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Kirk S.

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  1. Like
    Kirk S. got a reaction from Jewel in November HearPeers Virtual Coffee Chat   
    Hi Everybody. Can’t quite see Mt. Fuji in this photo from Saturday, but it’s there in the distance. Nice sunset nonetheless, I think. Will send another once the peak is covered in snow. A classic. Cheers! 

  2. Like
    Kirk S. got a reaction from Joan in November HearPeers Virtual Coffee Chat   
    Hi Joan.
    Yes, my wife does indeed accompany me on visits to the audiologists. It can be very helpful, especially for admin issues. But in most cases it just adds another layer of complexity. Think of explaining a problem to a friend, who then explains the problem to another friend using a foreign language, who then proposes a solution, which your friend then has to translate back into your language and then explain it to you. Now imagine using medical terminology, which can be especially difficult to explain even in one’s one native language. It can be a rather cumbersome process, and in the end no one is really sure what everyone else was trying to say. Especially so if, after all that, the CI continues to produce mostly !@#$%! garble! ...I’m sure we’ll sort it all out in the end, so no worries. But in the meantime, you just gotta pack a little extra patience. Look forward to seeing you at the next chat!
    Best,
    Kirk
  3. Like
    Kirk S. got a reaction from Tracey_66 in November HearPeers Virtual Coffee Chat   
    Hi Everybody. Can’t quite see Mt. Fuji in this photo from Saturday, but it’s there in the distance. Nice sunset nonetheless, I think. Will send another once the peak is covered in snow. A classic. Cheers! 

  4. Like
    Kirk S. got a reaction from Mary Beth in November HearPeers Virtual Coffee Chat   
    Hi Everybody. Can’t quite see Mt. Fuji in this photo from Saturday, but it’s there in the distance. Nice sunset nonetheless, I think. Will send another once the peak is covered in snow. A classic. Cheers! 

  5. Like
    Kirk S. got a reaction from Joan in November HearPeers Virtual Coffee Chat   
    Hi Everybody. Can’t quite see Mt. Fuji in this photo from Saturday, but it’s there in the distance. Nice sunset nonetheless, I think. Will send another once the peak is covered in snow. A classic. Cheers! 

  6. Like
    Kirk S. got a reaction from Megan L. in November HearPeers Virtual Coffee Chat   
    Hi Everybody. Can’t quite see Mt. Fuji in this photo from Saturday, but it’s there in the distance. Nice sunset nonetheless, I think. Will send another once the peak is covered in snow. A classic. Cheers! 

  7. Like
    Kirk S. got a reaction from Megan L. in November HearPeers Virtual Coffee Chat   
    Hi Mary Beth.
    Thanks for the quick reply! Yes, I’m a bit baffled by the process, too. Indeed, the Japanese audiologists use the same MEDEL scale charts that you linked to me for setting the sound levels per channel (though not individual electrodes, so far). But the sound quality through my Rondo 2 remains poor, nonetheless. Basically, it’s just garble and static, both through the air and the through the telecoil. In other words, the sound “quantity” is fine, but the sound “quality” is not. I have no idea why.
    I had thought the problem might be with the word recognition process. I’ve seen YouTube and MEDEL videos in which audiologists play a recorded sound or phrase and then ask the patient, “How’s that sound?” And together the patient and audiologist make adjustments until they agree on something that sounds about right.
    I’ve tried that with the Japanese audiologists, but it’s difficult for me to figure out how a specific Japanese or English word or phrase is supposed to sound to the audiologist. And it’s difficult for the audiologist to figure out how a specific Japanese or English word or phrase is supposed to sound to me.
    For example, the Japanese pronounce the word “coffee” as “KOH-hee”. And they pronounce “beer” as “BEE-roo.” “Strawberry” is “stu-LAW-belii”. So they expect me to pronounce and perceive them the same way, and no amount of explanation will convince them otherwise. It gets rather confusing. I would give anything for an audiologist with a Midwest accent!
    In any case, we’ll give it another try this week and I’ll let you know how it goes. If you have any other ideas, please let me know. Thanks!
    Best, Kirk
     
  8. Like
    Kirk S. got a reaction from Megan L. in November HearPeers Virtual Coffee Chat   
    Hi Mary Beth.  

    This is just a quick note to say “Hello” and to let you and our chat group know that I was released from the hospital yesterday and am now comfortably back home.

