Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I'm sorry for all you've gone (are going) through, . I wouldn't have let them go back in to " fix " mine had it not worked. Mine happens to work pretty good, yours hopefully will too. I certainly get more than beeps and trombone blasts (except for when the DTV chanel landed on a 9 Inch Nails concert.) None of you can outweigh the benefit (decide to get one or not bc you don't want just " beeps " you want more..) unless you know what it's like having one. Many of yall will run out and pay big bucks for a tactile device or anything else that'll make you " hear " again or communicate easier, the ABI is many steps above that (tactile) and even better than the " hearing " I had with my hearing aid. It's too bad they can't hook something up to us to show " this is what you're getting, do you want it? " I agree with not going under the knife a 2nd time for a " fix " or messing with recurring/scar tissue if that's your reason. But if you start throwing in the bit about " I'm well adjusted " it sounds like you are passing on the ABI for that reason, or bc beeps aren't good enough. , when do you go back? I'm no pro with mine but I love it. I hear EVERYTHING, some clear, *many* not clear. I can hear a pin drop. <tic> I know if I leave the water running (I don't now) or if the washer n dryer are still going. I hear ppl talk to me even if they're behind me. I can hear my puppies playing and the grunt sounds I haven't heard in so long. It sounds very much like ... growls I haven't heard in so long. I can hear someone knock <tap tap tap> w/o mising ppl @ the door or depending on jumping dogs to tell me. Not natural hearing, but since when are we... greedy about our sounds? If you wannabe a natural again, forget it. Otherwise, it's a blessing. I'm on the defense cause I'm new, give me a while and then I'll just pass on these threads. lol BTW, Marie, anyone? I've discovered some neat tips on how to wear mine if you are having any problems. , wana start that eye thread we talked about @ Denny's? Now that all of that is out of the way, HAPPY BIRTHDAY, JASON! C (through defending the abi for the well adjusted ppl that keep posting how they don't want it) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Being total deafened for going on 10 years it literally gives me chills reading this. Very happy you have success Carla, lord knows we take a lot of crap and its nice to see some good news once in a while. > I'm sorry for all you've gone (are going) through, . I wouldn't have > let them go back in to " fix " mine had it not worked. Mine happens to work > pretty good, yours hopefully will too. I certainly get more than beeps and > trombone blasts (except for when the DTV chanel landed on a 9 Inch Nails > concert.) None of you can outweigh the benefit (decide to get one or not bc > you don't want just " beeps " you want more..) unless you know what it's like > having one. Many of yall will run out and pay big bucks for a tactile device > or anything else that'll make you " hear " again or communicate easier, the ABI > is many steps above that (tactile) and even better than the " hearing " I had > with my hearing aid. It's too bad they can't hook something up to us to show > " this is what you're getting, do you want it? " I agree with not going under > the knife a 2nd time for a " fix " or messing with recurring/scar tissue if > that's your reason. But if you start throwing in the bit about " I'm well > adjusted " it sounds like you are passing on the ABI for that reason, or bc > beeps aren't good enough. > , when do you go back? I'm no pro with mine but I love it. I hear > EVERYTHING, some clear, *many* not clear. I can hear a pin drop. <tic> I > know if I leave the water running (I don't now) or if the washer n dryer are > still going. I hear ppl talk to me even if they're behind me. I can hear my > puppies playing and the grunt sounds I haven't heard in so long. It sounds > very much like ... growls I haven't heard in so long. I can hear someone > knock <tap tap tap> w/o mising ppl @ the door or depending on jumping dogs to > tell me. Not natural hearing, but since when are we... greedy about our > sounds? If you wannabe a natural again, forget it. Otherwise, it's a > blessing. I'm on the defense cause I'm new, give me a while and then I'll > just pass on these threads. lol BTW, Marie, anyone? I've discovered some > neat tips on how to wear mine if you are having any problems. > , wana start that eye thread we talked about @ Denny's? > Now that all of that is out of the way, HAPPY BIRTHDAY, JASON! > C (through defending the abi for the well adjusted ppl that keep posting how > they don't want it) > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 In a message dated 3/15/02 12:07:12 PM Central Standard Time, cinnyd@... writes: To be fair, I want to say... I went in healthy other than dizziness. My tumor wasn't huge but big enough I had major symptoms (that's why I did surgery). It was not a regrowth. I have had many NF related surgeries now and have done pretty well with all of them, so that was a plus. It costs nothing more to get than doing the surgery w/o it. I could have went back for testing and not been successful. I was prepared for that, too. It was a bonus, just bc I needed a tumor out. I can't lip read as well as I'd hoped, but SOUND is wonderful and I'm at least lipreading better than w/o sound. I researched it for 5 years through the net and through you guys, to do in Dallas (even saw the ABI team here) or in LA. Lots of thought. Since I'm on such a roll, does anyone have Marilyn D's email address? lol << Being total deafened for going on 10 years it literally gives me chills reading this. Very happy you have success Carla, lord knows we take a lot of crap and its nice to see some good news once in a while. