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[mcnarym1]

16 hours ago, Armybrat05 said:

Finally got activated 2 days ago, with another mapping yesterday! (back to back appointments). My brain accepted it and the implant worked! I am now able to 'hear' with it. Right now my audiologist says she's focused on volume and not clarity and understanding. Volume so far has not been any issues, it may take about an hour or so when I change programs to louder volumes but my brain eventually accepts it and settles down and it starts to sound 'normal' instead of 'loud'. Just so everyone knows I hear electrical sounds, not mechanical or anything like that but electrical is the best way I can describe it, with some deep 'bass' sounding type sounds for some of the lower pitch sounds like voices. I did a booth test on the 2nd day and with the implant (and sounds not words) I am hearing at a mild-moderate level of hearing which I have not heard at since elementary school. which is wonderful, we also discovered the 2nd day that I was hearing more middle to high pitches with not all of the lower pitches so this was adjusted. Maybe my next test when I go in will be better.

My audiologist is encouraging me with adjusting to volume, and encouraging me to ask what specific sounds are if I don't know so that my brain can learn to associate sounds with things. But she has not said anything about trying to do any training? especially training to help my brain understand words that it is picking up. So I guess my question here is do I wait till my next appt. (in about a week) to see if she gives the go ahead to do training then and just focus on volume and associating sounds for now, or should I go ahead and start training?

Also I have had a bit of a problem with getting my magnet to stay on- my audiologist seems to think it is magnet strength and will get me a more powerful magnet to try (but I have to monitor my skin). I was wondering however if it could be just because I just got it or because of my hair? (my audiologist seems to think its not my hair is not the problem) But I seem to find that it falls off because it either not connecting well because of the hair on the site or because of the hair surrounding it- pushing it off. So I just wanted to hear from some opinions on here.  Also have any of you experienced your CI turning itself off? (I have checked the battery and the batteries are fine and battery is on, but my CI was not picking up any sounds, so I turned the battery part off then back on and it was fine.) Thanks for any and all help!  

Great news! Everything you're going through is exactly what I did. I had 2 back to back appointments at Johns Hopkins, they said they do this because the first day is really just getting used to the CI and not too much mapping goes into it. Obviously they adjust volume on the first day but don't do much fine tuning. The volume of your CI changes like you said and it's the same for me. When I get mapping done everything seems loud for like an hour and then my brain accepts it at the correct volume. I finally just finished my mapping appointments that were like once a month but I remember thinking every time she cranked the volume I was like "Oh come on I just got used to this volume".

I was told pretty much exactly what your audi told you. If you hear a sound, ask what it is if you don't know. I still do it, almost 2 months out of activation. What I actually did to help my self associate sounds, was go to Starbucks and color or work on my computer. Starbucks is always busy but I was able to recognize sounds like the blender/etc. One thing you can do though is go to MedEls website and find some information on resources to practice sentences/etc. http://www.medel.com/us/soundscape/

The magnet is an issue for me too! A lot of people say it's due to the strength but I asked my audi the other day and she said it could be the strength or if you have thicker hair it could be that too. Someone on here or the FaceBook group for MedEl users actually recommended this, I have my fiance shave the spot where the magnet is, every couple of weeks. This helps the magnet stay a lot easier because it's not trying to go through my hair, I also think it helps wiht clarity just a tiny bit. If you do go up a magnet strength to like 4, then yes you do need to monitor your skin because it's very strong and can affect the area a little bit. Which type of CI do you wear for now? I had htis problem with my Rondo not staying in, but my Sonnet works fine. I've never experienced the CI turning itself off but the only thing I can think of is the batteries last about 2-3 days. There is a warning beep that you'll at some point be able to hear, it's not too high pitched but if you're like me, the first time the batteries went out, I still wasn't able to hear in that range so I never hear the warning beep which tells you you basically have 5 minutes to replace the batteries before they die.

[Mary Beth]

It's exciting to get activated and begin on your CI hearing journey.  Best of luck to you.

