Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 GospelBlessings@... wrote: > > Joanie, > > << Right now we dont have the long term studies result and if we did, there > are so many variables to concider that I would be skepitcal of ANY results. > >> > > Americans might now have the long term results but " in the late 1960's Lars > Leksell M.D., a Swedish neurosurgeon at the Karolinska Institute in Stockhom > pioneered the Gamma Knife. " This result would be true for the 60;s and not now. Life styles have changed, doesages of the beam, position of the beam, etc., so again I am very leary of ANY results from the 60's. > My questions to you: > > When did you have the Gamma Knife? I had the GK in Nov 1999 to an right an. Did you have side effects (paralysis,imbalance, memory loss)? I think the only side effect I had is now my balance seems qorse. Ohhh I also had a terrible right ear infection after the treatment. Dont think that is realted to NF, but one never knows. > > If you had side effects was it temporary or permanent? The balance problems seem to be permenant. > > Dr. Helenowski told me that the tumor swells after the radiation and that in order to tell if there were any side effects you would need to wait a few months for the swelling to go down. Did you have any symptoms during this time?Right after my treatmenmt I was given a does of steroids to reduce this rteisk. That is what my DR told me is standard procedure. > > Do you know of anyone else that had the Gamma Knife? Would they be willing to talk with me? All I know are crew members that have had it. Some are good reports somare are bad. It really is a lead of faith. > I say go for the GK. I hate the thought of MS. With GK I returned to " normal " in say a few hours. I did have to stay over night, for observation and my insurance would not pay unless I stayed over night. GK may not be the way you want to go if you want to save hearing, but heck I am stoned deaf in both ears, so I dont care. Marie is who I call the radiation expert. She has researched this really good. For me I made the decision in a mater of minutes. As I said I hate MS and my DR knows I do very bad in MS, so he was not looking forward to that choice by me.(the last MS was 22 hours long and my lungs collasped after the surgery). Other have the same kind of horror stories.. write me me again and dont deal bother that a question is asked. I am usually very foward about how i feel and felt. I guess that is from being a research pation at NIH and getiing asked zillions of questions and basically having every oraface examined. Joanie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 that thread I did not follow. I am sorry. Joanie & Ann Cross wrote: > > Where were you Joanie when we where discussing the " NF2 Pill " and Barbara F > statement about tests against NF2 Mouse models. ~|) > . > *********** > you wrote > >At least, to some degree, there is a cure for cancer > > and not at the momet, I say at least 20 years, a cure for NF2. I dont > > see a cure for NF2 for people that already have it, I see a cure for > > the fetus, but not us. > > Re: Quality vs. Quantity > > > Sally, > > > > I had GK, once. With DR. Hodge at University Hopsital in NY. > > They have the ONLY GK machine in upstate NY. > > So we MAYBE get cancer due to this, But you can, in rare forms, get > > cancer from NF2. At least, to some degree, there is a cure for cancer > > and not at the momet, I say at least 20 years, a cure for NF2. I dont > > see a cure for NF2 for people that already have it, I see a cure for > > the fetus, but not us. > > > > It all goes back to Jennettee's question, we have this, like it or not, > > NOW decide on quality verses quanity. > > Joanie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2000 Report Share Posted April 11, 2000 that thread I did not follow. I am sorry. Joanie & Ann Cross wrote: > > Where were you Joanie when we where discussing the " NF2 Pill " and Barbara F > statement about tests against NF2 Mouse models. ~|) > . > *********** > you wrote > >At least, to some degree, there is a cure for cancer > > and not at the momet, I say at least 20 years, a cure for NF2. I dont > > see a cure for NF2 for people that already have it, I see a cure for > > the fetus, but not us. > > Re: Quality vs. Quantity > > > Sally, > > > > I had GK, once. With DR. Hodge at University Hopsital in NY. > > They have the ONLY GK machine in upstate NY. > > So we MAYBE get cancer due to this, But you can, in rare forms, get > > cancer from NF2. At least, to some degree, there is a cure for cancer > > and not at the momet, I say at least 20 years, a cure for NF2. I dont > > see a cure for NF2 for people that already have it, I see a cure for > > the fetus, but not us. > > > > It all goes back to Jennettee's question, we have this, like it or not, > > NOW decide on quality verses quanity. > > Joanie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Sara wrote: >I mean some people have horrid events > happen in their life's do you ask them if they'd rather just call it quits > and say do you wish you'd never been born. Nah, it's just a rough spot we > have to over come. Everyone has a challenge of some sorts to deal with. > I look at other people and see the stuff they have to deal with and thank the > Lord that he has given me the courage and willpower to get where I am today > for I have so much I want to accomplish yet Hi Sara... I wasn't trying bring up this subject