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I never said everyone will be perfect, I never said I was, I never said oh heck JL, it's ok to do it with regrowths. But I want the ppl who are still making decisions to see the " pro side " as well. (notice my subject line?) I think and some others are helping cover the negative stuff, why can't I be one to cover the positive? I never said YOU should go get one. I know you have a regrowth up there, I don't think I would do one with that either. BUT you shouldn't knock the type of sound it gives until you've heard it yourself, it's a whole diff world even though we're still deaf. lol I never said you should run and get one JL, calm down. Damn right, warm and fuzzy. You haven't had a surgery since I've known you, I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a chance like this! << " None of you can outweigh the benefit (decide to get one or not bc you don't want just " beeps " you want more..) unless you know what it's like having one. " Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, Carla, but people need to be aware that BAD thing happen too. There is no reason why ppl like me shouldn't be able to say " I don't want to risk having a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll be able to detect sounds that I've gone without for 11 years. If it was guaranteed to work and guaranteed that I wouldn't have serious complications during surgery, then I would go for it. If you're happy and well adjusted to deafness, why take the risks involved with major brain surgery? Until I see more success stories with implanting during RECURRENT AN surgery, I'll just pass, thank you very much. na <-- in defense of not messing with my HEALTH >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I never said everyone will be perfect, I never said I was, I never said oh heck JL, it's ok to do it with regrowths. But I want the ppl who are still making decisions to see the " pro side " as well. (notice my subject line?) I think and some others are helping cover the negative stuff, why can't I be one to cover the positive? I never said YOU should go get one. I know you have a regrowth up there, I don't think I would do one with that either. BUT you shouldn't knock the type of sound it gives until you've heard it yourself, it's a whole diff world even though we're still deaf. lol I never said you should run and get one JL, calm down. Damn right, warm and fuzzy. You haven't had a surgery since I've known you, I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a chance like this! << " None of you can outweigh the benefit (decide to get one or not bc you don't want just " beeps " you want more..) unless you know what it's like having one. " Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, Carla, but people need to be aware that BAD thing happen too. There is no reason why ppl like me shouldn't be able to say " I don't want to risk having a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll be able to detect sounds that I've gone without for 11 years. If it was guaranteed to work and guaranteed that I wouldn't have serious complications during surgery, then I would go for it. If you're happy and well adjusted to deafness, why take the risks involved with major brain surgery? Until I see more success stories with implanting during RECURRENT AN surgery, I'll just pass, thank you very much. na <-- in defense of not messing with my HEALTH >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Right on. Let's all talk then. It seemed you were the only one posting, so I posted to brighten up the pro side, constructive to show all sides, esp when we are suppose to welcome diff thoughts/experiences here. I don't think HEI is being unfair in what they " preach " . I saw the ABI team in Dallas too and for *me* it was a pretty good situation, my being a candidate, but clearly LA was the place to go. " Everyone knows the pros? " Well then why are you posting about the negs? Everyone knows those as well. We've discussed all this before, but *I* haven't had a chance to talk freely about my ABI experience, bc I've only had it 16 days! Can I not do that here? I thought there'd be interest, esp in the ppl who are making decisions now. Yes, they do tell you the risks and the fact is things can happen with a normal run of the mill AN REMOVAL. And no, I do believe the success rate of the ABI is higher. I heard (unconfirmed stat here) that less than 10% will not work at time of turn on (at least at HEI). I know a few of those, I know many-a-few of the majority. This was told to me before I had surgery. " they can stand up for themselves? " What is that??? Am I not entitled to brag about what I'm getting? You can run the thing in the ground, I can't brag about my success story? Wow! Ppl can know the negatives on this list all you like, but guess what? They aren't going to miss my positives. << Everybody KNOWS the pros! Heck, HEI will sing the praises of the ABI till they are blue in the face, but unless you ask the right questions, no one will tell you what could happen. They don't tell you about all their horror stories, do they? Its places like this that we need to hear about EVERYTHING that could or couldn't happen. My person feeling right now is that hearing is a wonderful great luxury (for ME,) and am I willing to risk my health and my way of life so that I can have this luxury back? No, not at this point. You're right, I'm talking about me, and surely everyone here understands that everything I say is MHO. For all the ppl like you who adore their abi, there are just as many whose ABI's don't work, had complications during surgery, who don't like it and don't wear it. I think the negatives should be discussed as well as the positives. You don't have to defend being able to hear the water running, hear a pin drop (??), hear the microwave beep, hear the doorbell ring etc etc, they can stand up for themselves. People need to know the negs of the ABI too. