HearPeers Heroes Kirk S. Posted February 25, 2021 HearPeers Heroes Report Share Posted February 25, 2021 38 minutes ago, tmscarlett10 said: I am really sorry to hear about your struggle with that, @Kirk S.. I hope it all works out in the end. And remeber, you're not alone. Just out of curiosity -apologies if you've already answered this - did the surgery change anything as far as residual hearing or tinnitus or anything? Which surgery? I’ve had a bunch of them. But if you are asking about my CI: Yes, it has helped suppress my tinnitus, which used to be extremely bad. Now it’s mostly just a minor annoyance, so I’m very grateful for that. I’ve had SSD for 10+ years and the CI also has restored a sense of “balance” to my non-hearing side, although the sound quality from the CI is still basically unintelligible, so it hasn’t really helped my hearing. Hopefully we’ll find out that the implant has a defect that’s been causing all these problems and I can get it replaced with one that works. We’ll see. I’ll let everyone know. Thanks for the kind thoughts and words... Joan 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kirk S. Posted February 25, 2021 HearPeers Heroes Report Share Posted February 25, 2021 12 minutes ago, Joan said: Yes, we are interested, @Kirk S.! You are such a sweetie, Joan. Joan 1 Quote Link to comment Share on other sites More sharing options...
tmscarlett10 Posted February 25, 2021 Report Share Posted February 25, 2021 @Kirk S., I hope that they can help you out! I may wanna get one of those tests done for my left side too. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 25, 2021 Author HearPeers Heroes Report Share Posted February 25, 2021 @tmscarlett10 It may be a great idea. Then you would know for sure. In my opinion, when CIs are not working standard of care should include: - after implantation imaging to ensure the electrode array is in the appropriate position - integrity testing of the internal component to rule out a hard failure tmscarlett10 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 26, 2021 Author HearPeers Heroes Report Share Posted February 26, 2021 REMINDER!!! Smile Sunday February 28 9:15 am New York time start time chat opens at 9:00 for socializing Google Meet with free live captioning Looking forward to our February GoogleMeet chat. GoogleMeet invites will be sent to: @Nikki @Nischal Koirala @polyesternapkinstowaway @Mrs T7 (first time) @Justin (first time) @John R (first time) @ats169 (first time) @Kylie @Jewel @Dave in Pittsburgh @Tracey_66 @Valentin @Mr-LJ @tmscarlett10 @Mary Beth @Jared Charney @Joan @Megan L. @Mary Featherston @Kirk S. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kirk S. Posted February 26, 2021 HearPeers Heroes Report Share Posted February 26, 2021 21 hours ago, Mary Beth said: @tmscarlett10 It may be a great idea. Then you would know for sure. In my opinion, when CIs are not working standard of care should include: - after implantation imaging to ensure the electrode array is in the appropriate position - integrity testing of the internal component to rule out a hard failure Hi Mary Beth. FYI, I had the “integrity test” for my Synchrony implant unit today. Alas, I wish I could say it went better. My regular audiologist and a Med-El audiologist based in Tokyo conducted the test and they said it shows that everything is working fine. However, they couldn’t say why both my original and “loaner” Rondo 2s periodically shut off with no apparent reason. They agreed that it’s unlikely that both processors suddenly developed the exact same fault, at the exact same time, and that therefore the problem was probably with the implant unit. They gave me a brand new processor and said they would send the other two units to Med-El headquarters in Austria for analysis. They also said they would ask headquarters about what to do next. Both audiologists were extremely conscientious and very nice and it’s clear they felt bad about not having any good answers for me. But it seems like they might be just a few years behind the States, EU and Australia in training and experience. Also, part of it could be a language issue. I asked for a system “integrity” test. My lead audiologist said that the Med-El software conducts an automatic “integrity” test at the start of each MAPPING session. But that seems to refer to whether each electrode is properly conducting an electrical charge rather than a full systems check (I’m no expert, so I could be wrong about this). However, neither audiologist was sure whether the Med-El software conducts a full diagnostic of the implant system. They said they would check with Austria and get right back to me. In any case, I’m sure they’ll work things out in the end. In the meantime, my new Rondo2 unit is charging up now and I’ll start using it in a couple hours. Wish me luck! See you and the chat group on Google Meet Sunday. Best, Kirk Mr-LJ, Joan, Jared Charney and 1 other 2 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 26, 2021 Author HearPeers Heroes Report Share Posted February 26, 2021 @Kirk S. At the start of each MAPping appt a test is run to check that the electrodes are fine. This test is conducted by our clinical audiologists and uses a special coil. I read that may change to using our own coils but so far they have always used special coils for me. That is not the same thing as integrity testing by a Med-El audiologist/technician when an internal failure is suspected. I sure wish things were going easier for you. Quote Link to comment Share on other sites More sharing options...
