New recipient

[AnnetteT]

I'm a new recipient awaiting activation. Thanks to this group and @Mary Beth in particular for helping to make this journey less intimidating.

[Mary Beth]

@AnnetteT

Congratulations and thank you for your kind words.  I am in northern New York and go to NYC for my CI center (New York Eye & Ear).  Which CI center are you going to?

We have a monthly GoogleMeet video chat with automatic captions.  You are welcome to join in.  We are a very friendly, helpful group.  Welcome.

Follow this link if you are interested in the March GoogleMeet.

 

[AnnetteT]

@Mary Beth,

Thank you for the welcome. I go to UCSF in San Francisco (and will be participating in a custom mapping study for a year). I'd enjoy joining the Google Meet, but am not enough of a morning person to join at 6am my time :). I love the group so far and have been learning a lot from the different posts.

[Mary Beth]

@AnnetteT

Dr Charles Limb’s study?  We have other members here in those studies as well.  Terrific!!

[AnnetteT]

@Mary Beth, yes, I'm in Dr. Limb's study. Incidentally, I am really fortunate that he is my surgeon as well. I'm very impressed with both his surgical and research work (especially around music appreciation with CIs) :).  It's great to know that other HP members are also in the study. I'm planning to listen to Dr. Limb's TED talks as part of my aural rehab after activation.

[Mary Beth]

@AnnetteT

I heard Dr Limb present on his research at the 3rd International Music & CI Symposium a few months ago.  Very interesting stuff.  I hope you post about your journey here so we can follow it.

[AnnetteT]

@Mary Beth, thanks for the reference to the Symposium. I'll keep an eye out next year. I was hoping that recordings from this year's talks might be available online, but did not find any. I'm looking forward to participating in the study and hopefully helping to move science forward in my own small way.

[Mary Beth]

@AnnetteT

The music and CI symposium is held every other year.  It moves from country to country.  I believe 2023 will be in the US.  
 

The presentations were only available online to those who registered for the conference but a journal issue is in the works devoted to that conference.  I’ll keep you posted on that.

 

[AnnetteT]

@Mary Beth, thank you! I would enjoy reading the journal when it comes out if it's widely available.

[Jason77]

Welcome @AnnetteT. Interested in how you do with your custom mapping. Seems like a great concept. I was activated January 25 and am very happy so far. Wishing you the best with your activation.

[Dianna]

Hi annette, welcome to the group! I am activated since sept 10, just had a six month map. I have had 3 mappings, each one a little louder. This last mapping was also done with our medel clinic advisor. I have currently 4 maps with varying percentages of AI.

I too am in a research program. When i go for mapping, i have all day appoints with different lab folks. This last one was soooo many tests, lol, ill have to use an adding machine to total up tests in soundbooths, then an eeg lab with a holey cap and electrodes!!! Top it off with a packet for home completion.!!!

But im done for six months. I can request an appointment if i need changes but it would be a audi visit only.

I am implanted left side using sonnet 2 eas. I am stalling on getting a hearing aid on the right so i can work on the left ear alone. But i use a loaner in lab tests and it feels so good to hear everything, and i want to hear music better.

Well, welcome aboard and good luck on your activation!!!!!!! I am excited for you

[AnnetteT]

hi @Jason77 and @Dianna, Thank you for the welcome! I'll try to come back with reports as I go forward. This study is interesting because it involves a full year of using the custom mapping from initial activation vs some studies that worked with people who had already been activated and/or only went for weeks vs a year. In a year, I'll be spending a month on a standard mapping, so will be able to share how that feels.

On 2/14/2022 at 6:32 PM, Jason77 said:

Welcome @AnnetteT. Interested in how you do with your custom mapping. Seems like a great concept. I was activated January 25 and am very happy so far. Wishing you the best with your activation.

I'm so glad that your activation went well for you and that you're doing great even after only a short time. I am excited about custom mappings, because it makes sense that no two people would have the same inner ear structures and measurements. I'm hoping that customization will become the new normal for everyone at some point.

3 hours ago, Dianna said:

Hi annette, welcome to the group! I am activated since sept 10, just had a six month map. I have had 3 mappings, each one a little louder. This last mapping was also done with our medel clinic advisor. I have currently 4 maps with varying percentages of AI.

I too am in a research program. When i go for mapping, i have all day appoints with different lab folks. This last one was soooo many tests, lol, ill have to use an adding machine to total up tests in soundbooths, then an eeg lab with a holey cap and electrodes!!! Top it off with a packet for home completion.!!!

But im done for six months. I can request an appointment if i need changes but it would be a audi visit only.