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Right on. Let's all talk then. It seemed you were the only one posting, so I posted to brighten up the pro side, constructive to show all sides, esp when we are suppose to welcome diff thoughts/experiences here. I don't think HEI is being unfair in what they " preach " . I saw the ABI team in Dallas too and for *me* it was a pretty good situation, my being a candidate, but clearly LA was the place to go. " Everyone knows the pros? " Well then why are you posting about the negs? Everyone knows those as well. We've discussed all this before, but *I* haven't had a chance to talk freely about my ABI experience, bc I've only had it 16 days! Can I not do that here? I thought there'd be interest, esp in the ppl who are making decisions now. Yes, they do tell you the risks and the fact is things can happen with a normal run of the mill AN REMOVAL. And no, I do believe the success rate of the ABI is higher. I heard (unconfirmed stat here) that less than 10% will not work at time of turn on (at least at HEI). I know a few of those, I know many-a-few of the majority. This was told to me before I had surgery. " they can stand up for themselves? " What is that??? Am I not entitled to brag about what I'm getting? You can run the thing in the ground, I can't brag about my success story? Wow! Ppl can know the negatives on this list all you like, but guess what? They aren't going to miss my positives. << Everybody KNOWS the pros! Heck, HEI will sing the praises of the ABI till they are blue in the face, but unless you ask the right questions, no one will tell you what could happen. They don't tell you about all their horror stories, do they? Its places like this that we need to hear about EVERYTHING that could or couldn't happen. My person feeling right now is that hearing is a wonderful great luxury (for ME,) and am I willing to risk my health and my way of life so that I can have this luxury back? No, not at this point. You're right, I'm talking about me, and surely everyone here understands that everything I say is MHO. For all the ppl like you who adore their abi, there are just as many whose ABI's don't work, had complications during surgery, who don't like it and don't wear it. I think the negatives should be discussed as well as the positives. You don't have to defend being able to hear the water running, hear a pin drop (??), hear the microwave beep, hear the doorbell ring etc etc, they can stand up for themselves. People need to know the negs of the ABI too. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I never said (or meant to) you were anit-ABI. I can tell from your drive to get everything done, you are just the opposite. Yet you're also one of those well adjusted folk, so I can't wait to here your report. I only wanted to show my side that it's not always a bitch to do it, my surgery went smoother than my first without the ABI. And it's much more than horns (hopefully) for you. The CDs may discourage you, the traffic around the clinic will discourage you at first. Music isn't great for me. Someone said " techno " was awesome but that's not for me, so I won't even try. I am looking for " acapello " versions of songs I like. The instruments seem to block out the voice for me when I try music, but voices are great. I would love to find a CD of Bette Midler with very little music but lotsa voice. If yours works AT ALL, you'll hear your sister's baby. My baby (min pin) drives me nuts. He's probably wondering why I never noticed his barking before. 8) << Carla, I think you missed my clarification message. I'm not anti-ABI. My negative outcome was more the result of them removing the implant from my brainstem, I believe. I would advise poeple not to do that, as up till now, what I've gone through hasn't been worth it. (Ask me after I get hooked up). However, when it comes to implantation with tumour removal, I say go nuts =) It is worth it in that case. Soon we'll have the option to do just implantation itself, and then there's going to be a big debate, I am sure. The ABI does have a lot of potential for good. I'm looking forward to possibly hearing my sister's baby crying in April (I get hooked up April 9). And the benefits of not getting run over by a bus or firetruck are also clearly important. My ABI should work better than most as it was not placed during a tumour removal. However, we'll see in three weeks. (I'm bringing lots of CDs to HEI with me ;-) Hugs, >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Understood. I'd feel the same way if I was you. Mine was a " goin-in-any-way " , therefore I hadta do it. To good for me to pass up. In on Tues, out by Fri noon. I'm still deaf, but I like what I get, neatest gadget I've every had. C, was NeutralABI before surgery. << I realize this was to , but I'm not anti-ABI either. I'm just anti-surgery-to-implant-the-ABI. na >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 pray for no regrowths carla. I cud NOT BELIEVE when my dr told me I have tiny regrowths on BOTH sides 6 months ago, pissed to saythe least, depressed and annmoyed, I was under impression they were out and not come back. what happens if u have regrowths? anybody with abi have that??? Again, Im jealous as hell but very happy you can make great use of it, Id have gone foor it too in your situation. cindy Understood. I'd feel the same way if I was you. > Mine