Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die. The JOHN HOLE experience should never be forgotten. Marcus not wanting to strangle anyone . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die. The JOHN HOLE experience should never be forgotten. Marcus not wanting to strangle anyone . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 Complications can go with ANY surgery, ABI or not. Have heard of some horrible AN surgeries, no ABI involved, but it would most likely be assumed the culprit if it had been. You can die from AN removal alone. On a healthy (as can be) NF2 person, the risks (in addition to the AN removal) are minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " meaning " I had a good experience, here it is since I know many of you are considering it and since some of you have heard the horror stories. " Not meant as opposite of " Anti Abi " > I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die. > The JOHN HOLE experience should never be forgotten. > Marcus not wanting to strangle anyone . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 Complications can go with ANY surgery, ABI or not. Have heard of some horrible AN surgeries, no ABI involved, but it would most likely be assumed the culprit if it had been. You can die from AN removal alone. On a healthy (as can be) NF2 person, the risks (in addition to the AN removal) are minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " meaning " I had a good experience, here it is since I know many of you are considering it and since some of you have heard the horror stories. " Not meant as opposite of " Anti Abi " > I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die. > The JOHN HOLE experience should never be forgotten. > Marcus not wanting to strangle anyone . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 Complications can go with ANY surgery, ABI or not. Have heard of some horrible AN surgeries, no ABI involved, but it would most likely be assumed the culprit if it had been. You can die from AN removal alone. On a healthy (as can be) NF2 person, the risks (in addition to the AN removal) are minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " meaning " I had a good experience, here it is since I know many of you are considering it and since some of you have heard the horror stories. " Not meant as opposite of " Anti Abi " > I think really the main point brought up that people seemed to perceive as ANTI ABI was the complications that can go with surgery. What was being spelt out to you all was a word of caution. You can come out a lot worse off or even die. > The JOHN HOLE experience should never be forgotten. > Marcus not wanting to strangle anyone . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 YEah I know all that Carla I'm not against them, and I'm really very happy for all the people that have them . I wouldn't stop my own sons from having them if they wanted one. I think remembering how thought it was going to correct so many wrongs in his life that sticks in my mind. When I read others say the same thing here it scares me. Remember how we all wrote letters of support to the British government so that could have his ABI ? Theres a lesson in it, thats all. M Re: Pro side of ABI > Complications can go with ANY surgery, ABI or not. Have heard of some > horrible AN surgeries, no ABI involved, but it would most likely be > assumed the culprit if it had been. > You can die from AN removal alone. On a healthy > (as can be) NF2 person, the risks (in addition to the AN removal) are > minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " > meaning " I had a good experience, here it is since I know many of you > are considering it and since some of you have heard the horror > stories. " Not meant as opposite of " Anti Abi " > > > I think really the main point brought up that people seemed to > perceive as ANTI ABI was the complications that can go with surgery. > What was being spelt out to you all was a word of caution. You can > come out a lot worse off or even die. > > The JOHN HOLE experience should never be forgotten. > > Marcus not wanting to strangle anyone . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 YEah I know all that Carla I'm not against them, and I'm really very happy for all the people that have them . I wouldn't stop my own sons from having them if they wanted one. I think remembering how thought it was going to correct so many wrongs in his life that sticks in my mind. When I read others say the same thing here it scares me. Remember how we all wrote letters of support to the British government so that could have his ABI ? Theres a lesson in it, thats all. M Re: Pro side of ABI > Complications can go with ANY surgery, ABI or not. Have heard of some > horrible AN surgeries, no ABI involved, but it would most likely be > assumed the culprit if it had been. > You can die from AN removal alone. On a healthy > (as can be) NF2 person, the risks (in addition to the AN removal) are > minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " > meaning " I had a good experience, here it is since I know many of you > are considering it and since some of you have heard the horror > stories. " Not meant as opposite of " Anti Abi " > > > I think really the main point brought up that people seemed to > perceive as ANTI ABI was the complications that can go with surgery. > What was being spelt out to you all was a word of caution. You can > come out a lot worse off or even die. > > The JOHN HOLE experience should never be forgotten. > > Marcus not wanting to strangle anyone . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 YEah I know all that Carla I'm not against them, and I'm really very happy for all the people that have them . I wouldn't stop my own sons from having them if they wanted one. I think remembering how thought it was going to correct so many wrongs in his life that sticks in my mind. When I read others say the same thing here it scares me. Remember how we all wrote letters of support to the British government so that could have his ABI ? Theres a lesson in it, thats all. M Re: Pro side of ABI > Complications can go with ANY surgery, ABI or not. Have heard of some > horrible AN surgeries, no ABI involved, but it would most likely be > assumed the culprit if it had been. > You can die from AN removal alone. On a healthy > (as can be) NF2 person, the risks (in addition to the AN removal) are > minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " > meaning " I had a good experience, here it is since I know many of you > are considering it and since some of you have heard the horror > stories. " Not meant as opposite of " Anti Abi " > > > I think really the main point brought up that people seemed to > perceive as ANTI ABI was the complications that can go with surgery. > What was being spelt out to you all was a word of caution. You can > come out a lot worse off or even die. > > The JOHN HOLE experience should never be forgotten. > > Marcus not wanting to strangle anyone . > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2002 Report Share Posted March 18, 2002 This is some what off the subject......When I went for the ABI @ HEI in 1996, I was given a few sheets that listed the many risks involved in the implant. I don't believe this was info of a personal nature pertaining only to me and risks listed to me, but rather, I thought, lists of risks involved in general, to everyone undergoing the procedure. It was voluntarily offered to us to see the HEI Library and they duplicated any and all material and info my husband and I requested. There was info involving various case studies, failures and successes in this room, library, in upper HEI. We were welcome to take all we wanted, and took several inches worth of duplicated info home with us (4 inches approximately of 8 1/2 x 11 paper worth in fact). They did this duplicating at no charge to us. We had received the same offer in '95, before I actually went down for the implant. I have mentioned the library once on here in the past, are the rest of you aware of this Libray?, I have never heard anyone else mention being in the library......It also covers info about various other surgeries....involving AN's etc. The end result....I decided to have my 1st AN removed and the ABI possibly on my 2nd side when the time should come for removal of my 2nd AN. YES...the list of possible risks were scary and very real to me and I'm hopeful these will grow to be less risk for the ABI when my time comes, for I had encountered many bad results for a tumour GLIOMA, in the brainstem, just above the medullary junction (brainstem and spine). And this tumour required 4 long surgeries and results were effecting my body in most every way and function, or lack of function as was the case in many respects. Its too bad the decision can't be easier then it is....so difficult...... for everyone involved. But I think s results present a very valid question we should present to each and every dr attending a procedure for us, we must ask, HAVE YOU DONE THIS BEFORE< HOW OFTE<????? Sheryn _________________________________________- To: <NF2_Crew > > 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. > > > 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 18, 2002 Report Share Posted March 18, 2002 This is some what off the subject......When I went for the ABI @ HEI in 1996, I was given a few sheets that listed the many risks involved in the implant. I don't believe this was info of a personal nature pertaining only to me and risks listed to me, but rather, I thought, lists of risks involved in general, to everyone undergoing the procedure. It was voluntarily offered to us to see the HEI Library and they duplicated any and all material and info my husband and I requested. There was info involving various case studies, failures and successes in this room, library, in upper HEI. We were welcome to take all we wanted, and took several inches worth of duplicated info home with us (4 inches approximately of 8 1/2 x 11 paper worth in fact). They did this duplicating at no charge to us. We had received the same offer in '95, before I actually went down for the implant. I have mentioned the library once on here in the past, are the rest of you aware of this Libray?, I have never heard anyone else mention being in the library......It also covers info about various other surgeries....involving AN's etc. The end result....I decided to have my 1st AN removed and the ABI possibly on my 2nd side when the time should come for removal of my 2nd AN. YES...the list of possible risks were scary and very real to me and I'm hopeful these will grow to be less risk for the ABI when my time comes, for I had encountered many bad results for a tumour GLIOMA, in the brainstem, just above the medullary junction (brainstem and spine). And this tumour required 4 long surgeries and results were effecting my body in most every way and function, or lack of function as was the case in many respects. Its too bad the decision can't be easier then it is....so difficult...... for everyone involved. But I think s results present a very valid question we should present to each and every dr attending a procedure for us, we must ask, HAVE YOU DONE THIS BEFORE< HOW OFTE<????? Sheryn _________________________________________- To: <NF2_Crew > > 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. > > > 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 18, 2002 Report Share Posted March 18, 2002 This is some what off the subject......When I went for the ABI @ HEI in 1996, I was given a few sheets that listed the many risks involved in the implant. I don't believe this was info of a personal nature pertaining only to me and risks listed to me, but rather, I thought, lists of risks involved in general, to everyone undergoing