I am implanted left side using sonnet 2 eas. I am stalling on getting a hearing aid on the right so i can work on the left ear alone. But i use a loaner in lab tests and it feels so good to hear everything, and i want to hear music better.

Well, welcome aboard and good luck on your activation!!!!!!! I am excited for you

This sounds like a really interesting study as well! I don't think that my study involves electrodes , but I did have a special CT scan where breathing and swallowing risked blurring the picture and I will be having days of tests coming up.   

My hearing loss journey is following the pattern of multiple family members (perfectly normal until late 30s and then a few years of decline until gone). I'm also implanted on the left side, as I have a tiny bit of residual hearing on my right and can hear the garbage disposal and slamming doors. I gave away my hearing aids as they never really helped me (I might have waited too long to get them because I had an inverted U hearing loss pattern where spoken voice frequencies lasted the longest). I also have dehiscence where hearing aid configurations that would have been loud enough to help made me nauseous (how fair is it to be both deaf and sensitive to loud noises ?). I finally stopped procrastinating on the implant surgery when my right ear decided to quit. I'm hoping to get the right side implanted as soon as I stabilize with the left.

How do you like the EAS? I have a friend who might benefit as, unlike me of the inverted U audiogram  , he still has low frequencies  . 

[Dianna]

Hi annette, i love the eas. I wear it from wake to sleep. I believe its the reason the voices became clear so fast. My roommates voices became recognisable within weeks. I cant testify to music being great yet but im rehabbing for that. For folks who have some residual hearing it really works well.

[Jason77]

8 hours ago, AnnetteT said:

hi @Jason77 and @Dianna, Thank you for the welcome! I'll try to come back with reports as I go forward. This study is interesting because it involves a full year of using the custom mapping from initial activation vs some studies that worked with people who had already been activated and/or only went for weeks vs a year. In a year, I'll be spending a month on a standard mapping, so will be able to share how that feels.

I'm so glad that your activation went well for you and that you're doing great even after only a short time. I am excited about custom mappings, because it makes sense that no two people would have the same inner ear structures and measurements. I'm hoping that customization will become the new normal for everyone at some point.

This sounds like a really interesting study as well! I don't think that my study involves electrodes , but I did have a special CT scan where breathing and swallowing risked blurring the picture and I will be having days of tests coming up.   

My hearing loss journey is following the pattern of multiple family members (perfectly normal until late 30s and then a few years of decline until gone). I'm also implanted on the left side, as I have a tiny bit of residual hearing on my right and can hear the garbage disposal and slamming doors. I gave away my hearing aids as they never really helped me (I might have waited too long to get them because I had an inverted U hearing loss pattern where spoken voice frequencies lasted the longest). I also have dehiscence where hearing aid configurations that would have been loud enough to help made me nauseous (how fair is it to be both deaf and sensitive to loud noises ?). I finally stopped procrastinating on the implant surgery when my right ear decided to quit. I'm hoping to get the right side implanted as soon as I stabilize with the left.

How do you like the EAS? I have a friend who might benefit as, unlike me of the inverted U audiogram  , he still has low frequencies  . 

We are U or cookie bite buddies. I have that same hearing loss pattern so I understand what you have gone through. This implant has been incredible so far. I’m 3 weeks in so its only going to get better. 

[Dianna]

Hi jason, welcome!

I was hard of hearing after having a severe case of measles. Im 65 now so went to school in the 60s and 70s when a hearing bus would come and test our hearing every year. I always had less than normal, notes written to my parents yearly. One year it was so bad on one side the school nurse called my parents alarmed. So i was taken to a ENT immediately, 8 yrs old i was scared shen the dr comes in with these long tweezers and put them in my ear and pulled out a wax encrusted cotton ball! I had begged to go swimming with an ear infection and to shut me up my babysitter/older sister put cotton in ears and we must have left some in the summer prior! Lmao! So anyway i guess my hearing loss went back to moderate, but continued until i finally got my first pair of ha in my 20s. Second pair late 30s, third pair after 50. I struggled. I tried some crappy online cheapies to be able to work until retiring in 2020. I did research on ci for a long time, then just followed a marketing ad and hauled myself to university of iowa to get tested. I had no referrals but the cochlear america rep i had made connections so i got an appointment for testing in april 2021, was on the fence at 50 percent hearing, and the rest is history...

Surg august, activation september 10th (65th birthday) and i am happy as a can be with so much less whats, please repeats and not hearing tv along with teasings and impatient folks!!! I feel its a blessing.

Its not plug and play, it takes work to get the brain going again but its still a blessing!

This is a great group and knowledgable, kinda like a family.

Welcome!

