Friday, May 2, 2014

My Cochlear Implant Journey

This is one of those times when you kick yourself for not taking notes and writing down your thoughts as things happen but I still feel like I need to share the details of my CI journey so that others can get an idea about what to expect if they are looking into it and so that the people in my life will know what I went through and why I was so absent from theirs during the time leading up to and shortly after my surgery.  The dates may be a bit fuzzy but I'm going to do my best to chart my journey.

By about February of 2012, I found myself in full panic mode with my progressive hearing loss.  My husband had signed me up for counseling and I wanted to do my part to shake off the depression and guilt that my hearing loss was causing.  I reached out to Caption Call to get a captioned phone hoping that would give me a little more independence, at least let me order a pizza without asking for my husband's help.  When my installer came in early April, we got to talking and it turned out she had two cochlear implants.  She asked me if I had considered them and at that point, I really didn't know much about them.  I didn't think I was deaf enough for one, nor did I think that I could afford one.  But in truth, I hadn't done any research into them in years.  I didn't realize how easy it would be to get one and that you didn't have to be completely deaf to qualify for one.  I also didn't really believe how bad my hearing had become. I did a little research and thus began my journey.

First of all, you should know that most insurance plans will cover it! Most have hearing loss guidelines that you need to meet, but most of us with hearing loss tend to downplay or underestimate our loss and think we would never qualify, so if you have severe loss at all or find that your hearing aids are just not working for you and you have top of the line aids, this is most likely an option for you. Don't doubt it until you speak to an expert, not your hearing aid rep but a surgeon who specializes in CI surgery.  Your hearing aid rep wants to sell you another pair of hearing aids; if you get a CI, you don't need them any more so they are not likely to recommend a CI to you.  And I know that is not the case with every audiologist and hearing aid distributor but it will be like that with many of them that work for places whose money is made on hearing aid sales rather than health care.  For a fair evaluation, see a doctor for help on this, rather than the person who distributes your hearing aids.  Make an appointment with an ENT or otolaryngologist.

So it's been a long time but I'm going to try to give you at least some kind of idea of the CI process.  First, I scanned in and emailed my latest audiograms to the audiologist at the Dallas Ear Institute and she called me back within a day telling me, yes, she thought based on what I sent her that I might be a candidate.  We set up an appointment and I was off for more testing...very, very thorough testing.  I was tested in the booth with my aids off and on, regular old beeping tests, speech discrimination tests, speech in noise, men and women's voices, words and sentences.  I was tested more than once on more than one day; finally, after the second or third visit, it was decided that I had a hearing loss that would benefit from the CI.

But it's not as simple as being deaf enough, you have to pass a whole array of tests to be a candidate.  I went to my family doctor for a complete blood test and physical to make sure I was physically healthy enough for surgery.  I had an MRI so my future CI surgeon could get a better look at what he was dealing with and to rule out any physical deformities in the ear.  I had a complete psychiatric evaluation to make sure that I was mentally stable enough to deal with the process of learning to hear bionically...hey, yall it's a requirement, not something they thought I needed personally.  There were more hearing tests and there was a balance test.  I had a ton of appointments and it wasn't easy but finally about 7 months after I made the first call, I was ready for surgery. 

I was also going to grief counseling during this time so I had multiple doctor appointments every week, sometimes up to three appointments in a single day.  I pretty much checked out on everybody and my friends and family didn't see much of me during this time.  But in the end it was worth it!

My surgery came in early August 2012 and I had to be at the hospital at 5:00 in the morning.  I was in surgery by 8 and on my way home by noon.  Not was that fast!

I was pretty out of it and didn't read the directions on my meds correctly so I didn't take enough of the pain pills and I suffered tremendously for it that first night.  I felt like somebody beat the crap out of my head with a baseball bat.  But once I finally figured out the correct dosage, the pain subsided and I felt much better. 

It was uncomfortable to sleep because I could not roll over onto my left side for weeks and that is my preferred side to sleep on.  I could also hear phantom sounds in my left ear which by this point was supposed to be completely deaf.  I could hear whole imaginary orchestras playing in that ear. It was weird but I just went with it and enjoyed the musical. It did eventually go away and I hear nothing in that ear when I'm not wearing my processor except for the occasional popping sounds.

After a few days, I was able to remove the bandages and I think I went back for a post-op at about a week.  I had no complications and about 3 weeks later I was able to get activated. 