was a " goin-in-any-way " , therefore I hadta do it. To good for me to > pass up. In on Tues, out by Fri noon. I'm still deaf, but I like what I > get, neatest gadget I've every had. > C, was NeutralABI before surgery. > << I realize this was to , but I'm not anti-ABI either. I'm just > anti-surgery-to-implant-the-ABI. > > na >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 pray for no regrowths carla. I cud NOT BELIEVE when my dr told me I have tiny regrowths on BOTH sides 6 months ago, pissed to saythe least, depressed and annmoyed, I was under impression they were out and not come back. what happens if u have regrowths? anybody with abi have that??? Again, Im jealous as hell but very happy you can make great use of it, Id have gone foor it too in your situation. cindy Understood. I'd feel the same way if I was you. > Mine was a " goin-in-any-way " , therefore I hadta do it. To good for me to > pass up. In on Tues, out by Fri noon. I'm still deaf, but I like what I > get, neatest gadget I've every had. > C, was NeutralABI before surgery. > << I realize this was to , but I'm not anti-ABI either. I'm just > anti-surgery-to-implant-the-ABI. > > na >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 lolllll, im eating pop corn here at mydesk on this lazyyyyyy friday with both bosses out today. i thought it was very inforative on both sides:) Is it stopping?? I was > just making popcorn:)~~Lowi > Re: Pro side of ABI > > > > > > > > > I never said everyone will be perfect, I never said I was, I never said > oh > > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > > still > > > making decisions to see the " pro side " as well. (notice my subject > line?) > > > I > > > think and some others are helping cover the negative stuff, why > > can't > > > I > > > be one to cover the positive? I never said YOU should go get one. I > know > > > you have a regrowth up there, I don't think I would do one with that > > either. > > > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > > yourself, it's a whole diff world even though we're still deaf. lol I > > never > > > > > > said you should run and get one JL, calm down. > > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > > you, > > > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin > a > > > chance like this! > > > > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > > you don't want just " beeps " you want more..) unless you know what it's > > like > > > > > > having one. " > > > > > > Yeah... I can! Its very warm and fuzzy what you seem to be > experiencing, > > > Carla, but people need to be aware that BAD thing happen too. There is > > no > > > reason why ppl like me shouldn't be able to say " I don't want to risk > > > having > > > a stomach tube or not being able to swallow or WORSE " just so MAYBE > I'll > > be > > > able to detect sounds that I've gone without for 11 years. If it was > > > guaranteed to work and guaranteed that I wouldn't have serious > > > complications > > > during surgery, then I would go for it. If you're happy and well > > adjusted > > > to deafness, why take the risks involved with major brain surgery? > Until > > I > > > see more success stories with implanting during RECURRENT AN surgery, > > I'll > > > just pass, thank you very much. > > > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 lolllll, im eating pop corn here at mydesk on this lazyyyyyy friday with both bosses out today. i thought it was very inforative on both sides:) Is it stopping?? I was > just making popcorn:)~~Lowi > Re: Pro side of ABI > > > > > > > > > I never said everyone will be perfect, I never said I was, I never said > oh > > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > > still > > > making decisions to see the " pro side " as well. (notice my subject > line?) > > > I > > > think and some others are helping cover the negative stuff, why > > can't > > > I > > > be one to cover the positive? I never said YOU should go get one. I > know > > > you have a regrowth up there, I don't think I would do one with that > > either. > > > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > > yourself, it's a whole diff world even though we're still deaf. lol I > > never > > > > > > said you should run and get one JL, calm down. > > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > > you, > > > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin > a > > > chance like this! > > > > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > > you don't want just " beeps " you want more..) unless you know what it's > > like > > > > > > having one. " > > > > > > Yeah... I can! Its very warm and fuzzy what you seem to be > experiencing, > > > Carla, but people need to be aware that BAD thing happen too. There is > > no > > > reason why ppl like me shouldn't be able to say " I don't want to risk > > > having > > > a stomach tube or not being able to swallow or WORSE " just so MAYBE > I'll > > be > > > able to detect sounds that I've gone without for 11 years. If it was > > > guaranteed to work and guaranteed that I wouldn't have serious > > > complications > > > during surgery, then I would go for it. If you're happy and well > > adjusted > > > to deafness, why take the risks involved with major brain surgery? > Until > > I > > > see more success stories with implanting during RECURRENT AN surgery, > > I'll > > > just pass, thank you very much. > > > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 lolllll, im eating pop corn here at mydesk on this lazyyyyyy friday with both bosses out today. i thought it was very inforative on both sides:) Is it stopping?? I was > just making popcorn:)~~Lowi > Re: Pro side of ABI > > > > > > > > > I never said everyone will be perfect, I never said I