 

[Jason77]

@Dianna it took me a while to wrap my head around getting an implant but so glad I did. It’s already amazing. I had ZERO word recognition in my implanted ear. 3 weeks in and I already converse with masks on. 

[Rubella]

Wow Jason77, great news.  I'm still awaiting an evaluation for my left hear on March 2 to see if I qualify with my ski slope.  I have normal hearing in the lowest frequencies.  I am getting pretty confused on the EAS - my ENT called tonight to say that she spoke with one of the surgeons at Vanderbilt, where I will likely go, and he was not too keen on the hybrids.  I have no idea what brand, or array, or anything else, so it is out of context.  I will clarify that my ENT was not familiar with the availability of "hybrid" or EAS options that can utilize preserved residual hearing, so I don't know what she asked or how she asked it.  

[Dianna]

Hi jason, welcome!

I was hard of hearing after having a severe case of measles. Im 65 now so went to school in the 60s and 70s when a hearing bus would come and test our hearing every year. I always had less than normal, notes written to my parents yearly. One year it was so bad on one side the school nurse called my parents alarmed. So i was taken to a ENT immediately, 8 yrs old i was scared shen the dr comes in with these long tweezers and put them in my ear and pulled out a wax encrusted cotton ball! I had begged to go swimming with an ear infection and to shut me up my babysitter/older sister put cotton in ears and we must have left some in the summer prior! Lmao! So anyway i guess my hearing loss went back to moderate, but continued until i finally got my first pair of ha in my 20s. Second pair late 30s, third pair after 50. I struggled. I tried some crappy online cheapies to be able to work until retiring in 2020. I did research on ci for a long time, then just followed a marketing ad and hauled myself to university of iowa to get tested. I had no referrals but the cochlear america rep i had made connections so i got an appointment for testing in april 2021, was on the fence at 50 percent hearing, and the rest is history...

Surg august, activation september 10th (65th birthday) and i am happy as a can be with so much less whats, please repeats and not hearing tv along with teasings and impatient folks!!! I feel its a blessing.

Its not plug and play, it takes work to get the brain going again but its still a blessing!

This is a great group and knowledgable, kinda like a family.

Welcome!

 

[Dianna]

14 hours ago, Rubella said:

Wow Jason77, great news.  I'm still awaiting an evaluation for my left hear on March 2 to see if I qualify with my ski slope.  I have normal hearing in the lowest frequencies.  I am getting pretty confused on the EAS - my ENT called tonight to say that she spoke with one of the surgeons at Vanderbilt, where I will likely go, and he was not too keen on the hybrids.  I have no idea what brand, or array, or anything else, so it is out of context.  I will clarify that my ENT was not familiar with the availability of "hybrid" or EAS options that can utilize preserved residual hearing, so I don't know what she asked or how she asked it.  

Hi rubella, medel sonnet 2 processor can be non hybrid. The flex 24 is also medel product.  So i guess your only question at this point would be "what brand of product" do you plan on using on me?

[Rubella]

Thanks Dianna.  I am between Med El with the longer array and Advanced Bionics.  Each has their advantages.  The active electrode length of the Med El Flex 24 is 20.9 mm which is the similar to the Advanced Bionics Slim J at 20 mm.  AB has seamless streaming and hands free talking to my phone without an intermediary device.  This appeals to me because I have it now with my HAs.  And they partnered with Phonak to create a compatible hearing aid for my other ear and offer an acoustic ear hook that coordinates with the CI.  Both seem to do music well. We shall see what the surgeon says if I get that far.

[AnnetteT]

On 2/14/2022 at 6:32 PM, Jason77 said:

Welcome @AnnetteT. Interested in how you do with your custom mapping. Seems like a great concept. I was activated January 25 and am very happy so far. Wishing you the best with your activation.

Thanks, @Jason! I'm so glad that you're having a good experience! My activation was yesterday, and I'm already hearing simple speech (after several hours of static accompanied by a monotone). This is exciting since my "good" ear just tested at profound in almost all frequencies (and will hopefully get implanted in a few months). It's really wonderful being able to connect with others facing similar challenges here on this forum, as I live and work in a hearing world.

On 2/15/2022 at 9:10 PM, Dianna said:

Hi annette, i love the eas. I wear it from wake to sleep. I believe its the reason the voices became clear so fast. My roommates voices became recognisable within weeks. I cant testify to music being great yet but im rehabbing for that. For folks who have some residual hearing it really works well.

