Guest guest Posted May 13, 2011 Report Share Posted May 13, 2011 Thank you for bringing up some valid points. It is a good for us all to be able to discuss pros/cons and make clarifications when indicated. There are complexities involved in how any one CI patient will do, as success depends on many factors that are hard to quantify or qualify (or compare among patients). And like with any med procedure, there are no total guarantees. Our CI stories often have some common elements, but our experiences are also individual. My first CI was done in 2003 on the ear that heard long ago but had zero word comprehension at surgery time. I worked hard on rehab, using that CI side alone whenever I could and I loved every minute of the experience as I was so thrilled to hear anything. I too heard chipmunk voices for some while, sorry to say I can't recall how long, but at least I could understand words pretty soon with CI alone, even more words while using hearing aid at same time. Over time things got better and better, so much of life was restored to me. Having said that, the sound with my second CI is not nearly as good as side #1. I continue to hear everyone in very LOW pitches on that side (an uncommon story which may well be due to the fact that I still had some decent hearing left in low frequencies at the time that one was inserted, 15 months ago). I also think some of this less good result is because I have not rehabbed or worked that newer CI alone because I went right back to work and use my " good CI " side to function there (and in everyday life). For some months the sound difference between the 2 sides was disconcerting and distracting but they now work together better than if I try to function with my better CI side alone. I do still wish I could hear equally well on both sides, but I think for that to happen I would need to spend significant time on CI #2 alone, though perhaps that would ultimately not work to get rid of the low voice issue. Maybe I might find out when I retire and have time to practice ?! I still can't hear worth a darn in noise, but bottom line is that overall the CIs have been wonderful, not perfect, but woah, incredible compared to before. For some patients, one side simply won't work as well as the other, but those individuals may or may not ever get the chance to find out. I have a friend who had a very poor result on side #1, the CI company got their experts to work with her, she even had a reimplantation etc. Nothing worked. But somehow she got brave enough to try surgery on the other side and.....walked out the door hearing after first activation. That is unusual but attests to fact that there are many complexities involved in the outcomes, plus significant reason to pursue all options. If those of us on this listserve bring up all relevant questions/concerns, it gives us a chance to consider many different angles and suggestions like those that made to -- consider getting second/third opinions, hang in there etc. Thanks for your note. I look fwd to reading comments by others too. Deb _____________ Hello, I've been hesitant to post any messages here, because the last thing I want to do is create any negativity relating to CIs. Obviously, from everyone's posts, the CI process is highly successful and has greatly improved the lives of most people. However, I am one of the few people that, after over a year of having my implant, am still hearing chipmunk voices and constant high-pitched tones, even after repeated mapping sessions. My comprehension is still poor too. The device has been tested, and CT scans have been conducted, yet everything looks normal. So audiologists are stumped. The last visit I had, my audiologist confided that even if my comprehension improves, if the sound quality is still poor after all this time, it's not likely to get much better. So I may be stuck hearing this high-pitched squawking forever, unless I decide to just stop wearing the implant. I do not want to discourage anyone from getting an implant, because I know from the stats, from all the posts here, and from everyone I personally know that has one, that the results are usually miraculous and wonderful. I fully believe in the process. But part of me also wishes that I had heard more of the less successful stories when I was doing all my initial research. I may be part of the 1% or less who have had less than thrilling results, but I still think people should be aware of the possibilities. - ____________ __ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2011 Report Share Posted May 14, 2011 Interesting some hear better with first CI while I am the opposite. With 2nd CI I understood speech right away, whereas it was a struggle with the firt CI. We're all different. -------------------------------------------------- From: " Deborah Herczog " <dherczog@...> Sent: Friday, May 13, 2011 9:53 PM < > Subject: hearing with CI, to > Thank you for bringing up some valid points. It is a good for us > all to > be able to discuss pros/cons and make clarifications when indicated. > > There are complexities involved in how any one CI patient will do, as > success > depends on many factors that are hard to quantify or qualify (or compare > among > patients). And like with any med procedure, there are no total > guarantees. Our > CI stories often have some common elements, but our experiences are also > individual. > > My first CI was done in 2003 on the ear that heard long ago but had zero > word > comprehension at surgery time. I worked hard on rehab, using that CI side > alone > whenever I could and I loved every minute of the experience as I was so > thrilled > to hear anything. I too heard chipmunk voices for some while, sorry to > say I > can't recall how long, but at least I could understand words pretty soon > with > CI alone, even more words while using hearing aid at same time. Over time > things got better and better, so much of life was restored to me. > > Having said that, the sound with my second CI is not nearly as good as > side #1. > I continue to hear everyone in very LOW pitches on that side (an uncommon > story which may well be due to the fact that I still had some decent > hearing > left in low frequencies at the time that one was inserted, 15 months ago). > I > also think some of this less good result is because I have not rehabbed or > worked that newer CI alone because I went right back to work and use my > " good > CI " side to function there (and in everyday life). For some months the > sound > difference between the 2 sides was disconcerting and distracting but they > now > work together better than if I try to function with my better CI side > alone. I > do still wish I could hear equally well on both sides, but I think for > that to > happen I would need to spend significant time on CI #2 alone, though > perhaps > that would ultimately not work to get rid of the low voice issue. Maybe I > might > find out when I retire and have time to practice ?! > > I still can't hear worth a darn in noise, but bottom line is that overall > the > CIs have been wonderful, not perfect, but woah, incredible compared to > before. > > > For some patients, one side simply won't work as well as the other, but > those > individuals may or may not ever get the chance to find out. I have a > friend > who had a very poor result on side #1, the CI company got their experts to > work > with her, she even had a reimplantation etc. Nothing worked. But > somehow she > got brave enough to try surgery on the other side and.....walked out the > door > hearing after first activation. That is unusual but attests to fact that > there > are many complexities involved in the outcomes, plus significant reason to > pursue all options. > > If those of us on this listserve bring up all relevant questions/concerns, > it > gives us a chance to consider many different angles and suggestions like > those > that made to -- consider getting second/third opinions, hang in > there > etc. > > > Thanks for your note. I look fwd to reading comments by others too. > > > Deb > > _____________ > > Hello, > > I've been hesitant to post any messages here, because the last thing I > want to > do is create any negativity relating to CIs. Obviously, from everyone's > posts, > the CI process is highly successful and has greatly improved the lives of > most > people. However, I am one of the few people that, after over a year of > having my > implant, am still hearing chipmunk voices and constant high-pitched > tones, even > after repeated mapping sessions. My comprehension is still poor too. The > device > has been tested, and CT scans have been conducted, yet everything looks > normal. > So audiologists are stumped. The last visit I had, my audiologist > confided that > even if my comprehension improves, if the sound quality is still poor > after all > this time, it's not likely to get much better. So I may be stuck hearing > this > high-pitched squawking forever, unless I decide to just stop wearing the > implant. > > I do not want to discourage anyone from getting an implant, because I > know from > the stats, from all the posts here, and from everyone I personally know > that has > one, that the results are usually miraculous and wonderful. I fully > believe in > the process. But part of me also wishes that I had heard more of the less > > successful stories when I was doing all my initial research. I may be > part of > the 1% or less who have had less than thrilling results, but I still > think > people should be aware of the possibilities. > > - > ____________ __ > > Quote Link to comment Share on other sites More sharing options...
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