As far as difficulty with the coil staying attached (magnet), it could be due to swelling from surgery.  Many people reported that this issue improved for them over time.  We all need to monitor our skin under the coil no matter which magnet strength we use.  Any pinkness, discomfort or tingling sensations in that area should be reported to our audiologists right away.  The integrity of that skin flap is very important to CI users.  Some people do shave that area.  I do not and have no problem with the coil or the Rondo staying in place.

If you are using the Sonnet, here are some tips about it turning off by itself:

1). The DL-coil is set to automatically turn the Sonnet off if it is not in communication with the internal part after a few moments.  I hated that feature because sometimes I pop one coil off to train the other side and I want that coil to still be working when I reattach it.  So this week my audiologist turned that feature off and I am so happy!  We also turned off all of the flashing alert lights on the DL-coil since I can not see them anyway when it is on my head.  They are useful for parents and teachers of CI users.

2).  People are reporting that they are sometimes getting false dead battery beeps with the Sonnets even when they know the batteries are not dead.  They are replacing the battery covers when that happens.

My guess is reason 1 above may be causing your Sonnet to turn off because you mention difficulty with magnet retention.  When that connection breaks, the Sonnet will power off a few moments later.  At your next appointment, talk with your audiologist about turning that feature off in your programs.

 

enjoy listening with your new hearing.  

[Armybrat05]

Thanks, both to mcnarym1 and Mary Beth!

Wow mcnarym1 your journey sounds like mine (so far for me haha), I actually don't mind the volume change as I know it will help eventually, I am excited and I am being as patient as I can, I know that volume is important and that clarity isn't expected the first time you put it on, it instead develops over time, however I am a bit tired of focusing on volume and want to start focusing on understanding and clarity lol, so that is pretty much where I am at right now.

Thanks for the training tip, I actually do have some training tips saved up to use when I start on training, I just didn't know when I am supposed to start because my adui said to focus on the volume and asking what sounds are what but said nothing about starting training. so do I start now?

I was actually told by my audiologist not to shave my head? She told me that hair was actually not the problem? I'm not sure what to say about this? She told me that stubble from shaving would cause more problems that actual grown in hair... I have not heard this from people who have shaved but she apparently said they have statistics on this. I was started off on the sonnet, I wanted to do the rondo or practice with both but she started me off on my sonnet and apparently I won't do my rondo for a few weeks....so it is my sonnet coil I am having problems with. I know a lot of people have had problems with their rondos staying on so I'm not looking forward to finding out about mine because i'm already having problems with my sonnet staying. I think it has improved slightly but I still feel like it's capable of falling off at the slightest thing and not really liking that sensation. I don't know if any of you have noticed with yours or not, but with mine, I can feel the inside implant, so I actually know where it is, but when I place the implant on my head I have noticed that the coil is 1/4 off to the side of my implant, I have tried centering it but because of the magnet pull it likes going off to the side a bit, I don't know if this is normal or not. I didn't bring it up with my audi yet because I didn't notice till after the 2nd appt with her.

I don't think the turning off has anything to do with the battery because it started doing it day 1 when the batteries were brand new. I actually did hear the warning beep but I didn't realize what it was till I figured out that my family wasn't hearing the same sound I was, so I took it off, turned it off, then back on, placed it back on my head and when I wasn't getting any sound whatsoever even though I just turned it on (which is usually what works when it turns itself off), I realized that had been the battery warning and it had been 3 days. So now I know what to listen for. It's very different sound from a hearing aid battery warning, but does basically the same thing with the tones so I was able to make connections.

Mary Beth, I am not an expert but I don't actually feel any swelling around my implant area anymore, when I went for my check up with my doctor he didn't mention any swelling, and my audi when I mentioned the problem with it falling off also didn't mention anything about swelling. I am not saying that there is no swelling and that isn't the problem because it very well could be and I just can't feel the difference anymore or wasn't told. Once the implant is in place as long as I am careful with my hands and hair it tends to stay but getting it in place takes it forever to attach and stay. It has improved a little bit instead of taking me 30 minutes now its only taking me 15 minutes but it still requires me menuvering the hair around the internal implant in a specific way and being careful with the hair surrounding the external piece after its connected, this is why I am assuming its my hair. However that doesn't mean other things aren't at play in the problem.

