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Showing content with the highest reputation since 06/07/2020 in all areas

  1. 4 points
    Renachelw

    I am so scared please help.

    Hi Everyone, I'm back here I'm not sure where I've left off here, but I got implanted 2 years ago on my right side and it is awesome. I got implanted with Cochlear and not Medel tho, so I can't really speak about my experience with Medel. Anyway it's really good. Much better than any hearing aid I ever used. I am hearing very well, almost normally. Would say above 90% for speech. Sometimes I can even hear lyrics to songs I listen for the first time, and also TV shows without closed captioning. Cinemas are still a little difficult tho. Maybe it's the surrounding. As for whether I could hear instantly after switch on, at first everyone sounded squeaky and there were alien sounds. But I rmb trying not to look at my audiologist and could make out few words back then on the same day. After a few hours, I could recognise more words. It's not the same for everyone tho. Have been told mine was rly fast. Maybe it's because I'm young too? 😅 Was hearing and understanding speech within the week or so. But of course, in early days, there were still problems like differentiating male and female voices over audio. Its much better now but certain high pitch singers can still get me confused at times. Another problem was kids. Kids are still a little difficult to hear, but have been told by hearing people that sometimes it's that way for them as well. They can't really hear kids and mostly just guess what they're saying? 🤷🏻‍♀️ Then there's also the difficulty in using landline phones. It's a lot harder than using handphones for calls. Although I can stream calls from my mobile to my CI with a streamer, I still use a flathead earpiece to stick onto my processor (mines single unit, smth like the Rondo.) I can also hear quite well if I hold the phone to my processor like normal. Just that accuracy is not 100% and if the background is noisy it's still very difficult. Anyway, before panicking, best to check with your doctor if you're a candidate for CIs first. Some people might not even be able to do the CI depending on the scans/condition. Best to check to avoid any potential disappointment. Overall, I have no regrets doing the CI and it has made my life a lot better. Dating is now possible too 😅 All the best, I hope this works out for you too
  2. 3 points
    It is free but we need to register. It will be captioned. I registered. Here is the info: You are invited to a virtual HEARPEERS meeting. During this hour long webinar our MEDEL experts will be discussing listening practice and strategies to help during this time of facial coverings and masks. Many cochlear implant recipients rely on lip reading to help them understand speech and therefore may feel discouraged with their speech understanding during this time. However, there are programs and strategies that you can use to help you and I hope you are able to attend the virtual meeting. Two dates are provided for your convenience, please note that the same topic will be discussed on each day, so you will only need to register once. Upon registration, you will receive a separate email that will give you details about how to log on to the meeting. If you happen to fall in the waitlist for a meeting time, you will receive an email from our events team once space has opened up to register you for the event. You can register by clicking the link below. July 8th – HearPeers Virtual Meet Up 5pm CST, 6pm EST July 9th – HearPeers Virtual Meet Up 6pm PST, 7pm MST
  3. 3 points
    I am SO excited to meet all of your amazing people!
  4. 3 points
    Somewhat similar to this. I have a coworker that I work closely with. I tend to try to start conversations, when we're in our respective offices, with skype. You know, I type, he types. But Brian is a slow typist and he doesn't really like it. Yesterday he called my office phone, and I knew it was him because we have caller ID. So I answered and said, Brian, you KNOW I'm not that comfortable on the phone! I never know if I will hear. His response? You CAN hear. I mean, sometimes he's wrong, but you know, mostly he's right.
  5. 3 points
    Mary Beth

