Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Haaaaaaaaaaaaaaaaaaaaa i think so Dr ~~ your golf partner Dr Lowi:) Re: NF2/NF1 > guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough > to believe nf1 and nf2 most definietly does over lap no matter what dr's and > researchers contend. We should all have doctorate degrees! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Haaaaaaaaaaaaaaaaaaaaa i think so Dr ~~ your golf partner Dr Lowi:) Re: NF2/NF1 > guess that means fellow crewbies shud NOT procreate! Ive seen and heard enough > to believe nf1 and nf2 most definietly does over lap no matter what dr's and > researchers contend. We should all have doctorate degrees! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Great Stories ! LOVED EM Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Great Stories ! LOVED EM Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 Great Stories ! LOVED EM Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Hi Marie, He did not mention how the radiosurgery outcome of the tumors (NF2 vs unilateral) differred (or at least, I did not pick it up). I would like to know this too. I suspect there is a difference but how much?? I was getting cold feet too because I went to Pittsburgh around the time of the article slamming GK on NF2 people. Joanie's surgery has not gone well but we'll never know what caused the problems (there are just too many things we dont know about). I think you should not look at an individual case but try and get a big picture. I think my tumor was about 1.5 cm when I had GK. My last MRI in Toronto showed it to be 14 by 10 mm in the summer of '99 and I had GK early in 2000 (not January in case the machine had any Y2K problems!). Anyway, it was well below the 3 cm cut off size. It was a tough call because you don't want to do anything if you don't have to. But if you leave it too long, you may be risking complications. There could be complications even with a small tumor so you never know. My doctor in Toronto said to go for it while the tumor was relatively small and I followed his advice. You may have heard of him (Dr. Tator) as he was a long time chairman of the ANAC medical board. A very good and caring doctor. Anyway, I wish you luck in what you decide. Re: New Members & Harry Vershaw > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > >being > >> completely separate, and that maybe somebody can have NF1 and NF2?? > Marie > >> -----Original Message----- > >> > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 , I'm reading the message you wrote to Marie I'm wondering in your opinion do you think there is hope for a tumor as big as Mikes arm??? just wondering as you seem to have some knowledge about NF and tumor size... Lois Re: New Members & Harry Vershaw > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > > >being > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > Marie > > >> -----Original Message----- > > >> > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 , I'm reading the message you wrote to Marie I'm wondering in your opinion do you think there is hope for a tumor as big as Mikes arm??? just wondering as you seem to have some knowledge about NF and tumor size... Lois Re: New Members & Harry Vershaw > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > > >being > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > Marie > > >> -----Original Message----- > > >> > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 , I'm reading the message you wrote to Marie I'm wondering in your opinion do you think there is hope for a tumor as big as Mikes arm??? just wondering as you seem to have some knowledge about NF and tumor size... Lois Re: New Members & Harry Vershaw > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > > >being > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > Marie > > >> -----Original Message----- > > >> > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Hi Lois, I think there is always hope for a good outcome. I am not an expert on this but most doctors seem to agree that smaller tumors tend to have a smaller risk of complications. The key word is " risk " because there are risks in every operation. A person with a huge tumor may have a good outcome and someone with a small one may have lots of complications. I think a lot depends on the tumor location too. My doctor told me once that they can sometimes tell from the MRI how difficult a tumor will be to remove. When you say " a tumor the size of Mikes arm " I guess you mean the cross-section of someone's arm. The cross-section of my arm was about 6 cm by 4 cm. That would be a pretty big tumor but I heard of people with bigger ones. I think radiosurgery is out of the question for a tumor that size. I think if I had a tumor that size, I think I would bite the bullet and go for the operation very soon (assuming they could operate on it). It all depends too on what the doctor says. I hope this helps. Please understand this is only my opinion on a general question. Re: New Members & Harry Vershaw > > > > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not always > > > >being > > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > > Marie > > > >> -----Original Message----- > > > >> > > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Hi Lois, Your msg. to and thinking about Mike's arm tumor reminded me of the arm tumor Ken had removed way back. I quickly found two messages where he talked about it. Here's the parts you may be interested in: " Greetings, I had surgery yesterday to remove a 3 1/2 " dia tumor deep inside my left arm pit. It went so well that I went home 6 hours later. My Neuro was expecting to trim it way down (his preference), he used micro surgery and removed the whole thing instead (since he was able to avoid the main blood artery). I've got this huge hole there but it will fill in eventually. My left hand fingers are a tad stronger and all I gave up was some numbness at the bottom of my forearm from my wrist to my elbow. Didn't care for the pain med's (codeine) and changed to Advil. Damn, this was a sweet victory ... Nice to see good news going around the CREW these days. " .... " I also use Dr. Jun at Kaiser's main neuro center in Redwood City, Calif. This Doctor is TOTAL skill. He's the one who took out the 3 1/2 " pit tumor recently and saved my entire arm. " Both were dated early April, 1998, so I have no idea if the surgeon is still there, but