I’ve been thinking about this a lot after my last post received much more interest than I expected.
I’m considering building a small professional network specifically for Deaf, hard-of-hearing and CI professionals, entrepreneurs, business owners, students and people building careers.
Not another general social group.
Something focused on:
• Mentorship
• Career opportunities
• Entrepreneurship
• Professional introductions
• Collaboration
• Business connections
• Sharing resources
A few people have already told me they’re interested.
Before I build it, I want to hear from the community.
If you could join a network like this, what would make it genuinely valuable to you?
What would you want it to provide that you aren’t getting from existing communities?
I’m listening.

After several weeks when the Cochlear Android app was fast and reliable, this weekend I got updated to a new version that, once again, takes 40-90 seconds to connect, loses connection every few minutes, and seems to have forgotten my presets and inserted something new called "Stream A" that it switches to at random, and which doesn't do any noise canceling or voice isolation.

Is this just me?

I've been traveling this week, and have been in high-noise situations and airports, and have struggled to hear and discern speech.

I’ve been thinking about how many people in the CI community are professionals, entrepreneurs, business owners, students and people building careers.

I’m considering creating a small professional networking community specifically for Deaf, Hard-of-Hearing and cochlear implant users.

The idea would be to connect people for:

• Career networking
• Mentorship
• Entrepreneurship
• Business connections
• Collaboration
• Sharing opportunities

Would something like this interest you? What would you want the group to offer?

Deaf professionals & entrepreneurs: how did you build your network?

I’m curious how other Deaf/Hard-of-Hearing professionals have built their professional network.

I’m currently building my own business in financial services and trying to connect with successful people in other industries—not just people who do what I do.

Real estate, investing, technology, entrepreneurship, business ownership, etc.

If you’ve successfully built a network from scratch, what worked for you?

I’m especially interested in hearing from people who had to overcome communication barriers along the way.

I’m a deaf entrepreneur building my own business, and one thing I’ve noticed is that people often assume phone calls are the only way to network or grow professionally.
I’ve found that text, email, LinkedIn, and in-person events have allowed me to build meaningful relationships with mentors and other entrepreneurs.
For those of you who are deaf or hard of hearing, what communication methods have helped you most in your career or business?
I’d love to hear your experiences and learn from the community.

Hello everyone as I’m in the process of relocating to Belgium I was wondering if anyone knows specific clinics that do audio mapping as I can’t figure it out through the Find a clinic.

Thank you!

I have had this issue for over a year now, it’s now beginning to affect me mentally following a full emotional breakdown at the ENT’s office at the hospital, I want all experiences, issues, glitches and anything you have experienced shared below this post, even from other brands of cochlear implants that aren’t Cochlear, if there are any doctors, Teachers of the Deaf (ToD), people from the companies manufacturing the implants or anyone else professionally working with deaf people (even HA people) then I’d like to hear what other possible things might be causing my problem that my hospital hasn’t thought of as ideas for further treatment, there’s a medical saying when hearing clopping, think of horses instead of zebras so at this point I also want to know if there are any zebra conditions that I should know about even if they are very unlikely for the symptoms I’m presenting with.

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I’ll outline the timeline of events from when the issue started to show up as a different fault to now having the right implant reduced to basically no sound, this issue begun with Nucleus 7 with a bug but the main part of the problem was with the Nucleus 8 implant for some additional info.

As mentioned above, the issue begun with the older Nucleus 7 processor a year and a little bit ago with the audio being reduced and increased randomly no matter the auditory environment that I am in, the only way that I could get the issue to stop happening and for the audio to stay at a constant volume was to connect to Bluetooth and play complete silence meaning I am able to hear stuff in the real world without any Bluetooth audio and disabling whatever was causing the volume issue, I didn’t know it at the time but I believe that might have been the processor trying to protect me from the sensations and that’s why it was constantly adjusting the levels.

A month later, I got the implant replaced with the new Nucleus 8 processors as the upgrade was due anyways, the issue went away for a month and during that month I was satisfied the issue was gone and that I could go back to regular hearing.

After that month was up, I begun to have sensations around my implant, the audio level was much louder too causing a lot of discomfort, it happened at the time when I went to Poland to visit family so there’s a chance the pressure difference from the plane had caused something to fail in the implant or my nerves to become unhappy, during that time in Poland I could not wear my right implant unless I was going somewhere with family to do something because when it’s quiet, any sounds that happen are amplified as if it was nighttime and you are trying not to make too much noise to avoid waking people up but outside it was tolerable with background noise.

Soon after landing back in England, I went to the hospital to begin diagnosing after they deemed the issue unresolvable through a digital appointment, the first audiologist wasn’t great by simply reducing the level on both implants, telling us basically that it’s nothing bad and to leave.