was, I never said > oh > > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > > still > > > making decisions to see the " pro side " as well. (notice my subject > line?) > > > I > > > think and some others are helping cover the negative stuff, why > > can't > > > I > > > be one to cover the positive? I never said YOU should go get one. I > know > > > you have a regrowth up there, I don't think I would do one with that > > either. > > > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > > yourself, it's a whole diff world even though we're still deaf. lol I > > never > > > > > > said you should run and get one JL, calm down. > > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > > you, > > > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin > a > > > chance like this! > > > > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > > you don't want just " beeps " you want more..) unless you know what it's > > like > > > > > > having one. " > > > > > > Yeah... I can! Its very warm and fuzzy what you seem to be > experiencing, > > > Carla, but people need to be aware that BAD thing happen too. There is > > no > > > reason why ppl like me shouldn't be able to say " I don't want to risk > > > having > > > a stomach tube or not being able to swallow or WORSE " just so MAYBE > I'll > > be > > > able to detect sounds that I've gone without for 11 years. If it was > > > guaranteed to work and guaranteed that I wouldn't have serious > > > complications > > > during surgery, then I would go for it. If you're happy and well > > adjusted > > > to deafness, why take the risks involved with major brain surgery? > Until > > I > > > see more success stories with implanting during RECURRENT AN surgery, > > I'll > > > just pass, thank you very much. > > > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 " None of you can outweigh the benefit (decide to get one or not bc you don't want just " beeps " you want more..) unless you know what it's like having one. " Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, Carla, but people need to be aware that BAD thing happen too. There is no reason why ppl like me shouldn't be able to say " I don't want to risk having a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll be able to detect sounds that I've gone without for 11 years. If it was guaranteed to work and guaranteed that I wouldn't have serious complications during surgery, then I would go for it. If you're happy and well adjusted to deafness, why take the risks involved with major brain surgery? Until I see more success stories with implanting during RECURRENT AN surgery, I'll just pass, thank you very much. na <-- in defense of not messing with my HEALTH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Carla, I think you missed my clarification message. I'm not anti-ABI. My negative outcome was more the result of them removing the implant from my brainstem, I believe. I would advise poeple not to do that, as up till now, what I've gone through hasn't been worth it. (Ask me after I get hooked up). However, when it comes to implantation with tumour removal, I say go nuts =) It is worth it in that case. Soon we'll have the option to do just implantation itself, and then there's going to be a big debate, I am sure. The ABI does have a lot of potential for good. I'm looking forward to possibly hearing my sister's baby crying in April (I get hooked up April 9). And the benefits of not getting run over by a bus or firetruck are also clearly important. My ABI should work better than most as it was not placed during a tumour removal. However, we'll see in three weeks. (I'm bringing lots of CDs to HEI with me ;-) Hugs, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I'm done giving my thoughts and feelings about being implanted with the ABI. Thank you. na Re: Pro side of ABI Right on. Let's all talk then. It seemed you were the only one posting, so I posted to brighten up the pro side, constructive to show all sides, esp when we are suppose to welcome diff thoughts/experiences here. I don't think HEI is being unfair in what they " preach " . I saw the ABI team in Dallas too and for *me* it was a pretty good situation, my being a candidate, but clearly LA was the place to go. " Everyone knows the pros? " Well then why are you posting about the negs? Everyone knows those as well. We've discussed all this before, but *I* haven't had a chance to talk freely about my ABI experience, bc I've only had it 16 days! Can I not do that here? I thought there'd be interest, esp in the ppl who are making decisions now. Yes, they do tell you the risks and the fact is things can happen with a normal run of the mill AN REMOVAL. And no, I do believe the success rate of the ABI is higher. I heard (unconfirmed stat here) that less than 10% will not work at time of turn on (at least at HEI). I know a few of those, I know many-a-few of the majority. This was told to me before I had surgery. " they can stand up for themselves? " What is that??? Am I not entitled to brag about what I'm getting? You can run the thing in the ground, I can't brag about my success story? Wow! Ppl can know the negatives on this list all you like, but guess what? They aren't going to miss my positives. << Everybody KNOWS the pros! Heck, HEI will sing the praises of the ABI till they are blue in the face, but unless you ask the right questions, no one will tell you what could happen. They don't tell you about all their horror stories, do they? Its places like this that we need to hear about EVERYTHING that could or couldn't happen. My person feeling right now is that hearing is a wonderful great luxury (for ME,) and am I willing to risk my health and my way of life so that I can have this luxury back? No, not at this point. You're right, I'm talking about me, and surely everyone here understands that everything I say is MHO. For all the ppl like you who adore their abi, there are just as many whose ABI's don't work, had complications during surgery, who don't like it and don't wear it. I think the negatives should be discussed as well as the positives. You don't have to defend being able to hear the water running, hear a pin drop (??), hear the microwave beep, hear the doorbell ring etc etc, they can stand up for themselves. People need to know the negs of the ABI too. