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[AnnetteT]

15 hours ago, Jason77 said:

@AnnetteT Glad you are off to a good start. Everyone’s activation and journey is different. It will get better and better as you immerse yourself in the sounds of life and do the rehab. So excited for you! 

Thank you! I'm already so encouraged, though I do still feel like the equivalent of a CI toddler as I wobble around (aurally, that is--my vestibular function finally normalized thankfully ) trying to get my bearings. I am really excited that pitch is starting to get better and I can enjoy a couple of songs (more details in my reply to @Rubella) ☺️! 

[AnnetteT]

4 hours ago, Dianna said:

Annette! Wow, glad you are training, i made it fun enough to do every day! 

Everyone keep up the fun! I do alot of tv shows that repeat alot so i have familiar voices and new ones that pop in in the various episodes...angel sounds and meludia...

Thank you, @Dianna! I have two tv shows that I've watched a lot that I plan to re-watch as the actors' voices will be very familiar. I should also pick up a show that has new episodes to get new voices as well, as you are doing. I'm also excited to try Angel Sounds and Meludia, but have been so preoccupied with my other music exercises that I haven't got there yet. I still can't believe that I'm enjoying a couple of songs only a few days in (see my reply to @Rubella on this thread for the too-long story☺️. I do think that Angel Sounds and Meludia will be my most frequently used, based on my research and people's shared experiences, but am logging all of my rehab so that I can know what worked well for my next surgery (I'm doing both one at a time at my surgeon's preference).

 

[Dianna]

Sounds great!

[Dianna]

Research is awesome! I read alot about the insertion of the implant and how in the beginning the implants were hard on the delicate cochlea.  Some of the negative results were not resolved without the info from "mistakes". Some current research is looking for computerized mechanical insertion devices....pre mapping, slow insertion, shape of implant, etc. It appears you had a surgeon who studied your specific physiology for your implant! Well done! I think some surgeons are going into this marvelous technology without extreme skill....its a billion dollar industry now! I am loving your information and experience sharing!

[Rubella]

AnnetteT - Thank you so much for sharing your amazing effort at rehab. Impressive progress.  And a bit daunting to think about as well. I love all of the detail you provided.   My current situation is that I have normal hearing in my lower range of my bad ear, then it ski slopes.  IF that is preserved, it would greatly aid my rehab - at least that is what I have read.  I fully realize that I could lose that low range hearing at any time and want to be prepared if that happens.  Thus the longer array is a great thing to have.  

Mary Beth - perhaps you have access to statistics that indicate success rates with preserving residual hearing using an array longer than 20 mm active length (Flex 28) vs one that is 20 mm.  I haven't seen that anywhere.  If I qualify, that will certainly be a question I ask the surgeon at Vanderbilt.  That said, if the surgeon indicates for any reason that he will use the  Flex 24 or 26 (both 20.9 mm), then either AB or Med El would be a similar choice.  The AB is 20 mm active length. 

I have my zoom with my AB rep and one of their science guys this evening and will ask about why they do not offer a longer array yet.  I won't know the difference in the end.  

This is all so helpful!

 

[Mary Beth]

@Rubella

There are members here in HP who have flex 28 and preserved residual hearing using the Sonnet EAS.

The preservation of residual hearing is a combination of soft electrode arrays and surgeon skill at preserving residual hearing.  Of course our own history of hearing loss and whether that is stable over time is a factor as well.

There are studies about preserving residual hearing online.

Have you seen this?  It explains the difference between types of electrode arrays- not just length of arrays.

https://blog.medel.pro/cochlear-implant-hearing-structure-preservation/

[AnnetteT]

On 2/19/2022 at 8:11 PM, AnnetteT said:

I am hearing melodies with rich bass tones (albeit distorted) and lyrics (not all of them) from a familiar song,