@Dianna, The EAS sounds wonderful for anyone with residual hearing in the low tones! Unfortunately I lost low tones before I lost speech tones (I kept the 2000-4000 frequencies at moderate loss for a couple of years, which was nice while it lasted). I will share this information with a friend with ski slope loss, as it is nice to know someone who has used it vs. just relying on marketing materials.

@Rubella, welcome! and good luck with your surgery when it is time! Even one day after activation, I think that the experience was worthwhile. I'll admit that activation was a bit of a let-down (this ear was at 40% in mid-2019 and gone in 2020 so I can't expect instant success), but I spent half of my first day doing listening exercises and 3 hours in I started hearing words. I'm hearing the clicking of my keyboard for the first time in several years and can have basic conversations (with short words and some repetition) like I haven't in 2 years.   You can't go wrong with any brand and it is great how AB integrates with Phonak and makes streaming seamless, but I love the low tones that I'm getting from the long electrode, which are especially critical for making music sound natural (I actually gave away my Phonaks because I didn't have enough hearing to use them so didn't have to worry about the challenges of bimodal integration). I'm also participating in a study at UCSF for new Med-EL recipients where they gave me a custom mapping to help the pitch (tone placement) to be closer to accurate (one of the underlying issues that makes music sound "off" to many implant users). I can't wait to see if it will make music more accessible (which is my biggest issue with hearing loss as a former musician).

[Rubella]

6 hours ago, AnnetteT said:

@Rubella, welcome! and good luck with your surgery when it is time! Even one day after activation, I think that the experience was worthwhile. I'll admit that activation was a bit of a let-down (this ear was at 40% in mid-2019 and gone in 2020 so I can't expect instant success), but I spent half of my first day doing listening exercises and 3 hours in I started hearing words. I'm hearing the clicking of my keyboard for the first time in several years and can have basic conversations (with short words and some repetition) like I haven't in 2 years.   You can't go wrong with any brand and it is great how AB integrates with Phonak and makes streaming seamless, but I love the low tones that I'm getting from the long electrode, which are especially critical for making music sound natural (I actually gave away my Phonaks because I didn't have enough hearing to use them so didn't have to worry about the challenges of bimodal integration). I'm also participating in a study at UCSF for new Med-EL recipients where they gave me a custom mapping to help the pitch (tone placement) to be closer to accurate (one of the underlying issues that makes music sound "off" to many implant users). I can't wait to see if it will make music more accessible (which is my biggest issue with hearing loss as a former musician).

 

@AnnetteT Sounds like you are off to a terrific start.  What array did they use for you?  I agree that the longer array's sound like a better option and that is what attracts me. However, I am told that due to some discomfort or feedback many have to turn off the lower frequency electrodes via mapping to improve user experience.  Music is quite important to me too - my son is an operatic tenor and it would be difficult if his or any music sounded unpleasant.  

[Jason77]

@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! 

 

@Rubella My wife is a classically trained Soprano. She currently does a lot of musical theater and I can’t wait to get to the point where I can enjoy a show and its not a 2 plus hour nap. Tuesday will be 4 weeks since my activation. There is some music that sounds decent already and some that is a traffic jam. It continues to get better. Music can take a long time. 

[Dianna]

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...

[AnnetteT]

13 hours ago, Rubella said:

@AnnetteT Sounds like you are off to a terrific start.  What array did they use for you?  I agree that the longer array's sound like a better option and that is what attracts me. However, I am told that due to some discomfort or feedback many have to turn off the lower frequency electrodes via mapping to improve user experience.  Music is quite important to me too - my son is an operatic tenor and it would be difficult if his or any music sounded unpleasant.  

@Rubella, Please forgive my long post because I'm just so happy as my CI hearing improves. I can only tell my story and can't make any recommendations. but here it is: 🙂