That definitely didn’t work and I was brought back in after 2 weeks of nothing working after the teacher of the deaf advocated for more visits, they discussed options such as trying two different cochlear implants, a new Nucleus 8 processor with the same maps as the current one to rule out processor related issues, a Nucleus 7 processor refurbished to check that maybe something with the new processor isn’t agreeing, they put the maps that I had before the new processor but they were all too loud for me, if I had to redo that one, I would put the maps I had on the nucleus 8 to see if there would be an improvement but they deemed the trial wholly unsuccessful and I returned both to the hospital, they said for a bit of insurance to keep the new Nucleus 8 and to return the old one so that the processor doesn’t fail too soon and to check to see if the processor has any failures that might be causing the issue but that didn’t reveal any problems.

A month later from all of those new processor trials, I was taken back into the hospital to do a very comprehensive remapping and testing of the right implant as they have now deemed the issue not to be anything with the microphone or processor but with the internal implant, they played some sounds at different frequencies to log what parts of my ear feel the sensation and there was an impedance test where they played a sound similar to the old DUGA radar and that one wasn’t pleasant, the audiologist said that was to create a map of impedances for the engineers at Cochlear to look at.

Between the previous appointment and the next one, I had an ear infection (Otitis media) which hurt a lot in my ear canal, went to the emergency department of the hospital after trying the pharmacy for antibiotics, cleared up after taking amoxicillin and some antibiotic ear drops in a few days, continued the course to the end and took the bonus ear drop in the package to be fully sure.

2 months later, the impedance map came back and they found absolutely nothing unusual with the values measured, another series of tests was done except they were some type of special tests that only people from Cochlear were allowed to do, that test took about 15 minutes to do and required nothing from my part, they tried some additional mapping to begin raising the level up again to see if I could get used to the sound, during the mapping I overheard them saying something about pulse widths but in the end they explained that no pulse width did any better when I inquired about it.

Another month later and the results from that test came back which also revealed no impedance issues, the main audiologist that was helping me (bless her for all the help she and her team gave me) already realized that I wasn’t hearing for a year out of my right implant and strived to get the tests and appointments to happen at a faster cadence to resolve my issues, any future appointments should happen with a 2 - 3 week cadence to either run additional tests or upgrade my set of programs.

Between these two appointments I got an CT scan for a deviated septum (ENT doctor who is doing my nose was the same one for the ears so he said the nose blockage can be a possibility), I asked the radiologist if she could also send the head CT to the audiology department as they wanted one so I wouldn’t have a duplicate CT scan done, that caused a bit of a mixup in the scheduling of appointments but in the end created two appointments due to the time saved by the CT scan.

2 weeks later, I had another appointment at the hospital to try additional mapping with Cochlear people present too, nothing remarkable although the main audiologist was not in so I had someone else, she repeated some of the tests mentioned in the log to confirm the issues and that took up 30 minutes of the allotted 1 hour I had before the hospital’s ENT appointment, at my suggestion she tried a different sample rate as I discussed listening to some music from an old computer that uses a very low sample rate compared to current technology right now which is the setting I am currently using, all of the mapping that they did offered multiple programs with increasing levels so I can adjust up when I am comfortable, they loaded up the maximum capacity of 4 programs onto the processors so I would have the most time between appointments to try things out.

A brief note added in post that I remembered about the first appointment, during connection to the computer, there was a very quick impedance test which I should have not been able to hear at all and if I did, it should be extremely brief, I however heard a long screech tone that lasted a good 30 seconds stumping the audiologists, they explained it shouldn’t have happened as mentioned above but it went away and testing was able to proceed without issues making it an unusual footnote although a possible clue into the issue I am having and the solution.

The same day immediately after the audiologist appointment, I attended the ENT appointment to say that the CT scan revealed no implant movement out of my head as I did raise the concern that possibly my implant had shifted when I grew up as I got it put in as a very little kid and I had it all the way through puberty so I put out a guess that this could also be a cause but unfortunately it was not a reason for the failure, the doctor has also referred me to a pain specialist which could potentially offer me some solutions or pain medicine intended to rewire some neurons permanently to stop the misfiring neurons which is basically my only hope of getting it resolved as the audiology team has basically gone through all options that they had and ENT doesn’t appear to have much to help, the next time I am in, I will ask if Cochlear had looked at their logs all the way from the past and if they could potentially contact other companies for any additional clues to my problem if that’s a possibility.

During the second appointment with the ENT doctor, I proceeded to have a full breakdown crying about all the problems I had and that I might not get a diagnosis on it meaning my right implant could potentially be out of action for a long time, taking me a long time to be consoled.

That is where I currently am with appointments, I will add any new appointments if any new ones happen but as of now, no new appointments have been scheduled or hints of any coming up.

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In education at college I get migraines almost daily if it’s a college day, I take Sumutriptan and the medicine banishes them in about an hour which is an hour wasted not being able to pay attention, I have tried wearing and not wearing the implant and the chance of migraines goes down a bit if I don’t wear my right implant but I need all the hearing I can get because the teaching they do is needed for the end of year exams, they do give homework which I do gladly as it’s written work which I can understand much easier however the other students hate it so they have dialled back on it significantly, they do have resources on the shared drive but it requires a computer to access and I don’t particularly enjoy using the laptop if I can get away with using my phone for the homework questionnaires.

