Friday, August 31, 2012

Lessons Learned

I have been bilateral for six months.  With two CI's, I am learning to discern what feels "balanced" in terms of hearing out of both ears.  One of the hardest concepts I have had to learn is the fact that sound is a spectrum.  When you go for a mapping session, there are many variables that can contribute to a mapping that feels "off."  It can be allergies, a cold.  

In my case, having worn hearing aids for many years, I thought I had a good grasp of what a good mapping session would be.  With each mapping session, I was pushing the volume of each electrode higher, signaling to the audiologist that the sound was "comfortable."

I had my last mapping session in May.  During the next three months, I started feeling like I was being bombarded by sound.  Sounds weren't loud, just incredibly noisy.  It was too much of a good thing. Voices sounded distorted.  Sounds were unusually sharp and sounds like typing on a keyboard and my office mate chewing and snapping gum all day were unpleasant to hear.  I could hear my office mate from the opposite side of the wall which separates our office.

I still struggled with imbalance issues (not uncommon for six months post surgery), vestibular migraines (without the headache), and it was getting old, feeling slightly drunk all the time.  My ears felt like they were constantly at war with each other.  I knew I take medications that can contribute to dizziness.  I resigned myself to the fact that I would forever be a klutz.

My audiologist is currently on maternity leave.  When I returned to the Cochlear Clinic on Wednesday for my six month mapping, I told the substitute audiologist that the mappings were really off, and told her everything that was going on with me.

She re-mapped the processors electrode by electrode.  The first clue that I was being overstimulated by sound was that my face beneath my right eye started twitching.  I was totally unaware this was happening.  The audiologist saw that, and with each electrode, she clapped her hands loudly to see if I would twitch, and then adjust the mapping thresholds accordingly. The twitching sounds painful.  I can assure you that it wasn't painful at all.

The audiologist "tweaked" the mappings, asking each time if the sound was too soft, too loud, or just right. For the first time, voices sounded natural and I felt "balanced" in hearing out of both ears.

Yesterday I got up to get ready for work.  I noticed I was not woozy, dizzy, or experiencing imbalance issues.  I tilted my head back, to see if I was dizzy.  Nothing.  I felt very steady and not at all off balance. Today, the same thing.  I could not hear my office mate chew and snap gum from the wall which separates us, much to my relief.

The difference in the mapping is just HUGE.  I had no idea or clue that I was possibly being overstimulated by sound.  Again, cochlear implants do not amplify sound.  That is not the objective.  You want to hear high, middle, and low frequencies, and not necessarily loud, either.

I am just absolutely stunned that one mapping session produced such drastic results.  I feel as if I am hearing "normally," and I do not feel unbalanced, nor are sounds constantly noisy.
I am hearing where the audiologists want me to be on the audiogram.  My speech discrimination score was 25%.  Given the fact that in April and August of 2010, I scored a big fat zero in speech discrimination, this is definitely progress.  Now that the mappings are where we want them to be, I think the speech discrimination will improve.

Lessons Learned.  Hearing with two cochlear implants is still a blessing!  


Monday, August 20, 2012

Misinformation, The dangers of Social Media and Cochlear Implants

Last night I came across a posting from someone from deaf school days.  This person had posted this picture of an x-ray of a human head.  There was an implant and a cochlear processor, and the picture depicted someone in the throes of a horrible headache - a migraine.  Beneath the picture was the caption, "Cochlear Implants Can Be Dangerous."  Almost immediately, this posting generated a lot of nervous responses, all based on half-truths, inaccuracies, and misinformation.  There were those who posted back, saying that they knew of individuals with cochlear implants whose surgeries were all successful.

One person commented you can't get an x-ray with a cochlear implant.  Another said, if you have dizzy spells and headaches, you can't get a cochlear implant.  Still another person said, I don't want to see someone in that much pain. Yet another individual proclaimed hearing aids "safer" than cochlear implants.

Here's what I DON'T MISS about Hearing Aids. Feedback. Pressure sores from ill-fitting earmolds. Itchy Ears!  Ear Wax! Cleaning earmolds!

The individual who posted the picture also told horror stories about friends who this person knew suffered adverse effects from cochlear implants.  For a person who claimed NOT to be "against cochlear implants," I noted with some amusement, that this person chose not to tell the other side of the story.  This person and I personally know three other individuals from deaf school days and who are alumni of this school for the deaf we attended years ago.  Three alumni of this school chose to get cochlear implants.  The surgery was successful, and, these three individuals have no regrets about their decision to undergo cochlear implantation.  In fact, one of the individuals and I met again at a convention and shared a hotel room during our stay.  This person did not appear to have suffered any long-lasting "ill-effects," from the cochlear implant surgery.

Yes, there are failures.  Yes, there are those individuals who, for some unforeseen reason or another, the cochlear implant surgery and usage of a cochlear implant, did not work out. There are those individuals where there was implant failure.  The implant was removed surgically and a new implant surgically implanted.  Out of eight "failures" out of 28,000 cochlear implant surgeries performed in 2010, (using the CI implant I chose), all eight were reimplanted successfully. The reimplantation surgery required one week's recuperation.

