Overwhelmed and a bit worried

[Heather W]

Hi everyone!

I was just activated on Monday 6/20. I have the Synchrony 2 implant with the Flex28 electrode. I was given both the Sonnet2 and Rondo3. I am also bimodal. I use a Phonak HA in my right ear. 
 

I work FT and live alone. To say the CI sound is overwhelming is an understatement. If I only use my CI, I can barely understand speech. If I use both CI and HA, I can function but the sound is so odd on CI side, that I’m struggling sometimes, especially on the phone. I’ve taken my CI off to go to the gym this week because it’s super loud and noisy there (warehouse type setting) and I just am not sure how to be active with a CI on my head. Then there’s all the stuff they gave me…trying to learn the devices as well!!!
 

I’ve read that it takes time, but I’m worried that things will always sound this way. Everything, both environmental sounds and voices, sound electronic and distorted. And it’s like all the non speech sounds are louder than speech. 
 

I guess I just need some reassurance from the veterans in the group. Feeling very overwhelmed, overstimulated and mentally fatigued. 

[Mary Beth]

@Heather W

Congratulations on your activation!

It is overwhelming at first, in all the ways you mentioned.  It helped me to think of it as a journey.  
 

My audiologist’s rule was CI on during all waking hours and spend at least 2 hours daily with the CI alone (hearing aid off).  I wore the CI all waking hours, no matter what things sounded like but spent more than 2 hours daily with my HA off.  I worked on aural rehab activities to train my brain to adjust to the CI input.  I recommend that you begin with Word Success.  It’s a free app.  Do not take the placement test.  Just start at level 1.  Level 1 does not require the ability to understand words.  It just asks us to recognize if what we heard sounded like a 1, 2 ,3 or more syllable utterance.

 

CI audiologists follow different activation protocols.  I was fortunate that my CI audiologist followed a gentle approach.  
 

I found it helpful to keep a listening journal of new sounds.  It helped me focus on the WOW moments.

We are a friendly group.  Keep posting and we will cheer you on.

[Dianna]

Hi heather! I was implanted after i retired. I am sorry you are not able like i am to relax and practice alot. I will tell you the simplest practice say with hearoes, or word success for a little bit, then you should see a bit of progress. It happens pretty quickly, though not as noticable. Maybe focus on just one or several co workers, i did this with my nephew. His voice and words were the most clear.

It will be a bit, but words will clear up and you will have wow moments.

Dont discourage, pop in here or search for subjects you have questions on. Tis a fun group!

 

[Lauren]

#twinning. 

I was implanted and activated June 2021 on my left side. Right side is still wearing a HA (Phonak to boot); even got Sonnet 2 and Rondo 3. Mary Beth and Dianna pretty much covered it so I’ll just add that it takes time, practice, and a lot of mapping appointments. Hang in there. 

[Dave in Pittsburgh]

Congratulations I’m bilateral I had my first implant in 2016 and second 2018 word rehab is so very important this is a journey we all have been in the same boat and we all survive 

Happy Hearing 

[Kylie]

Hi @Heather W this is what we all experienced at the start. It is indeed a lot of weird electronic noise. But it WILL get better with time and practice. Quicker than you expect! And the two sides will resolve into a better single sound together.

[Andrew42]

@Heather W. First congratulations. Second don't worry. Nothing you are experiencing seems out of the ordinary. I am seven months activated with a Rondo 3. The key, initially is to wear the CI enough that you can make valid suggestions when you go to mapping sessions. To do that you need the experience, good or bad so wear the CI as much as you can tolerate. All the previous advice you have received sounds good to me. I have an HA in my left ear and my hearing/understanding is better when I have both operating. Initially, like you, words were gibberish at first when I only had my Rondo attached.  It is not perfect now but so much better. I can operate with just my CI.

I don't train enough but I have found Angel Sound to be a good programme to use. 

My understanding of music is still poor. I never had perfect pitch but I could and did play the violin. My appreciation of pitch as opposed to beat and volume is still poor. I have just been given a special music map but, frankly, though better it is not a panacea. Time will tell.

In summary, the brain has stuff to relearn, give it time.

[Mary Beth]

@Heather W

If you would like to chat with several Med-El CI users, consider joining in the next GoogleMeet chat.  Here is a link.  Just select the arrow in the link to go to that topic.

 

[Heather W]

@Mary Beth
@Andrew42

@Lauren@Kylie
Thanks everyone for your encouragement. I’m still overwhelmed and a bit worried. I appreciate the tip about making suggestions at my next mapping appointment and will start a hearing note on my phone as I practice with the apps and as I’m going throughout my day. I see comments about your brain “adjusting quicker then you expect” and wonder how long? All voices sound robotic and garbled through just my CI, and certain voices are unintelligible. Certain sounds (like s, sh and soft c) sound like a very loud waterfall. In louder situations, the sound from my CI actually makes it harder to understand because the distorted sound overwhelms the sound from my HA. 
 