    I was in the hospital for 18 days altogether, which was a little longer than expected but shorter than it could have been. The doctors managed to restore a significant amount of the hearing that I lost on my “good side” (left side); I regained from 15dB to 25dB through the low and mid tones. That has restored basic, functional hearing on my left side (I wear my CI on the right side.) So that’s good news. 

    On the downside, we were not able to restore all that I lost. So overall, my hearing is about 10dB to 15dB weaker than it was a couple months ago. That’s just good enough for basic communication, but not much else. 

    Nonetheless, we’re continuing heavy corticosteroid treatment on an out-patient basis and if past experience applies, my hearing should slowly improve in the months ahead. We’ll keep our fingers crossed about that.

    The doctors are still not sure what’s causing my problems. I’ll skip the details. But they are increasingly convinced that I have an unusual form of steroid deficiency, possibly associated with blast damage during the Iraq War about a dozen years ago (which is when my hearing problems began), with one or two other complications of unknown origin. 

    Clearly they are working hard on it. They’ve gone through the whole SNHL playbook, with limited success, and now they’re filling in the blank pages in the back. It seems that my hearing remains relatively stable as long as I’m taking at least 5mg or so per day of Prednisone. But once we reduce below that, my hearing seems to fail quickly. Then they need to pump me full of the stuff for a few weeks or months, then slowly reduce to a manageable level.

    Corticosteroids can produce a range of side effects in large dosages, so that’s why they want me under close hospital supervision during the initial phase. Japanese hospitals are not a major hardship, by they way: Modern, well-staffed, well-maintained. Low cost. Good food. Can’t complain.

    So, I’m back home now. Tokyo’s summer heat has been replaced with cool autumn temperatures. We’re getting glorious sunsets behind Mount Fuji in distance. COVID remains a lingering threat, but nowhere near the disaster in the States and EU.

    So, this week and returning attention to my Rondo 2, which is implanted on my right side. We’re still using the default settings, which unfortunately produce little more than garble. My “initial activation” was in January and my “second activation” was in July, at a different audiology center. Little success with either, so far. 

    I have an appointment with my new audiologists later this week and we hope to do an actual custom mapping. But I have my doubts. The audiologists are not English-speaking and experience so far tells me that CI recipients need to have the mapping done in their native language with native speakers. Otherwise too much gets lost in translation, and mispronunciation. It seems likely I’ll have to wait for the COVID crisis to pass before I can head home for the States and get an effective mapping done there. We’ll see. 

    If you or any of our chat group have an opinion on that, please let me know.

    I promised that this was going to be a “quick note”, so I guess I’ve already exceeded my limit. I look forward to seeing you and the rest of the group during our next chat in two weeks! 

    Best,
    Kirk
     
  9. Like
    Kirk S. got a reaction from Kylie in November HearPeers Virtual Coffee Chat   
    Hi Mary Beth.  

    This is just a quick note to say “Hello” and to let you and our chat group know that I was released from the hospital yesterday and am now comfortably back home.

    I was in the hospital for 18 days altogether, which was a little longer than expected but shorter than it could have been. The doctors managed to restore a significant amount of the hearing that I lost on my “good side” (left side); I regained from 15dB to 25dB through the low and mid tones. That has restored basic, functional hearing on my left side (I wear my CI on the right side.) So that’s good news. 

    On the downside, we were not able to restore all that I lost. So overall, my hearing is about 10dB to 15dB weaker than it was a couple months ago. That’s just good enough for basic communication, but not much else. 

    Nonetheless, we’re continuing heavy corticosteroid treatment on an out-patient basis and if past experience applies, my hearing should slowly improve in the months ahead. We’ll keep our fingers crossed about that.

    The doctors are still not sure what’s causing my problems. I’ll skip the details. But they are increasingly convinced that I have an unusual form of steroid deficiency, possibly associated with blast damage during the Iraq War about a dozen years ago (which is when my hearing problems began), with one or two other complications of unknown origin. 

    Clearly they are working hard on it. They’ve gone through the whole SNHL playbook, with limited success, and now they’re filling in the blank pages in the back. It seems that my hearing remains relatively stable as long as I’m taking at least 5mg or so per day of Prednisone. But once we reduce below that, my hearing seems to fail quickly. Then they need to pump me full of the stuff for a few weeks or months, then slowly reduce to a manageable level.