    July HearPeers Virtual Coffee Chat

    UPDATED Date for July!!!!!! Sunday July 5 !!!!!!!! 9:30 New York time We welcome more HP members! Anyone else want to join in? @Mary Beth YES @Jewel YES @Dave in Pittsburgh YES @Kirk S. YES @Tracey_66 YES @Kylie YES @Mary Featherston YES @Valentin YES @Joan YES @Nikki YES @Megan L. YES @Watersail MAYBE @phobos512 YES Google Meet is a free app. Download it. If you already have a Google account it may already be listed in your extras. There is either (depending on device used) a CC button to select or 3 dots (...) that when you select the dots you will see the option to turn on captions. About a week before the virtual chat, I will send out a group HP mail. You can see the mail at the top of HP under the envelope icon. Looking forward to the July chat! Stay well everyone.
  6. 3 points
    @Jewel @Mary Beth Was reading this thread and I pretty much meet the conditions in my left ear for what you were discussing ("...born with normal hearing, then hearing loss in teens or early adulthood, then profoundly deaf for 40 years, then CI") . So I figure I'll share my experience... The only thing I'm uncertain about is whether I was born deaf in my left ear or whether it progressed rapidly during early childhood (my parents have said there was no mention of hearing problems at my birth). However, I do know with certainty that I was already profoundly deaf in that ear by early elementary school (normal hearing in my right ear though) and I have auditory tests from as early as 9yrs old to attest to that. As such, I never wore an HA in that left ear (it wouldn't have helped), and it's been just shy of 40yrs before I got a CI in that left ear. So fast forward now and it's been about 10mos since my activation and my ability to distinguish sound with my left implanted ear is now fantastic. I can hear birds (different trills, pigeon mating calls, etc), cars, the creaking of wood panels on staircases or floors, water dripping, etc. I can listen to music that I've previously heard and hear both the lyrics and instrumentals quite well, certainly to the extent that I can enjoy it in that ear alone (streaming). Newer (unknown) music still presents a challenge though. Now...pure speech comprehension is another thing. With context/visuals/lipreading I can get by doing basic things and conversations with my left (40yrs deaf) ear alone. But I cannot talk on the phone with that ear and when someone covers their mouth (like with a face mask) it's very difficult for me understand anything at all. My masked word comprehension and sentence recognition would reflect this reality, still being very low-to-nonexistent scores. The reality is that words still sound a little bit too similar (dull?) to one another ... it's not easy for me to distinguish monosyllabic words, for example, and speech can be too 'fast' for that ear. But the ability is by no means completely absent. I can listen to Audible books and "hear" the sentences and find my place in the text (though it's not always the easiest thing). Podcasts similarly, I get words here and there and some sentences, I know who is talking (male/female etc), but it's not yet clear what they are saying at all times. All that said, this is leaps and bounds beyond what this ear has ever been able to do, and I think with time it will continue to improve in terms of comprehension. But do I think it will ever be anything like my right ear in terms of capabilities? Likely NOT. About 40yrs of not hearing and possibly little linguistic development on that side (though excellent linguistic development on the right ear) probably has left the pathways there a little rough for the taking and I'm not entirely sure the grooves will ever fill out properly. But I'm hopeful and I've seen fantastic progress in this ear in only 10 months already. To wrap up this long story, if anyone profoundly deaf asked me whether they should consider a CI given long-lead times of deafness I would without hesitation say they that they should jump at the opportunity. Merely getting sound recognition capabilities alone is itself a huge improvement. But those individuals should also have realistic expectations, particularly if their deafness preceded linguistic development, even if only on one side. Complete language rehabilitation might possibly be out of reach, physically speaking, though by no means appears to me to be a certainty or guaranteed insurmountable obstacle, in my humble opinion. So I hope these thoughts help some folks.
  7. 3 points
    Jewel

    June HearPeers Virtual Coffee Chat

    @Tracey_66 Sorry you missed out on this time. We may be deaf but we are all chatterboxes! 😂😂😂😂 Next time you will see.
  8. 2 points
    Nope I had mine. Enjoy the heat
  9. 2 points
    I should point out, though, given the name of the chat, that I was the ONLY ONE drinking coffee. 🙂
  10. 2 points
    Thank You Mary Beth for arranging the coffee chat very informative and interesting it really give the CI recipients a chance for questions and answers
  11. 2 points
    @Mary Beththank you so much. It was wonderful speaking and meeting everyone. How fortunate I am to Medel for picking me for their research programme or I would still be in a waiting list. It is just recently the government is realizing how important it is for seniors to hear to avoid isolation and early dementia. We still have a long way to go. But what resources we have have on hand once accepted are truly unbelievable and exceptional. It is just recently Medel is recognizing Canadians and we will have a Canadian webnair this week. So excited
  12. 2 points
    Nikki

    July HearPeers Virtual Coffee Chat

    It was so nice seeing everyone today. I've learned several new things but above all i'm overjoyed by the positive impact those devices have on so many wonderful people's lives. Thank you MedEl and a special goes to MB and @Kylie for set up. Thanks for inviting me. Have a wonderful Sunday/ happy monday in other parts of the world 😊
  13. 2 points
    Kirk S.