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I'm done giving my thoughts and feelings about being implanted with the ABI. Thank you. na Re: Pro side of ABI Right on. Let's all talk then. It seemed you were the only one posting, so I posted to brighten up the pro side, constructive to show all sides, esp when we are suppose to welcome diff thoughts/experiences here. I don't think HEI is being unfair in what they " preach " . I saw the ABI team in Dallas too and for *me* it was a pretty good situation, my being a candidate, but clearly LA was the place to go. " Everyone knows the pros? " Well then why are you posting about the negs? Everyone knows those as well. We've discussed all this before, but *I* haven't had a chance to talk freely about my ABI experience, bc I've only had it 16 days! Can I not do that here? I thought there'd be interest, esp in the ppl who are making decisions now. Yes, they do tell you the risks and the fact is things can happen with a normal run of the mill AN REMOVAL. And no, I do believe the success rate of the ABI is higher. I heard (unconfirmed stat here) that less than 10% will not work at time of turn on (at least at HEI). I know a few of those, I know many-a-few of the majority. This was told to me before I had surgery. " they can stand up for themselves? " What is that??? Am I not entitled to brag about what I'm getting? You can run the thing in the ground, I can't brag about my success story? Wow! Ppl can know the negatives on this list all you like, but guess what? They aren't going to miss my positives. << Everybody KNOWS the pros! Heck, HEI will sing the praises of the ABI till they are blue in the face, but unless you ask the right questions, no one will tell you what could happen. They don't tell you about all their horror stories, do they? Its places like this that we need to hear about EVERYTHING that could or couldn't happen. My person feeling right now is that hearing is a wonderful great luxury (for ME,) and am I willing to risk my health and my way of life so that I can have this luxury back? No, not at this point. You're right, I'm talking about me, and surely everyone here understands that everything I say is MHO. For all the ppl like you who adore their abi, there are just as many whose ABI's don't work, had complications during surgery, who don't like it and don't wear it. I think the negatives should be discussed as well as the positives. You don't have to defend being able to hear the water running, hear a pin drop (??), hear the microwave beep, hear the doorbell ring etc etc, they can stand up for themselves. People need to know the negs of the ABI too. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I realize this was to , but I'm not anti-ABI either. I'm just anti-surgery-to-implant-the-ABI. na Re: Re: Pro side of ABI I never said (or meant to) you were anit-ABI. I can tell from your drive to get everything done, you are just the opposite. Yet you're also one of those well adjusted folk, so I can't wait to here your report. I only wanted to show my side that it's not always a bitch to do it, my surgery went smoother than my first without the ABI. And it's much more than horns (hopefully) for you. The CDs may discourage you, the traffic around the clinic will discourage you at first. Music isn't great for me. Someone said " techno " was awesome but that's not for me, so I won't even try. I am looking for " acapello " versions of songs I like. The instruments seem to block out the voice for me when I try music, but voices are great. I would love to find a CD of Bette Midler with very little music but lotsa voice. If yours works AT ALL, you'll hear your sister's baby. My baby (min pin) drives me nuts. He's probably wondering why I never noticed his barking before. 8) << Carla, I think you missed my clarification message. I'm not anti-ABI. My negative outcome was more the result of them removing the implant from my brainstem, I believe. I would advise poeple not to do that, as up till now, what I've gone through hasn't been worth it. (Ask me after I get hooked up). However, when it comes to implantation with tumour removal, I say go nuts =) It is worth it in that case. Soon we'll have the option to do just implantation itself, and then there's going to be a big debate, I am sure. The ABI does have a lot of potential for good. I'm looking forward to possibly hearing my sister's baby crying in April (I get hooked up April 9). And the benefits of not getting run over by a bus or firetruck are also clearly important. My ABI should work better than most as it was not placed during a tumour removal. However, we'll see in three weeks. (I'm bringing lots of CDs to HEI with me ;-) Hugs, >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I realize this was to , but I'm not anti-ABI either. I'm just anti-surgery-to-implant-the-ABI. na Re: Re: Pro side of ABI I never said (or meant to) you were anit-ABI. I can tell from your drive to get everything done, you are just the opposite. Yet you're also one of those well adjusted folk, so I can't wait to here your report. I only wanted to show my side that it's not always a bitch to do it, my surgery went smoother than my first without the ABI. And it's much more than horns (hopefully) for you. The CDs may discourage you, the traffic around the clinic will discourage you at first. Music isn't great for me. Someone said " techno " was awesome but that's not for me, so I won't even try. I am looking for " acapello " versions of songs I like. The instruments seem to block out the voice for me when I try music, but voices are great. I would love to find a CD of Bette Midler with very little music but lotsa voice. If yours works AT ALL, you'll hear your sister's baby. My baby (min pin) drives me nuts. He's probably wondering why I never noticed his barking before. 