This never-ending discussion about the pros and cons of cochlear implants, made me think about the early days of heart transplants and open heart surgery.  For those of us who are old enough to remember, there were a lot of very sick, brave individuals who died on the operating table for a chance to live a healthy life for a few hours, days, weeks even, with a artificial heart, or a real one.

Today, heart transplants and open heart surgery is commonplace.  You don't usually have people running around saying, OMG! Heart transplants and/or open heart surgery can kill you! 

Well, yes it can.  There is risk involved in ANY type of surgery, INCLUDING heart transplants, open heart surgery, dental surgery, and yes, cochlear implants.

I can definitely tell you for every story of a "failed" cochlear implant, I can introduce you to at least 25 individuals who have had successful cochlear implant surgery and are enjoying the benefits of cochlear implants.

My vestibular migraines started long before I ever had cochlear implant surgery.  I started having headaches before it would rain, starting at about age 11. The headaches were either weather related and/or hormone related.  I had not had a migraine since 2002 when I was being evaluated for cochlear implant surgery.  As I have gotten older, I thought I had "outgrown" the migraines.  The imbalance issues and vertigo got worse over time, due to the effects of Streptomycin given to me at birth.  As my deafness worsened, so did the imbalance issues.  I have always been clumsy, due to the deafness.

I found out very recently, that the vestibular migraine episodes (minus the headaches but not the vestibular symptoms) were again hormonally and weather related.  As my right ear adjusts to the cochlear implant and subsequent mappings, I am confident that my left ear and my right ear will be what I call "balanced." I have had two bad episodes of vestibular migraines four months apart.  I do not have headaches, dizziness or vertigo every single day.  Far from it.

NEWSFLASH.  By the time I was evaluated for cochlear implants, I tested within the limits of the audiometer.  I have been profoundly deaf for YEARS.  Hearing Aids were no longer helping me, and I had absolutely nothing to lose and everything to GAIN by getting a cochlear implant. I now have two, one for each ear.

I was absolutely blessed in that I had both cochlear implant surgeries done at a hospital that has consistently ranked #1 in U.S. News and World Report for cochlear implant surgery.  I was even more blessed to have a surgeon who is internationally famous for his expertise in his speciality.  This talented surgeon did both my cochlear implant surgeries.

There are very competent surgeons and hospitals all over the United States and abroad who have successfully performed hundreds, if not thousands of cochlear implant surgeries. I have met many of the cochlear implant recipients.

That said, there is a reason why a patient being evaluated for cochlear implant surgery undergoes rigorous screening. You may have a psychological or psychiatric evaluation to determine your readiness for cochlear implant surgery.  I did not have this evaluation.  Not all hospital protocols are the same.  I had labwork, a CT scan.  Some require MRI's.  I had an extensive medical history taken, and audiograms done.  I also had a pneumonovax vaccine prior to surgery.  The hospital which performed my CI surgeries will not do the surgery until you present them with a vaccination certificate which certifies that you have had the pneumonovax vaccine.  You are told of the risks of cochlear implant surgery.  Depending on one's hearing history, you are also told the time frame it will take you to get used to the cochlear implants. The medical/surgical team has a staff meeting and they determine your readiness for cochlear implant surgery.  Then you are notified of a surgery date.

As for "pain," any pain I had after surgery was well managed with prescribed pain medications.  At no time was I ever in excruciating pain.  Ever.

Before I took my own journey in learning to hear with cochlear implants, I talked with individuals who were successful cochlear implant recipients.  One was late-deafened as an adult.  Still another person was born deaf. 

For those of you who are tempted to take social media postings such as
the proclamation that "Cochlear Implants can be Dangerous," as the gospel truth, take what is said on-line with a grain of salt.  Do your own research.  Talk to people who have received cochlear implants.  Talk to doctors. Talk to organizations for people with hearing loss.

Someone who I have come to consider a dear friend, said recently to another person who recently had cochlear implant surgery and is awaiting activation along with a relative who fears the implant won't work:  "No one can steal your joy unless you allow them to." This person was saying be joyful about your decision to get a cochlear implant and don't allow your relative to spoil your joy.  Well Said.

At times I have behaved like a child opening presents on Christmas Morning with unrestrained glee.  For years, I've been jealous of hearing people who could talk on a smartphone, listen to music on an ipod or an MP3 player. 

I now have my own!  It is a lot of FUN listening to music on an ipod nano!
I'm learning to talk on a smartphone.  I have had three conversations on it and am pretty sure I got most of the conversation!

I often times think back to my Activation Day in November, 2010, and just
laugh.

I have SO come a long way, baby! WHOO HOO!

CARPE DIEM! One Hearing Day At a Time!!

Hearing with two cochlear implants absolutely ROCKS. 