    Very interesting read

    Hi Mary Beth. Thanks for this. Yeah, I sorta thought that programming was a lot more systematic than seems to be the case. “Guess-and-check approach based on subjective patient feedback”!??? Yikes. “Guess” is not a word that you want to hear (no pun intended) when you are talking about medical care. Well, good luck to the Vanderbilt team... By the way, I took your advice and asked to see a different team of audiologists here in Tokyo. The new team seemed to think my most recent mapping was a disaster, so they recommended that we start over from the beginning and re-set everything to basic “activation” levels. So that’s where I’m at now. I’m supposed to go back next week and do a little fine-tuning. I don’t suppose the new Vanderbilt study will be done by then, so I guess we’ll use the ”guess and check approach”! Look forward to seeing you and the gang on Sunday. Best, Kirk
  14. 2 points
    I’m registered for the 8th! 😁 are you attending @Mary Beth?
  15. 2 points
    This is great. I'm registered for the 9th. Thanks @Mary Beth.
  16. 2 points
    Registered for the 8th, thanks! Hopefully I'm back from my pre-op by then (should be).
  17. 2 points
    Like @Jewel, I do not miss my hearing aid at all!
  18. 2 points
    @phobos512 If you're like me you won't miss your HAs. Wishing you well with surgery next week.
  19. 2 points
    https://blog.medel.com/rehab-for-adults-new-resources-available/ @MED-EL Moderator Thank you!
  20. 2 points
    JosephG

    Audiogram / SSD child

    @Julie72 First, I would like to say that you’re doing a fantastic job for your daughter! I wish that when I was at that age that my parents would have put in the same level of effort and care with my SSD. So with that said, here’s a little background on myself as I was in a very similar situation as your daughter. I was single-sided deaf (left ear) with normal hearing in my right ear (though even at that age, at the highest 6-8k Hz frequencies I was still at a mild loss in that right ‘normal’ ear; 100% speech discrimination though). That was about 40yrs ago, so given how poor my left ear was we just did nothing with it (CI’s weren’t as readily adopted then). I went thru my entire secondary education (not to mention college and the beginning decades of a professional career) on one ear alone, and to be honest, quite successfully at that. I bring this up NOT to talk about myself, but to hopefully let you know that you are not alone in this kind of situation and that simply by aiding her deaf ear (to any extent) that it’s likely going to do wonders given her other normal ear. She’s young and with another good ear her brain (and neural plasticity) is very likely to synthesize the sounds and information she hears quite well. And if it’s possible for someone like me to be successful with one ear alone, imagine the possibilities with a little help to make it binaural, even if it’s not absolutely perfect on that side. So keep up the good work and definitely continue monitoring her hearing diligently as she progresses, but at the same time try not to give yourself too hard of a time with the variance (that is bound to happen) and/or stress yourself out too much with some of the weaknesses on that side. And feel free to reach out to me if you have any other questions about my experience and I’ll try my best to lend a helping hand.
  21. 2 points
    Lori Martin

    My new sonnett 2

    Thank you @Mary BethBethBethBethBetBBethBetBeBethBetBethBethBethBethBetBB I do have the choice! So far I do like sonnet 2. And how it feels.
  22. 2 points
    Mary Beth

    5 years and still WOW moments!

    Today I started listening to a new audiobook. It struck me that one of the narrators sounded exactly like the narrator from a book I listened to years ago. In fact, it was a book I listened to again while training my first CI over 5 years ago. I searched online and it is the same narrator! I remember when I couldn’t tell if a voice was male or female! Now I recognize voices of narrators from audiobooks! I love listening with my CIs! Tell us about your recent WOW moments!
  23. 2 points
    pdk

    getanearful updated

    Have been working on my getanearful app for android. Added a lot more training for people who have just started out. https://sourceforge.net/projects/getanearful/ The objective is to provide self training for those with android phones who cannot access the internet easily. I have also added medelmagic which uses the 2 matrices that are published in the Med-El rehab documentation, also includes the Ling 6 sound test. (select files and touch on medelmagic.apk) I have also added references which contain a lot of (for Me) interesting sites and articles for CI people. Getanearful is still going to have more added in the near future, waiting for input from 2 professionals working with me. Peter
  24. 2 points
    Neil