8) << Carla, I think you missed my clarification message. I'm not anti-ABI. My negative outcome was more the result of them removing the implant from my brainstem, I believe. I would advise poeple not to do that, as up till now, what I've gone through hasn't been worth it. (Ask me after I get hooked up). However, when it comes to implantation with tumour removal, I say go nuts =) It is worth it in that case. Soon we'll have the option to do just implantation itself, and then there's going to be a big debate, I am sure. The ABI does have a lot of potential for good. I'm looking forward to possibly hearing my sister's baby crying in April (I get hooked up April 9). And the benefits of not getting run over by a bus or firetruck are also clearly important. My ABI should work better than most as it was not placed during a tumour removal. However, we'll see in three weeks. (I'm bringing lots of CDs to HEI with me ;-) Hugs, >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 I realize this was to , but I'm not anti-ABI either. I'm just anti-surgery-to-implant-the-ABI. na Re: Re: Pro side of ABI I never said (or meant to) you were anit-ABI. I can tell from your drive to get everything done, you are just the opposite. Yet you're also one of those well adjusted folk, so I can't wait to here your report. I only wanted to show my side that it's not always a bitch to do it, my surgery went smoother than my first without the ABI. And it's much more than horns (hopefully) for you. The CDs may discourage you, the traffic around the clinic will discourage you at first. Music isn't great for me. Someone said " techno " was awesome but that's not for me, so I won't even try. I am looking for " acapello " versions of songs I like. The instruments seem to block out the voice for me when I try music, but voices are great. I would love to find a CD of Bette Midler with very little music but lotsa voice. If yours works AT ALL, you'll hear your sister's baby. My baby (min pin) drives me nuts. He's probably wondering why I never noticed his barking before. 8) << Carla, I think you missed my clarification message. I'm not anti-ABI. My negative outcome was more the result of them removing the implant from my brainstem, I believe. I would advise poeple not to do that, as up till now, what I've gone through hasn't been worth it. (Ask me after I get hooked up). However, when it comes to implantation with tumour removal, I say go nuts =) It is worth it in that case. Soon we'll have the option to do just implantation itself, and then there's going to be a big debate, I am sure. The ABI does have a lot of potential for good. I'm looking forward to possibly hearing my sister's baby crying in April (I get hooked up April 9). And the benefits of not getting run over by a bus or firetruck are also clearly important. My ABI should work better than most as it was not placed during a tumour removal. However, we'll see in three weeks. (I'm bringing lots of CDs to HEI with me ;-) Hugs, >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 i thought it was very inforative on both sides:) Is it stopping?? I was just making popcorn:)~~Lowi Re: Pro side of ABI > > > > > > I never said everyone will be perfect, I never said I was, I never said oh > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > still > > making decisions to see the " pro side " as well. (notice my subject line?) > > I > > think and some others are helping cover the negative stuff, why > can't > > I > > be one to cover the positive? I never said YOU should go get one. I know > > you have a regrowth up there, I don't think I would do one with that > either. > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > yourself, it's a whole diff world even though we're still deaf. lol I > never > > > > said you should run and get one JL, calm down. > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > you, > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a > > chance like this! > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > you don't want just " beeps " you want more..) unless you know what it's > like > > > > having one. " > > > > Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, > > Carla, but people need to be aware that BAD thing happen too. There is > no > > reason why ppl like me shouldn't be able to say " I don't want to risk > > having > > a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll > be > > able to detect sounds that I've gone without for 11 years. If it was > > guaranteed to work and guaranteed that I wouldn't have serious > > complications > > during surgery, then I would go for it. If you're happy and well > adjusted > > to deafness, why take the risks involved with major brain surgery? Until > I > > see more success stories with implanting during RECURRENT AN surgery, > I'll > > just pass, thank you very much. > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 i thought it was very inforative on both sides:) Is it stopping?? I was just making popcorn:)~~Lowi Re: Pro side of ABI > > > > > > I never said everyone will be perfect, I