Joan Posted February 26, 2021 Report Share Posted February 26, 2021 So sorry to hear you still don’t have any good answers yet, @Kirk S.. Frustrating, I’m sure. As you await word from Austria, wishing you much luck with that new processor! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kirk S. Posted February 26, 2021 HearPeers Heroes Report Share Posted February 26, 2021 37 minutes ago, Mary Beth said: @Kirk S. At the start of each MAPping appt a test is run to check that the electrodes are fine. This test is conducted by our clinical audiologists and uses a special coil. I read that may change to using our own coils but so far they have always used special coils for me. That is not the same thing as integrity testing by a Med-El audiologist/technician when an internal failure is suspected. I sure wish things were going easier for you. Yeah, I KNEW they didn’t know what they were talking about. Or at least not what I was talking about. Do you have any idea EXACTLY what the test is called — a formal name, in English — when Med-El suspects an internal failure? Language is a big, big problem here and unfortunately all the Med-El folks in Japan seem to use Japanese-translated manuals, etc., so everything seems to get lost in translation. Do YOU know anyone at Med-El USA whom I can contact for some help? By the way, I’ve never figured out if you are you an actual Med-El employee or just a very dedicated volunteer... Quote Link to comment Share on other sites More sharing options...
Joan Posted February 26, 2021 Report Share Posted February 26, 2021 @Kirk S. those are all Mary Beth questions, but I can tell you she is a Med-El user and the most knowledgeable, dedicated volunteer they could ever hope to have! 😊 Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 26, 2021 Author HearPeers Heroes Report Share Posted February 26, 2021 Thanks @Joan smile @Kirk S. I am not, nor ever have been, an employee of Med-El. I am a Teacher of the Deaf and I recently retired from teaching deaf and hard of hearing students in our K-12 school system. It was a fabulous career and I enjoyed it very much. I also taught American Sign Language at our local state university part time at night for decades. I enjoyed teaching those eager young adults as well. When I received my first CI in early 2015, I realized several things. * These CIs were going to be life changing for me. * I owed a debt of thanks to those who volunteered with engineers and audiologists over the years to help create this amazing technology. * My career as a Teacher of the Deaf helped me understand my journey and this technology. It greatly helped me guide my aural rehab after activation. * There is a need for more support for adults who receive CIs than what is customarily provided. * Forming relationships with other CI users is very helpful. * I could try to pay my thanks forward by helping others on their CI journeys. That is my story. My motivation. I volunteer my time to try to help others on their CI journeys. Joan, Jared Charney and Mr-LJ 3 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 26, 2021 Author HearPeers Heroes Report Share Posted February 26, 2021 @Kirk S. That is the name we use here for a special manufacturer employee test conducted at an appt with our clinical audiologist when a hard failure is suspected. It is different from the telemetry test performed at the start of every MAPping appt. My understanding is that during an integrity test by a manufacturer audiologist/technician electrodes are placed on our head and special tests are run. @MallaRuth has gone through the integrity test in the UK. Maybe she can describe the test to us. Quote Link to comment Share on other sites More sharing options...
MallaRuth Posted February 26, 2021 Report Share Posted February 26, 2021 Hello All! Yes, I had implant failure last August on the right hand side - 20 years after the op. I was on holiday at the time and funnily enough had a loaner processer too. It started with my processor switching off. Changed the batteries, nothing. Then it came back... and later switched off again. It sounded like it was 'popping' each time, and was staticky. Then it wouldn't come on at all and either did the loaner processor work. I am bilateral so I took my right processor off after that - I didn't want anymore static sensations. The implant assessment was two weeks later, and it was weird. It takes a very long time and is extremely dull. The person who conducted it made a special journey in and he had brought his own testing kit i.e. it was not done with equipment which is normally at the audiology centre. Part of it involved taking the magnet they were testing with and putting a tight band over it, and pressing it onto my head. It was uncomfortable but not painful. I have a PDF of the report that came from Austria afterwards. I'm happy to share it here. Jared Charney and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
MallaRuth Posted February 26, 2021 Report Share Posted February 26, 2021 2 hours ago, Kirk S. said: Yeah, I KNEW they didn’t know what they were talking about. Or at least not what I was talking about. Do you have any idea EXACTLY what the test is called — a formal name, in English — when Med-El suspects an internal failure? Language is a big, big problem here and unfortunately all the Med-El folks in Japan seem to use Japanese-translated manuals, etc., so everything seems to get lost in translation. Do YOU know anyone at Med-El USA whom I can contact for some help? By the way, I’ve never figured out if you are you an actual Med-El employee or just a very dedicated volunteer... Mary Beth is just wonderful isn't she 😊 I've been fortunate enough to meet her a couple of times IRL, and have my fingers and toes crossed for a conference in Cambridge this autumn as well! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 26, 2021 Author HearPeers Heroes Report Share Posted February 26, 2021 I have my fingers and toes crossed as well my friend, @MallaRuth! MallaRuth 1 Quote Link to comment Share on other sites More sharing options...