@Rubella, I was able to find the limit of even my long array (flex 28) for low tones. The (very deep bass) voice of Jeffrey Donovan (Michael Weston) in Burn Notice (available on Hulu or Amazon/not Prime and in clips on YouTube if your son wants to analyze what pitch he speaks on) ended up being transposed up an octave in some sentences while the voices of most other male actors in the clip that I just watched were ok. This is the same phenomenon that is experienced with shorter electrode arrays, but the longer array makes it happen at a lower tone vs a shorter array. I did just listen to Juan Diego Florez (a bel canto tenor) sing part of Besame mucho and it sounded like I will eventually hear him clearly (it is still fuzzy because I'm so early in my rehab). I also tried Diana Damrau with Queen of the Night (soprano) and Joyce DiDonato with Camille Claudel (mezzo soprano), but I can't get high notes very well yet (my hearing nerve was deprived of high notes for longer and some of the notes may be out of range). I expect that I will eventually be able to hear tenors and contraltos, with maybe mezzo soprano over time (but can't say for sure). I doubt that I'll ever enjoy operatic bass, baritone, or true soprano.  Maybe you can find some Advanced Bionics and Cochlear users who are musicians to compare their results with mine on when sounds are transposed up an octave while you are researching?

[Rubella]

This is excellent specific information to have for comparison.  It's so helpful you are in that study - you seem to have such a deep understanding of all aspects of your rehab and impacts of the technology.  I will put this out on Hearing Tracker and see if anyone is able to share their experience.  There are several musicians on that forum who are CI wearers too.  I am no where near you or Mary Beth in my music discernment.  I studied seriously for several years in high school after taking lessons since first grade, and enjoyed the years my three kids took piano, trumpet, french horn music lessons and were in band/chorus, but now I basically just listen to enjoy.  It sounds like the music rehab sites mentioned would be a lot of fun and a great refresher on so many things I've forgotten! 

[Mary Beth]

@Rubella

So much changed during the first months for me.  At first the piano notes sounded the same.  Now I can tell when I play a wrong note in a chord while playing a song.  My experience of pitch changed a lot during the first weeks and months.  When I play the piano…. All the way to the deepest piano bass notes…. the notes keep getting lower in pitch.

When I listen to deep contra bass male voices, they sound deep.

A lot changes in the first months.

[AnnetteT]

13 hours ago, Rubella said:

AnnetteT - Thank you so much for sharing your amazing effort at rehab. Impressive progress.  And a bit daunting to think about as well. I love all of the detail you provided.   My current situation is that I have normal hearing in my lower range of my bad ear, then it ski slopes.  IF that is preserved, it would greatly aid my rehab - at least that is what I have read.  I fully realize that I could lose that low range hearing at any time and want to be prepared if that happens.  Thus the longer array is a great thing to have.  

Mary Beth - perhaps you have access to statistics that indicate success rates with preserving residual hearing using an array longer than 20 mm active length (Flex 28) vs one that is 20 mm.  I haven't seen that anywhere.  If I qualify, that will certainly be a question I ask the surgeon at Vanderbilt.  That said, if the surgeon indicates for any reason that he will use the  Flex 24 or 26 (both 20.9 mm), then either AB or Med El would be a similar choice.  The AB is 20 mm active length. 

I have my zoom with my AB rep and one of their science guys this evening and will ask about why they do not offer a longer array yet.  I won't know the difference in the end.  

This is all so helpful!

 

@Rubella  I hoped that I didn’t bore you as I ended up writing a book, almost 🤦‍♀️. I admit to obsessing and researching for a while now to try to learn as much as possible to try to optimize my journey. but please note that others have more first hand knowledge. 
 

 I do have great news. The voice of the actor that I mentioned has been sounding deeper and deeper as I listen more. I think we should be careful to use my Week 1 after activation experiences as being indicative of what will be true after acclimatization. I’m just so excited to hear again that I may be going a little overboard in my expectations for the first week. I would love to learn more about what your community of musicians from other implant brands to learn what they hear as the lowest bass notes (I’m ever curious!). I’m so excited that it seems to be getting where I can here more bass and treble though full disclosure the voices still sound “off” from what I remember. Definitely trust @Mary Beth’s experiences here as she is an expert-level Ci user and I’m basically at infant to toddler level!  