Thanks for letting me know what to monitor for!!! I was thinking about shaving just on the implant but not the external hair so people don't see a bald spot or anything (my hair has enough layers for that haha), but was told not to shave at all. I don't want to have to shave, but if the next magnet is too strong I don't know what else to do... maybe eventually it will resolve? Guess I will have to wait and see either way.

Mary Beth, Your first suggestion/reason for why the external piece is turning itself off actually makes sense!!! You are correct, it is usually off the implant for a few minutes before I can get to it when I discover that I can't hear anything after hooking it back up! Thanks for letting me know! I will have to have a talk with my audi. What flashing light features did you turn off? I would like to keep the feature that tells me what program I am on, but any other feature that I can't see while its on my head (like you said) is worthless to me too, while I have family and friends around a lot they aren't gonna be looking at my CI, and I don't want it distracting other people if they happen to be sitting/standing behind me and see flashing lights lol, (I don't care if people see or ask about my CI just don't want to distract anyone).

 

[mcnarym1]

12 minutes ago, Armybrat05 said:

Thanks, both to mcnarym1 and Mary Beth!

Wow mcnarym1 your journey sounds like mine (so far for me haha), I actually don't mind the volume change as I know it will help eventually, I am excited and I am being as patient as I can, I know that volume is important and that clarity isn't expected the first time you put it on, it instead develops over time, however I am a bit tired of focusing on volume and want to start focusing on understanding and clarity lol, so that is pretty much where I am at right now.

Thanks for the training tip, I actually do have some training tips saved up to use when I start on training, I just didn't know when I am supposed to start because my adui said to focus on the volume and asking what sounds are what but said nothing about starting training. so do I start now?

I was actually told by my audiologist not to shave my head? She told me that hair was actually not the problem? I'm not sure what to say about this? She told me that stubble from shaving would cause more problems that actual grown in hair... I have not heard this from people who have shaved but she apparently said they have statistics on this. I was started off on the sonnet, I wanted to do the rondo or practice with both but she started me off on my sonnet and apparently I won't do my rondo for a few weeks....so it is my sonnet coil I am having problems with. I know a lot of people have had problems with their rondos staying on so I'm not looking forward to finding out about mine because i'm already having problems with my sonnet staying. I think it has improved slightly but I still feel like it's capable of falling off at the slightest thing and not really liking that sensation. I don't know if any of you have noticed with yours or not, but with mine, I can feel the inside implant, so I actually know where it is, but when I place the implant on my head I have noticed that the coil is 1/4 off to the side of my implant, I have tried centering it but because of the magnet pull it likes going off to the side a bit, I don't know if this is normal or not. I didn't bring it up with my audi yet because I didn't notice till after the 2nd appt with her.

I don't think the turning off has anything to do with the battery because it started doing it day 1 when the batteries were brand new. I actually did hear the warning beep but I didn't realize what it was till I figured out that my family wasn't hearing the same sound I was, so I took it off, turned it off, then back on, placed it back on my head and when I wasn't getting any sound whatsoever even though I just turned it on (which is usually what works when it turns itself off), I realized that had been the battery warning and it had been 3 days. So now I know what to listen for. It's very different sound from a hearing aid battery warning, but does basically the same thing with the tones so I was able to make connections.

Mary Beth, I am not an expert but I don't actually feel any swelling around my implant area anymore, when I went for my check up with my doctor he didn't mention any swelling, and my audi when I mentioned the problem with it falling off also didn't mention anything about swelling. I am not saying that there is no swelling and that isn't the problem because it very well could be and I just can't feel the difference anymore or wasn't told. Once the implant is in place as long as I am careful with my hands and hair it tends to stay but getting it in place takes it forever to attach and stay. It has improved a little bit instead of taking me 30 minutes now its only taking me 15 minutes but it still requires me menuvering the hair around the internal implant in a specific way and being careful with the hair surrounding the external piece after its connected, this is why I am assuming its my hair. However that doesn't mean other things aren't at play in the problem.

