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New here and really need help


John Strother
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Hi I’m John. I have implants on both sides (MedEl Sonnet). The first one was my left ear and it was implanted Sept of 2016. It took a while but it got better and I could even listen to music (at this time my right ear just had a hearing aid which was close to no longer helping. So we decided to do the right ear also, since the left one had settled down and seemed to be working like it should. 

So the right one was implanted December of 2017. I’m still trying to feel comfortable with it. That was almost two years ago. When I read some of the experiences here, I can’t believe it that many of you feel comfortable after only a couple of months. I have been back to audiologist several times. I usually test well in the sound booth (quiet environment) but it is always too loud on the new one and I end up turning it down. When it is turned up the sound is piercing and I jump out of my skin. My wife and I have certain rooms that we cannot have a conversation in because of the acoustics and electronic echo, etc. I went to church Thursday night and the sound was even worse - it sounded like bad TV audio (is this because I watch too much TV, and the speakers are poor and is that what my brain is learning is normal?)

Also during high pitch sounds, my right eye blinks to the beat of the high tones. (Audiologist said that a facial nerve is probably tickling a wire somewhere.) I still cannot use a phone. I can “speak” into the phone but I cannot make out what the caller is saying, they tend to talk fast in this region (New England). My wife has to make all my phone calls for me. This just doesn’t seem right, especially after almost two years. I am 66 years old, and have worn hearing aids in both ears for about 35 years, before looking into getting cochlear implants.

If you think you understand any of this, or know of someone with similar experiences, or even just have some encouraging words, I would appreciate it. Because I am close to the end of my rope. I have ended up being too isolated because of having trouble with the noise in a crowd. I won’t even begin to tell of the problems this has created between my wife and I. I am to the point where I have to start thinking about just giving up on the right one. Audiologist says “patience, patience”.

Help!

John S.

 

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Hello @John Strother and welcome to HearPeers!

 

I am sorry to hear of the problems you are experiencing with your CI.

Let’s start with one item at a time.

You mention that your right eye blinks to the tones of high frequencies.  Has your audiologist made changes to your MAP settings so this has disappeared?  It is not okay and needs to be eliminated by changes to your MAP (program).

I am in northeastern NY state but travel 5 hours south to NYC for my CI center.  (New York Eye & Ear - NYEE).  Which CI center do you use?

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Hi, I appreciate your replying.

Yes, she has worked on the eye blink problem. The only way to make it go away presently is to turn that implant down. 

I live in western MA. My surgery was at Bay State in Springfield, my Audi is with the Bay State Rehabi

itation Center. She has worked on map several times, and then we think it’s better .... but it comes back.

she is considered very experienced.

So you’re saying I need to scream louder about the right eye ticks? 🙄

John

 

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@John Strother

LOL.  We need no eye tics. If anything at any time is causing your right eye to twitch still, I suggest you return for another MAPping appt.

I am glad you are working with an experienced CI audiologist.  Med-El also has regional audiologists who work with our clinical audiologists at appts when needed so if you ever feel the need for support from the regional Med-El audiologist (CAM- clinical account manager) you can just ask your audiologist to schedule an appt for you when the Med-El CAM can also join in.

In the beginning months, as you know, it can take awhile to get used to hearing frequencies that we have not heard for awhile.  After our MAP is stable though, that kind of uncomfortable listening moments should be gone.  Listening with a cochlear implant should not be uncomfortable and nothing should be too loud.  That is the purpose of setting our MCLs (most comfortable loudness levels).  I have been in very loud arenas and have not had to adjust my volume at all.  It was loud, but comfortably loud.

I encourage anyone who is experiencing difficulty with their programs to return for more MAPping appointments and to consider requesting an appt when the Med-El CAM can join in.  Sometimes it is tricky getting a comfortable and effective program.  Please do not give up.  There is help out there for you.

I hope things improve soon.

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Mary Beth, I have another question for you. What did you think about what I said about TV audio? Am I making it worse by watching TV? Does that even make sense?

Also I do take my remote controller for that ear with me everywhere. I keep working in programs like iAngel. They have helped and I seem to get better but the right one is still just not right. It’s really hard to explain to someone, except other CI wearers.

Also there is an aural rehab program at the local hospital. I believe I need to take that, because I need to do SOMETHNG. I am just not picking up speech well consistently. But I don’t know if I should get into that before my implant is satisfactory to me. I don’t know any other CI wearers. So that’s why I’m trying one of these forums.

thanks very much,

john

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@John Strother

I do not think listening to TV is causing any bad effect.

Working in aural rehab apps/programs is always a good idea.  I will tag you in a post of my favorites.  I encourage you to participate in the aural rehab opportunities at your center.  Have you connected with your Med-El consumer engagement manager yet? She will send you invites to Med-El Meet ups in your area.  You can find out who that is by contacting Med-El.

implants.us@medel.com

Also sign up for the new US HearPeers group which will give us opportunities to meet each other.

https://www.hearpeers.us/

 

Many settings can be changed to help us hear better.  Hang in there.  Keep seeking help.  Don’t give up.  This journey has its difficult parts for each of us.

 

Has your CI surgeon taken an image (x-ray or CT scan) AFTER the right side was implanted to view how the electrode array is positioned?

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No, my CI surgeon has not done a CT or anything. I ‘m not sure if my audiologist has even said anything to him about my difficulties. 

I like and respect my audiologist but I believe she is too busy, has too many CI patients to take care of. That’s why I was thinking I need to ask for help louder. 

Based on this conversation, I think one thing I am going to do is email her (Audi) this week and ask for appointment and also try to find out if she has even talked to the CI surgeon. She is hard to get ahold of by email, so if I don’t hear back from her in a week, maybe I will try to contact the surgeon directly. 

I will have to search my mailbox for any contact from MedEl. I have been to one of their meet and greets. It was in a fast food restaurant that was so loud I couldn’t hear anybody. 

Maybe I will email MedEl. After almost two years it is time to do something about this. 

Im sorry to sound like such a complainer, but I have a couple other health issues that also take up a lot of time. (.spinal stenosis and disc degeneration are just two of them and my back doctor wants me to consider having a spinal cord stimulator. I just can’t deal with another invasive treatment for now, at least until I get this implant straightened out.

Thanks for listening. Talking to someone helps

Thanks,

John

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@John Strother

Download this app if you have iPhone

Hearing Helper

 

or download LIVE TRANSCRIBE if you have Android

Free speech to text apps.

 

E93B10AC-3E18-45B0-A601-368E4DFE1445.jpeg

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Thank you Mary Beth, for the apps and things. I obviously do need to try some other things for a change, at least. I have only used iAngelSound and also a daily dial-in by Cochlear to hear information recorded. I have also looked at “Garage Band” which you don’t normally associate with cochlear Implant help, but if you have music in your history, it can help with identifying tones. All in all it’s a lot of work and practice, I’ve come to realize.

I will look into those apps tomorrow after I’ve had my sleep 😴

thanks, john

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