Unilateral CI appointment / discussion, questions, very scared

[Chris L]

Hey there everyone,

Ive been reading the forum and everything else I can get a look at.

have had hearing loss my whole life, started wearing aids at 20, am 38 now, a month ago my “good ear” went completely deaf almost over night followed by extreme vertigo , tinnitus and depression. Doctor thinks maybe viral infection, did steroids orally as well as injection, no help.

The vertigo has since subsided but I’ve  been very depressed and scared the last few weeks. I’ve been short with my daughter and wife, all I want to do is stay locked in our bedroom away from everyone. 

I have my appointment with audiologist at Emory university in Atlanta to discuss CI.

I’ve always had trouble in crowds and became much less outgoing and willing to be in crowds since my early twenties.

Now it’s even worse due to my sudden deafness , but now I have a wife and 4 year old daughter and it’s breaking my heart that I may be unable to function normally.

 

Ive never had a great work history due to my hearing loss but got a really good job with the feds working from home where I don’t talk to the general public  or even management very often at all:..the problem is it’s temporary position.

before this I worked at Walmart part time which I’m not even sure I’ll be able to do in my current condition.

I’m worried about disability from social security , does anyone know about that? I read you automatically qualify for one year after an implant....Have any of you been thru the process ? I tried going out to restaurant with wife and couldn’t even order food without her help. I’m terrified that I won’t be able to at least provide the basics for my familY now.

 

im worried about the surgery , potential facial nerve issues , worsening tinnitus from surgery....how ill adapt or if I even will adapt to the ci’s.

 

im overwhelmed and depressed....can’t stop thinking about not being to function and having my daughter suffer cause of it.

 

any advice?

 

[Mary Beth]

@Chris L

Welcome to HearPeers!  I am sorry to read of the sudden drop in hearing in your good ear.  That is a lot to deal with.  My loss was progressive also and my least favorite day of the year was my annual hearing test where I would see the continued drop in hearing on the audiogram.  I am sorry you are experiencing this.

 

Large CI Centers tend to have a social worker associated with the CI program.  Maybe Emory offers that.  It could be helpful to talk with a social worker who has experience with people considering cochlear implants. Just a thought.

 

For me, these cochlear implants opened up my life.  I had considered myself a rather quiet person but after adapting to the cochlear implant I discovered that I am more outgoing than I thought.  Smile.  Once the communication difficulties were removed due to this amazing hearing from cochlear implants, social settings became fun.  
 

My hearing loss had made me wonder if I was going to be able to stay employed in my job.  It was scary and frustrating and oh so exhausting.  CIs changed all of that for me.  This is the best hearing I have had in decades!

 

But getting a cochlear implant and having it activated is only the beginning of the journey.  It takes time, practice, appointments and a willingness to throw ourselves into communication encounters in order to get the most from our CIs.

 

It could be helpful to see if Emory can recommend an aural therapist for you to work with as you adjust to your CI.  Aural rehab helped me a lot!

 

Wishing you the best.  Stick around and ask questions.  We are a friendly group.

 

 

[Chris L]

Thank you for the response, Mary Beth, I have watched your testimonial the other day and have been reading your posts on this forum a lot the past week or so. 

Looking into a social worker sounds like its worth bringing up at the discussion appointment in February at the hospital.

Thank you!

The fear of losing my hearing in my other ear is terrifying to me to the point where I was open to a biCROS HA set maybe, but........its always been my life long fear....losing my hearing....a CI at least gives me hope that i would not be completely deaf if God forbid something does happen to my other ear.

I still have some residual hearing in the affected ear, i can barely hear the walgreens automation when i call for prescriptions, i know what it says verbatim and can follow along and every so slightly hear the words in my nearly deaf ear. Turning the volume up on that ear HA higher than the other ear gives me some relief from that horrible new feeling of only hearing on one side at least

 

Im just so frustrated and scared and depressed....

[Megan L.]

@Chris L 

Welcome to the group!! 
 

I’m sorry to hear you are going through a tough time. As Mary Beth mentioned we are a friendly bunch so ask any questions you need to 😁 She was also spot on when she said these CIs are life changing!!
 

