Mayo Clinic Connect
Considering a cochlear implant. Any info on type to get and/or any needed info to consider???
Liked by seekerroo, charlesconnell
I'm very happy that your CI has been so successful. I just joined Mayo Connect today…..want to learn more about my options to treat my hearing loss which happened suddenly 3 years age. At the point now where hearing aids do not help much but my docs have told me that hearing aids have to be completely useless before I qualify for a CI. Were you also told this? Profound hearing loss and also major balance problems have been a real life changer for me and I miss my old life so much. Thanks for listening. Judy
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Dear Judy, 4 months since my CI was connected and I still feel like I’m a miracle everyday! My 3 m evaluation showed that before CI with both hearing aids my sentence recognition was 14% and now it is 100%! hearing in noise was 0, and now is 60%. Amazing. My audiologist says I am a Superstar and I certainly feel like one. I am grateful every single day. My story similar to so many others, diminishing hearing then profoundly deaf and Hearing Aids not helpful and such a misery, for me especially but also my husband and family who felt a great loss. I didn’t know of anyone who had a CI or about HLAA so my research was long and arduous. I tried to “keep up” socially but so exhausting. I even took Italian lessons! Which were so difficult but ultimately helped with CI in ‘stretching “ my brain as my audiologist said. After 3 years of being deaf and all that entails, I chose John Hopkins and began my journey to hearing. At first evaluation I was “overqualified’ for a CI and Medicare coverage. Still I continued to research, I found and walked into an HLAA office one day and met 2 women who had CIs and one who had used Johns Hopkins and same surgeon I was considering. One woman very young and the other my age and I was so excited! From that point on my decision was made and began the process, including meeting with surgeon, audiologists, CAT scans, physical etc. Surgery in mid January and connected one month later. I chose Cochlear brand because it is the most compatible with IPhone and Resound which were my former hearing aids. I was told that all 3 companies are very good and just a matter of individual differences, like IPhone. As I mentioned, I could hear and understand immediately, I can talk on the phone with Cochlear program and works like a charm, I can hear TV although accents and dialects not so much. Background noise is an issue because I am hypersensitive to it but can hear as well as a hearing person in noisy restaurants and places. Sometimes difficult with wind or person not close by to be able to tell where sound is coming from but that is minor to me. I was supposed to have an evaluation for a hearing aid on my left year but decided to wait til 6m visit to see if I want one because I hear as much as I want right now. Haha. I can’t praise Johns Hopkins enough, every doctor audiologist technician and support has been outstanding and continues to be. I understand that this is just my experience and others vary but I can only speak of mine. This is very long Judy but I hope it helps, I would have been happy to have such input when I was first considering. I am happy to answer any questions you may have . I wish you the best on your journey, Christina
Liked by Colleen Young, Connect Director
Be sure to get tested at a cochlear implant center in your area. I know several people who were told they did not qualify for a cochlear implant by their audiologists and/or ENTs. I also encourage you to use the telecoils on your hearing aids with assistive technology. A lot of people give up on their hearing aids because they are inundated with noise they find difficult to deal with. Hearing Assistive Devices can be very helpful in noisy settings like restaurants, church coffee hour, bars, sports events, etc. I believe that the tests for speech discrimination are a key factor in determining candidacy for CIs. So if you're doing OK in the testing booth, you may not qualify. Of course that environment isn't 'real life' if you are a social person who enjoys people. That's where the ALDs may be helpful to you. I use both a CI and a HA, which is called 'bimodal'. Both technologies were working well together. However, prior to having the CI and the time it took for my brain to adjust, I was doing poorly with the HA. The brain's ability to relearn to hear is amazing. Good luck to you.
Thanks for your reply. I don't know what "telecoils with assistive technology" means. Is that when you use your phone to adjust the hearing aids?
Thank you so much Christina. You are right that keeping up socially is exhausting……. so much easier to just stay home but I do not want to give in to that!
A telecoil is a tiny component in a hearing aid or cochlear implant processor that allows one to connect directly, with a variety of audio technologies. The telecoil really should be called an 'audiocoil'. It is referred to as a telecoil because it was originally designed to be used with older landline telephones. Today it can connect with all personal audio devices that have an input jack. That includes your cell phone, computer, iPad, radio, etc. It will also allow you to connect wirelessly to a public address system in a large venue if a hearing loop is installed in that room. In all instances, turning the hearing aid to telecoil mode allows you to hear ONLY what is coming into the microphone or from the device it's plugged into. It does not pick up background noise in the environment, as it brings the sound direct to your ear. Some say it's like having binoculars for the ears! Because this component was originally designed for old landline telephones that were used in the 40s, some who don't understand its myriad uses consider it 'old technology'. It IS old technology that remains invaluable to hearing device users who wish to remain in the hearing mainstream. And, it is available in most hearing aids with the exception of tiny in the canal aids that don't have space for the component. If present, it must be activated by the fitter to be functional. And, the person who fits your hearing aids or cochlear processor has an obligation to tell you about it and to explain how it works. If you ask about it and they say "It's old technology you don't need." They are wrong.
