Sounds of silence

[Heywayne]

So here's another newbie coming aboard for the Cochlear journey.  Lost all intelligible hearing in R ear back in 2004 due to sudden sensorineural  hearing loss.  Coped with L ear hearing only, got lied to by a Hearing Aid seller that I should buy a hearing air for both ears because it would "be better for the hair cells". Turns out it was just better for his bottom line. The aids didn't make life much better because they amplified the background noises better than the target noises and only in the "good" ear. They are collecting dust in my office.

 

October 2012, tried hearing AID again, just the R ear plus a bluetooth mini mic.  These were often helpful though I didn't wear them regularly.  I did make an attempt to use them when I knew I would be in noisy conditions or crowds and they were somewhat helpful, especially with the mini mic.  Unfortunately, I lost the HA last summer and that put me back to 2011 hearing challenges.3

 

March 1st, 2016 On the way to a funeral, noticed "funny" noises but thinking it was the car, the wind, or the rain.  By the next day, I had very little hearing in the remaining "good" ear. Got into see the PCP right away who got me to an ENT specialist the next day.  She started me on Prednisone and in a couple of days the hearing was mostly back.  The next day, I had my first Vertigo attack and called my ENT doc to get back in and they set me up with a specialist who deals with Meniere's disease.  This resulted in in more Prednisone, orally and injected, and more come and go hearing loss. The Vertigo episodes went away completely after the 4th attack in mid-march and have stayed at bay thus far.

 

After the hearing loss stopped coming back, I was told that a Cochlear implant was my only hope of getting hearing back.

 

Set up with audi for testing and overview of Cochlear options with Med-El, Cochlear and AB.  Oh my! If only the glossy marketing brochures were more truth and less deception.  Chose to go with the MED-EL only because of the MRI advantage and MRI procedures for me are frequent these days between the hearing and spinal stenosis issues I'm fighting.  Surgery is set for June 17th with the choices of the MED-EL Sonnet and Rondo receivers.

 

The audi was enlightening and in stark contrast to the panacea promised by the glossy brochures so I'm not at all comfortable with the process so far due to the differences between real world people and marketing glitz.  I'm feeling like I am making a decision out of shear desperation to rejoin life again and not as much on the medical technology advantages and probable outcomes.

 

And finally, along with the hearing losses have come additional throat, mouth and ear issues that are either new or more intense than prior to the first hearing loss and my ENT surgeon refuses too address these at the moment.  

 

Any similar stories out there on the issues above?

 

 

[Mary Beth]

Hello,

Welcome and I wish you the best on your hearing journey. All of us have unique stories that led us to cochlear implants. As you are learning, people's performance with CIs range quite a bit and although there are some indicators that may be encouraging or discouraging, it is not an exact science. Therefore the professionals can not tell us how we will function with a CI beforehand.

A lot, but not all, depends on how much aural rehab the user is willing to do to get the most benefit from the CI.

I have had great results with my CIs. I wish the best for you too.

[Ivana Marinac]

Sure Heywayne, it is natural to feel the way you do. Perplexed.

What I can do is to reasure that cochlear implants really work like hearing aids also (but has limited range of activity). Your hearing-aid dealer did not lie to you - the real question is how severe your loss was and whether that particular aid could help you enough although it is not enough for you to understand speech.

Cochlear implantation is proven process of rehabilitation and you will have opportunity to speak with people here who have gone through the process - just you have to understand that not everything work straight away: cochlear implantation is not just operation, much more of that is rehabilitative process which you have to go through so you can regain your hearing again.

But - it is worth of that if you are willing to work for your cause.

[Kara of Canada]

Hi and welcome to Hearpeers!! We al have different journeys that bring us to cochlear implants. I had never met anyone nor heard of cochlear implants much before it was my turn. I have a right sided implant for now. I couldn't use the phone or listen to music any more before my implant. Now I can do those things again. It is so freeing.

[Sandy]

Welcome to Hearpeers. As Kara said each of our journeys are different and we each progress at different speeds. It requires what we call, the 3 Ps - practice, patience and perseverance. It is a lot of work, time and dedication by both you and your support group. For me, it has been well worth the time and effort. I can hear. you might want to look at the various posts in this forum and see the different journeys people have made. Good luck and please keep us posted.