    Corticosteroids can produce a range of side effects in large dosages, so that’s why they want me under close hospital supervision during the initial phase. Japanese hospitals are not a major hardship, by they way: Modern, well-staffed, well-maintained. Low cost. Good food. Can’t complain.

    So, I’m back home now. Tokyo’s summer heat has been replaced with cool autumn temperatures. We’re getting glorious sunsets behind Mount Fuji in distance. COVID remains a lingering threat, but nowhere near the disaster in the States and EU.

    So, this week and returning attention to my Rondo 2, which is implanted on my right side. We’re still using the default settings, which unfortunately produce little more than garble. My “initial activation” was in January and my “second activation” was in July, at a different audiology center. Little success with either, so far. 

    I have an appointment with my new audiologists later this week and we hope to do an actual custom mapping. But I have my doubts. The audiologists are not English-speaking and experience so far tells me that CI recipients need to have the mapping done in their native language with native speakers. Otherwise too much gets lost in translation, and mispronunciation. It seems likely I’ll have to wait for the COVID crisis to pass before I can head home for the States and get an effective mapping done there. We’ll see. 

    If you or any of our chat group have an opinion on that, please let me know.

    I promised that this was going to be a “quick note”, so I guess I’ve already exceeded my limit. I look forward to seeing you and the rest of the group during our next chat in two weeks! 

