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.