Wednesday, August 5, 2015

Still Waiting For Word From Surgeon

The audiologist predicted two weeks.  I predicted three weeks.  We were both wrong.  It has been three weeks since my audiological evaluation and no word from the surgeon.  I received the written audiological report two weeks after the audiological evaluation so I wonder if I should be counting two weeks from that point. I actually started this process in April.  It is now the beginning of August and I still don't know with certainty that I am going to receive an implant.

I have tried to plan my time to be busy so I don't obsess about the implant.  I have kept up with Facebook's Cochlear groups and the Cochlear Community.  I started my own blog. I have gone to dinners with girlfriends.  I have gone on a week long trip to the mountains (May) and  I have gone on two long weekend trips to Homosassa Springs to visit with my girlfriend and take sewing related classes( July.) I have made a Penquin quilt for my son's girlfriend and a Butterfly baby quilt for my niece (May-June.) Now I have started a Christmas quilt to give to one of my sister-in-laws.

In the background of all this busyness remains the waiting.

Wednesday, July 15, 2015

Audiological Criteria for Eligibility - Check

Today, my audiological evaluation lasted three hours.  My right hearing aid quit working at the very beginning of the appointment.  The audiologists were wonderful. They did not hesitate. They pulled out loaner hearing aids, programmed them to my hearing, and off we went to the magical sound booth.  Testing, testing, testing-first the right ear, then the left ear and back again; in quiet environments and in noisy environments; sounds, words and sentences.  My hearing (or lack of hearing) was thoroughly tested. 

The results, as of today, three audiologists and one graduate students have determined I meet eligibility for a Cochlear Implant.  Now, my file is sent to the surgeon.  I may live in a city that is the capital of the state (and has two state universities) but the surgeon is located at a teaching hospital three hours away. The estimated time for response from the surgeon is two to three weeks. 

If found eligible by the surgeon (and the insurance company) I will have to go to Jacksonville for the surgery but, I will be able to do the mapping and follow-up therapy here at FSU Schendel Speech and Hearing Clinic.  The cochlear implant services are fairly new at the clinic but they indicated they are already working with several people who were going out of town for their mapping and therapy.  Also, they recently referred a person who will have implant surgery on July 21st.  I suspect they have just touched upon the need in north Florida. As the word gets out, they will have people flooding the clinic. 

I am excited to be involved with this progressive technology.  I will do my best so that my efforts will somehow benefit others. Somehow  today, the wonderful team at FSU Schendel Speech and Clinic made better hearing seem within reach. Hope is a priceless commodity 

Tuesday, July 14, 2015


Tomorrow, I take the first step to see if I am eligible for a Hybrid Cochlear Implant.  After a two hour appointment with an audiologist, I will know if I am eligible for the next step.  I don't know what the next step will be at this point.  However, at some point,  there will be dealing with the insurance company.  According to what I found online the  insurance company is reviewing their policy on implants tomorrow.  One can hope they will not be the stumbling block in this process.

I don't remember ever not being hearing impaired so, why would I want to change now?  I have successfully made it through public school and university.  I have worked over 30 years and I did well in my field. My husband and I raised two boys,  took care of my mother-in-law, and helped keep a roof over my brother's head.  But, at some point it all became too much.  I am now on disability for a variety of reasons including my hearing impairment.

I  tend not to wear my hearing aids during the day when I am home.  I am comfortable with the silence. Then again, there is no one home but me now.  My mother-in-law, Hattie, passed. My brother moved to Minnesota. My youngest son and my husband work during the day. My oldest son moved out years ago.

But, I am not always alone. When I am with people-- and wearing my aids-- I am aware I miss too much of the conversation.  Speech reading only carries me so far in a conversation.  I have to be able to see the person talking, they have to enunciate, and they have to be in a frequency that I hear.  Thus, children and females are usually hard to follow as they are usually in the higher frequencies.  In the car, especially at night, it is impossible to carry on conversation with a group of people.  I do best with face-to-face conversations with males in well lit places.

Frankly, I am just tired of missing out on conversations, tired of asking for repeats, and tired of sitting in silence while the conversations flows around me. I am ready to expand my horizon again and hearing well is part of that plan.

Wednesday, July 8, 2015

7 Days And Waiting

For the past three days I had a slight  ear ache and slight vertigo. I used Claritin, Dramamine and Excedrin to calm everything down.  What a worry.  All I could think of was all this waiting and the evaluation would have to be rescheduled because my ear got infected.  It has been a long, long time since I had an ear infection. So, it was improbable, but not impossible, that it was an ear infection.  Today, I feel fine so we are moving forward...with the waiting that is.  I still have seven days to go before the evaluation.

The trick to developing patience is to keep yourself busy.  Yesterday, I had lunch with a friend, Linda.  Today, I am cleaning house and doing laundry to stay busy and pass the time.  Friday, I have gift certificates and coupons so I will go shopping. Sunday, we are going to shoot photographs at Panama City Beach with Tom and Teresa.  It will be our 35th wedding anniversary.  At this rate, I have something to do every other day, something to help me past the time.  In between being active,  I research Cochlear Implants and write on this blog.