the procedure. It was voluntarily offered to us to see the HEI Library and they duplicated any and all material and info my husband and I requested. There was info involving various case studies, failures and successes in this room, library, in upper HEI. We were welcome to take all we wanted, and took several inches worth of duplicated info home with us (4 inches approximately of 8 1/2 x 11 paper worth in fact). They did this duplicating at no charge to us. We had received the same offer in '95, before I actually went down for the implant. I have mentioned the library once on here in the past, are the rest of you aware of this Libray?, I have never heard anyone else mention being in the library......It also covers info about various other surgeries....involving AN's etc. The end result....I decided to have my 1st AN removed and the ABI possibly on my 2nd side when the time should come for removal of my 2nd AN. YES...the list of possible risks were scary and very real to me and I'm hopeful these will grow to be less risk for the ABI when my time comes, for I had encountered many bad results for a tumour GLIOMA, in the brainstem, just above the medullary junction (brainstem and spine). And this tumour required 4 long surgeries and results were effecting my body in most every way and function, or lack of function as was the case in many respects. Its too bad the decision can't be easier then it is....so difficult...... for everyone involved. But I think s results present a very valid question we should present to each and every dr attending a procedure for us, we must ask, HAVE YOU DONE THIS BEFORE< HOW OFTE<????? Sheryn _________________________________________- To: <NF2_Crew > > 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. > > > 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 18, 2002 Report Share Posted March 18, 2002 oh fer sure Marcus, ive toyed with the idea and still am, but since my 1st an's are out and 2 brand new one arrived (oh joy!) im less optimistic, but still toy with the possibilites. Marcus wrote: > YEah I know all that Carla I'm not against them, and I'm really very happy > for all the people that have them . I wouldn't stop my own sons from having > them if they wanted one. > I think remembering how thought it was going to correct so many wrongs > in his life that sticks in my mind. When I read others say the same thing > here it scares me. Remember how we all wrote letters of support to the > British government so that could have his ABI ? > Theres a lesson in it, thats all. > M > > Re: Pro side of ABI > > > Complications can go with ANY surgery, ABI or not. Have heard of some > > horrible AN surgeries, no ABI involved, but it would most likely be > > assumed the culprit if it had been. > > You can die from AN removal alone. On a healthy > > (as can be) NF2 person, the risks (in addition to the AN removal) are > > minimal. My subject wasn't " Pro ABI " it was " Pro side of ABI " > > meaning " I had a good experience, here it is since I know many of you > > are considering it and since some of you have heard the horror > > stories. " Not meant as opposite of " Anti Abi " > > > > > I think really the main point brought up that people seemed to > > perceive as ANTI ABI was the complications that can go with surgery. > > What was being spelt out to you all was a word of caution. You can > > come out a lot worse off or even die. > > > The JOHN HOLE experience should never be forgotten. > > > Marcus not wanting to strangle anyone . > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2002 Report Share Posted March 19, 2002 This is really enlightening, Sheryn, I've never seen anyone mention that they were given access to so much info at HEI before. Maybe they have, but I missed it? Anyway, like , I'm not saying NEVER to the ABI, but at this point in my life, I just can't justify the risks. Every little bit of info we get here about the ABI helps us make an informed decision on whether to get it or not. 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 19, 2002 Report Share Posted March 19, 2002 This is really enlightening, Sheryn, I've never seen anyone mention that they were given access to so much info at HEI before. Maybe they have, but I missed it? Anyway, like , I'm not saying NEVER to the ABI, but at this point in my life, I just can't justify the risks. Every little bit of info we get here about the ABI helps us make an informed decision on whether to get it or not. 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 19, 2002 Report Share Posted March 19, 2002 This is really enlightening, Sheryn, I've never seen anyone mention that they were given access to so much info at HEI before. Maybe they have, but I missed it? Anyway, like , I'm not saying NEVER to the ABI, but at this point in my life, I just can't justify the risks. Every little bit of info we get here about the ABI helps us make an informed decision on whether to get it or not. 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 20, 2002 Report Share Posted March 20, 2002 Subject: Re: Re: Pro side of ABI Hi Tev, I'm just curious, where was your ABI implant done..... and the previously AN surgery, or like most ABI implants, was the surgery for AN removal and the ABI implant done at the same time?...... and where and who were the Drs. involved..... just thinking that perhaps, just perhaps, that may make a difference in the end results....... Sheryn Hi ,Yes I have a regrowth or piece of acousitc neuroma they thought they had removed but didnt get all of it and its right behind the ABI that did not work for me when it was implanted in 1996.Im sure Im not the only one who will get a regrowth behind an ABi since in NF2 regrowths of acoustic neuromas seem to occur .Besides that Have a great trip down in Oz! Tev Quote Link to comment Share on other sites More sharing options...
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