[Heywayne]

Well, I've been implanted on June 17th. As a veteran of multiple orthopedic surgeries, I cannot say that this one was or is easy. So far my taste is shot and what few sounds I heard before surgery are no longer. The pain in and around the ear keeps on stabbing as well as drainage from inside the ear. It seems like any function involving the nose, ears or throat is now "different". I like this site because it gives hope but I wish I'd been given more information about the post surgery symptoms and possibilities.

The more I read the more I fear about the fallout from the surgery which is totally different from my past surgical successes. Since my hearing was non-existing due to the menieres attack it wasn't a viable option to do nothing.

I expect to be activated on July 1st and hope to regain some hearing independence to celebrate over the 4th.

[Sandy]

I'm sorry to hear that you have had such a difficult time. Have you talked to your doctor about it. Good luck on Friday. Please keep us informed of your progress and ask as many questions as you need.

[Ivana Marinac]

Each patient "feels" their operation on different way - that`s why it is so subjective and it is hard to discuss about each aspect.

Like in the movie - it is not covered everything yet whole story was told.

[Mary Beth]

Best of luck at activation.

[Kara of Canada]

Best of luck on activation. There's always hope for us. But it's not and open and shut activation. It takes many of us lots of time to understand speech. Or any sounds sometimes. But there are others who do understand speech right away. Please be patient.

[Ms_D]

Hi.  I have had great success with my CI!  In fact, I was implanted in my right ear (which I was born deaf in) on January 7, 2015.  It has been such a rewarding journey.  Sure, the pain after surgery can be mighty painful at times, but it will lessen.  Where I was born deaf in my right ear, it has now become my dominate ear.  I can hear on the phone, and even hear the radio now.  Such awesome results I have experienced (and I'm still experiencing - I continue to improve) that I became motivated to have my left ear (I had no more than 10% of hearing in that ear) implanted.  I was told before the surgery (my surgery was June 8th) that the surgery would most likely take away whatever natural hearing I had left.  It appears that it did, because where before I could hear my husband's alarm clock (it's the only alarm clock that can wake me up with its noise - I use vibrating alarm clocks), I now can't.  I don't mourn the loss of my natural hearing, rather I look forward to my new hearing.  My Activation Day is on July 18th.  It does take dedication, practice, and patient.  It can take over a year to receive the full benefit of the CI - I was told this repeated even before my first implant.  Don't give up - keep trying.  Before my first implant, I did do research about CI.  I educated myself to the best that I could.  The Lord opened the door for both of my ears to be implanted, and I'm thankful for it.  I got on this site after my first implant, and it has been awesome to communicate with fellow CI users.  I hope that your journey is a happy one.

 

An additional note, back years ago - during my teens, several doctors thought I had Meniere's disease due to dizzy spells, tinnitus, and I think something else.  I did not have Meniere's disease, but that was what a few doctors thought I had.  Another doctor had a MRI done because he thought I had a brain tumor.

 

Yet one more note, one of the reasons why I picked Med-El is because of the MRI advantage as well.  While I don't need MRIs currently in life, you just never know what the future holds.  I am thankful I went with Med-El.  Every time I contact them, they are nice and courteous.  The always are helpful.

[Kay]

Hi, Heywayne I hope your activation went well. I had my first implant June 16th and will have activation on July 14th. My Dr told me before surgery that I would have no hearing until I get activation. This has not been a picnic but I have been through a lot worse trials. I want to hear. That's the bottom line. I have also been having tinnitus that I didn't have before. I'm hoping it goes away with activation. If not I'll just deal with it.

I have been told repeatedly not to expect a whole lot on activation, it takes time. My audiologist told me to expect improvement for as long as a year. We will need to put in some work to make that happen. I am a fairly patient person as well as accepting life as it comes so I hope that works to my advantage on this journey. If you are expecting immediate perfect results I think you may be disappointed. I hope it gets better for you. Good luck and hang in there looking for great things down the road! :-)

[Mary Beth]

Kay,

Improvement for 1 year is a rather standard comment after activation. However, it's been over a year for my right CI and it is still improving. Many others experience the same thing. Just to let you know that these amazing things and our plastic brains do not seem to know when the 1 year time limit is up. Smile!