I won't talk about activation today as I just wanted to give you an idea of what happens from the time you decide to contact a doctor about getting an implant to the time that you actually get one.  I can say that it is not an easy journey but I look back on it now and it feels so brief.  If you work, you need to plan for lots of time off for appointments and at least one month off for total deafness as you await activation, unless you can do your job without hearing.  After activation, you will have more appointments with both your audiologist for mappings and a speech and auditory therapist who will help you learn to hear with your CI.  Basically you need a good year to get it all done and if you don't take right away to the CI, you may need months if not years of auditory therapy.  I had a great experience and learned to hear very quickly with my CI.  There are a whole host of reasons why I was so successful and I want to talk to you about that too...but not today.

If you have any questions about the CI evaluation process, please ask them in the comments.  I will do my best to answer them or find answers for you if I don't know.

.....................................1.75 years with a CI and loving every minute of it!

Wednesday, September 26, 2012

Breaking News...I Went Bionic and A Train Wreck Has Been Diverted!

I am Heather, the blogger behind Life in Mute: The Progression Towards Silence.  I started this blog to chronicle my journey through progressive hearing loss, from the world of the hearing into the Deaf. When the world of the Deaf didn't work out for me, I realized I had another option; I had cochlear implant surgery on Aug. 7th, 2012.

My past posts have detailed my hearing loss from the first failed hearing test, across 25+ years, into profound deafness, and a lot of the random deaf ridiculousness between.  Please familiarize yourself with my story if you haven't already.

After giving up on the hearing world and after trying to situate myself into my local Deaf community, I felt like a failure.  I felt that I did not fit in in either world because I did not know enough ASL (American Sign Language), nor could I hear regular spoken words.  When I tried to reach out, I was not openly received.  In the hearing world, I couldn't hear normal sounds, much less normal speech. In the Deaf world, while I knew quite a bit of sign language vocabulary, I could not understand the signs flung back so quickly at me.  I found myself in a situation where I could not communicate effectively in either culture.This made socializing difficult and holding a job impossible.  (The implications on motherhood and marriage will be discussed in another post!)

In summary, I started loosing my hearing in 5th grade (1986), hid it from the adults in my life for years, and got my first hearing aids in 2001.  Since 1986, my hearing loss has progressed from mild to profound.  I don't hear an alarm clock, fire alarm, phone ringing, tornado siren, oven timer beeping, doorbell, speech in noise or speakers more than 3 feet away from me, while restaurants, phones ringing, students in classrooms, speakers at lectures, church, public conversations, meetings, phone calls, etc. are impossible.

In 2012, I hear very little, dogs barking next to me, vacuums if I'm running them, hair dryer if I know it is what is is, screaming person in my face, gun fairly close to me ( I'm not a gangsta, I go to the range), deep bass sounds, concerts, but it doesn't sound like a clear recorded cd.

I'm a little upset about this because I am still paying on student loans that made me a teacher which I am incapable of being now! It's no wonder that I've had to deal with some anger issues regarding my hearing loss!

This year, my hearing took another dip in January, by the next month, I was looking at other options!  Nobody wanted to sign with me, and my hearing loss was out of control!  Job search was impossible! I felt lost, isolated myself, became depressed, angry...worthless!  My life was a train wreck!  I even offered my husband an out, asked him if he wanted me to go away so he could find a more worthy partner.  I even wondered if my daughter would be better off with a mother who could contribute more to the family. A mom who could volunteer at school, hear the bullying on the play ground, have conversations with her and her friends.

My husband didn't jump on the chance to escape.  He reaffirmed his love and commitment to me! He found me a grief counselor, who helped me realize that I needed to grieve my hearing loss so that I could get past the depression, guilt, and anger.

I decided to try a hearing approach rather than an acceptance reproach.  I started looking for things that could make my life easier.  The first thing I did was get a captioned phone.  But it wasn't the phone that changed my life.  It was the installer.  We got to talking about my hearing loss and she whips back her hair and shows me her bilateral cochlear implants and asks why I haven't looked into it.  I knew about them but thought I was a long ways off from qualifying for one.  She looked at my audiogram, disagreed, and recommended I make an appointment with her doctor, which also happened to be the doctor who diagnosed my hearing loss as EVAS.  She raved about her implants and I never would have known she had hearing loss if she hadn't shown them to me. She understood me and followed the conversation with her back turned to me while she installed the phone in my kitchen with hard floors, tall ceiling, and generally, bad acoustics!