    Best,
    Kirk
     
  10. Like
    Kirk S. got a reaction from Megan L. in November HearPeers Virtual Coffee Chat   
    I’ll be there! Sorry I missed you guys this time. Hope you had a great chat. ... Things area going reasonably well at the hospital. With some luck, I should be home on Friday. 
  11. Like
    Kirk S. got a reaction from Joan in November HearPeers Virtual Coffee Chat   
    I’ll be there! Sorry I missed you guys this time. Hope you had a great chat. ... Things area going reasonably well at the hospital. With some luck, I should be home on Friday. 
  12. Like
    Kirk S. got a reaction from Mary Beth in November HearPeers Virtual Coffee Chat   
    I’ll be there! Sorry I missed you guys this time. Hope you had a great chat. ... Things area going reasonably well at the hospital. With some luck, I should be home on Friday. 
  13. Sad
    Kirk S. got a reaction from Kylie in October HearPeers Virtual Coffee Chat   
    Hi Mary Beth. Just a quick heads up that unfortunately won’t be able to attend the HearPeers Virtual Coffee Chat next weekend. I had a hearing test and appointment with my otolaryngologist today and the results were so bad that he ordered me straight into the hospital. It appears that my left-side hearing (the “good side”) suddenly crashed badly over the weekend (after beginning to weaken a couple weeks ago) and my doctor wants me in the hospital straightaway for daily tests, observation, treatment, etc. Maybe surgery, too. He said I should plan on being in the hospital at least a couple weeks. He said he and his team still haven’t been able to figure out what’s wrong (probably several things at once) but he said it’s clear that my hearing is steadily weakening and that we need to do something different. As you may recall, I’ve been taking Prednisone (cortico-steroids, as I’m sure you know) for quite a while and that seems to have helped, but my doctor said today that that approach appears to be at the end of it’s usefulness. Ironically, my cool new Rondo 2 still hasn’t proved effective yet and the COVID-19 crisis has delayed my plans to visit the States to work with experienced, English-speaking audiologists to get that sorted out. So I’m kind of between a rock and hard place. But my doctor and his team are considered the best in Japan and I have full faith in them (especially since the folks at MEEI have endorsed everything they’ve done so far) and they work with Med-El all the time, so I’m sure they’ll sort things out eventually. In the meantime, Japanese hospitals are not bad: well run, well staffed, good food. Can’t complain. I’ll let you know how things work out. In the meantime, please give my best to all at the HPVCC next week! Best, Kirk
  14. Like
    Kirk S. got a reaction from Mary Beth in October HearPeers Virtual Coffee Chat   
    Oh, that’s exactly the kind of advice I need over here, Mary Beth. Thanks! I have an appointment with my new audiologists next week Friday, assuming I’m out of the hospital and I’ll pass it along. Hopefully they are experienced enough to do that. 
  15. Like
    Kirk S. got a reaction from Mary Beth in October HearPeers Virtual Coffee Chat   
    Hi Mary Beth!  Thank you for the note and kind thoughts. Yes, actually, things are going a bit better, though it looks like I’ll remain in the hospital through next week. They put me on a course of heavy cortico-steroids and (mostly) bed rest and it seem like that has more or less stopped the damage to my “good side” for the time being. My left-side lower tones (125Hz and 250Hz) had dropped to -70dB and -65db, but have clawed back up to 55db  and 60dB, respectively, since Monday. The mid-tones had not dropped quite so bad, but have leveled off and have climbed up an average 5db. That’s not great, but better than to continue free fall. Luckily, 2000Hz never wavered from -20dB, so I have retained some minimum functional hearing (my new CI is basically still non-functional at this point). My doctors are still stumped as to the cause and/or causes of the recent crash. There are good reasons to believe I have a perilymph fistula, and they are considering surgery. But some of my symptoms don’t fit that diagnosis and I’ve already had two fistula surgeries, with no clear sign of success with either. A competing or.complementary theory is that I developed a steroid deficiency, which kicks in whenever my oral intake of Prednisone drops below 5mg per day, or so. Trouble is, the Prednisone prevents my hearing from worsening, but doesn’t boost it back to a normal level. Sort of like holding the car from sliding over the cliff, but not getting it back on the road. The doctors are pretty sure that the hair cells are all good, because my hearing returned to virtually normal for a long time after my left-side hearing crashed back in 2017. Plus, no one really knows what serious bomb/concussion damage can do to electrical transmission along the auditory nerve, so that might be part of the problem, too. So I’m kind of like a science project. My doctors are considered the best in Japan (one of the younger guys plans to do advanced studies and teaching at Harvard’s MEEI this year if the COVID situation stabilizes), but they say they’ve never run into anything like this or read anything in the medical literature about it. The plan now is to stay in the hospital for another few days or a week, remain on heavy steroids and see what happens. Hopefully, continued slow improvement. Japanese hospitals are pretty comfortable: well-staffed, well-run, low cost. And best of all: Great Japanese food! Best to all, Kirk
  16. Sad
    Kirk S. got a reaction from Nikki in October HearPeers Virtual Coffee Chat   
    Hi Mary Beth. Just a quick heads up that unfortunately won’t be able to attend the HearPeers Virtual Coffee Chat next weekend. I had a hearing test and appointment with my otolaryngologist today and the results were so bad that he ordered me straight into the hospital. It appears that my left-side hearing (the “good side”) suddenly crashed badly over the weekend (after beginning to weaken a couple weeks ago) and my doctor wants me in the hospital straightaway for daily tests, observation, treatment, etc. Maybe surgery, too. He said I should plan on being in the hospital at least a couple weeks. He said he and his team still haven’t been able to figure out what’s wrong (probably several things at once) but he said it’s clear that my hearing is steadily weakening and that we need to do something different. As you may recall, I’ve been taking Prednisone (cortico-steroids, as I’m sure you know) for quite a while and that seems to have helped, but my doctor said today that that approach appears to be at the end of it’s usefulness. Ironically, my cool new Rondo 2 still hasn’t proved effective yet and the COVID-19 crisis has delayed my plans to visit the States to work with experienced, English-speaking audiologists to get that sorted out. So I’m kind of between a rock and hard place. But my doctor and his team are considered the best in Japan and I have full faith in them (especially since the folks at MEEI have endorsed everything they’ve done so far) and they work with Med-El all the time, so I’m sure they’ll sort things out eventually. In the meantime, Japanese hospitals are not bad: well run, well staffed, good food. Can’t complain. I’ll let you know how things work out. In the meantime, please give my best to all at the HPVCC next week! Best, Kirk
