Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Welcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Thanks for the welcome. Quickly discovering that this is more of a social column and I do recognize the need for this. However I am more interested in NF2 information. In particular intereste din learning more about NF2ers who've had hearing preserved after tyreatment. Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Thanks for the welcome. Quickly discovering that this is more of a social column and I do recognize the need for this. However I am more interested in NF2 information. In particular intereste din learning more about NF2ers who've had hearing preserved after tyreatment. Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2001 Report Share Posted January 16, 2001 Thanks for the welcome. Quickly discovering that this is more of a social column and I do recognize the need for this. However I am more interested in NF2 information. In particular intereste din learning more about NF2ers who've had hearing preserved after tyreatment. Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , I fought long and hard to save my hearing; I had a decompression, then my tumor turned cystic, 2 surgeries, and I was going to do a debulking and then FRS. Unfortunately during the debulking I lost my hearing, One comment I might make is that I think we concentrate so much on the hearing part of things that the facial nerve is not given enough attention. You have a 16 year old daughter, and I am would suggest you discuss this. I now find that all my surgeries to try and save my hearing created scar tissue and the increased size of the tumor plus the scar tissue made saving the facial nerve difficult; indeed I now have full facial paralysis; I have lost 15 pounds, eating is the pits. And the balance issue for me is much more of a problem than I would have thought. I liked to snow ski, to whitie water raft, to water ski--and I can no longer do those things because of my balance. I am 58, and so I can live with it; but if I were looking at a 16 year old, I just think all these things should be considered and ot just the hearing. My two cents. Marie Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , I fought long and hard to save my hearing; I had a decompression, then my tumor turned cystic, 2 surgeries, and I was going to do a debulking and then FRS. Unfortunately during the debulking I lost my hearing, One comment I might make is that I think we concentrate so much on the hearing part of things that the facial nerve is not given enough attention. You have a 16 year old daughter, and I am would suggest you discuss this. I now find that all my surgeries to try and save my hearing created scar tissue and the increased size of the tumor plus the scar tissue made saving the facial nerve difficult; indeed I now have full facial paralysis; I have lost 15 pounds, eating is the pits. And the balance issue for me is much more of a problem than I would have thought. I liked to snow ski, to whitie water raft, to water ski--and I can no longer do those things because of my balance. I am 58, and so I can live with it; but if I were looking at a 16 year old, I just think all these things should be considered and ot just the hearing. My two cents. Marie Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 , I fought long and hard to save my hearing; I had a decompression, then my tumor turned cystic, 2 surgeries, and I was going to do a debulking and then FRS. Unfortunately during the debulking I lost my hearing, One comment I might make is that I think we concentrate so much on the hearing part of things that the facial nerve is not given enough attention. You have a 16 year old daughter, and I am would suggest you discuss this. I now find that all my surgeries to try and save my hearing created scar tissue and the increased size of the tumor plus the scar tissue made saving the facial nerve difficult; indeed I now have full facial paralysis; I have lost 15 pounds, eating is the pits. And the balance issue for me is much more of a problem than I would have thought. I liked to snow ski, to whitie water raft, to water ski--and I can no longer do those things because of my balance. I am 58, and so I can live with it; but if I were looking at a 16 year old, I just think all these things should be considered and ot just the hearing. My two cents. Marie Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2001 Report Share Posted January 18, 2001 Thanks for responding. Yes I do realize that hearing preservation should not be the ultimate goal. It is for that very reason that we decided to have surgery on my 16 year old. We wanted to protect the facial nerve, reduce the possibility of it growing back and not run the risk of a radiated tumor at some point becoming malignant. Hopefully she has a very long life ahead of her. We did look at FSR but in her case chose surgery as we felt it was safer and in her best long term interest. May be bucking the trend but that's what we belived in. Welcome and TimWelcomes to and Tim!! There is always good info going through this crew! They are a great group of people!! God Bless You, Carol, land Just for you.........!!!!!!!!!!! Quote Link to comment Share on other sites More sharing options...
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