    July HearPeers Virtual Coffee Chat

    9::30 in the morning? ....Alright, count me in....But with this lockdown, like many people, I have developed a certain life style change...You know - Not shaving, not brushing my hair, wearing the same clothes that I slept in for the rest of the day...( and sometimes the day after). ... ....I am joking of course...(well not completely). But I do notice this in online meetings that I attended...People not turning on their videos...And the first thing I think is..."Is this a bad hair day for them, or did they just not bother getting up for the day...." But this will be interesting for me as I never used Google meetings, and am interested in the CC feature. I tried Zoom and a few others, but I really do not bother with them anymore as I had trouble with hearing what people were saying. Too many people speak too low, or do not know enough to talk into microphone, or just lousy reception and static. So, I will give it a shot....Unless I am working that morning (I will not know until the Thursday before). So, count me in...
  25. 2 points
    Mary Beth

    Put my CIs to a new challenge

    Today two friends stopped by for a short socially distanced visit in our backyard. Four people all wearing masks, sitting in chairs set up at 12:00, 3:00, 6:00 & 9:00 around a 12 foot circle. Seems like some crazy CI research experiment. I heard very well. It blows my mind that before getting CIs, I couldn’t follow a conversation involving 4 people even if we were sitting around a small table. I am very thankful for this gift of hearing from my bilateral CIs.
  26. 2 points
    Mary Beth

    July HearPeers Virtual Coffee Chat

    UPDATED Date for July!!!!!! Sunday July 5 !!!!!!!! 9:30 New York time We welcome more HP members! Anyone else want to join in? @Mary Beth YES @Jewel YES @Dave in Pittsburgh YES @Kirk S. YES @Tracey_66 YES @Kylie YES @Mary Featherston YES @Valentin YES @Joan YES @Nikki YES @Megan L. YES @Watersail MAYBE @phobos512 YES @Marion nancy YES Google Meet is a free app. Download it. If you already have a Google account it may already be listed in your extras. There is either (depending on device used) a CC button to select or 3 dots (...) that when you select the dots you will see the option to turn on captions. About a week before the virtual chat, I will send out a group HP mail. You can see the mail at the top of HP under the envelope icon. Looking forward to the July chat! Stay well everyone.
  27. 2 points
    Megan L.

    I am so scared please help.

    @Glenda At activation - I heard my Audi’s voice (who is a man) but not my own voice or my mom’s. My Audi’s voice sounded like a smurf the entire visit. Over the course of an hour mine and my mom’s absence of voice turned into ringing which would last the entire day and be gone the next. The best thing about my activation - I heard music and listened to it the entire ride home 😁 however there were no voices!!! I will never forget what Maroon 5’s “Sugar” sounded like without their voices 😂 My aural rehab 2-3 hours a day helped tremendously with word discrimination. The rehab was time consuming and frustrating at times but worth every second. It’s a journey, a very interesting one, and very rewarding! @Renachelw welcome back! I too just returned to HPs 🥳
  28. 2 points
    Kylie

    I am so scared please help.

    I was able to hear right away. It was robotic but I could understand some speech by the end of the first day. Within a few weeks it was getting really good for speech, though still had an electronic tone. This is fading over time and sounds are becoming more natural.
  29. 2 points
    Mary Beth

    I am so scared please help.

    @Glenda Some people understand speech at activation. It sounds odd at first but that changes over time. I did not understand speech at activation. I started with static and beeps. But a few hours later speech started. I was soooo excited. Cochlear implants are a journey. It is helpful to think of them that way. I loved my CI journey. Every morning I jumped out of bed, put my processor on and wondered what WOW moments awaited me. Here is a video Med-El made of my CI journey. Everyone’s journey is unique. In fact each of my CIs took unique journeys. I love them!
  30. 2 points
    Hi @JosephG Each person has to make the decision that's right for him. My dominant ear was implanted and I have no regrets. I did lose most of my residual hearing and I now hear better from the unaided ear than the implanted ear when I'm not wearing the audio processor. What I have lost pales in comparison with what I have gained with the CI. The most powerful HA couldn't improve my word recognition score. It was 0-1% with the HA. The amount of money I wasted on powerful HAs over the years would have been better spent on my CI. If you're satisfied with what you are getting from your HA then go right ahead but honestly it doesn't sound like you're getting much from it. So you can tell what I would do 🙂.
  31. 2 points
    Jewel

    I am so scared please help.