Edit: On re-reading your post  about your normal hearing in the bass notes, CI hearing is unlikely to match natural hearing even at the most optimal level.  This would  make the decision harder for me to make if I had this situation. I would ask my surgeon if a longer implant would affect this residual hearing (it likely would) and think about how long the natural hearing might last (eg if hearing loss happened suddenly and is stable or if it’s progressive so saving it on the near term doesn’t affect the long term result).  If it is likely to stay stable, then a hybrid implant could do wonders as they have come such a long way—but that electrode is shorter 20 if I recall correctly off the top of my head). My decision was much simpler because I had no detectable residual hearing. 

3 hours ago, Mary Beth said:

@Rubella

So much changed during the first months for me.  At first the piano notes sounded the same.  Now I can tell when I play a wrong note in a chord while playing a song.  My experience of pitch changed a lot during the first weeks and months.  When I play the piano…. All the way to the deepest piano bass notes…. the notes keep getting lower in pitch.

When I listen to deep contra bass male voices, they sound deep.

A lot changes in the first months.

@Mary Beth, I’m curious to see if you have been able to distinguish between half-steps on the piano or if this is an unattainable goal for me (eg C to C#). I think that I am starting to be able to but it’s hard to tell.  My audiologist said that distinguishing intervals (she said it differently but I can’t remember her wording) can be anywhere from 3 to 11 semitones for some users. I’m really hoping for a single semitones plus or minus less than one. 

Annette

[Mary Beth]

@AnnetteT

Each of our CI journeys have value and are unique.  I love reading about everyone’s journey.  I am enjoying following your journey.

In the app Melodic Contour Identification we can set the semitone difference and then do the exercises at just that semitone difference.  I recommend starting at 6 semitones and moving lower as you meet with success.  Note that I did not start training musical pitch right away.  Music is a gift that unveiled itself over time for me.  A beautiful gift.

I can achieve 100% accuracy at 1 semitone difference.  It is challenging but doable.  I also sometimes err at 1 semitone difference.

It actually depends on the pitches used.  I explain it in a captioned video if you are interested.  Here is the link

 

 

[Rubella]

No worries  -  I can certainly understand the excitement of your new hearing experience, and I love hearing it.  My left and right ear were fairly stable and even for the first  years of wearing HAs.  Sometime about 2 years ago my left ear tanked.  No idea why.  No idea if it will remain stable...generally hearing gets worse with age, so I am working under the assumption it will get worse.   

Once question that begs is if the longer arrays provide better results, why haven't the competitors developed them?

[Juan P]

Greetings! I just got my Sonnet 2 activated on 2-09, I am just getting used to the device.

A quick question.  

My coil sometimes moves or slips when I walk, I am a fast walker and runner and I like to continue doing so. I know that some runners are wearing CIs on the Internet, but no contact information to ask them. My surgeon said that no stronger magnet is available for my coil. Is there a headband that holds the Coil in place? 
All the ones I see advertised online appear to secure the processor but not the Coil.   
Thanks, JP

 

[Mary Beth]

@Juan P

For my Synchrony internal implant, I can place the coil on my head and slowly rotate it to the 10:00 then 2:00 positions to realign the internal magnet.

Check to see that the magnet in your DL-coil is locked into its + or - position and not left unlocked.  The magnets are marked by strengths.

Any headband can be used to hold the DL-coil in place if needed while you run.  Mine stays in place without needing a headband.  It is possible that your retention may improve as your internal swelling subsides.  It is rather common for users to decrease magnet strength after a couple of months as things heal.

[Juan P]

Thanks for taking the time to respon, Mary Beth.

ll think your rotating idea is a great one. It seems to help when I tried just now, I was afraid of twisting the cable. I was told the cable can be damage/not sure.

your information is really helpful. 
you are a true héroe indeed.

best, Juan p

i 

[AnnetteT]

1 hour ago, Mary Beth said:

@AnnetteT

Each of our CI journeys have value and are unique.  I love reading about everyone’s journey.  I am enjoying following your journey.

