Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 I was just wondering, are they real pushy with the ABI at House? After Pat's post earlier, I just have the chills here. , you are right on the money in that the ABI is a very individual decision to make. I would hope that since dr.s can't guarantee anything with it yet that they would not push it too much. It was extremely difficult for me to deal with the year when I was implanted but received no benefit from mine. At IU (Indianapolis), I felt no pressure either way in my decision... but I was following a good friend and his experience was reassuring. One thing I think is interesting: I was implanted on my " bad side " when I still had a bit of hearing on the other side... I wonder if having that " natural " hearing ability left inhibited the performance of the ABI. They chalked my experience up to post-op swelling, mainly. But now that I think about it, I did not fully benefit until after my surgery on the other side and experiencing complete deafness for a time. I still think the ABI is like taking a kid and teaching her/him how to hear and comprehend sounds... that's why it takes so long to get used-to. (and why people must talk one word at a time for me to fully understand them) The researchers were thinking we could train our brains to hear with it while we still have some of that natural hearing left, but maybe we can't. If this is the case, then waiting would seem like the right thing to do. There's going to be a transition period no matter what the decision. I do not miss the stress of still having that one side of itty-bitty hearing (and the hearing tests). Gee, I really feel for all of you that are faced with these decisions and the uncertainty! My Best, --- VMTucker@... wrote: > Dr. Brackmann continues to ask Craig about the > implant, but he's opted not to > do it at this point (he has one AN left). It's such > a personal decision. _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 1999 Report Share Posted May 30, 1999 , I wouldn't say HEI folks are pushy, but they didn't seem to " get it " that Craig could accept becoming deaf...period. He's had time to be able to picture himself being deaf in the future, and that picture doesn't include ABI at this point. His docs respect that but don't truly understand the social/emotional/mental health component to one more procedure. He's had so many surgeries not go the way they expected..that one more potential complication doesn't feel right. This is such a personal decision, as is many of the decisions in living with NF2. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Hello Varlie, It's me again. You've hit the nail on the head. HEI didnt' seem to get it also that I couldn't see myself as being deaf. Wow! It's nice to know someone knows where you're coming from out there. Mark ----Original Message Follows---- From: VMTucker@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: HEI and ABI Date: Mon, 31 May 1999 01:42:49 EDT From: VMTucker@... , I wouldn't say HEI folks are pushy, but they didn't seem to " get it " that Craig could accept becoming deaf...period. He's had time to be able to picture himself being deaf in the future, and that picture doesn't include ABI at this point. His docs respect that but don't truly understand the social/emotional/mental health component to one more procedure. He's had so many surgeries not go the way they expected..that one more potential complication doesn't feel right. This is such a personal decision, as is many of the decisions in living with NF2. Thanks, ------------------------------------------------------------------------ Looking for a new hobby? Want to make a new friend? http://www.onelist.com Come join one of over 150,000 e-mail communities at ONElist! _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 1999 Report Share Posted May 31, 1999 Hi Mark, It's amazing that doctors at HEI can have so many human beings who are adjusting to hearing loss and the impact of that in their lives and the staff is so focused on the medical model of things. Craig's dream is to talk with pre-med students about the mental health aspects of all this so they can become more empathic. Don't get me wrong, the HEI staff has been great, but there's something missing, especially when it comes to personal decisions like the ABI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Hello , I totally agree. The staff is great, but you're right, they could be more empathetic about losing your hearing. Mark ----Original Message Follows---- From: VMTucker@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: HEI and ABI Date: Tue, 1 Jun 1999 02:08:45 EDT From: VMTucker@... Hi Mark, It's amazing that doctors at HEI can have so many human beings who are adjusting to hearing loss and the impact of that in their lives and the staff is so focused on the medical model of things. Craig's dream is to talk with pre-med students about the mental health aspects of all this so they can become more empathic. Don't get me wrong, the HEI staff has been great, but there's something missing, especially when it comes to personal decisions like the ABI. ------------------------------------------------------------------------ Having difficulty getting " in synch " with list members? http://www.onelist.com Try ONElist's Shared Calendar to organize events, meetings and more! _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 uuh no, I said " empathy " not " sympathy " . Mark ----Original Message Follows---- From: ADRENHLIN@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: HEI and ABI Date: Wed, 2 Jun 1999 00:09:05 EDT From: ADRENHLIN@... hmmm if it was sympathy I wanted from someone it wud not be the docs I see everyfew months it wud be family and friends but I dont want or need sympathy but mabey thats just me and they are there(docs) to help you not to feel sorry for you ------------------------------------------------------------------------ Did you know each week we feature a ONElist story? http://www.onelist.com How has ONElist changed your life? Please share your story. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 Oh and if they're (the docs) are set to help you, wouldn't they provide all the options for you instead of one? Just a thought. Mark ----Original Message Follows---- From: ADRENHLIN@... Reply-To: NF2_Crewonelist To: NF2_Crewonelist Subject: Re: HEI and ABI Date: Wed, 2 Jun 1999 00:09:05 EDT From: ADRENHLIN@... hmmm if it was sympathy I wanted from someone it wud not be the docs I see everyfew months it wud be family and friends but I dont want or need sympathy but mabey thats just me and they are there(docs) to help you not to feel sorry for you ------------------------------------------------------------------------ Did you know each week we feature a ONElist story? http://www.onelist.com How has ONElist changed your life? Please share your story. _______________________________________________________________ Get Free Email and Do More On The Web. Visit http://www.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 1999 Report Share Posted June 1, 1999 hmmm if it was sympathy I wanted from someone it wud not be the docs I see everyfew months it wud be family and friends but I dont want or need sympathy but mabey thats just me and they are there(docs) to help you not to feel sorry for you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 oh, , the last thing anyone wants is people feeling sorry for them. what we were talking about is that there is a lot more to life than what goes on in the dr. office. It would be helpful for doctors to have a sense of the consequences of " treatment " on the total person... that is, how they affect the life and not just how they clear up a perceived medical problem. .... just knowing that there is more to having an operation or getting an implant than the mechanics of it. We go through a lot and it has definitely helped me mentally and physically (and personally, I think our minds have a lot to do with how we handle everything) to have a dr. that I feel considers more than just what goes on in his office. Different people will look for different things in their doctor, though-- that's fine. I would rather be considered as a person rather than an object... not sympathy, but empathy (as others already stated)--there is a big difference. You are right, though--sympathy and pity do nothing. hugs, --- ADRENHLIN@... wrote: > From: ADRENHLIN@... > > hmmm if it was sympathy I wanted from someone it wud > not be the docs I see > everyfew months it wud be family and friends but I > dont want or need sympathy > but mabey thats just me and they are there(docs) to > help you not to feel > sorry for you > > _________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 1999 Report Share Posted June 2, 1999 My doc gave me the options and I choose to go with him cuz he is good. I think he helps me and of course he belives strongest in his methods of treatment and if he is not comfortable with another that is his right and I would preffer to stick with a doc who is comfy with what he is doing Quote Link to comment Share on other sites More sharing options...
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