Sunday, July 5, 2015

July 4, 2015

A wonderful birthday. In the morning we went riding in the forest and shooting pictures with Tom and Teresa.  Then,  friends and family gathered for dinner and to celebrate my birthday. Facebook was full of well-wishers.  I am 59 years of age and embarking on a new journey for technology to improve my hearing.

In the evening we sat on Tom's and Teresa's front porch, with Gayla and Craig,  and it was a perfect example of where my current hearing fails  me.  We were in the dark watching  neighborhood fireworks. The conversation and quips were flowing.  I missed 3/4 or more of the conversations.  My husband was ever so gracious to check in with me every now and then.  But, he could only do so much interpreting in that situation.

My research into Cochlear Implants includes joining  blog communities, facebook communities, reading articles on internet and reading books.  I am finding lots of success stories: some are fabulous stories of hearing immediately.  Other stories are not so successful; where individuals are waiting months to hear and the progress is ever so slow.  Then, there are a few who are so overwhelmed by the noisy world they stop using the implant.  The facebook community, Cochlear Town USA, has made me aware of issues and solutions that I have not begun to consider.  The good news is there are solutions.

The only thing, not known in advance, is whether the implant will work for me or not.  By sheer numbers, the odds are in my favor but, I can't be sure until I go through the surgery.  Not even the experts can predict beforehand how well the implant will or will not work.

Here I am ten days out from the initial evaluation and talking as if I am going to be declared eligible, insurance is going to approve, and the process is going to move quickly. The reality is this is probably going to be a slow process with stumbling blocks along the way.  Therefore, I have to get a handle on this thing called patience.  I have been obsessing on CI for 20 plus days already.  I am not sure I am going to get a handle on this thing, called patience,  in this lifetime.

Friday, July 3, 2015

13 Days and Counting

I spent a lot of time on the computer today. I broaden my search beyond Hybrid Cochlear Implants (aka short-electrode cochlear implant) and opened up to cover a wide range of topics related to rehabilitation and high frequency hearing loss.  I found a lot of information. It was valuable to help me make an informed decision.

I learned about Floating Mass Transducers (aka middle ear implants.) I love the name Floating Mass Transducer but, in the end, I ruled FMT out as an option for me.  There are some good things about the FMT such as not having to worry about the ear irritation that comes from wearing hearing aids.  But, there were other concerns that left me thinking this is not the best way for me to go at this time. 

I  found two companies that offer an electronic-acoustic implant-Cochlear and Advanced Bionic Corporation.  Both have good informative websites designed to sell you on their product.  Both have strong products and offer consumer support. Both have people to help you navigate the insurance companies.  Both are heavily into research and development.   I had trouble deciding between the two corporations' product.

But, the deciding factor was where I could get services after the implant.  Following surgery, there will be activation, implant programmings (aka mapping) and listening therapy. What I learned today is Florida State University's Schendel Speech and Hearing Clinic is associated with Cochlear.  The clinic is just a few minutes away from my home. They have been there for me in the past and it would appear they are going to be in my future. One decision made. 

13 days and counting toward the eligibility evaluation

Thursday, July 2, 2015

Researching Hybrid Cochlear Implant

I am currently reading New Beginnings: Acquiring And Living With A Cochlear Implant.  It is a book of 13 stories authored by people who had the CI procedure and 2 stories by parents of children who had CIs. I have not read all the stories yet.  Of the stories I have read in this book, one person is not using his CI.  In his particular case, he did not hear sound with his CI until two months after activation.  For him, the main issue was not being able to "tune out" noises. He stated he felt like a "child with Attention Deficit Disorder" when using his CI.  He had trouble concentrating on school work as he spent so much time investigating where new sounds were coming from.  He chose to stop using his implant and return to the world of silence.  It should be noted he had a choice. He is part of a deaf community and has ability to use American Sign Language to communicate with his peers.  I, on the other hand, am not part of the deaf community as I was raised in a small, mostly rural community and initially did not have access to a deaf community.  Furthermore, I am not bilingual.  I do not know American Sign Language.

The other stories in the book, I think have been realistic.  They are not "turn the switch on and I am in the hearing world" type stories. For most of the people who receive CIs, they had to work to learn to distinguish the sounds they were hearing and convert the sounds into understanding. However, these authors have continued to use their CI and are glad they did the surgery.  Even the one author who no longer uses his CI, does not regret the surgery.  He is glad he had a chance to tour the hearing world.

Most of the stories I am finding are by or about people who appear to feel they had nothing to lose and everything to gain by the CI procedure  I, on the other hand, feel there are some cons to potentially losing my residual low frequency hearing.  The Hybrid CI is designed to prevent this type of loss in hearing but no guarantee.  While there are some other risks associated with surgery, the other risk that has me most concern is vertigo.  Several people have mentioned following the CI surgery they had vertigo lasting from a few hours to months.  I have a lifelong relationship with vertigo and it is not fun. Interestingly, my last run through with the local balance clinic (several years ago) suggested migraines as a cause for my vertigo.  Since I stopped working I have not had the frequency or severity of vertigo and that is good.

So, I am still weighing the pros and cons of a Hybrid CI  and  I am still looking for stories of people's experiences with a Hybrid CI.