Thanks for letting me know what to monitor for!!! I was thinking about shaving just on the implant but not the external hair so people don't see a bald spot or anything (my hair has enough layers for that haha), but was told not to shave at all. I don't want to have to shave, but if the next magnet is too strong I don't know what else to do... maybe eventually it will resolve? Guess I will have to wait and see either way.

Mary Beth, Your first suggestion/reason for why the external piece is turning itself off actually makes sense!!! You are correct, it is usually off the implant for a few minutes before I can get to it when I discover that I can't hear anything after hooking it back up! Thanks for letting me know! I will have to have a talk with my audi. What flashing light features did you turn off? I would like to keep the feature that tells me what program I am on, but any other feature that I can't see while its on my head (like you said) is worthless to me too, while I have family and friends around a lot they aren't gonna be looking at my CI, and I don't want it distracting other people if they happen to be sitting/standing behind me and see flashing lights lol, (I don't care if people see or ask about my CI just don't want to distract anyone).

 

My audi never said anything about focusing on JUST the sounds and getting familiar with them? That's a little odd. I mean maybe like wait one more day to get used to some sounds but if you go to that link for MedEL, some of the games I think are just sound practice but it's more sentence practicing. I would practice that as well because it's the only way you may adapt to normal sounds faster. 

Some people do the hair shaving thing some don't. It's really your choice. I didn't shave the entire part and have a bald spot there, what I did was instead what you said. Shave under the normal length hair and only do the spot under directly where the magnet is. It isn't noticeable so don't worry. Although I did just buy Harry Potter skinit covers for my sonnet so it may be a little more noticeable.  I'd just give it some time though. The first 2 weeks are the hardest, that's what both my Dr. and audi told me. You just have to let your brain get used to everything. They compared it to like walking outside into the sunlight with no sunglasses, it can be shocking at first. You may not feel any swelling, but there is some. That entire area gets pissed off because you're messing with so many different nerves. If you put your finger by the area where you're implanted, it should feel at least a little numb. I'm almost 2 months out and the swelling is still going down. I think that may be your biggest reason right now as to why you're having issues with the magnet. Even if it is the Sonnet. I started out using the sonnet because it has the behind the ear piece and i was worried about it constantly falling off. My audi told me it's very common for CI users that once they start with one processor, they normally stay with that one. I only got the Rondo so when I go to my family cottage in Michigan and we go boating/charter fishing, I don't ever have to worry about it getting wet. 

Sorry I tend to jump around on topics but what magnet strength do you currently have your processor on? I have it on 3 and if I go up to 4 I have to be really careful because it's very strong. This is another reason I shaved the area of the magnet because I had the same issue with it falling off due to my hair so when I shaved it there was a big difference. If you choose to, I wouldn't shave it just yet and wait maybe like a week because you do have the swelling.  

[Armybrat05]

mcnarym1: I too thought it was strange, but guess I will start training soonish here because from what I've read most people start early, and I want to start.

OK about the shaving, thanks. Are skinits stickers or pull on fabric or what?. Thanks for telling me about the first two weeks because neither my doctor or audi told me that they just said that things take time.

Good to know there is some swelling because I don't feel any on the internal implant area. There is no numbness, I can feel the implant and there is no 'soft, mushyish' feeling like when you push on a swelling, I do have that to at least a small degree around the implant area, but do not feel it on the implant area, but like I said I am no expert. But swelling would make sense on why the coil falls off. I hope that staying with one processor is not the case for me, I ordered both because I wanted the ability to switch between processors in different situations. Understand about the rondo.

You are fine with jumping topics. I was told I have a 3 1/2? I didn't even know there were 1/2s I thought it was all full numbers 1-5. if there are no 1/2s then I have a 3 magnet.