to mean anything about the word " quitting " . I guess that's easy to interpret, which makes this subject so confusing or not so confusing to some people.. When I was discussing this very topic with a friend., very " quantity " , he also called it quitting at first. Another question then quickly pops into my head.... " What exactly is a person *quitting* by enjoying their life while they can? " I personally don't see any quitting in that at all. Have a blast in San Diego, Joanie! Jennette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 Sara wrote: >I mean some people have horrid events > happen in their life's do you ask them if they'd rather just call it quits > and say do you wish you'd never been born. Nah, it's just a rough spot we > have to over come. Everyone has a challenge of some sorts to deal with. > I look at other people and see the stuff they have to deal with and thank the > Lord that he has given me the courage and willpower to get where I am today > for I have so much I want to accomplish yet Hi Sara... I wasn't trying bring up this subject to mean anything about the word " quitting " . I guess that's easy to interpret, which makes this subject so confusing or not so confusing to some people.. When I was discussing this very topic with a friend., very " quantity " , he also called it quitting at first. Another question then quickly pops into my head.... " What exactly is a person *quitting* by enjoying their life while they can? " I personally don't see any quitting in that at all. Have a blast in San Diego, Joanie! Jennette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2000 Report Share Posted April 12, 2000 I agree with you Jennette. I dont equate, though I know it can, quallity to " quiting " . I am a believer in the Hemlock Society, but I have deided to enjoy my life NOW while I can. Hence I went to New Zealand now, while I can see and appricate it instead whne I can barley move. Jenntte has been a strong influence in me to go onb. This is a compliement, REALLY. I did not think I could go on if I could not walk, but I have seen her a with those GREAT walkers that allow you to sit down. I have checked the out, not that I need one now. Medicare will pay for half of it. So I see I do have a funture with a walker. That is great. I mean I DO have a future. Joanie who hopes to have a blast in San Dieago...thanks Jennett..hope your Hawanian trip goes well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 hi all, it's a hard question... before my last operation that left me deaf with a trc , i don't have a voice and in a weelchair i would say a quantity for sure. i'm only 22 years old and right now i have no quality at all. i spent most of the last year at the hospital, when i could choose between wait 6 month with a voice, a breathing and a walking between have this operation done right now ,i choose now since it ment that i have a small chance not to hurt my vocal cord. now i look back and i know it was the biggest mistake of my life. i try to move on with my life, i think this is what make this disorder so hard, everyone except you to go on with your life like nothing has happened.it was the hardest year of my short life and i couldn't do it without the help of my friends- that stayed with me totally since the nf2 started, and you all what i want to say, that right now i choose quality vs quantity for sure netta ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 hi all, it's a hard question... before my last operation that left me deaf with a trc , i don't have a voice and in a weelchair i would say a quantity for sure. i'm only 22 years old and right now i have no quality at all. i spent most of the last year at the hospital, when i could choose between wait 6 month with a voice, a breathing and a walking between have this operation done right now ,i choose now since it ment that i have a small chance not to hurt my vocal cord. now i look back and i know it was the biggest mistake of my life. i try to move on with my life, i think this is what make this disorder so hard, everyone except you to go on with your life like nothing has happened.it was the hardest year of my short life and i couldn't do it without the help of my friends- that stayed with me totally since the nf2 started, and you all what i want to say, that right now i choose quality vs quantity for sure netta ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 Netta, I have read all your posts but I somehow did not realize your young age. My daughter who has NF2 is 26 and very impacted. Yes, we too go for quality because quantity is too unsure. For everyone it is, and for this disorder it surely is. But since we can control the quality to a greater degree, we go for it too. I, however, remain forever hopeful that some treatment will be developed rapidly to slow the growth of these tumors. In my daughter they are rampant and my heart breaks for all of you, especially when it interferes with your as yet rather short lives. I will pray for you to get the quality you seek and for all of us to see the treatment of this disorder in the near future. Love, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2000 Report Share Posted April 24, 2000 vici, thanks. netta i I will pray for you to get the quality >you seek and for all of us to see the treatment of this disorder in the >near >future. > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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