    @Glenda Hello, sorry your HA died and that there is no HA that is powerful enough to help with your hearing loss. When I was told that Cis were my only option, I refused to accept it and I wasted money buying more powerful HAs over a 5 year period in the hopes that I could prove the doctors wrong. The HAs offered me little help. I still had to rely on lipreading mostly and I still couldn't hear over the phone. I finally decided to get a CI and I'm so glad I did. I hardly have to lipread anymore and I can usually hear over the phone with ease. My deaf relatives have seen how it has improved my life tremendously. However, they won't go for the CI for themselves. Some people are afraid of the unknown but nothing tried, nothing gained. Of course there are no guarantees with CIs, but it seems that most people make improvement in terms of hearing when they get CIs. So I encourage you to do your research and see what's best for you. Wishing you well on your journey.
  32. 2 points
    @JosephGI am bilateral my first implant was 2016 and second implant 2018 best decision I’ve ever made you will hear sounds that you haven’t hear before how exciteding Best of Luck
  33. 2 points
    That's a difficult one. I had my left ear implanted. Speech recognition was only 12%. With the implant, it's 93%. My right ear which has the hearing aid is only 32% That test was over a year ago and I feel it is worse than that now. So I have really nothing to lose by getting the right ear done. It sounds like you have fairly good speech recognition with your hearing aid.
  34. 2 points
    I'm in exactly the same situation. Get some benefit from a hearing aid in my unimplanted ear but not much benefit and can only hear traffic noise and my dogs barking a hearing aid. Am seeing the doc next month about getting this ear done. What decided me was the thought that if anything happened to my implanted ear, I would be unable to function. I can't hear with just my hearing aid in and no implant. I can't compare audiometry though, just practicalities. And surely hearing will be balanced with two implants.
  35. 2 points
    Kylie

    Hello from Ludomiro

    @Ludomiro Hello! My path was similar. I experienced sudden hearing loss on right side, from perfect hearing, at age 37. The cause was an inner ear infection that damaged the cochlear. I totally agree that a single sided hearing experience is significantly lacking. No stereo means no orientation to sound, no nuances, hard to track conversation, hard to filter in noise etc. It is a loss of way more than half of the hearing world. I am a semi-professional singer so I have also been focused on music experiences. I sing solo and in a close harmony group. I continued to sing while deaf for 1 year, but it was very challenging and I relied on lots of feedback from others because it was hard to tell my volume and tone (though pitch was still good.) I have been a CI user for 1 year now. EVERYTHING in my life has improved for the better. Conversation, orientation, noisy environments, music. Music is understandably your main concern. But it is also the most difficult to predict for a precise outcome. No ENT or audiologist will promise you that your previous hearing will be restored, because it just can't be replicated especially for music. However it can get very close. Many other musicians on this forum can tell you about their music experiences after much longer time than me (which I find very reassuring), I can only talk from 1 year in. So far the results are great. With my CI and hearing ear combined I have terrific music hearing. I have plenty of nuances and I can sing confidently including in harmony. And I enjoy listening to music as much as before. With my CI alone (when I'm doing rehab practise via my artone) music sounds weird and more electronic but it's improving all the time. I hope this helps, as well as info you will get from others. There is some great info collected on the music section of the forum.
  36. 2 points
    Megan L.

    Car radio with c i

    @Mary Beth I did fiddle with the treble and bass too! 😁
  37. 2 points
    Megan L.

