Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Hello all, hope you have been doing well. I had my neuro appointment this past Tuesday and well the neuro tells me that my left AN is showing signs of growth, whereas the right one hasn't (it has been treated with gamma knife) As a result, I have to go back to Rhode Island sometime after Christmas to recieve treatment again. Hopefully they can sedate me because that frame HURT, esp. since i had to wear it for five days and it was VERY uncomfortable to sleep in and to brush my teeth even. I'm dreading that day, but gotta think positively right? It's just bad that i had so many good things to look forward to, like my birthday, Christmas, and a cousin's wedding, then I just had to receive bad news about my NF at this time. I wish I lived in the States, because they don't have anything called vocational rehabilitation here in Ontario, Canada. Does any live in Ontario with NF2?????? Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 Fusca does, Grace. He's on no mail at this time. My web server is down so I'm unable to access the database right now.... can someone please give Grace 's addy if they have it? He's a great guy, Grace... 2 kids, beautiful wife, very smart man. He also had gamma here in the states. Jennette ----- Original Message ----- I wish I lived in the States, because they don't have anything called vocational rehabilitation here in Ontario, Canada. Does any live in Ontario with NF2?????? Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 This is all i could find frank fusca ffusca@o... -- Re: me again Fusca does, Grace. He's on no mail at this time. My web server isdown so I'm unable to access the database right now.... can someoneplease give Grace 's addy if they have it? He's a great guy,Grace... 2 kids, beautiful wife, very smart man. He also had gamma herein the states.Jennette----- Original Message -----I wish I lived in the States, because they don't have anything calledvocational rehabilitation here in Ontario, Canada. Does any live inOntario with NF2??????Grace Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 What is the frame for Grace? Carol Hopefully they can sedate me > because that frame HURT, esp. since i had to wear it for five days > and it was VERY uncomfortable to sleep in and to brush my teeth even. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2002 Report Share Posted October 27, 2002 just sent me a note. Here is the return addy I got for him ffusca@... Randy Re: me again > Fusca does, Grace. He's on no mail at this time. My web server is > down so I'm unable to access the database right now.... can someone > please give Grace 's addy if they have it? He's a great guy, > Grace... 2 kids, beautiful wife, very smart man. He also had gamma here > in the states. > > Jennette > > ----- Original Message ----- > > > I wish I lived in the States, because they don't have anything called > vocational rehabilitation here in Ontario, Canada. Does any live in > Ontario with NF2?????? > > Grace > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Subject: Re: me again Grace are you in touch with ANAC at all? I'd reach them and get a new location to have the Gamma Ray done. was done fairly recently, but not at the location you mention. I have never heard of wearing the brace for 5 days FOR Gamma Ray....and have you been offered or considered the ABI at all? Some Canadians are sent to HEI in LA for it, but not many seem to know about it being an option or anything about it really, especially out east. If you have any questions, please don't hesitate to write. Please keep in mind, radiation can effect your ability to have an MRI, but on the other hand, I had both AN's radiated and the Brainstem and HEI still considered giving me an ABI and they still consider me for one on the other side when I go deaf. Good Luck Grace, be firm and make them be good to you, I suggest a change of location for the radiation, at least. Hugs Grace, Sheryn in Saskatchewan ______________________ > Hopefully they can sedate me > > because that frame HURT, esp. since i had to wear it for five days > > and it was VERY uncomfortable to sleep in and to brush my teeth even. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Subject: Re: me again Grace, for me, who has had both open surgery several times and radiation as well, (FSR), I will say radiation is no where near the pain, etc..... and anxiety of surgery, for me anyway. Sheryn ___________________ > Hello Carol! > > The frame is for them to put on around your head (literally screwed > on, two screws in front, two back, OUCHIE you can still see the marks > on my forehead) so that once you go in the gamma knife machine, the > frame clicks onto the machine at the exact same spot for each > treatment; to make sure the radiation targets the center of the > tumour. That's why if you are there longer for a day (some go in for > just a day to zap newborn tumors) you have to sleep and basically go > on with the days until the frame is taking off. (that hurts too > actually, like an IV in your arm. hurts when they put it in, hurts > when they take it out. well it did for me anyway, some people can > take pain, i'm afraid of any sharp objects ;p) > > Yipee do da yeah *rolls eyes*, things we have to go through to treat > NF ;p > > My nurse tells me it's better than open brain surgery, but it's not > really fair to compare the two right? Both cases hurt. > > Grace > > > > > > What is the frame for Grace? > > Carol > > > > Hopefully they can sedate me > > > because that frame HURT, esp. since i had to wear it for five > days > > > and it was VERY uncomfortable to sleep in and to brush my teeth > even. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2002 Report Share Posted October 28, 2002 Hi Sheyrn! You know I had another person tell me if I receive radiation I would no longer be eligible for the ABI. However, it seems most people who do have the ABI don't really find it better and have it switched off ?? I have to talk to my hearing specialist about that, whether I would be eligible for an ABI and whether it would be worth it. I have terrible tinnitus, and wonder whether the ABI would just increase it. I guess because I received fractionated radiation, I had to wear the frame for five days. The doctors told me my ANs were too large for one day treatment. My ANs are 2.8 cm, were 's treated tumours smaller? I have written at the ANAC but find this mailing list, and especially talking with the people at the NNFF board to help me emotionally. Where did receive his treatment? And I'm sorry for the lack of knowledge, but what does HEI stand for? I hear you can't get a MRI scan done with an ABI, but you can still get a CAT scan? I have already had the right AN treated with gamma knife radiation and had MRIs done to see whether the swelling went down. So far MRI doesn't seem to be the problem. I just wish I had better pictures to look at ;p Grace > > Subject: Re: me again > > Grace are you in touch with ANAC at all? I'd reach them and get a new > location to have the Gamma Ray done. was done fairly recently, but not > at the location you mention. I have never heard of wearing the brace for 5 > days FOR Gamma Ray....and have you been offered or considered the ABI at > all? Some Canadians are sent to HEI in LA for it, but not many seem to know > about it being an option or anything about it really, especially out east. > If you have any questions, please don't hesitate to write. Please keep in > mind, radiation can effect your ability to have an MRI, but on the other > hand, I had both AN's radiated and the Brainstem and HEI still considered > giving me an ABI and they still consider me for one on the other side when I > go deaf. > Good Luck Grace, be firm and make them be good to you, I suggest a change of > location for the radiation, at least. > Hugs Grace, Sheryn in Saskatchewan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 You have a lot of wrong information. You can most certainly have an MRI with the current ABI. And I wear mine morning to night, 7 days a week. MOST people who have them, IF they have one that works, wear it a lot; I don't know a lot that have it switched off? feels when she has hers on, it covers the tinitus, but I don't have that problem, so cannot comment on that. HEI is House Ear Institute in Los Angeles, Marie Re: me again > > > > Grace are you in touch with ANAC at all? I'd reach them and get a > new > > location to have the Gamma Ray done. was done fairly > recently, but not > > at the location you mention. I have never heard of wearing the > brace for 5 > > days FOR Gamma Ray....and have you been offered or considered the > ABI at > > all? Some Canadians are sent to HEI in LA for it, but not many seem > to know > > about it being an option or anything about it really, especially > out east. > > If you have any questions, please don't hesitate to write. Please > keep in > > mind, radiation can effect your ability to have an MRI, but on the > other > > hand, I had both AN's radiated and the Brainstem and HEI still > considered > > giving me an ABI and they still consider me for one on the other > side when I > > go deaf. > > Good Luck Grace, be firm and make them be good to you, I suggest a > change of > > location for the radiation, at least. > > Hugs Grace, Sheryn in Saskatchewan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2002 Report Share Posted October 29, 2002 came to the University of Pittsburgh Medical Center-UPMC. Marie Re: me again > > > > > > Grace are you in touch with ANAC at all? I'd reach them and get a > > new > > > location to have the Gamma Ray done. was done fairly > > recently, but not > > > at the location you mention. I have never heard of wearing the > > brace for 5 > > > days FOR Gamma Ray....and have you been offered or considered the > > ABI at > > > all? Some Canadians are sent to HEI in LA for it, but not many seem > > to know > > > about it being an option or anything about it really, especially > > out east. > > > If you have any questions, please don't hesitate to write. Please > > keep in > > > mind, radiation can effect your ability to have an MRI, but on the > > other > > > hand, I had both AN's radiated and the Brainstem and HEI still > > considered > > > giving me an ABI and they still consider me for one on the other > > side when I > > > go deaf. > > > Good Luck Grace, be firm and make them be good to you, I suggest a > > change of > > > location for the radiation, at least. > > > Hugs Grace, Sheryn in Saskatchewan > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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