I have the Mi1250 Synchrony 2 Flex 28. I am very grateful that I was implanted by a surgeon who is not only a very experienced surgeon, but also a musician and a researcher (Dr. Charles Limb at UCSF and formerly Hopkins and Peabody). I very highly recommend this TED Talk that he gave ten years or so ago. It talks about the limitations of cochlear implants for representing music and research that he and others are doing to improve this (though obviously a lot has happened in the last ten years and my own experiences are better than some that he described). After my activation, I did not have any electrodes turned off and have had zero discomfort or feedback even when I turn up the volume. I wonder if the issues that you mention are more common for surgeons who are not experienced with implanting longer arrays or if my anatomy just happens to be luckily compatible. It might have helped that I had near-zero residual hearing to preserve so he was able to do a full insertion without having to worry about preserving natural low tones (he specifically asked me about residual hearing before and after the surgery--I had none both before and after 🤷‍♀️). Given all of this, I respected that Dr. Limb and his team at UCSF selected Med-EL for the current study to investigate image-guided place pitch mapping to help improve music appreciation. I am so glad that I made the decision to have the long array and to participate in this study, because I started hearing low tones very quickly (within an hour, though far from accurately pitched). Instead of hearing Alvin and the Chipmunks on activation like I read about in forums where people had shorter electrodes, I started off hearing Arnold in The Terminator (low-pitched almost robotic near-monotone if you have not heard that movie). Keep in mind that no two people have the same experience and I've done a LOT of place/pitch rehab since my activation 3 days ago and have a musical background (I had a semi-operatic mezzo soprano voice and studied voice and piano in college with a music minor and used to do a lot of chromatic intervals and scales for fun , which gave me a nice foundation for doing pitch exercises now--I also meditate and internally remember each interval to ensure that I don't re-learn the distorted versions). That being said, a lot of people don't gain access to music at all or for over a year so I feel lucky. I'm especially enjoying Disturbed's cover of Sound of Silence--not operatic, but an expressive piece of music with high and low pitches across a broad range of textures with great dynamic range. I am hearing melodies with rich bass tones (albeit distorted) and lyrics (not all of them) from a familiar song, but most encouragingly I'm also picking up emotional signals that I never expected to hear again--and only two days after my activation day. I am still failing horribly on precise pitch perception exercises, but apparently they are helping as pitch keeps getting better (just not good). Sopranos still sound like distorted fuzzy noise, so I'm focusing more on high pitches now (I lost my high frequencies in this ear longer ago so need more rehab I think). This is in such contrast to last year when I took advantage of a slight rebound in my "good" ear's hearing as I listened through tears to the distorted sounds thinking that it might be my last time that I might enjoy any song. I'm not ready for that song yet (Brandi Carlile's The Story), but am looking forward to the future with that song and my all-time favorite operatic mezzo, Joyce DiDonato.

My philosophy on selecting the long electrode was that future research (and in my case ongoing research) may improve mappings to minimize pitch discrepancies of physically accessible tones/frequencies and tech will continue to improve to make the devices easier to use (I'll admit to struggling a bit with the tech from my Med-EL kit). The one thing that won't change is the length of the electrode and its reach into the portions of the cochlea that pick up low notes. When an electrode runs out of range, figuratively speaking, the implant has to play back the same tone octave(s) higher in pitch, which can be disconcerting. I did have to roll the dice as I couldn't predict if the longer electrode would work for me without turning off the sensors, but it went from a 0% chance with short electrodes to a reasonable chance if the stars aligned.

It's wonderful that your son is an opera singer! I LOVE opera, especially bel canto. One of my best musical moments ever was at the Met in New York in 2014 when then-less-well-known Javier Camarena, a tenor filling in for Juan Diego Florez, was given an encore in Rossini's La Cenerentola. I was there to hear Joyce DiDonato, but so enjoyed Javier's showing us the beauty of an operatic tenor! Yesterday, I wasn't sure that I would enjoy opera ever again, but given the great improvement that I've had with a few songs in the last few days, I'm allowing myself to be slightly hopeful. Again, the songs sound distorted, but I'm getting the emotional impact from them and have hope that my rehab exercises will improve the pitch and clarity. Also I'm kind of music-starved having not been able to enjoy it for a long time.

All of my discussion should have the caveat that I'm in a research study using custom mappings/programming based on high-resolution images of my cochlea (though the study might still be recruiting) and I've been basically only doing music rehab since activation. Less than an hour after activation, I started hearing bass notes (even my own and other female voices sounded like Arnold in the Terminator), but this was instead of the high-pitched Alvin and the Chipmunks that I'd been reading about from people who had shorter arrays. Over time (and with hours spent playing scales and intervals on an electric piano with different voices and hours listening to single songs on repeat), I've added more tones and am up to two songs that are enjoyable (also the remix of Old Town Road with Billy Ray Cyrus and Lil Nas X, which is helping me to hear multiple voices playing off of each other along with the accompaniment--multiple musical layers are notoriously difficult for implant users).

I don't know your exact situation, but can encourage you that CIs are wonderful for speech. Even with the best of research, music is going to be a long road that can sometimes be shortened with rehab and mapping adjustments. Hopefully custom mappings/programming will become the standard of care at some point so everyone can have improved pitch. I love that universities and companies are now starting to focus on improving music. I did really appreciate that Johanna, the musicologist at Med-EL, took the time to talk to me for an hour about how music rehab can help improve outcomes (she is also a musician and also has a cochlear implant). I think that she is willing to talk to candidates as well. 

I wish you the very best on your journey no matter what you decide! ❤️