Thanks for the advice

[Mary Beth]

I can help with understanding the magnet strengths.

the Sonnet processors work with two different coils: D-coil and the newer DL-coil

the D-coil magnet strengths are whole numbers only (1, 2, 3 or 4)

the DL-coil magnet strengths are numbered differently.  Magnets numbered 1, 2, 3 and 4 can be placed in either the (-) or the (+) position.  Magnet 5 must be placed in the (+) position only.  So there are 9 possible magnet strengths:

1-

1+

2-

2+

3-

3+

4-

4+

5+

 

Your audiologist may be calling the 3+, three and a half.

It's interesting that you feel the coil connecting at a different spot than you expected.  Remember that the internal device is larger than the magnet and that the coil is supposed to align itself with the internal magnet.

 

people with internal Concert implants, use magnets with strength numbers marked by circles.

people with internal Synchrony implants, use magnets with strength numbers marked by triangles.

 

there is a video on Med-El's YouTube channel that shows how to open the DL-coil and see the magnet position.

 

if you continue to have difficulty having the coil stay attached, ask your audiologist about temporarily increasing your magnet strength.  Many people are able to decrease magnet strengths later on.

 

as far as aural rehab, you can start that whenever you want.  I started on my activation day.  Smile.  I couldn't wait to get started.  Go easy.  Take breaks.  Remember that you want to meet with success so if something is too difficult, go to something easier.  You are training your brain.  Be a persistent yet gentle teacher.  Best of luck.

[Armybrat05]

Thanks Mary Beth!

[Adam]

Hi Shelby

my name is Adam. I live in the Southeast. I have bilateral implants for the last 5 years. As I'm sure you are already aware, this is a pretty awesome group of people here. Look forward to getting to know you

 

adam

[Armybrat05]

Nice to meet you adam and yes this is a great group of people!

 

[Armybrat05]

I went back to audi on Thursday- she told me all my light up features that needed to be turned off were already off because I'm not a kid, but told me she didn't want to turn off the automatic turn off program, and said that if I wanted to do that she would have to call Medel. Said her reasoning was that it shouldn't be turning off immediately, and she liked to keep the feature on for battery purposes. I understand her reasoning, it was just frustrating that she opposed me instead of doing what I asked of her and kind of feels like she doesn't trust me to be responsible enough to take care of my own batteries. But that is done and over and nothing I can do about that for the moment, as I am not bilateral I have no other excuse than it is annoying when it happens. It has improved some because my ability to get it to attach sooner rather than later has improved. I still have some trouble but it does eventually attach and stays on for the most part.

We have also decided not to switch the magnet just yet, she wants to wait and see.

Sounds are starting to sound natural to me, but not everything, especially voices are still not natural except my mom's and some of the training voices on medel's page,  but there is no understanding there yet. I can do follow along if I already know what is being said though. I went to deaffesitval-kentucky which is hosted at a performing arts center and I have to say that is the first time that music has sounded completely natural to me, however I have to say that I am not having any problem with music sounding natural- there is just no understanding of what instrument is making the music, or understanding of the singer's voice yet.

This is where I am at so far. I have gotten 4 more volume programs, it is taking awhile this time for the volume to become 'quieter' like the others did, my brain seems to accept this program (1) but  it is still loud (but comfortable), it is not getting much quieter. I am also working to try and make sense of words, I feel like if a voice sounds natural it would help more though, like my mom's- I just have a hard time breaking my habit of reading her lips.

Do voices start to sound natural before understanding words clicked for you all or did you understand even though things still sounded weird? Just curious to see how it worked for others.

[Mary Beth]

For me understanding words came long before voices sounding natural.  The CLIX app was great for me in the beginning.

 

I have 2 Sonnets and they each used to shut down at different times when disconnected.  I know it's not supposed to work like that, but it did.  One would power off moments after disconnecting.  I'm happy that feature is now off and I have not noticed a change in battery life.  That's just my experience.