    Car radio with c i

    Hi @Lori m! I love listening to music in my car. I have a Fender sound system, so it has a nice full sound. I do not use any assistive tech but I have fiddled with the settings 😁 one thing I did since I do not have passengers behind me most of the time, is to turn off the sound in the back. All the sound is in the front with me. Let us know how you make out!
  38. 2 points
    Mary Beth

    July HearPeers Virtual Coffee Chat

    UPDATED Date for July!!!!!! Sunday July 5 !!!!!!!! 9:30 New York time We welcome more HP members! Anyone else want to join in? @Mary Beth YES @Jewel YES @Dave in Pittsburgh YES @Kirk S. YES @Tracey_66 YES @Kylie YES @Mary Featherston YES @Valentin YES @Joan YES @Nikki YES @Megan L. YES
  39. 2 points
    Mary Beth

    July HearPeers Virtual Coffee Chat

    I am going to tag some more HP members to see if they want to join in. Maybe you can tag members too? @Joan @Megan L. @Nikki @Angie @Jdashiell
  40. 2 points
    My med-el kit in Australia came with the Artone. I did not realise that was not the same everywhere. Among lots of variations I have come across lately!
  41. 1 point
    Hicksy

    Missing the true sound of music

    I’m 3 and a half years in and I still find music a struggle. A lot depends on the source. If I listen on a good system it’s a lot better than a cheap speaker or phone. But I’m reminded of one of the main reasons I finally agreed to get the implant... I realized one day I could no longer even hear Robert Plant’s voice while listening to old Led Zep albums. He was still in my head but I couldn’t actually hear him anymore. That tipped the balance. Since the implant, I still listen to a ton of music and in fact enjoy it as much, if not more, because I’m hearing stuff in music that I never knew was there. Good luck and remember the song doesn’t necessarily have to remain the same😀
  42. 1 point
    Megan L.

    July HearPeers Virtual Coffee Chat

    @Mary Featherston I had my coffee during the chat 😊 sorry you’re audio wasn’t working. Hopefully next time it will work!
  43. 1 point
    Andy

    Calling all Rondo 2 users

    I love mine for the simplicity in wearing/charging...etc and not having to worry about rechargeable/disposable batteries..etc.. the only negative I have encountered is wind noise. It makes hearing impossible. Perhaps this is something that could be looked into for future Rondos. also, make the next Rondo Bluetooth capable...for direct streaming?
  44. 1 point
    Life as a deaf person in a world of face masks Check out reviews of various face masks with windows and face shields. Join in and review the items you have tried. What works best for us? Tina Gonzales Childress, Carrie Spangler and I worked together and we really want to hear from you! https://tinachildress.wordpress.com/2020/06/21/the-effects-of-face-shields-and-masks-with-clear-windows-on-people-who-are-deaf-hard-of-hearing/
  45. 1 point
    Megan L.

    5 years and still WOW moments!

    So awesome @Mary Beth!! It’s amazing how the CI keeps surprising us 😁
  46. 1 point
    @Mary Bethgreat info Thanks
  47. 1 point
    Megan L.

    Life with CIs and face masks

    @Mary Beth I have the feeling we’re all going to have a roller coaster ride with these face masks!! I went to Walmart the other day and understood everyone fine but when I went to the doctor’s office, the person taking my info had a slight accent and I needed her to repeat herself a few times and she kept turning her back to me to type. I’m not back to work yet but everyone knows I have a CI and we’re a tight team so we’ll figure it out if I can’t understand them 😆 @Tracey_66 Hope you made out well with your results!
  48. 1 point
    @JosephG If you have an Android phone, download the free speech to text app called LiveTranscribe. If you have an iPhone, download otter.ai (free for the first 10 hours every month, no subscription required).
  49. 1 point
    Jewel

    Calling all Rondo 2 users

    Hi @Sherri I have Sonnet and Rondo2. I absolutely love Rondo2. It is very light and I usually am not aware that something is attached to my head. Although it usually stays in place I prefer to use a tether just in case it falls off, which is very rare and only happens if I am jumping or the like. The sound from Rondo2 is great. In fact my audi tested my hearing with Rondo2 and Sonnet and I heard much better than Sonnet. However, Sonnet is better in noisier environments. Any specific question you'd like to ask?
  50. 1 point
    Mary Featherston

    Car radio with c i

    I listen to music in the car daily - always during my commute. Like Megan I have a decent sound system (Harman Kardon) and have not found it to be difficult. In fact it was one of my favorite bits of rehab, and I still love to listen. I definitely don't roll the windows down, though, or open the sunroof. The noise interferes with hearing the music.
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