been my "better ear."  I wore a hearing aid in my left ear from age two and a half until I had my left ear implanted in October, 2010.  Even with a hearing aid, my right ear did better with noise comprehension than auditory verbal responses. I figured the same would be true of me with a cochlear implant in my right ear.

I am completely left side dominant.  I write with my left hand and prefer my left side for just about everything. I have a sneaky suspicion that over time, my newly implanted right ear is going to be the dominant ear.  I wouldn't be surprised if I end up having phone conversations one of these days using my right ear. 

My next tweaking session is in May, in about five weeks. My audiologist wants to test my hearing in my right ear with the cochlear implant using the sound processor. She will also test both ears.

I still find myself ingrained with deaf behaviors.  I can't help it.  Last week we had a meeting at work and those folks from around the country phoned in.  We had a polycom - a  conference speaker phone.  Well, being deaf all these years, I sat CLOSE to the polycom. HUGE mistake.  With cochlear implants, you don't do that. You sit further down the table. Speech can be tricky, because LOUDNESS can distort speech for a cochlear implant user and make it nearly impossible to understand a conversation.  I'm still on the learning curve here.  What I should have done is flipped the switch on my processors to a quieter program and turned the volume down a bit. Lessons learned. There are some hearing folks who still think that cochlear implants amplify sound. I'll say it again.  Cochlear implants bypass the damaged nerves in the middle ear and directly stimulate the cochlea, which translates the electronic impulses to the brain as sound.  A cochlear implant is an engineering feat. It comes pretty close to the human ear in terms of hearing.

My surgeon was interviewed recently on National Public Radio. The interviewer asked him, due to the advancement of cochlear implants, is deafness "a choice"?  My surgeon replied,
"We are already there." The sad thing, is, for many deaf people, cochlear implants are not an affordable option.  I can understand that.  I probably qualified for cochlear implants 12 years ago.  My health insurance at the time, though, only covered 30% of the cost of cochlear implants and surgery.  Today, many health insurance companies cover 80% to 85% of the cost of surgery and cochlear implants.

I do not miss single-sided deafness.  I do not miss ill-fitting earmolds, feedback and I definitely do not miss hearing aids. My world is definitely noisier.

Being able to hear out of both ears, having both ears implanted with cochlear implants, totally ROCKS.

Being able to hear with two cochlear implants is such a gift.


Sunday, April 8, 2012

Easter Blessings

I spent a relaxing Easter Sunday reading the Sunday paper and eating breakast.  It was a bit chilly this morning but the sun was out. I am definitely hearing out of both ears with the two cochlear implants.  I practice hearing with just the right ear cochlear implant processor for a few hours as part of auditory verbal training.  Right now my right ear just compliments my left ear and I hear surround sound.

It is nice not to experience single-sided deafness and to be able to hear out of both ears. I am hearing traffic noises of cars blocks away before I even see the car coming.  I ran an errand earlier this morning and a woman who was driving, and not paying attention to her surroundings, nearly ran into me in the parking lot.  I was able to brake in time in order to prevent her from sideswiping my car.

There are some deaf behaviors I haven't been able to shake as a deaf driver.  If I can, I will back into a parking lot trunk first so that I can see while pulling out of a parking spot.  I still will tap my horn and honk a little before backing out.  I am amazed at the number of distracted drivers out there.  I think distracted drivers are very scary.  For years I had to rely on sight as a deaf driver and to this day I am very visual.  I still use my eyes as my guide rather than my ears.

Still, it is nice to be able to hear out of both ears when driving on multi-lane interstate roads, especially during rush hour. I do find that I am not as anxious driving from my home to the cochlear clinic for mappings.  I won't say I am a relaxed driver, but I am used to making the one and a half hour trip (two if it is bad weather) from my home to the cochlear clinic and back home again.

