Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 yes, according to Dr. Brackmann, if I get the gamma knife the ABI wouldn't work well with me or work at all. And yes I did choose the Gamma Knife procedure for my right AN. However, unlike you, it couldn't save my hearing because of the size of the tumor-3.5 cm close to 4cm. However, it was able to save my facial nerve since the tumor was so close to it. According to people from this Crew, Dr. Brackmann has stated that scar tissue resulting from the radiation would affect the ABI or something. I'm not really sure what the exact words were but it had something to do with scar tissue. This email doesn't mean to pit the open surgery vs. Gamma Knife or any type of radiation therapy. A person's choice is up to them. However, I think a person should know ALL their alternatives and the pros and cons to each. But, to answer your question: yes, Dr. Brackmann said the ABI wouldn't work well, if I nuked (Gamma Knife) my tumors. Mark Couple of questions - Did you have gamma knife, and has anyone confirmed what Dr. Brackmann said about never being able to have an ABI? The reason I am asking is that I had gamma knife 4 years ago on the second bi-lateral tumor. So I have retained some hearing on the right side, but am totally deaf on the left side which was removed surgically. I have only recently heard of the ABI in the last couple of months and was just starting to research it as an option for myself. However, nobody has mentioned the fact that gamma knife would disqualify me in any of the literature that I have received to date. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 I am interested in the fact you had gamma knife and retained your hearing; can I ask you how big your tumor was that you had gamma knife on? Marie fauchon wrote: > > > Hi there Mark! > > Just read a comment you wrote awhile back. > > " Dr. Whitaker told me about the Gamma Knife because it had a lot of > success of treating NF2 tumors. > > When Dr. Brackmann had heard about it, he had called me up on the phone > saying that I had made a mistake in choosing that option AND stressed > that I could never get an ABI because of it. " > > Couple of questions - Did you have gamma knife, and has anyone confirmed > what Dr. Brackmann said about never being able to have an ABI? > > The reason I am asking is that I had gamma knife 4 years ago on the > second bi-lateral tumor. So I have retained some hearing on the right > side, but am totally deaf on the left side which was removed surgically. > I have only recently heard of the ABI in the last couple of months and > was just starting to research it as an option for myself. However, > nobody has mentioned the fact that gamma knife would disqualify me in > any of the literature that I have received to date. > > Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 1999 Report Share Posted July 11, 1999 Dillon where are you??? Mark, I may be wrong here but I'm thinking Pat Dillon told us just the opposite... That someone (maybe Brackman?) said you could still get the ABI if you have had GK. Of course it would depend on the amount of scar tissue you have from the treatment. Also, I'm wondering about this tumor you had zapped. I saw the GK team of Dallas about 4 years ago. I was about to have a walnut sized tumor surgically removed from behind my left eye. Wanted to see if it could be treated with GK instead of surgery. They said it was not a candidate, too large. What is the size limit? How long ago was your treatment? Has this tumor shown growth, stayed the same, shrunk? How long is the waiting period after GK to be safe from facial paralysis. I think I've heard it could be a few months after treatment before it set in. Carla thinking about Gamma Knife but interested in the ABI. Mark Sarmac wrote: > > > yes, according to Dr. Brackmann, if I get the gamma knife the ABI wouldn't > work well with me or work at all. And yes I did choose the Gamma Knife > procedure for my right AN. However, unlike you, it couldn't save my hearing > because of the size of the tumor-3.5 cm close to 4cm. However, it was able > to save my facial nerve since the tumor was so close to it. > > According to people from this Crew, Dr. Brackmann has stated that scar > tissue resulting from the radiation would affect the ABI or something. > I'm not really sure what the exact words were but it had something to do > with scar tissue. This email doesn't mean to pit the open surgery vs. Gamma > Knife or any type of radiation therapy. A person's choice is up to them. > However, I think a person should know ALL their alternatives and the pros > and cons to each. > > But, to answer your question: yes, Dr. Brackmann said the ABI wouldn't work > well, if I nuked (Gamma Knife) my tumors. > > Mark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Carla, I'm not sure about the specific sizes but last time I think that if it went over 3cms the chances of the Gamma Knife being successful goes down. My tumor was within the limit (3cm to 3.5cm) and that was 3 years ago at Good Samaritan's Hospital with Dr. Duma. It hasn't grown since and you could actually see blackspots. When I had my last MRI taken in July, the tumor was still there but it didn't show any signs of growth after 3 years. As for facial parlysis? I only got it temporarily only because I was in a stressful situation. It went away when