[Kara of Canada]

I also used clix in the begining. As for turning off unessesary features I will wait till my one year. There is a feature called data-logging which tells the Audi which programs you use and how much or how little volume and sensitivity etc. So be patient and do the best you can. Best of luck!! Kara 

[Armybrat05]

Thanks Mary Beth. It is interesting to see your perspective. I am however having a hard time with ABclix- I can't seem to find the app. I have found iangel sounds and have started using that in addition to things on medel's website. I am wondering about whether to try audiobook (with the use of the actual book to follow along) to see how well that works or to wait.

Thank you too Kara for telling me about the feature, and for the luck. I am doing my best with listening and with being patient

I was told to try in my audi's office to see how fast the coil turned itself off, one time it did it immediately and the other time it took longer, so the audi just seemed like she really didn't want to turn the feature off. It has happened again and if keeps happening I will bring it back up but for right now I'm letting it go because she made it sound like even if she was to accommodate my wish, that she would take time in doing so, so there's no benefit right away.

Things started sounding natural for me a few hours after being first turned on, but it was all sounds, not words/voices, then by the second day (after second mapping) my mom's voice and another friend's voice sounded natural. After starting the training programs, all the training voices sound natural, even music sounds natural. However there is little to no understanding yet, Voices- except for the training programs, my moms and my friends, still sound unnatural, including my own, and a lot of noises. Also just for clarification for anyone reading, not all sounds/noises sound natural just certain sounds/noises; and while music sounds natural I am not able to differentiate musical instruments/pitches/notes or anything like that yet, and I can't always hear/comprehend the singer. I am able to follow along with the training programs and what they are saying a lot better than my mom (which shocks me), or my friend (not as shocking). It also shocks me (because my mom sounds natural) that my voice does not yet sound natural. I have also discovered that I am only able to understand/follow along with the training programs I'm using, if and only if, there are no loud background noises, actually complete quietness (or as complete as can be in this house), seems the best for understanding anything. I assume this is from my brain trying to focus on every sound that it hears and not just focus on what it is trying to understand.

 

[Adam]

Great update! Congratulations on a successful activation. 

I was hearing all new sounds so I just took a couple of days to just listen. I must have asked my wife a million times, what was that?

enjoy all the new sounds. Let us know how things are progressing

[Kara of Canada]

Great update! AB Clix is an iPad compatible app. Not sure if it is android compatible. That could be the reason you couldn't find it. 

[Armybrat05]

Adam, thanks!

I was similar to you, I took the first several days to just listen, more because my audi told me to focus on volume but never said anything about starting training right away so I didn't know when to start, I didn't know if an audi gave a signal to go ahead or whatever. Even if she would have said I can start training when I want (sooner rather than later) I probably still would have listened at least the first couple days.

And I was the same as you, I asked whoever was around what the different sounds were, seemed like a million times.

Kara, Thanks, I don't have an android but I also don't have an IPad only iPhone so I guess it doesn't work with iPhone either.

[Armybrat05]

Looks like everything is still on the right track, I am starting to understand simple things without looking at people when they talk to me. It's always random what I understand and don't understand though. Hearing levels last checked was in the mild-moderate range with having sound problems in the lower pitches. That was adjusted and hopefully with the next test will be able to catch everything or almost everything. My audi did the word repeat with me and I was able to understand and repeat everything was cool.

Question: does your voice ever sound normal to you after implantation? Most peoples voices are starting to sound natural only a few still don't. Mine however doesn't at all not even a slight change. Also can having a CI implantation affect your talking/singing ability- not by making you unable to do so but in changing it in any way?

[Mary Beth]

My voice sounds normal now.  I believe yours will in time too.

Listening with a CI can present difficulty in pitch perception.  This improved significantly for me when I received my second CI.

[Armybrat05]

ok, thanks.

I feel like it hasn't affected my talking except for improving it maybe, but I feel like it has somewhat affected singing. I didn't know if the surgery could affect vocal muscles or anything like that.