I had nothing to lose by taking this journey and everything to GAIN.  Thank You, God!  Would I do this again?  YES!!

Friday, August 17, 2012

Another Vestibular Migraine and a Meeting

It is raining.  I can hear the raindrops drumming on the roof.  We needed the rain. I suffered another Vestibular Migraine Episode a week ago Wednesday, complete with nausea and vomiting.  I contacted my surgeon's office and was given a Migraine Diet.  It seems to be working.  I am just amazed at how much salt there is in processed foods.

Now that I have had two full-blown Vestibular Migraines four months apart, I absolutely know my "triggers" and what to avoid. Weather is definitely my first "trigger." I met the woman I have been mentoring at the hospital.  I met her father.  My mentee and I share the same surgeon and same audiologist.  She was at the hospital to meet with our surgeon and to make a decision whether to go with a second CI.  We discovered that we had both been sick a week ago Wednesday night.  We were "twins" for a night. We talked to the surgeon's nurse while we were at the hospital.

I had never met anyone who had misgivings about a second cochlear implant.
This woman's father has never really been exposed to deafness, and the same is true for the sisters in this family. 

Our surgeon examined my mentee, and told us that his recommendation was that she go ahead with a second cochlear implant in her unimplanted ear.  The father said to the surgeon that he hated for his daughter to go through all that (the surgery) again and couldn't he just give his daughter another shot in the ear? 

Our surgeon was firm in his recommendation that my mentee have the second cochlear implant surgery. He explained that because she has Meniere's and the disease is quite active, they hoped to preserve what vestibular function was left.  My mentee wants the second cochlear implant.  Her father doesn't want her to go through with the second cochlear implant surgery.

We met with the audiologist, who tested my mentee's hearing, and sure enough, the audiogram revealed further loss of hearing in the unimplanted ear and established her candidacy for the second cochlear implant.  The Audiologist also mapped the cochlear implant processors, and explained the benefits of a second cochlear implant.

As my mentee was deafened as an adult, she has what we call hearing memory.  She did very well on the speech discrimination tests in her implanted ear and is making great progress.  She scored a big fat zero on speech discrimination in her unimplanted ear, which we had expected.

While my mentee was in the testing booth, her father and I were in the waiting room and I had a window of opportunity to discuss with him what was happening with his daughter.  He has difficulty grasping what deafness is, so I explained deafness to him in terms he could understand.  He still did not understand why the second cochlear implant was necessary, and referred to his daughter as "almost normal," with the inititial cochlear implant.

This experience was an eye-opener for me.  I had never dealt with a hearing person who really didn't want his daughter to have a cochlear implant in the first place, and wanted her to "preserve" what "natural hearing" she has.  It also affirmed for me the difficulty people have in grasping that a hearing disability is real, although invisible.  The same is true of having a disease like Meniere's.  The disease is invisible to most, and only becomes apparent when the person staggers, struggles with balance, or falls to the floor, or is so dizzy nausea and vomiting result.

My mentee has dealt with her permanent hearing loss a lot better than others.
The loss of hearing has been gradual over a period of three years, accompanied by vertigo and imbalance issues so severe, she has been unable to work and had to go on disability from her job.

I gave my mentee a signaling system that will alert her to sounds she cannot hear without the cochlear implant. She and I have to take off the cochlear implant processors to sleep, shower, and bathe. During those times, we are deaf and cannot hear a doorbell, telephone, smoke alarm, door knock, tea kettle.  I had purchased a newer signaling system prior to getting my first CI, and hadn't set it up.  When I found out my mentee didn't have a signaling system, I was glad to give her my older signaling system. She gave me a gift of canned pickles and salsa she made herself.  Yum!

I don't know if her father realized after our meeting that it was and is possible for his daughter to lead a full life with cochlear implants in spite of her deafness.  Right now, all he can focus on, is that his daughter is now DEAF and he questions whether the second cochlear implant will be beneficial to her, or lessen or eliminate the vertigo and Meniere's attacks.

There is light at the end of the tunnel.  She has a surgery date set for October 31st.  At that time, it will have been eight months since the first CI.  She is going ahead with the surgery in spite of her father's misgivings.  I am confident that her father and her sisters, over time, will come to the realization that being a bilateral cochlear implant recipient is the best thing to happen to their daughter and sister.

My mentee and I are deaf individuals who lead full lives in spite of our deafness. The miracle of cochlear implant technology allows us to hear with our cochlear implant processors on.

We have faith, optimism, and hope. One of my greatest joys right now is the fact that I am able to be a blessing to other deaf individuals who are new cochlear implant recipients, and to be blessed by them as well.  We share our experiences, our setbacks, our frustrations, and our "WOW"! moments.

What a Hearing Journey it has been.  I just look back at my Activation Day experience in November, 2010, and just laugh.  I have come a long way since that initial day of wild and crazy sounds.

Hearing with two cochlear implants is such a blessing.