So I did it, I made the call, I started the evaluation process, which took 7 months of multiple appointments per week.  Throw in a few dental procedures, appointments to deal with the other health problems that were discovered along the way, and the grief counseling; I was in a doctor's office 3-5 times a week from February-August!  There was one day when I had 3 appointments in the same day in 3 different offices. All of my appointments were in a different city requiring a commute.  My daughter was only in part time care for the summer and I was trying to keep my Etsy shop in good standing.  It was exhausting!

I went for the cochlear implant and after 7 months of appointments and evaluations, I had the surgery on my left ear!  I'm liking it so far, it's not an ideal hearing situation yet, but it certainly has been worth the surgical risks so far.  Haven't lost anything except time and have gained back some of my hearing and rather quickly!

I'll talk about my surgery and recovery, and my current hearing and healing in the next couple of posts.

Right now as I learn to hear with my new implant, I'm still pretty much worthless as a contributor to my family, but I can at least see a path ahead of me and I can see the progress happening daily.  I don't feel like the game is over anymore.  There is hope now where there wasn't before!

Note: When I say I feel worthless to my family, it's because I don't bring in much income, I can't volunteer at my daughter's school activities, I ignore the pleading emails from church asking me to teach Sunday school, I can't do the job I was trained to do.  But I'm not totally worthless; I cart my daughter around to all of her extracurricular activities but am probably thought of as the snob mom because I don't engage with the other parents, I can't hear them. I'm a great cook and a whole foods/organics advocate, so we eat great around here thanks to me (and our good health reflects that). My yard looks pretty good, organic garden included, and I keep house and run a little Etsy shop as well, so no, not totally worthless, just not what I planned, not what the package I presented to my hubby when he signed onto forever with me!  And it makes me feel guilty.  I'm the kind of person who always gives my best to everything, and when my best is broken and out of my control; I feel guilty and I get angry!

This year has been really tough for me and my family, who have to deal my emotions.  If you ever find yourself feeling worthless, if you ever think that you have no value to the people you love, please, I encourage you, please, let them know your feelings because they probably value you a lot more than you do, and, from my own experience, you need to hear that!

Tuesday, September 11, 2012

Caption Call Phone Review...did you know you can get one for free?

For those of you that have seen this offer or this website, and had your doubts...

Yes, it's legit! If you have issues with your hearing, then you qualify.  No, it will not cost you a penny.  Yes, I took the offer, ordered the phone, had it installed, and have been using it for a few months.  Would I recommend it to a friend?  Yes, mostly, except to one group of people...who still might benefit if they used it as a back up or emergency phone.  I recommend this phone to anyone who wears hearing aids and/or is hard of hearing with at least some speech discrimination left, but not to the completely Deaf who already use TTY.  

Here's my experience:

I subscribe to the emails from Deaf Network and one of the posts came with an advertisement from Harris Communications offering the Caption Call Phone for free to the hard of hearing and Deaf. I had seen this add a few times and pondered on the idea of having a captioned phone.  I Googled it, read some reviews, and finally, I clicked on it.

I ordered the phone and was emailed by an installer within a couple of days. She scheduled an appointment with me at my home to install the phone.  She came out with all of the equipment needed to get me set up and was very knowledgeable about what she was doing.  She was also friendly and pleasant.

Somehow our conversation got to be about my hearing loss and she suddenly revealed her two cochlear implants.  I never would have know that she had a hearing impairment if she had not confessed.  She functioned better than any hearing person I had done business with recently.  I have to admit that I was blown away by her!  but this is a review of the phone and not Brenda so I will tell you more about the phone.

No matter what problem we ran into with my wireless Aggie engineered internet connection, Brenda had the tools and knowledge to get my phone installed.  She got my phone set up and working within a couple of hours.  I've had the phone about 5 months (at the time of this post in September 2012) and I'd love to share a little about it.

*My installer, Brenda, was amazing! She had routers, and boxes with blinky lights, cords, and thingamajigs that I don't fully understand, available for whatever she needed to make my phone work, in other words-she was locked and loaded. This company does not skimp on delivering it's goods; they will make that internet connection work even if you don't understand it!
*This phone has amazing volume control; it can be turned up to I'm not even sure how many decibels but it does give you a warning when the sound level is dangerous, after which I still hit the turn it up button at least 3 times.  I turn it way up and can hear most conversations with the help of the captions.  I have never had a phone that could turn up this loud!
*You can also program the sound, making the phone enhance whichever frequencies you choose!  But I'm not exactly sure how to work this function so I'lll bring that up in the Cons section.
*It has caller Id.

