Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 > > >Uh well, from MY own experience Jeanette, I had GAmma Knife done to my right >AN 3 years ago and it hasn't grown since. It actually has gone into necrosis >(molecular death). There hasn't been any regrowth and many of my doctors >highly doubt that it will regrow. > >Mark Thank you, Mark. My regrowths (both) did not service for at least 13 years after they were first removed. I call that round 1 back then. I had a very long breather for over a decade, and I'm now entering round 2 here. I'm very confused bc we have so many options out there now. Back in '83 we really did not have very many choices. Jennette [Oregon] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 Hi Marie, Just wanted to sound off about the radiation. I had the Gamma Knife radiation in April 1996. It was for a very small AN on the right side. I could hear out of that ear before the radiation. After the radiation. I went totally deaf. I was all ready deaf in the left ear. The Gamma Knife cost me my hearing in the right ear, when I was told that it would preserve or make it better...I had a lot of swelling from the radiation. It also cost me my balance. My vestibular (balancing mechanism) was destroyed. It was bad enough to lose the hearing but to lose the balance too! I was dealt a double WHAMMY! Therapy has taught me how to walk and balance myself (not as good as I use to) in certain situations. I don't believe I will ever have the radiation again. It really scared me! I hear just a touch of noise that helps me to read lips. Actually I have been reading lips all my life. I had an AN (pear shaped, pushing towards the brainstem) removed on the left side in Jan of 91 that cause me to be deaf in the left ear as far back as the second grade. I guess that thing had been growing that long. ....Guess I better stop or I will talk forever. Hugs, Pat B from San , Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 I had the GKR on a tumor in my head in 96. About the only side effect I suffered from was the vomiting & nausea after the procedure. JEFF I would like to know any adverse affects people who have had radiation experienced; We know Kari had swelling; how about the rest of you? If you had NO affects, would you also comment? It would be helpful if you would say what kind of radiation and how long ago it was. Thanks. Marie radiation >From: Mybear7980@... > >Crew, > >I have been 'zapped' by the Gamma Knife also. Same doc as Marc, Dr. Duma. I >plan on taking my daughter to him as a second opinion on her AN. For Olivia, >because she is only 17 we will probably go with surgery. I have a lot of >faith in my surgeon and I think it's the right decision. For me, I had no >choice. I had a doctor that didn't believe in radiation. Most of you know >my story. When physical problems that couldn't be ignored any longer >presented themselves my doctor did an angiogram. I watched the whole thing. >I saw with my own eyes where the tumor was and how it was invading the blood >vessel. While on the table I asked my doctor how long I had to live. He >told me about six months. He never said one word about any kind of >radiation. When I finally did see Dr. Duma he assured me he could treat the >tumor. I had three 'zapped' during that session. I'm not talking AN's >though. My AN's were done by the surgeon. The tumors treated by the gamma >knife have all responded to the treatment. The tumor that was invading the >blood vessel has receded and is no longer an immediate threat and probably >won't ever be again. Both the the second and third tumors have stopped >growing and are actually a little smaller. > >One point that has been brought up is swelling. That is something that >happened to me and it seemed like I had a severe stroke. Nobody knew what to >do. IV steriods brought the swelling down and I was then fine, but not until >I scared my whole family to pieces. > >It's so difficult to decide which treatment is best now when we have to think >of future tumors. I'm really impressed with the research and knowledge crew >members seek and how much responsibility is taken for our own medical care. > >Kari >MyBear7980@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 It is amazing how some people have radiation and no effects, some retain their hearing, some loose their hearing and have effects. Sure makes decisions difficult! I have a 3 cm tumor and chances of saving my hearing with microsurgery or about nil. I appreciate your input. Marie Re: radiation >From: RWBARTELL@... > >Hi Marie, > > Just wanted to sound off about the radiation. I had the Gamma Knife >radiation in April 1996. It was for a very small AN on the right side. I >could hear out of that ear before the radiation. After the radiation. I went >totally deaf. I was all ready deaf in the left ear. The Gamma Knife cost me >my hearing in the right ear, when I was told that it would preserve or make >it better...I had a lot of swelling from the radiation. It also cost me my >balance. My vestibular (balancing mechanism) was destroyed. It was bad enough >to lose the hearing but to lose the balance too! I was dealt a double WHAMMY! >Therapy has taught me how to walk and balance myself (not as good as I use >to) in certain situations. I don't believe I will ever have the radiation >again. It really scared me! I hear just a touch of noise that helps me to >read lips. Actually I have been reading lips all my life. I had an AN (pear >shaped, pushing towards the brainstem) removed on the left side in Jan of 91 >that cause me to be deaf in the left ear as far back as the second grade. I >guess that thing had been growing that long. ....Guess I better stop or I >will talk forever. > >Hugs, >Pat B from San , Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 30, 1999 Report Share Posted September 30, 1999 One other thing, where did you have your gamma knife /radiation?? Marie Re: radiation >From: RWBARTELL@... > >Hi Marie, > > Just wanted to sound off about the radiation. I had the Gamma Knife >radiation in April 1996. It was for a very small AN on the right side. I >could hear out of that ear before the radiation. After the radiation. I went >totally deaf. I was all ready deaf in the left ear. The Gamma Knife cost me >my hearing in the right ear, when I was told that it would preserve or make >it better...I had a lot of swelling from the radiation. It also cost me my >balance. My vestibular (balancing mechanism) was destroyed. It was bad enough >to lose the hearing but to lose the balance too! I was dealt a double WHAMMY! >Therapy has taught me how to walk and balance myself (not as good as I use >to) in certain situations. I don't believe I will ever have the radiation >again. It really scared me! I hear just a touch of noise that helps me to >read lips. Actually I have been reading lips all my life. I had an AN (pear >shaped, pushing towards the brainstem) removed on the left side in Jan of 91 >that cause me to be deaf in the left ear as far back as the second grade. I >guess that thing had been growing that long. ....Guess I better stop or I >will talk forever. > >Hugs, >Pat B from San , Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 Marie, I had Gamma Knife done twice, once 9 years ago, and once 3 years ago. Both times I had headaches and was tired, but that was the only side effect I had and that was just immediately following. The second time they nuked about 15 small tumors in my head. The first time was when I had my AN treated on my left side. I know one of the concerns is long time effect, and I don't have any! Donna from Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 In a message dated 09/30/1999 7:43:42 PM Pacific Daylight Time, RWBARTELL@... writes: << Hi Marie, Just wanted to sound off about the radiation. I had the Gamma Knife radiation in April 1996. It was for a very small AN on the right side. I could hear out of that ear before the radiation. After the radiation. I went totally deaf. I was all ready deaf in the left ear. The Gamma Knife cost me my hearing in the right ear, when I was told that it would preserve or make it better...I had a lot of swelling from the radiation. It also cost me my balance. My vestibular (balancing mechanism) was destroyed. It was bad enough to lose the hearing but to lose the balance too! I was dealt a double WHAMMY! >> I had the same result with FSR in April '97. TR Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 1999 Report Share Posted October 1, 1999 I ha sterstatic radiation done about 3 years ago on an optic nerve tumor. It stopped the growth of the tumor. I had experienced no side effects, that I know of. Joanie Quote Link to comment Share on other sites More sharing options...
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