[Sandy]

I'm still learning and it's been three fantastic years. Each day is a new experience. Today I'm sitting in my gazebo listening to all the birds. The annoyance is the cricket, hiding somewhere in my house! I hear him! I am so amazed at all the sounds I've missed over the years! This is definitely a journey worth travelling!

[Kay]

Hey crickets are nice too! I just realized that I haven't heard one in years. I think it's Japan where they are said to be good luck. Peace

[Mary Beth]

Crickets are great too but maybe not inside your house!

[Kara of Canada]

Lol! Sandy!! I heard a new bird on my recent camping trip in Algonquin park here in Ontario. It was so neat!! I heard my off tone husband try to mimic the bird too!!

[Heywayne]

Implanted June 17, 2016. Activated July 1, 2016. Still having some pain in and around the implant site but the drainage has nearly stopped completely. Also having headaches in forehead area and neck pains on both sides. The activation went well and started out with the Synchrony device. I was able to hear and understand most words in the office when sitting and looking at the minion (speaker) directly. It was pretty impressive to hear sounds again as I unlocked the car with the remote, clicked the seatbelt to stop the annoying beeps, and hear the clicks, clacks and clunks of driving again. Even the road, wind and traffic noise with the window down was welcome.

On July 6 we visited the Audi again and activated the Rondo device....nice! It seems to be picking up better than the hooker and makes wearing glasses more comfortable. It's been nice to hear the Kuerig hiss at me as that first cut of coffee starts to brew each morning.

Can't say it's an attractive look when your hairstyle is a flattop but compared to deafness, I'll take it!

My concern with the Rondo at this point is how easy it is to knock it off my head and being fearful of losing it. Has anyone found this to be true and/or found a way to improve the connection..

Finally, has anyone found a way to mark the two devices with your name and phone to enable anyone to contact you if your device is unluckily lost and luckily found by someone?

[Kara of Canada]

This is a questions for Mary Beth and Sandy. Also check out the rondo forum it may have the tips your looking for. I only have a sonnet and can't answer this question. I have a brother labeler if that would work you could make a really small labels and put it on the rondos.

[Mary Beth]

Hmmmm...interesting question about marking the Rondo with your contact info. People use nail polish to place a small mark on their processors to know which one is for the left versus the right side so I guess you could figure out a way to mark them.

As for falling off......there is a learning curve. Learning how to remove an overhead shirt or to run your fingers through your hair without dislocating the Rondo comes in time. Many people tether the Rondo to either their hair, clothing, necklace or ear via HearClips. I do not tether my Rondo unless I'm going to be very active.

EarGear covers offer a way to tether the Rondos too. I use that in the ocean. (With the Rondo in waterwear cover )

[Ivana Marinac]

Or the Sportband by Med-EL

[Heywayne]

After 3 1/2 weeks from activation I'm pleased to hear sounds that that I hadn't heard for awhile. The vexing thing at the moment is the massive echo sounds that speech seems to trigger in my head. Like talking in a large empty room and it drowns out the speech sounds that I'm trying to hear. It also worsens as the day progresses. Anyone else had these experiences?

[Mary Beth]

Hi HeyWayne,

The early weeks of listening with our CIs can present lots of strange sound perceptions. Definitely mention the echo to your audiologist at your next mapping appointment. Until then, it may help for you to take off your processor for short breaks (5 minutes or so) when that echo gets overwhelming and then start again. Sometime short breaks help to reset things for us in the beginning.

Is it actually like hearing everything twice or is it a reverberation sound sensation for you?

For my right CI had experienced a low frequency reverberation sound when listening to sustained speech (a conversation not a single word or sentence). We made a mapping adjustment for that and it went away completely.

Best of luck!

[Kay]

I also have an echo but I don't think it's as loud as yours Heywayne. It does interfere with voices especially my soft-spoken husband. I also still have the chimes but not as loud as they were in the beginning.