*It has a call log.
*The address book holds plenty of contacts with detailed info but you will need to add all of the info manually, no current programs exist to import that data for you.
*Did I mention the volume control?
*I've had one software upgrade in 3 months. Upgrades to the software have been simple and easy to do.  I was notified by both the company and my installer and was offered help via both if I needed it.
*equipment to get my phone up and going was offered to me at no charge, including modems.
*oh and it's's free!  well mostly, how is this service funded you wonder?  FCC, and you've been paying for it for years through a little charge on your phone bill
*you can connect your FM device to get you call streamed directly into your hearing aid or cochlear implant depending on the type of hearing device you have
*...volume control, volume control!

*Captions are not always reliable and often completely undecipherable, so I do not think this phone would be much of a solution for someone who is completely deaf
*access to captions is not always available, the network goes down occasionally
*contact info cannot be imported but has to be entered manually.
*audiogram programming function is limited in options and frequencies, can we get a few more dots on the graph here?
*phone is not cordless, nor is unit portable...why isn't there an app for this, shouldn't this be easy to do on a smart phone, why isn't it portable?  Do I really need to waste this much counter space?  Really, I'm limited to the feet of the headset cord?  I can't roam around my house on the phone?
*A third party can hear part of your conversation as they create the captions, which can be awkward when your brother calls to ask you where to hide the body.    ....relax, I'm joking, he knows where to stash the body!

Overall, I'm very pleased with my Caption Call phone and as long as it's being offered for free, I don't see why anyone with a hearing loss shouldn't try it.  It's funded by the government, and if you've ever had a phone at all, you've paid a little fee each month to provide access to this technology for the deaf and hard of hearing.

Monday, July 23, 2012

Why Healthy Living is Important to Your Hearing: by Guest Author, John O'Connor

Today I welcome guest blogger, John O'Connor of Blogging with John O. Mr. O'Connor is a "full time husband and father, part time outdoorsman and new blogger with an extreme passion for healthy aging and living a healthy lifestyle."  He is also passionate about hearing loss and shares with us the following...

Hearing loss is something that often affects individuals who are older, however, more and more young adults and teenagers are dealing with hearing loss themselves.  Between listening to loud music and not wearing the right protective gear, children are putting themselves at risk for severe hearing loss.  Believe it or not, living a healthy and cautious lifestyle can also help to prevent hearing loss from affecting you.  You may not have even realized that there is a direct correlation between healthy living and being able to hear correctly.

Healthy living starts with the proper nutrition and the right amount of exercise.  The reason these two lifestyle changes are important to preventing hearing loss is simply because many medical ailments can cause the loss of hearing.  For example, diabetes is an ailment that affects millions of people.  This disease can be prevented through proper diet and exercise.  Having diabetes increases your risk of having hearing loss later on in life.   
Along with a healthy diet and exercise regimen, it is also vital that you protect your ears from damage.  There are many small things you can do each day to prevent hearing loss from happening to you.  For example, you may want to consider turning down the volume on your favorite music player.  Loud music can harm eardrums, which in turn can lead to permanent hearing loss as you age.  A good indicator that you are listening to music too loudly is if you have a ringing in your ears after you take off your headphones.  This lets you know that the music is simply too loud and is actually doing damage to the ear as listen to your music

Along with turning your music down, you should also get some earplugs and wear them consistently.  If you work in the construction area or are constantly exposed to very loud or high-pitched sounds, it is vital that you wear earplugs.  These small foam inserts will actually prevent excess noise from entering the ear canal.  This, in turn, helps to prevent hearing loss because you are simply not exposed to these sounds any longer while working or in a loud area.

If you feel like you are losing your hearing, be sure to visit your doctor and discuss options available to you.  Based on your current hearing levels, your doctor may prescribe you with hearing aids in order to help increase your hearing.  It is always a good idea to try and prevent a problem before it actually happens.  After all, prevention is easier and more worthwhile than having to take care of a serious medical ailment.  Be sure to incorporate these tips and healthy living into your daily routine at home.