I went to splash some cold water on it. Don't get me wrong, on occassion I get facial numbess, but it usually goes away. I don't really know what to tell you. Dr. Duma had told me the same thing about tumor size. However, when I went to UCLA with the X-Knife procedure, they had told me that the X Knife can treat any tumor of any size. So who knows. I had that treatment last January and when I went back for an MRI in 3 months, it showed signs of necrosis (dying) also. The bad news was the tumor was still there, the good news was it didn't grow. I go back again to UCLA next week for a doctor's check up and MRI so I'll let you know then. When I was at UCLA I saw a team of neusurgeons, but the main doctor that I saw or the main guy who was in charge of my case was Dr. De Salles. I can't fully give you all the answers, but perhaps he can. If you want you can email him and ask him specific questions. He can answer your questions better than I can. Dr. De Salles' email: desalles@... Good Luck. Mark ----Original Message Follows---- I was about to have a walnut sized tumor surgically removed from behind my left eye. Wanted to see if it could be treated with GK instead of surgery. They said it was not a candidate, too large. What is the size limit? How long ago was your treatment? Has this tumor shown growth, stayed the same, shrunk? How long is the waiting period after GK to be safe from facial paralysis. I think I've heard it could be a few months after treatment before it set in. Carla thinking about Gamma Knife but interested in the ABI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 I am not at all positive of this, but I thought that had been the ORIGINAL theory but now they are saying they can still do the ABI? Anyone know for sure? Marie Mark Sarmac wrote: > > > yes, according to Dr. Brackmann, if I get the gamma knife the ABI wouldn't > work well with me or work at all. And yes I did choose the Gamma Knife > procedure for my right AN. However, unlike you, it couldn't save my hearing > because of the size of the tumor-3.5 cm close to 4cm. However, it was able > to save my facial nerve since the tumor was so close to it. > > According to people from this Crew, Dr. Brackmann has stated that scar > tissue resulting from the radiation would affect the ABI or something. > I'm not really sure what the exact words were but it had something to do > with scar tissue. This email doesn't mean to pit the open surgery vs. Gamma > Knife or any type of radiation therapy. A person's choice is up to them. > However, I think a person should know ALL their alternatives and the pros > and cons to each. > > But, to answer your question: yes, Dr. Brackmann said the ABI wouldn't work > well, if I nuked (Gamma Knife) my tumors. > > Mark > > Couple of questions - Did you have gamma knife, and has anyone confirmed > what Dr. Brackmann said about never being able to have an ABI? > > The reason I am asking is that I had gamma knife 4 years ago on the > second bi-lateral tumor. So I have retained some hearing on the right > side, but am totally deaf on the left side which was removed surgically. > I have only recently heard of the ABI in the last couple of months and > was just starting to research it as an option for myself. However, > nobody has mentioned the fact that gamma knife would disqualify me in > any of the literature that I have received to date. > > Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 1999 Report Share Posted July 12, 1999 Heck, I don't read that the same way; if the tumor continues to shrink, why should that cause you any complications? I think you are darn lucky that your hearing was preserved; I have communicated with gamma/radiosurgery guys, and they both indicated that FRS was preferable if you need to save hearing! I'm glad it worked out for you! Marie fauchon wrote: > > > Hi There Marie! > > You asked me how large my tumor was that I had zapped. > > It was 2.5 cm. - relatively small in comparison to some of what I am > reading. > > I never did have any facial paralysis after gamma knife. In fact the > only complication that I can attribute to the gamma knife is immediately > after treatment I had some swelling of the brain stem which caused some > major stomach upsets overnight. I did also find that I was more tired > than usual for about a month following treatment. > > Now I was reviewing my health file and re-read a letter from the > hospital in Seattle where I had the gamma knife treatment. They > indicated that their longer follow up studies now show that these tumors > can continue to shrink on a slow, delayed basis over a period of as long > as even five to ten years. Now, not to borrow trouble, but I guess that > would indicate that I could still have some complications. > > Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 Marie - sorry - what is FRS? Now everyone will know what a dummy I am! Thea Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 1999 Report Share Posted July 14, 1999 No problem; FRS-fractionated radiosurgery; means radiosurgery in more/smaller doses; supposedly more chance of saving hearing nerve. Hope that helps. Marie TheaZielke@... wrote: > From: TheaZielke@... > > Marie - sorry - what is FRS? Now everyone will know what a dummy I am! Thea Quote Link to comment Share on other sites More sharing options...
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