I’ve had a severe hearing loss in both ears since childhood due to illness and 4 years ago I decided to get my first CI and this past Monday I went bilateral. I knew in order to break the communication barrier I would need at least one CI. It worked amazing with my hearing aid. My quality of life improved so much and when the pandemic hit, I realized how much I relied on my CI to do my job. I would not be able to do apparel product development with out my CI. So that thought inspired my going bilateral. I wanted security if something happened to the first CI.
 

I too was concerned with facial paralysis both times but I trust my surgeon. They have monitors to help them navigate and not cut facial nerves or taste buds. I had really bad tinnitus in my first CI ear and the CI actually helped tremendously quiet the noise. It comes back from time to time but it’s nothing like it used to be. My second CI ear never really had tinnitus but it’s currently experiencing a humming and buzzing. But then again my first CI ear was singing The First Noel after surgery 🤣

I know it’s hard but try to stay positive! It’s sounds like you are doing every right and possible to get back to hearing well. Keep researching and asking us questions!!

[Chris L]

26 minutes ago, Megan L. said:

@Chris L 

Welcome to the group!! 
 

I’m sorry to hear you are going through a tough time. As Mary Beth mentioned we are a friendly bunch so ask any questions you need to 😁 She was also spot on when she said these CIs are life changing!!
 

I’ve had a severe hearing loss in both ears since childhood due to illness and 4 years ago I decided to get my first CI and this past Monday I went bilateral. I knew in order to break the communication barrier I would need at least one CI. It worked amazing with my hearing aid. My quality of life improved so much and when the pandemic hit, I realized how much I relied on my CI to do my job. I would not be able to do apparel product development with out my CI. So that thought inspired my going bilateral. I wanted security if something happened to the first CI.
 

I too was concerned with facial paralysis both times but I trust my surgeon. They have monitors to help them navigate and not cut facial nerves or taste buds. I had really bad tinnitus in my first CI ear and the CI actually helped tremendously quiet the noise. It comes back from time to time but it’s nothing like it used to be. My second CI ear never really had tinnitus but it’s currently experiencing a humming and buzzing. But then again my first CI ear was singing The First Noel after surgery 🤣

I know it’s hard but try to stay positive! It’s sounds like you are doing every right and possible to get back to hearing well. Keep researching and asking us questions!!

 

Thank you for your response, it means a lot to me.

How long did it take you to be able to understand speech in the first CI implant? The idea of surgery like this scares me, but I am fairly certain I dont want to stay this way either.

My sister is completely deaf in one ear, but as far as i know perfect hearing in the other, and shes always so happy and positive, I feel almost embarassed to be this upset over this considering her outlook and her being in a similar boat ....although my other ear is far from perfect so maybe that has something to do with it haha.

 

Again thanks for the response, I plan to update as I go thru this process.

 

 

 

[Megan L.]

@Chris L

It's important to note that everyone's journey is different with understanding with the CI. If I remember correctly, with aural rehab, I was understanding words in a few weeks and understanding full sentences in 2 months. To put it in perspective - my first CI ear hadn't understood words in approx 23 years and had zero discrimination. So, I was really working with nothing in terms of word recognition. My second CI ear is not really much better...tested at 1% the first time and 10% the second time in word recognition. 

I totally understand your fear of surgery! This was my 4th surgery and I was no less scared than the first 3 times (I had 2 fistulas in each ear + 1 CI). I was very very nervous and I told the crew here and I told my surgeon the day of surgery. So I get it 😊 

There is no need to feel embarrassed. Everyone reacts differently to hearing loss. Whats important is that you acknowledge your feelings and you are trying to get yourself to a point where you feel comfortable.

Keep charging ahead!! And definitely keep us posted 😁🦻

[Mary Beth]

@Chris L

I find it’s not very helpful to compare our journey with the journeys of others.  Everyone is unique.

Be kind to yourself.

My first CI ear had not processed any sound at all for the 24 years preceding being implanted.  It had heard before that to varying degrees.  It started to understand speech hours after activation.  My second CI ear had used a hearing aid before implantation.  It was slower to start understanding speech but progressed quickly once it caught on.

I encourage you to think of getting a CI as a positive experience that has the potential to make listening so much easier after you adjust.  
 

In the meantime, there are apps and free services that automatically convert speech to text.  Check them out.