MallaRuth Posted February 26, 2021 Report Share Posted February 26, 2021 Here is the report - it does not contain any of my personal identifying information, so I am happy to upload it here. Hope it works! 190904_DeviceAssessment_YAIS_RM_BM.pdf Quote Link to comment Share on other sites More sharing options...
tmscarlett10 Posted February 26, 2021 Report Share Posted February 26, 2021 I am really sorry to hear about that @Kirk S.. According to what Mary Beth and MallaRuth were saying though, I would definitely talk to your audiologist again about this. Maybe get a second opinion if necessary, and/or contact somebody in Med el who might know more about this. Best of luck! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Kirk S. Posted February 27, 2021 HearPeers Heroes Report Share Posted February 27, 2021 10 hours ago, MallaRuth said: Here is the report - it does not contain any of my personal identifying information, so I am happy to upload it here. Hope it works! 190904_DeviceAssessment_YAIS_RM_BM.pdfUnavailable Hi MallaRuth. Thank you for the .pdf. Unfortunately, I keep getting an error message when I try to download it. It seems like I don’t have permission or software or something. In any case, could you just email the .pdf to me at kirksp123@mac.com. That should work. I am sure it will be very helpful if I can show the report to my audiologists: “Easier to show than to explain,” especially in a foreign language. Thanks!!! Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 27, 2021 Author HearPeers Heroes Report Share Posted February 27, 2021 @tmscarlett10 Tiffany, Did you already have your second surgery? How are things going? Quote Link to comment Share on other sites More sharing options...
tmscarlett10 Posted February 27, 2021 Report Share Posted February 27, 2021 @Mary Beth, yes. My surgery was last Thursday. As far as I know, it went well. But like the last one, I don't remember anything that happened in the recovery room lol. The surgery did leave me nearly deaf though. Before I was just HOH; I'm pretty sure that I can now call myself deaf. I can only hear really loud noises and some background noise, but not anybody talking or anything else. It's okay, it just came as kind of a shock, since my surgeon is supposed to be really good at preserving residual hearing. As long as the implant works, it'll all be worth it. And this time around, recovery is hitting me harder than the last time. I'm doing better now after a week, but still haven't been able to sleep much. And I just started noticing a couple of days ago that my vision is a bit distorted. That's pretty much it. Post-op and activation are on March 16. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 27, 2021 Author HearPeers Heroes Report Share Posted February 27, 2021 @tmscarlett10 I hope your recovery gets easier. Be sure to be in touch with your CI team about any concerns- like the change in your vision. Are you set up to use speech to text apps while you wait for activation? Quote Link to comment Share on other sites More sharing options...
tmscarlett10 Posted February 28, 2021 Report Share Posted February 28, 2021 @Mary Beth, thank you. If it persists through the weekend, I will give them a call next week. I have live transcribe set up on my phone. Now that you mention that, do you have visual voicemail, and does it transcribe for you? I have had visual voicemail forever, but for the longest time, it hasn't transcribed for me, so there's really no point in having it. Is there another app that might be better for this? Hopefully I'll see you tomorrow, if I don't oversleep again lol. Quote Link to comment Share on other sites More sharing options...
John R Posted February 28, 2021 Report Share Posted February 28, 2021 8 hours ago, tmscarlett10 said: @Mary Beth, yes. My surgery was last Thursday. As far as I know, it went well. But like the last one, I don't remember anything that happened in the recovery room lol. The surgery did leave me nearly deaf though. Before I was just HOH; I'm pretty sure that I can now call myself deaf. I can only hear really loud noises and some background noise, but not anybody talking or anything else. It's okay, it just came as kind of a shock, since my surgeon is supposed to be really good at preserving residual hearing. As long as the implant works, it'll all be worth it. And this time around, recovery is hitting me harder than the last time. I'm doing better now after a week, but still haven't been able to sleep much. And I just started noticing a couple of days ago that my vision is a bit distorted. That's pretty much it. Post-op and activation are on March 16. FYI, my surgery was Nov 30th switch on was Dec 15th, my HOH went to profoundly deaf. I was devastated as I had hoped for hearing preservation. on January 20th they did another test and found my hearing had improved (possibly bruised or aggravated in surgery, who knows ) but it had improved and my EAS portion of the Sonnet was activated. each MAPping since has been positive steps. so it’s early days for you, and still me. Hang in there. Jared Charney and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 28, 2021 Author HearPeers Heroes Report Share Posted February 28, 2021 @tmscarlett10 I recommend the free InnoCaption app/service which includes voicemail. (free in the US due to how it is funded) It’s easy to set up. Give it a try. (and you can forward calls to it from your number by setting up call forwarding on your phone so you don’t have to give out a new phone number) https://innocaption.com tmscarlett10 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted February 28, 2021 Author HearPeers Heroes Report Share Posted February 28, 2021 Great February HearPeers GoogleMeet chat today! 13 members joined in 3 people were first time participants Excellent discussions. See you all next month! Joan and Jared Charney 2 Quote Link to comment Share on other sites More sharing options...
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