I have bilateral sensorineural hearing loss, but my left ear has always been worse. When I first started wearing HA in 2014, the Audi had to adjust my left HA amplification below what I needed in that ear in certain tones due to distorted sound. It would sound like a blown speaker. Certain speech sounds, like s, sh, f, th, were so disturbing. The Audi suspected that the hairs in particular regions of my cochlea were just dead, thus the distorted sound despite amplification. While my CI experience is different, some of my sound experiences are the same. So, I’m concerned. What if the distorted sound is because of something other than my cochlea and this CI won’t help? 

[Mary Beth]

@Heather W

Understandable for sure.  But listening with a cochlear implant is very different than listening with a HA.  It is difficult to believe that things will sound so much better when right now everything sounds like a mess.

In the early time after activation, things change rapidly.  
 

I wish there was a magic timeframe that we could say is when things will begin to sound good to everyone but it just doesn’t work that way.  Everyone’s journey is unique.

What we can say is that there are things we can do to help teach our brains to use the CI input well and thereby speed up our process.

wearing the CI all waking hours

spending at least several hours listening with the CI alone everyday 

working on aural rehab activities- both apps/online programs as well as activities with a friend/family member

reporting what sounds good and what doesn’t to our audiologists at our scheduled MAPping appts

accepting that this takes time and giving our brains the time needed

I hope things start to sound better to you soon.  I started off hearing only static and beeps so my journey did not start with understanding speech.

[Enegra]

At my activation in 2020 I heard only bells and whistles, no speech. People were like some sort of funny flutes mixed with ambulance sirens. Prior to the CI I had profound hearing loss in that ear, hearing aids only gave me environmental awareness, speech understanding was close to a flat zero.

At the beginning the high frequencies were terrible, because they were gone probably from the birth. Many years of not having heard them. It's typical that the frequencies that had a long absence / were never heard properly take the longest to normalize.

It took a long time and several map adjustments, but I can hear speech just fine with that ear now. In my case a true "oh wow" moment came over a year after activation... so if you are disappointed early on, it doesn't necessarily mean things are going badly. Progress continues to come for a long time!

[M Dodge]

Lots of great advice. I've used Angel Sound a lot to work on vowels and consonants. My mapping sessions are more focused. I now hear better with my CI and HA. Also, I downloaded the MED-EL app. It works like a finetuner on my phone. Having different programs for certain situations also helps. 

[Darlene Mac]

@Heather W Hi, Heather, and congratulations on your activation!  I've been reading all the posts and there is a lot of great advice.  I also have a CI on the left and a (Phonak) HA on the right, so we're kind of a little club with Lauren!  As with MaryBeth, my audiologist recommended that I use my CI without my HA for a couple of hours a day, and wear my CI all day.  It was very scary to take out my old reliable HA and depend on the new and noisy CI, but I had to trust the process.  At first, everyone sounded like a chipmunk and all the noise was overwhelming.  I did a lot of rehab online and worked hard at it.  Sometimes I was exhausted and had to rest, even nap!  I got all my family and friends and co-workers involved so they knew what I was going through and they were so supportive.  It takes time, but eventually your brain just adapts and things start to sound better.  Try not to get discouraged; we're all with you on this journey! 

[Dianna]

Hi heather! Omg water was huge! First time i flushed the toilet after activation i thought i was going to be swallowed up my a tsunami!! Plastic bag rustling made me turn down volume! I mainly had only volume controls on 4 identical maps with increasing volume. By the next mapping i was on the highest! Try notvto focus on everything at once, soon stuff will be clearer and you may not even notice! When you get home from work, if you're not too tired and weather permits, try taking a walk and just listen.  It seems slow but truly its not!

Welcome welcome welcome!

[Roy]

My audiologist was like a Marine drill sergeant: CI only, all the time, no hearing aid in the other ear. My rehab program was more or less self-designed, with equal parts conversation with friends, listening to my own voice (the hardest part - just awful at first), and public domain audiobooks I found for free on https://librivox.org. 

They're read by volunteers, some of whom have extravagant accents and doing the reading as training in speaking English. It's a real challenge, but if you want to find out what happens to the Count of Monte Cristo you have to stick in there.

But like Dianna I'm also retired and had the luxury of taking the time to do this stuff. But stay with it, Heather. It will come.

[Dianna]

Hi again heather, i know its so exciting getting activated, so many mixed noises at first. Everyone says it will come.

As i sit in the morning outside, so many birds twittering away, watching does emerge from hiding with their babies,  i am amazed at each morning the twitters do become clearer. I heard a low tone and omg it is a train going through town 7 miles away! In the 3 years ive been here, never heard it! You want to hear every sound, and you are, your brain just doesnt know it yet!

I hate to be another voice saying be patient, practice and all, for me im now at 10 months post activation, sometimes still frustrated, but when i look back, i know ive come a long long way. I have ci on left only, no ha yet, but i can hear sooooo much more!

[M Dodge]

Mary Beth,

I really like your Word Success suggestion. I tried it the other day and liked it. The rapid-fire words make it fun and challenging. I normally use Angel Sound on my computer. It's also free and challenging but designed more for little kids then adults.  

[Mary Beth]

@M Dodge

I am happy to hear that.

Word Success (which used to be called CLIX) was the most helpful speech training app for me.  I would use it even later on to find out which sounds were confusing to me.  I kept a list of errors that repeated like the word was bat but I heard back and brought the list to my audiologist for MAPping.  I also used it to get used to new MAPs.