 

Cell phone calls....   InnoCaption 

Android phones for live speech... LiveTranscribe

Android phones for online videos/podcasts/etc.... LiveCaption

iPhones for live speech.... Otter.ai (10 hours a month free)

Video calls.... GoogleMeet

[Jared Charney]

Hi Chris,

I have a similar story: I lost all hearing in my right ear after I was rushed to the ER for a bout of vertigo, a viral infection left with me tinnitus and between no hearing and the 24/7 ringing in my ear I retreated far away from life this was four years ago. On December 4th I was "activated" and I can report that when the processor is on I don't suffer from the tinnitus and although I can't discern most sounds coming into my right ear even when I am in noisy situations I'm hearing much better. For example last night I photographed a hockey game which before surgery would have been one of the environments that was most uncomfortable for me but again I believe that my brain is less stressed. Another good example is when I cook the stove top fan would drive me insane and make me impatient around my family but now it just doesn't bother me. 

I also have a better sense of sound localization and I love being out in the rain/snow and hearing from both ears. When I isolate the sound to my CI it's been slow but I'm understanding more words and sometimes without the closed captions on. Voices sound like Gollum from Lord of the Rings but I'm understanding that I will have to be patient. Being less than a month into my activation I also really appreciate hearing simple things like the sound of my car's blinker or the beeping it makes when I turn the ignition.

 I understand your hesitation for surgery but I can report that I left my house at 5:30 am and was back home by 12:30 cooking eggs for myself. No paralysis, no taste of metal and soreness / discomfort was maybe 3-4 days tops. The bandage looked like Princess Leia's hair and was annoying but in 48 hours it was history. 

I wish you the best of luck and all I can say is I wish I could have started this journey sooner but the best part for me is I no longer long for what I lost and that alone is a bit of a revelation.

[Chris L]

3 hours ago, Jared Charney said:

Hi Chris,

I have a similar story: I lost all hearing in my right ear after I was rushed to the ER for a bout of vertigo, a viral infection left with me tinnitus and between no hearing and the 24/7 ringing in my ear I retreated far away from life this was four years ago. On December 4th I was "activated" and I can report that when the processor is on I don't suffer from the tinnitus and although I can't discern most sounds coming into my right ear even when I am in noisy situations I'm hearing much better. For example last night I photographed a hockey game which before surgery would have been one of the environments that was most uncomfortable for me but again I believe that my brain is less stressed. Another good example is when I cook the stove top fan would drive me insane and make me impatient around my family but now it just doesn't bother me. 

I also have a better sense of sound localization and I love being out in the rain/snow and hearing from both ears. When I isolate the sound to my CI it's been slow but I'm understanding more words and sometimes without the closed captions on. Voices sound like Gollum from Lord of the Rings but I'm understanding that I will have to be patient. Being less than a month into my activation I also really appreciate hearing simple things like the sound of my car's blinker or the beeping it makes when I turn the ignition.

 I understand your hesitation for surgery but I can report that I left my house at 5:30 am and was back home by 12:30 cooking eggs for myself. No paralysis, no taste of metal and soreness / discomfort was maybe 3-4 days tops. The bandage looked like Princess Leia's hair and was annoying but in 48 hours it was history. 

I wish you the best of luck and all I can say is I wish I could have started this journey sooner but the best part for me is I no longer long for what I lost and that alone is a bit of a revelation.

 

 

Thank you for this. 

 

It has occurred to me that the decision on which brand to go with among the 3 will be mine. I know this is a Med-El forum, I am interested in an Off the ear type like Rondo or Kanso from Cochlear. Advanced Bionics to my limited knowledge so far doesn't offer an off the ear version.

 

Considering this decision is a very big one, did the possibility of Med-el, AB or Cochlear going out of business weigh on your decision? What if I went with Cochlear or Med-El and they’re out of business in 10 years ......I’d be left without hearing once the processor I had eventually died no? 
 

It's my understanding Cochlear has the highest market share.....should I read anything into that?

 

It all feels so overwhelming.

[Mary Beth]

@Chris L

It can feel overwhelming to choose brands.

There was a company called InerAid I believe that went out of business awhile ago.  Med-El stepped in and provided a processor for those people so they could still use their implant.  Med-El has a great heart.  
 

I doubt any of the 3 large brands will go out of business.  There are too many people who have these implants.

Check out the recall history of each brand online for internal components.

Yes you are correct that AB does not have a one piece processor like Rondo 3.