In the app Melodic Contour Identification we can set the semitone difference and then do the exercises at just that semitone difference.  I recommend starting at 6 semitones and moving lower as you meet with success.  Note that I did not start training musical pitch right away.  Music is a gift that unveiled itself over time for me.  A beautiful gift.

I can achieve 100% accuracy at 1 semitone difference.  It is challenging but doable.  I also sometimes err at 1 semitone difference.

It actually depends on the pitches used.  I explain it in a captioned video if you are interested.  Here is the link

 

 

@Mary Beth, Thank you SOOO much for sharing your journey in this video! I've appreciated everyone on this forum, but especially find your journey inspiring. As an aside, yours is the first video that I've watched in years where I only had very minimal reliance on captions (a huge change from yesterday maybe caused by hours of WordSuccess )! As another side note, I almost started to learn the clarinet when I was a teen, but had to move to piano and accordion because of a dental issue.

I feel much better about my progress (and potential future progress) seeing how much you have accomplished. A lot of your experiences about isolation resonate with me because my mother had the exact same experience before speech to text devices and Zoom/Meet captions made life a bit less isolating (for example, I can communicate with my doctor with a speech app while she and my grandfather before her had to use handwriting--and the level of information shared by people always goes down the higher the level of effort needed to communicate, leading to the isolation). I still experienced some of this, but the pandemic has softened my landing I think as I could comprehend speech in quiet before my company sent me to work from home. Also I'm so lucky to benefit from technology that has improved so much (e.g. dynamic live AI captioning) even in the last two years.

Your ability to mostly reliably distinguish between semitones is really amazing and encouraging (and a testament to your hard work as well, I think). Your ability to discern between the different instruments definitely indicates that you are able to distinguish timbre in ways that some researchers even think is not possible (I've read a couple of research papers on timbre and pitch being the two major challenges to be overcome in future research). I do wonder if tonotopic pitch mapping like what I'm getting might help equalize the "step sizes" between different notes (e.g. your example of C to C# vs G to G#). The brain is so plastic and can make up for errors, but at a certain point is limited by physics. When I stabilize I'll experiment to see if I am encountering this same issue or not. Someone told me that they hope that this type of custom programming (or an improved version) will become standard of care for all implant users.

I too started with every note on the piano sounding the same (the same monotone that every human voice sounded like ), but then I just sat there and pounded out intervals and then major triads and then scales and then chromatic intervals, which I find to be harder (and hopefully with added benefit) than straight scales and is something that I did a lot when taking music theory as we were tested on intervals. I did two hours of this on activation day (with a pattern of C4, C#, C4, D, C4 D#, etc. and similarly descending) and another two hours yesterday (modifying my pattern to try to get both the ascending and descending intervals simultaneously with C4, C#, C5, C4, D, C5, C4, D#, C5, C4, E, C5, etc.) along with hours and hours of listening to a four-song loop. I will start using Meludia soon. I finally started using WordSuccess since I realized that my audiologist will be testing me on speech in a week (I think, or at least mapping) 🙂.

I don't know if it's a good or bad idea to focus this intensely on music during my first week after activation, but since I'm lucky enough to be responding positively, I'll continue to do so. There is some research showing that musical aural rehab helps with speech comprehension as well. 

Thank you again for the video link! I'll try to be patient as I'm likely to plateau a bit after my initial few weeks of leaps and bounds. 

[AnnetteT]

15 minutes ago, Juan P said:

Thanks for taking the time to respon, Mary Beth.

ll think your rotating idea is a great one. It seems to help when I tried just now, I was afraid of twisting the cable. I was told the cable can be damage/not sure.

your information is really helpful. 
you are a true héroe indeed.

best, Juan p

i 

Hi Juan, just to confirm what Mary Beth said, I had the same problem when I was activated 4 days ago. Some small unnoticeable amount of swelling was enough to make it so only the strongest magnet (a 5) would hold at all. However, that bothered my skin so I went back to the default weaker magnet (a 3) and used a headband (just a narrow slightly elastic band that holds the sonnet coil in place nicely). I am waiting for a 4 to be ordered as that will hopefully be the right size. However, I may continue to use a headband when I exercise as it's reassuring to know that it is not going to fall off! I'm very nervous about losing it )

@Mary Beththank you for the 10:00 and 2:00 rotation tip. I've been struggling with sometimes the magnet maybe being out of place with a lot of really loud feedback on my first use of audiostream in the morning. I keep fiddling with it until it goes away, but struggle each morning. I'll try this tomorrow!