  17. Sad
    Kirk S. got a reaction from Mary Beth in October HearPeers Virtual Coffee Chat   
    Hi Mary Beth. Just a quick heads up that unfortunately won’t be able to attend the HearPeers Virtual Coffee Chat next weekend. I had a hearing test and appointment with my otolaryngologist today and the results were so bad that he ordered me straight into the hospital. It appears that my left-side hearing (the “good side”) suddenly crashed badly over the weekend (after beginning to weaken a couple weeks ago) and my doctor wants me in the hospital straightaway for daily tests, observation, treatment, etc. Maybe surgery, too. He said I should plan on being in the hospital at least a couple weeks. He said he and his team still haven’t been able to figure out what’s wrong (probably several things at once) but he said it’s clear that my hearing is steadily weakening and that we need to do something different. As you may recall, I’ve been taking Prednisone (cortico-steroids, as I’m sure you know) for quite a while and that seems to have helped, but my doctor said today that that approach appears to be at the end of it’s usefulness. Ironically, my cool new Rondo 2 still hasn’t proved effective yet and the COVID-19 crisis has delayed my plans to visit the States to work with experienced, English-speaking audiologists to get that sorted out. So I’m kind of between a rock and hard place. But my doctor and his team are considered the best in Japan and I have full faith in them (especially since the folks at MEEI have endorsed everything they’ve done so far) and they work with Med-El all the time, so I’m sure they’ll sort things out eventually. In the meantime, Japanese hospitals are not bad: well run, well staffed, good food. Can’t complain. I’ll let you know how things work out. In the meantime, please give my best to all at the HPVCC next week! Best, Kirk
  18. Like
    Kirk S. got a reaction from Mary Beth in October HearPeers Virtual Coffee Chat   
    Hi Mary Beth. Thanks for the invite. I’ll be there. Looking forward to it! Best, Kirk
  19. Like
    Kirk S. got a reaction from Mary Beth in Cool new additions to OTOPLAN   
    Hi Mary Beth!
    Thank you for your note. Yes, as a matter of fact, I do like road trips. That was my Plan A for New Mexico: Stay in Santa Fe, then make a quick 60- to 90-minute trip to Albuquerque every week or two for CI appointments, mappings, etc. There’s lots of hiking, biking and skiing in Santa Fe, which I really like, plus the food is great, so I could pass a few months like that pretty easy, even if my wife was stuck back home in Tokyo. Plus the COVID outbreak in New Mexico seems manageable; there’s literally plenty of room there for social distancing. But so far, I haven’t been able to find a top-notch audiology/CI center in the Santa Fe/Albuquerque area. I’m hoping MED-EL USA will come through some recommendations. The University of New Mexico in Albuquerque is pretty big, so you’d think they’d have something useful there. But otherwise, the distances out West are pretty daunting for solo road trips: 6 hours to Denver, 8 hours to Phoenix, 12 hours to L.A. Not much fun driving alone that far ...By the way, Nikki wrote me a very nice reply today and she seems pretty sold on Chapel Hill. But I never really liked the American South and I think I might get bored out of my skull sitting in North Carolina for a few months waiting for my next CI appointment. I’ll let you know how things go this week, and please let me know if you have any other ideas. And don’t forget to start saving for the Tokyo Olympics next summer: It’s just a 14-hour flight from New York! 
    Best,
    Kirk
  20. Like
    Kirk S. got a reaction from Mary Beth in September HP Virtual Coffee Chat   
    Hey, Mary Beth. Count me in, of course. Here’s an idea: Why don’t we suggest that everyone start the meeting with a cup of coffee, tea or whatever they drink wherever they are (although Heaven knows what Kylie and her friends drink in far-off Perth — probably beer!). That’ll keep it friendly, social, convivial. Slurping allowed! Kirk
  21. Like
    Kirk S. got a reaction from Mary Beth in How to find an audiology/mapping center in the U.S.   
    Thanks, Mary Beth! That’s very helpful. I was already thinking about Vanderbilt and Chapel Hill, so I’ll put those high on the list. I’m still hoping to find a location where I currently have friends and where there are outdoor activities. I do a lot of skiing in the winter and hiking and outdoor sports in the summer, so Santa Fe would an ideal place for me, especially since some old friends are retired there. Unfortunately, there don’t seem to be any top-rated ENT/Otolaryngology departments or audiologists in Santa Fe or Albuquerque (which is just an hour away). Presumably, they have some native English speakers there so that’s an improvement over Japan! ...The Med-El folks in Tokyo have not been very helpful in finding an audiologist for me in Japan— but I think that’s mostly a cultural issue. They don’t want to risk offending anyone’s current physician or audiologist by recommending someone else. It seems like the Med_El folks in the U.S. are the same (they just refer me to the Med-El Japan folks!). I’ll let you know if I have any luck. Thanks again for the help. See you on the phone chat next month. Best, Kirk
  22. Like
    Kirk S. got a reaction from Kylie in 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
     
  23. Like
    Kirk S. got a reaction from Mary Beth in August HearPeers Virtual Coffee Chat   
    Hi Mary Beth. Count me in. Thanks! Kirk
  24. Like
    Kirk S. got a reaction from Jewel in 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
     
  25. Like
    Kirk S. got a reaction from Mary Beth in 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
     
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