Wednesday, February 22, 2012

Finding my way...

It's been almost a year since I've logged into this blog and I can't believe I've ignored it for this long.  I've been in a state of denial/depression/guilt about my hearing loss.  Ignoring it, pushing it down, deeper and deeper, feeling guilty about my role in life and towards my family.  But as my hearing loss progresses, I find myself back in the anger/guilt stage mostly.  The stage that makes me want to do something about it.  Anger and guilt are the feelings that are most likely to provoke and motivate me!

I had another audiogram today. The results were not good.  I've moved out of the moderate-severe levels and into the severe-profound levels with nothing left in the moderate range and more peaking into the profound range than before.  My speech discrimination levels have been cut in half.  I'm now only understanding 28% at 105dB in my left ear and 44% in my right ear.  The sound was turned up so loud, I could feel my ear drum vibrate but I couldn't make out the words.

A lawn mower is 100dB.  I cannot hear a garbage disposal, hair dryer, crying baby, or a vacuum cleaner at all without my hearing aids, and a lawnmower sounds like a bee buzzing. I unplug the hair dryer when I'm done because I can't hear if it's still on or not.  I hear about 35% of what you say with my hearing aids in, in a quiet environment.  I will become profoundly deaf and will not be able to use hearing aids in the next decade according to my current rate of progression.  And I am f-ing mad about it!  I have so much anger and depression and guilt in me right now, I don't know what to do with it.

I've lost my career, my friends, my life as I know it.  My daughter is counting on me and I can give up or I can beat this and deal with it.  I have a daughter...I will deal with it, beating it is not an option.  I will make her proud and I will give her the confidence and build the virtue of empathy in her that she will need to deal with this!  At this point in my life, I can't say that I'm strong enough to do it for myself, but I will be strong enough to do it for her!

Thursday, February 17, 2011

Director, Harlan Schneider, Needs Your Support as He Pushes for Fully Captioned Films

Los Angeles film director, Harlan Schneider, is an advocate for fully captioning films for the deaf and hard of hearing.  His latest film, "Claustrophobia," is currently available with full captions via Video on Demand.

According to Mr. Schneider's story on, "“Claustrophobia” is a recently completed psychological thriller about a young deaf man whose world closes in on him when he becomes entangled in a nasty real estate dispute with his sadistic next-door neighbor." 

The film stars actor, Russel Harvard, who has had roles in "There Will Be Blood" and the soon to be released, "Hamill."

There are more than 30 million deaf and hard of hearing individuals in the United States and these days, everybody watches T.V.  I have been ranting, raving, screaming, cussing, moaning, and complaining about the lack of captions available for quite some time.  I even started the Facebook Group, Citizens Against Films without Subtitles for the Deaf and Hard of Hearing.  I have not had much of a chance to market the group or try to garner any kind of following, but I have gained a few fans just by sharing my concerns and I hope I'll gain a few more after posting this!  It's time for the Deaf community to come together!

The Deaf and Hard of Hearing community can not just stand by and hope that the film industry will come around.  Their are 30 million of us and we are all consumers; if they want us to be customers, then they will have to caption their films.  If they won't do it voluntarily, then it is about time we demand it of them!  And that is exactly the point, we have to demand it.  If there is no demand, then why would they bother?  While we may argue about Deaf politics amongst ourselves, this is one issue we should all be able to agree upon.  I don't see how it's any different than forcing a business to put a handicapped parking space close to the front door of a honky tonk bar.  It may be entertainment but we are willing to pay for it if you make it accessible. We are a powerful consumer base with money in our pockets and it just doesn't make sense for the industry to ignore us if they know there is a demand!  Say only half of those people are in the target market for my product, I'd be willing to spend a few extra dollars to attract 15 million new potential customers.

Harlan and his crew are trying to earn $5000 towards promoting their film.  Mostly they want to be able to show it all over the country and pay for his and Harvard's travel expenses so that they can go along and promote the movie. 

Give what you can, whether you have cash in your pocket to donate, a blog to pass it on, or even just sharing on your Facebook and Twitter pages will help!  It's time we all do whatever we can to get all video captioned and accessible!And please watch the film if it's available on your service!

You can access "Claustrophobia" via VOD:

And when you're done with that, hop on over to Facebook and join the group, " Citizens Against Films without Subtitles for the Deaf and Hard of Hearing.