[Juan P]

Thanks Annette for sharing your experience. 

I used a regular hat today and I was able to run 2 miles. The coil stayed but it moved slightly. 
’Ill try a headband next.

thanks, jp

[AnnetteT]

1 hour ago, Rubella said:

No worries  -  I can certainly understand the excitement of your new hearing experience, and I love hearing it.  My left and right ear were fairly stable and even for the first  years of wearing HAs.  Sometime about 2 years ago my left ear tanked.  No idea why.  No idea if it will remain stable...generally hearing gets worse with age, so I am working under the assumption it will get worse.   

Once question that begs is if the longer arrays provide better results, why haven't the competitors developed them?

Hi @Rubella, I am sorry that your left ear tanked. While both ears declined together, I've always been asymmetric with Left being worse and the first to dive. I (and my research clinician doctors) don't know for sure what caused my hearing loss. It's likely either genetic or autoimmune, but I have symptoms/test results that don't fully align with either. The only thing that I know that I don't have is Meniere's as my balance was unaffected aside from side effects after the surgery (I didn't get dizzy at all during the vertigo testing).  I think that a lot of us in the hearing loss community are medical mysteries.

I can't give you any advice as this is such a personal decision. Hopefully my story and that of others on this site will at least give you more data points to make an informed decision. One thought that I would maybe research if I were in your shoes is if it's possible to keep natural low hearing in one ear to "blend in" with full CI hearing in another ear. I've read about good results for CIs with people who are SSD and guess that this is part of it.

I am not an expert here, to answer your question about why other companies do not use long arrays, but I would guess that the other two companies are following most of the research--most of which is on how to optimize speech accessibility (in quiet and in noise). I also wonder if maybe many surgeons aren't trained to insert longer arrays as well (but that is pure speculation).

All of the companies are implementing near-miracle-level technology, but each has a different focus for their R&D. I see Cochlear leading the pack with user-friendly devices that can stream to BT without accessories, working with many brands of hearing aids and providing many easy to use accessories. A common statement that I've read from Cochlear users is that they picked their device because it fits their lifestyle and this is important. I know the least about Advanced Bionics, but respect their hardware development/research (as a former Phonak user), their integrated experience with Phonak hearing aids, and rehab exercises like Word Success. I don't think that Advanced Bionics is the best for backwards compatibility though (based only on a few comments from people in a Facebook group that people were not able to upgrade to the latest, but I didn't get the details so more research is needed if this is important).

I get the impression from reviewing Med-EL's professional pages, literature, and sponsored studies, that they really focus on bio/medical engineering and music over the user-friendly tech (don't get me wrong--the tech is fine, but it's not so easy to use that I'd make this a differentiator ). I've noticed that they emphasize making implants safer (e.g. first electrode array to be MRI-safe, making electrodes less likely to fold over during surgery, which is a small, but potentially catastrophic and undetectable without imaging, risk for all implants), making electrode arrays longer for "full tone coverage", making them softer to preserve residual hearing with less trauma on insertion (see last link), pioneering robot surgeries, creating software for audiologists and ENTs that could one day enable custom programming for all Med-EL users to allow for more accurate pitch perception (similar to my study), backwards compatibility (new upgrades work with all implants from the last 24 years). On top of all of this, they have a dedicated musicologist, who is both a musician and user of a Med-EL CI, who is available to talk to candidates and patients, while also doing research studies and advising engineering (Johanna recently completed a study on using Meludia to help implant users to appreciate music). I know that the other companies also do a lot of very important research, but I get the impression that Med-EL is ahead of the curve with music and electrode arrays. I don't mind fiddling with Bluetooth and other accessories if I can hear those low notes (accessories will get better with time, but electrodes are forever--ideally). 