Research the brands and talk with your CI team.  Choose the brand you feel is best for you.

Med-El CIs have been amazing for me.  I am a very happy CI user.

[polyesternapkinstowaway]

51 minutes ago, Chris L said:

 

 

Thank you for this. 

 

It has occurred to me that the decision on which brand to go with among the 3 will be mine. I know this is a Med-El forum, I am interested in an Off the ear type like Rondo or Kanso from Cochlear. Advanced Bionics to my limited knowledge so far doesn't offer an off the ear version.

 

Considering this decision is a very big one, did the possibility of Med-el, AB or Cochlear going out of business weigh on your decision? What if I went with Cochlear or Med-El and they’re out of business in 10 years ......I’d be left without hearing once the processor I had eventually died no? 
 

It's my understanding Cochlear has the highest market share.....should I read anything into that?

 

It all feels so overwhelming.

Yes, that Cochlear spends the most on marketing

Obviously none of us can see the future but none of these companies are going anywhere.

[Jared Charney]

Hi Chris,

I think Med-el is probably in very good shape but again it's all up to you. For me, I was super happy with the customer support from Med-el that made a huge difference. The person at Med-el I have been in contact before and after surgery was once an audiologist herself and is really making things easier for me. It's been great to have someone act as a 2nd opinion/etc. I like having the behind the ear (actually surprised by how much I like it) and the Rondo 3. 

[Mary Beth]

@Chris L

This is the story I was referring to...

https://www.google.com/amp/s/cochlearimplanthelp.com/2013/10/15/the-ineraid-cochlear-implant/amp/

[Mary Beth]

Med-El had a great year and introduced a lot of new tech.  They also started a clinical trial of a totally implantable CI.

I was not concerned with any of the three FDA approved brands going out of business when I was comparing brands.  In my opinion, the competition between the brands brings advancements for us all.

[Chris L]

On 12/27/2020 at 10:28 AM, Jared Charney said:

Hi Chris,

I have a similar story: I lost all hearing in my right ear after I was rushed to the ER for a bout of vertigo, a viral infection left with me tinnitus and between no hearing and the 24/7 ringing in my ear I retreated far away from life this was four years ago. On December 4th I was "activated" and I can report that when the processor is on I don't suffer from the tinnitus and although I can't discern most sounds coming into my right ear even when I am in noisy situations I'm hearing much better. For example last night I photographed a hockey game which before surgery would have been one of the environments that was most uncomfortable for me but again I believe that my brain is less stressed. Another good example is when I cook the stove top fan would drive me insane and make me impatient around my family but now it just doesn't bother me. 

I also have a better sense of sound localization and I love being out in the rain/snow and hearing from both ears. When I isolate the sound to my CI it's been slow but I'm understanding more words and sometimes without the closed captions on. Voices sound like Gollum from Lord of the Rings but I'm understanding that I will have to be patient. Being less than a month into my activation I also really appreciate hearing simple things like the sound of my car's blinker or the beeping it makes when I turn the ignition.

 I understand your hesitation for surgery but I can report that I left my house at 5:30 am and was back home by 12:30 cooking eggs for myself. No paralysis, no taste of metal and soreness / discomfort was maybe 3-4 days tops. The bandage looked like Princess Leia's hair and was annoying but in 48 hours it was history. 

I wish you the best of luck and all I can say is I wish I could have started this journey sooner but the best part for me is I no longer long for what I lost and that alone is a bit of a revelation.

Hi Jared,

 

hope this message finds you.

 

how’re you hearing now? My surgery is in 7 days.

 

your story is very similar to mine except I have been deaf from sudden loss for 9 months.

 

same ringing in the ear, vertigo when it happened etc.

[Mary Beth]

@Jared Charney see Chris’ post above 

[Jared Charney]

@Chris LSometimes it's hard to know exactly how much better I'm doing but I can safely say that it's been about 9 months since activation and literally everyday I feel so immensely grateful that I don't suffer through the tinnitus and that alone allows me to hear better for sure. I have more stamina for the day and for the most part more patience. Also, I do seem to be progressing in situations with background noise and for sure this makes a huge difference to being back in the moment as opposed to wanting to leave early or retreating to some corner and disengaging. Where is the surgery taking place? LMK if you have any other questions, concerns, etc. and of course I wish you all the best!