Too many people, including those who sell hearing aids, think that BlueTooth technology has replaced the telecoil. In some instances it has, but not in large group/room settings. (Theaters, performing arts centers, lecture halls, worship centers, etc.) Consider this: If there were 20 hearing aid users in a lecture hall with 100 listeners, the speaker would need to have 20 BlueTooth microphones to transmit to those 20 people. With a hearing loop and telecoils, only the main microphone that transmits to both the hearing loop and the public address system is needed to transmit to all of them. No receivers needed. All one has to do is turn the telecoil on to connect.
It doubles the value of your hearing instrument.
Liked by stuman52, bookysue, hearingpeg
The church I attend with my wife just redid their sanctuary and installed a hearing loop. Now, I hear every word of the sermon crystal clear. It's like it goes right to my cochlear implant (and without any background or other noise). The difference in UNDERSTANDING and COMPREHENSION is remarkable. I can't stress it enough. I went from understanding 75%-80% of the sermon with my cochlear implant on Manual mode to understanding nearly 100% of each sermon on Telecoil mode. And, when I need to talk to someone next to me, I switch to M/T (manual/telecoil) and then can hear the person next to me while still hearing the sermon. The difference is amazing.
Liked by lioness, bookysue, jsterkensaud
@judyca7, to learn more about telecoils see this discussion on Connect
– Do you know about Telecoils & Hearing Loops in Public Spaces? https://connect.mayoclinic.org/discussion/do-you-know-about-telecoils-hearing-loops-in-public-spaces/
Liked by jsterkensaud
I had a cochlear implant 5 years ago and it was so successful I had the second ear done 3 years later. My hearing tests revealed an improvement from 9% to 96% in the right ear and 14% to 70% in the left ear.
Woooow you are very lucky! I had my implant done a year ago, and still not working……
I have Menieres disease and autoimmune that attacks the inner ear………….long story. I am happy for you.
Hearing loops greatly increase the usefulness and utility of hearing aids and implants. Are you aware that the Hearing Loss Association of America has developed a whole Toolkit for Hearing Loop advocacy? Their members are working to foster more loop installs. We could use your help. 🙂 See http://www.hearingloss.org
You are sooooooooooo very lucky!!!!!!!!!!! My CI was done a year and half ago and no words yet…
@jsterkensaud Does the site have a section where you can find all of the hearing loop installs in your particular area? Thanks, Mike
HLAA does not but three websites try to do this. Please know that none of these lists are complete. I know how hard it is as I maintain a list for Wisconsin on the http://www.LoopWisconsin.com website. It is difficult to stay on top of every installation if the users and those who install loops don't inform. You can find hearing loops on http://www.Time2LoopAmerica.com, http://www.ALDLocator.com and http://www.LoopFinder.com If you know of looped venues and they are lacking on those lists – email me and I will forward. Jsterkens@hearingloss.org
FYI about loops. Our library has just installed a Loop in the Board Room. Last night the Board members were told to speak into the mics and keep the mics around 9 inches from their mouths. Well 7 Board members did that, and it was wonderful. Two board members slouched back in their seats and didn't try to make is work. After my anger subsided, I said to one member that he was too far from the mic (about 2-3 feet) and I could not hear what he was saying. He laughed and kept on slouching.
Maddening – too bad you cannot dictate good manners, heh? Garbage in – garbage out. Why not try to see if you can get cooperation the nice way – steer them to this video: https://rootedinrights.org/video/like-the-mic/ Don't give up – keep asking. KEEP raising your hand EVERY time he is speaking. Eventually he will get that you are serious about this. As a last resort I would consider filing a complaint with the ADA (at least the library will know you are serious about this) – what good is a loop (or any other assistive technology) if there is no or bad input? Did you know that with an iPhone and a pair of LoopBuds (www.LoopBuds.com) you can make recordings? – Perhaps that will help to make things clearer. You have a right to hear. http://www.ada.gov/filing_complaint.htm
In Sun City Center FL – we have loops in quite a few places….https://hlaascc.com/news-and-events There will be a new campaign to loop even more places going forward with the two Hearing and Health Expos in 2020
@jsterkensaud, you can also post the list here. One can post files to their messages. I think the group would appreciate it.
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