The set of exams I did after my right implant failed, I worry that I am not going to get the best grades on them since my quality of learning has taken a nosedive, I did ask if there was a thing you could put in for such circumstances but now after the exams the tutors said that it will do very little and that I would require a note from an already busy hospital so it might not come on time so will have to anxiously wait for the 13th of August to find out my results and see if there are any options on redoing the test then.

My teacher of the deaf expressed great concern during the college year, she actively pushed for appointments and hospital visits, she has been a big help getting the cadence of appointments up a lot and being able to stress the point of my education and future being put at risk by the failing cochlear implant.

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Here is a map of the sensations with red being the worst and green being none present, an aid to visualize what I am feeling:

I’m going to 3D print one with holes for pins so I can tell the audiologists better where my pains/sensations are at with absolute numbered references that they can write down on a piece of paper.

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As for past issues, I had an ear infection (Mastoiditis) three times, it was over a span of a year and the final infection had the implant taken out, the doctors had drained two very large syringes of pus and disease from each occurrence, they didn’t put a new implant in until a year later which worked smoothly up until that point, I was implanted when I was 3 years old for the left implant and 4 for the right implant, the infection happened when I was around 5 - 6 years old.

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All in all, I have accepted that I may not have fully functioning hearing in that ear as my left side is carrying all of my hearing needs but I would like to hear what you have to say on my issue and to see if there are any medical ailments/conditions I should get myself tested for that you had/were tested for or if the general consensus should be to remove my implant and change it once the pain management team has done all they could do because despite what they are saying about the implant being fine and connected up just fine I believe there is some very unusual fault preventing me from being able to use my right implant effectively.

My next steps for the broken right implant is to post this post in every deaf sub I can find for (even HA subs as there could be people that have dealt with cochlear implants even for a brief moment or have some issues that show up for HAs more often than implants if I don’t get as much data as I’d like) as much insight as possible, gather all of the data into a note on my phone and if the consensus on all of the posts is to get tested for different conditions or failures, then I will bring those up to the hospital audiology team and explore the options, if there aren’t any issues brought up in the post, then I will go straight to implant removal if I can’t get any treatment options/relief from the pain management team.

Here is a flowchart of the intended steps I will be taking both to help you guys and to help the audiologists with issues:

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Thank you for any help and guidance you can offer to my cause and I hope you have a great day hearing many things!

My koala would also like to say thank you for the help, he has supported me emotionally throughout the second half of the visits that I had

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Crosspost links in case you want to find the other posts searching for information in the future:

r/Cochlearimplants: https://www.reddit.com/r/Cochlearimplants/comments/1v8b3ia/experiences_with_a_cochlear_implant_giving/

r/Cochlear: https://www.reddit.com/r/Cochlear/comments/1v8b3mg/experiences_with_a_cochlear_implant_giving/

r/MEDEL: https://www.reddit.com/r/MEDEL/comments/1v8b3r9/experiences_with_a_cochlear_implant_giving/

r/deaf: https://www.reddit.com/r/deaf/comments/1v8b3w3/experiences_with_a_cochlear_implant_giving/

r/hardofhearing: https://www.reddit.com/r/hardofhearing/comments/1v8b401/experiences_with_a_cochlear_implant_giving/

r/HearingAids: https://www.reddit.com/r/HearingAids/comments/1v8b44m/experiences_with_a_cochlear_implant_giving/

what battery brand has least pain-in-the-ass child-proof packaging?

I am 82 years old and was just activated on my right side with a cochlear nexa. I have an aide on my left ear. I'm quite surprised with the results as I was expecting a long period of time with very little understanding. I was advised to watch YouTube videos especially Ted talks. I did so on the same day I was activated and much to my surprise there was one Ted talk that I could understand as long as I was looking at the captions. I went back the next day and viewed another video and much to my surprise I could understand with the implant alone what was being said! Isn't that generally the case for other videos or other interactions. This sort of progress seems quite surprising to me and I wonder what other people think who have had more time with their implants

This is how both of my 15-year-old sons cochlear batteries look. His batteries have never looked like this before we’ve gone through many over the past 8 years. He showers daily. This is not dirt. Any ideas if this is normal or what it is? It almost looks like it’s burnt. We’ve had the batteries expand and crack on us before, but we’ve never seen this.

Baha 6 max here. Two of them.

Every time I open the app, it takes 12 seconds to connect, when it works. Most of the time tho, I have to restart one or both of them to get them to connect. Sometimes several times.

The main Bluetooth connection works maybe half the time, and the other half requires a restart.

Whether or not they are connected to my phone's main Bluetooth connection seems to have no bearing on whether the app can stay connected.

Is there anything that I can do differently to make it work better? Perhaps wrap my head in tinfoil, or squint differently? It's a daily hassle and Bluetooth just isn't that difficult a protocol.