This Easter Sunday I am definitely counting my blessings as a bilateral cochlear implant recipient. I know there are more sound flavorings to get used to.  I continue to be surprised at how deaf I am when I take off my cochlear implant processors at night. It is pretty quiet. It is even more amazing when I think about all those years how I functioned with my deafness, especially as it got worse over time.

I definitely hit the Hearing Lottery in realizing the dream of cochlear implants.  I consider myself blessed beyond measure. 

How can you put a price on Hearing?  Hearing with two cochlear implants is priceless.

Saturday, March 31, 2012

A Breakthrough In Listening To Music and a Surprise

It is four days post-activation with the second CI. I have been faithfully taking off my processor for my left ear when I come home from work and just listening with my right ear. My right ear is catching on fast and I was actually able to understand some commercials on TV without captioning. I definitely have directionality of sound and while I am hearing some new sounds, it is more of hearing more with both ears than it is anything else. 

Today I was at my computer and decided to listen to Spotify again.  I set my left ear processor to the music program (my left ear being my dominant ear) and left my right ear processor alone.  I chose Seals and Crofts "Summer Breeze," because male voices are what I hear best listening to music. The music AND the singing came through clearly, although still somewhat scratchy.  I understood most of the song.

Then I tried listening to Seals and Crofts "I'll Play For You," and again I heard and understood most of it.

I switched to Fleetwood Mac's "Dreams."  I understood the chorus and some of the lyrics.

Next, I tried Coldplay's "Clocks." I heard the music but didn't understand the lyrics.

I discovered something. Not all of the song tracks on Spotify are of good quality.  I wonder if that is true of radio as well. The stereo systems that they install in cars are not that great unless you spend some serious money for GOOD STEREO in your car.

I had a hearing joke played on me today. I had asked my CI audiologist if processors reacted to electromagnetic interference on computers, cell phones or smart phones.  She said they can.

Well duh.  Today I was reading through e-mail on one of my accounts. That so-called "static" that I heard?

The "static" was the vroom-vroom of car engines in an on-line advertisement on my
e-mail web page!!!!

I just laughed and laughed and laughed and laughed. How's that for a good clean hearing joke on a deaf woman with two cochlear implants?

You have to admit that it WAS funny!  I wonder what other hearing surprises are in store for me, now that I can hear out of both ears?

Hearing with two cochlear implants is priceless.

Thursday, March 29, 2012

Being Binaural or Bilateral, Day Three

When I walked into my office yesterday, there was a surprise waiting for me.  On my desk, there was this beautiful potted fuchsia orchid. In front of the orchid, there was a card.  I opened it.  It said on the front, "Yay for you"!  The inside of the card said a congratulatory message, and everyone in my office signed it, and they were congratulating me on receiving my second cochlear implant.  I was so glad nobody was there to see my tears. I was really touched. The gesture was totally unexpected.

Easing back into work has been more tiring than I thought. I have been battling allergies, sneezing, and dealing with a tender right ear.  The incision has just about healed. I returned to the cochlear clinic today and got "tweaked" again.

Sounds are not wild and crazy, and speech is understandable as long as I'm lipreading. The speech discrimination without captioning is improving, but nowhere am I ready for a gab session on a smart phone just yet. It is a relief to have both ears implanted now and activated.

The balance issues have just about gone, but I still have touches of wooziness when I get out of bed in the morning.

Music is fine. Lyrics still sound scratchy, but words will come through clearly every now and then.

I had my Magellan GPS in my car when I went to the cochlear clinic. I can understand some of the verbal instructions now, and the GPS now has an audible bell that I can hear when I am getting ready to turn onto a street.

I had forgotten how tiring it is getting used to a cochlear implant. Yesterday my ears were battling each other in order to be the dominant ear. It truly is a brain thing.  You cannot force hearing new sounds.

It is noisy. I hear more environmental noise from within my townhouse. I can hear myself rubbing my hands. I didn't know you could hear that. I am definitely hearing out of both ears, there is no question about that.

I am sleeping like a baby. The Hearing Dreams have quieted for now.

Hearing with two cochlear implants is such a gift.