never said I was, I never said oh > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > still > > making decisions to see the " pro side " as well. (notice my subject line?) > > I > > think and some others are helping cover the negative stuff, why > can't > > I > > be one to cover the positive? I never said YOU should go get one. I know > > you have a regrowth up there, I don't think I would do one with that > either. > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > yourself, it's a whole diff world even though we're still deaf. lol I > never > > > > said you should run and get one JL, calm down. > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > you, > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a > > chance like this! > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > you don't want just " beeps " you want more..) unless you know what it's > like > > > > having one. " > > > > Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, > > Carla, but people need to be aware that BAD thing happen too. There is > no > > reason why ppl like me shouldn't be able to say " I don't want to risk > > having > > a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll > be > > able to detect sounds that I've gone without for 11 years. If it was > > guaranteed to work and guaranteed that I wouldn't have serious > > complications > > during surgery, then I would go for it. If you're happy and well > adjusted > > to deafness, why take the risks involved with major brain surgery? Until > I > > see more success stories with implanting during RECURRENT AN surgery, > I'll > > just pass, thank you very much. > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 i thought it was very inforative on both sides:) Is it stopping?? I was just making popcorn:)~~Lowi Re: Pro side of ABI > > > > > > I never said everyone will be perfect, I never said I was, I never said oh > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > still > > making decisions to see the " pro side " as well. (notice my subject line?) > > I > > think and some others are helping cover the negative stuff, why > can't > > I > > be one to cover the positive? I never said YOU should go get one. I know > > you have a regrowth up there, I don't think I would do one with that > either. > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > yourself, it's a whole diff world even though we're still deaf. lol I > never > > > > said you should run and get one JL, calm down. > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > you, > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a > > chance like this! > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > you don't want just " beeps " you want more..) unless you know what it's > like > > > > having one. " > > > > Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, > > Carla, but people need to be aware that BAD thing happen too. There is > no > > reason why ppl like me shouldn't be able to say " I don't want to risk > > having > > a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll > be > > able to detect sounds that I've gone without for 11 years. If it was > > guaranteed to work and guaranteed that I wouldn't have serious > > complications > > during surgery, then I would go for it. If you're happy and well > adjusted > > to deafness, why take the risks involved with major brain surgery? Until > I > > see more success stories with implanting during RECURRENT AN surgery, > I'll > > just pass, thank you very much. > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2002 Report Share Posted March 15, 2002 Just trying to add a little excitement to the messages. na Re: Pro side of ABI i thought it was very inforative on both sides:) Is it stopping?? I was just making popcorn:)~~Lowi Re: Pro side of ABI > > > > > > I never said everyone will be perfect, I never said I was, I never said oh > > heck JL, it's ok to do it with regrowths. But I want the ppl who are > still > > making decisions to see the " pro side " as well. (notice my subject line?) > > I > > think and some others are helping cover the negative stuff, why > can't > > I > > be one to cover the positive? I never said YOU should go get one. I know > > you have a regrowth up there, I don't think I would do one with that > either. > > > > BUT you shouldn't knock the type of sound it gives until you've heard it > > yourself, it's a whole diff world even though we're still deaf. lol I > never > > > > said you should run and get one JL, calm down. > > Damn right, warm and fuzzy. You haven't had a surgery since I've known > you, > > > > I've had 7 invasive surgeries since 95, very warm and fuzzy to be givin a > > chance like this! > > > > > > << " None of you can outweigh the benefit (decide to get one or not bc > > you don't want just " beeps " you want more..) unless you know what it's > like > > > > having one. " > > > > Yeah... I can! Its very warm and fuzzy what you seem to be experiencing, > > Carla, but people need to be aware that BAD thing happen too. There is > no > > reason why ppl like me shouldn't be able to say " I don't want to risk > > having > > a stomach tube or not being able to swallow or WORSE " just so MAYBE I'll > be > > able to detect sounds that I've gone without for 11 years. If it was > > guaranteed to work and guaranteed that I wouldn't have serious > > complications > > during surgery, then I would go for it. If you're happy and well > adjusted > > to deafness, why take the risks involved with major brain surgery? Until > I > > see more success stories with implanting during RECURRENT AN surgery, > I'll > > just pass, thank you very much. > > > > na <-- in defense of not messing with my HEALTH >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.