As an interesting note, I was told that too deep of an insertion is actually not beneficial (the longest Med-EL array is around 31mm). There is a "sweet spot" that surgeons aim for. I just found this research paper, where the last sentence notes that a 28mm array may be that optimal length for most patients (I don't claim to understand all of this paper, but that line is very clear and I'm happy to read it since I have the 28mm array ).

I highly recommend looking at the Med-EL Pro pages (which are more comprehensible than that paper) as they get into some of the justifications on why they've made some of their engineering decisions. Also external studies at universities showed that their programming strategies (fine structure coding) helps with musical comprehension (mentioned in a YouTube link below--the SSD studies where the participants compared sound from their CI ear to their natural hearing ear are so fascinating). Additionally, I'm impressed that universities like UCSF, UNC, and others are doing music appreciation research on Med-EL implants. 

None of this is to say that the other companies are bad or anything less than excellent--but slightly different philosophies and research directions lead to different results optimizing for different things. 

Some links:
https://www.medel.pro/products/electrode-arrays
https://blog.medel.pro/flex-cochlear-implant-electrode-arrays/
https://www.medel.pro/products/electrode-arrays#section0
https://blog.medel.pro/reducing-electrode-array-deviation/
https://www.youtube.com/channel/UCKeXj4XUAG4QgszCH9m874g/videos

[Mary Beth]

An important thing to remember about electrode arrays is that longest does not equate to best.  Each cochlea is different and that includes the length available to insert an electrode array.

It is important that the best match between cochlea and electrode array is made so that the array covers the targeted range of the cochlea.

Med-El includes choosing the best electrode array to match each cochlea in their anatomy based fitting.  There are HP members here who have also experienced Med-El’s already available   frequency to place fitting through the OTOPLAN software.

The 10:00 to 2:00 rotation of just the DL-coil (so no pressure on the cable) is a Med-El recommendation.

[AlanJ]

On 2/22/2022 at 7:57 AM, Mary Beth said:

An important thing to remember about electrode arrays is that longest does not equate to best.  Each cochlea is different and that includes the length available to insert an electrode array.

It is important that the best match between cochlea and electrode array is made so that the array covers the targeted range of the cochlea.

Med-El includes choosing the best electrode array to match each cochlea in their anatomy based fitting.  There are HP members here who have also experienced Med-El’s already available   frequency to place fitting through the OTOPLAN software.

The 10:00 to 2:00 rotation of just the DL-coil (so no pressure on the cable) is a Med-El recommendation.

@Mary Beth  I`ve been reading a lot about Otoplan. Is there a way to find out which surgeons use this program?

[Mary Beth]

@AlanJ

Contact Med-El directly and they may be able to help you.

[Mary Beth]

@AlanJ

Have you seen this?

 

[AlanJ]

@Mary Beth I have not seen that one yet.. Thank You..

[AnnetteT]

On 2/22/2022 at 4:57 AM, Mary Beth said:

An important thing to remember about electrode arrays is that longest does not equate to best.  Each cochlea is different and that includes the length available to insert an electrode array.

It is important that the best match between cochlea and electrode array is made so that the array covers the targeted range of the cochlea.

Med-El includes choosing the best electrode array to match each cochlea in their anatomy based fitting.  There are HP members here who have also experienced Med-El’s already available   frequency to place fitting through the OTOPLAN software.

The 10:00 to 2:00 rotation of just the DL-coil (so no pressure on the cable) is a Med-El recommendation.

@Mary Beth, my research audiologist an surgeon shared the same information with me about the electrode length as research shows that the length is critical, but that it can be too long as well as too short for your individual anatomy. Thanks for sharing this Med-EL video and information about Med-EL's OTOPLAN anatomy-based fitting. I had seen this referenced in other Med-EL videos, but in less detail 🙂. I really appreciate Med-EL's emphasis on this in their internal research. Their specific research focus areas (and that of external research using their devices) were major factors in my decision to choose Med-EL over the other brands.