Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 , You are right that a hearing person could not understand fully how hard it is to loss of hearing. This is something that those who experienced can tell. I was trying to figure out what to do my with 7-yr-old daughter, who is diagnosed of NF2 recently. There are different opinions from physicians. Most of them prefer wait, which means the tumor will be larger. The chance of preserve hearing and facial functions decreases. At least one institution claims that their AN surgeries have almost 100% facial preservation for AN less than 2 cm. For those patients who have small AN's and still have hearing, they may need to chose whether they want high possiblity of preserving facial while running a risk of loss hearing a fewer years sooner. It is especial critical for a child since a few years can make a big difference in a child's developement. I have received many responses to my post. Many took a lot of time explain to me how it was like for them and what they think I should do. These replies covered a lot of hardships that I could not possibly imaging. And they will be very helpful for me to consider what to do with my daughter's case. I am sure they will be very useful for other new members who are in the similar situations. I sincerely thank you all for the openness of such a issue. RE: Re: This is for >From: ffusca@... ( A. Fusca) > >> I can imaging the hardness of lossing hearing. >> >> >> >, > >I bet you can't!! > >I knew I was pretty well going to be deaf a few months before it happened >(the doctor said there was a slim chance of remaining hearing). I tried to >perpare as best I could. I was not even close to understanding what deafness >was like (and I had lived with deafness in my left ear for 7 years prior to >this). The isolation that deafness brought was something I never thought >possible. My feeling is that it's not possible for a hearing person to >understand deafness. > >Good luck and I hope I did not scare you too much. > > >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 I hope for the best for your daughter. it really blows my mind to hear of 7 year olds or younger or young pre teens getting these AN's. they are babies!! I didnt get anything til I was abut 20, i jsut cant fathom being that young and dealing with it. Good luck to yu and her Yang wrote: > > > , > You are right that a hearing person could not understand fully how hard it > is to loss of hearing. This is something that those who experienced can > tell. > I was trying to figure out what to do my with 7-yr-old daughter, who is > diagnosed of NF2 recently. There are different opinions from physicians. > Most of them prefer wait, which means the tumor will be larger. The chance > of preserve hearing and facial functions decreases. At least one institution > claims that their AN surgeries have almost 100% facial preservation for AN > less than 2 cm. For those patients who have small AN's and still have > hearing, they may need to chose whether they want high possiblity of > preserving facial while running a risk of loss hearing a fewer years sooner. > It is especial critical for a child since a few years can make a big > difference in a child's developement. > I have received many responses to my post. Many took a lot of time explain > to me how it was like for them and what they think I should do. These > replies covered a lot of hardships that I could not possibly imaging. And > they will be very helpful for me to consider what to do with my daughter's > case. I am sure they will be very useful for other new members who are in > the similar situations. I sincerely thank you all for the openness of such a > issue. > > > > RE: Re: This is for > > >From: ffusca@... ( A. Fusca) > > > >> I can imaging the hardness of lossing hearing. > >> > >> > >> > >, > > > >I bet you can't!! > > > >I knew I was pretty well going to be deaf a few months before it happened > >(the doctor said there was a slim chance of remaining hearing). I tried to > >perpare as best I could. I was not even close to understanding what > deafness > >was like (and I had lived with deafness in my left ear for 7 years prior to > >this). The isolation that deafness brought was something I never thought > >possible. My feeling is that it's not possible for a hearing person to > >understand deafness. > > > >Good luck and I hope I did not scare you too much. > > > > > >------------------------------------------------------------------------ > >See what's happening for NF2Con 2000! > >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > > > ------------------------------------------------------------------------ > See what's happening for NF2Con 2000! > http://www.home.earthlink.net/~earldillon/nf2convegas2000.html Quote Link to comment Share on other sites More sharing options...
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