thought that his success may give you guys some hope. It looks like there should be some surgeons out there with experience and success with these kinds of tumors. I'm still keeping your whole family in my thoughts. Love and Hugs, Rigo wrote: > Thanks , > understood its only your opinion but I watch and read a lot on the > Crew... You are pretty good ... the tumor of Mikes well its right > below the shoulder on the muscle ... and now measures 30 niches round... I > know I know it probably cant have radiation thereBut there is a smaller > tumor in the other arm that's on the move and that's the one we are > concerned about getting out before it take away the use of that arm > completely ... I have no idea yet how big it is ... we get the MRI'S this > Friday in Pittsburgh... needed the spirals for that ... any way thanks for > your best guess ... I really am praying for a chance to have one arm. > saved .. but will except what we get ... as always Lois > Re: NF2/NF1 > > > > > > > , > > > I'm reading the message you wrote to Marie I'm wondering in your > > opinion > > > do you think there is hope for a tumor as big as Mikes arm??? just > > wondering > > > as you seem to have some knowledge about NF and tumor size... Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Hi Lois, Your msg. to and thinking about Mike's arm tumor reminded me of the arm tumor Ken had removed way back. I quickly found two messages where he talked about it. Here's the parts you may be interested in: " Greetings, I had surgery yesterday to remove a 3 1/2 " dia tumor deep inside my left arm pit. It went so well that I went home 6 hours later. My Neuro was expecting to trim it way down (his preference), he used micro surgery and removed the whole thing instead (since he was able to avoid the main blood artery). I've got this huge hole there but it will fill in eventually. My left hand fingers are a tad stronger and all I gave up was some numbness at the bottom of my forearm from my wrist to my elbow. Didn't care for the pain med's (codeine) and changed to Advil. Damn, this was a sweet victory ... Nice to see good news going around the CREW these days. " .... " I also use Dr. Jun at Kaiser's main neuro center in Redwood City, Calif. This Doctor is TOTAL skill. He's the one who took out the 3 1/2 " pit tumor recently and saved my entire arm. " Both were dated early April, 1998, so I have no idea if the surgeon is still there, but thought that his success may give you guys some hope. It looks like there should be some surgeons out there with experience and success with these kinds of tumors. I'm still keeping your whole family in my thoughts. Love and Hugs, Rigo wrote: > Thanks , > understood its only your opinion but I watch and read a lot on the > Crew... You are pretty good ... the tumor of Mikes well its right > below the shoulder on the muscle ... and now measures 30 niches round... I > know I know it probably cant have radiation thereBut there is a smaller > tumor in the other arm that's on the move and that's the one we are > concerned about getting out before it take away the use of that arm > completely ... I have no idea yet how big it is ... we get the MRI'S this > Friday in Pittsburgh... needed the spirals for that ... any way thanks for > your best guess ... I really am praying for a chance to have one arm. > saved .. but will except what we get ... as always Lois > Re: NF2/NF1 > > > > > > > , > > > I'm reading the message you wrote to Marie I'm wondering in your > > opinion > > > do you think there is hope for a tumor as big as Mikes arm??? just > > wondering > > > as you seem to have some knowledge about NF and tumor size... Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Hi Lois, Your msg. to and thinking about Mike's arm tumor reminded me of the arm tumor Ken had removed way back. I quickly found two messages where he talked about it. Here's the parts you may be interested in: " Greetings, I had surgery yesterday to remove a 3 1/2 " dia tumor deep inside my left arm pit. It went so well that I went home 6 hours later. My Neuro was expecting to trim it way down (his preference), he used micro surgery and removed the whole thing instead (since he was able to avoid the main blood artery). I've got this huge hole there but it will fill in eventually. My left hand fingers are a tad stronger and all I gave up was some numbness at the bottom of my forearm from my wrist to my elbow. Didn't care for the pain med's (codeine) and changed to Advil. Damn, this was a sweet victory ... Nice to see good news going around the CREW these days. " .... " I also use Dr. Jun at Kaiser's main neuro center in Redwood City, Calif. This Doctor is TOTAL skill. He's the one who took out the 3 1/2 " pit tumor recently and saved my entire arm. " Both were dated early April, 1998, so I have no idea if the surgeon is still there, but thought that his success may give you guys some hope. It looks like there should be some surgeons out there with experience and success with these kinds of tumors. I'm still keeping your whole family in my thoughts. Love and Hugs, Rigo wrote: > Thanks , > understood its only your opinion but I watch and read a lot on the > Crew... You are pretty good ... the tumor of Mikes well its right > below the shoulder on the muscle ... and now measures 30 niches round... I > know I know it probably cant have radiation thereBut there is a smaller > tumor in the other arm that's on the move and that's the one we are > concerned about getting out before it take away the use of that arm > completely ... I have no idea yet how big it is ... we get the MRI'S this > Friday in Pittsburgh... needed the spirals for that ... any way thanks for > your best guess ... I really am praying for a chance to have one arm. > saved .. but will except what we get ... as always Lois > Re: NF2/NF1 > > > > > > > , > > > I'm reading the message you wrote to Marie I'm wondering in your > > opinion > > > do you think there is hope for a tumor as big as Mikes arm??? just > > wondering > > > as you seem to have some knowledge about NF and tumor size... Lois Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Thanks , understood its only your opinion but I watch and read a lot on the Crew... You are pretty good ... the tumor of Mikes well its right below the shoulder on the muscle ... and now measures 30 niches round... I know I know it probably cant have radiation thereBut there is a smaller tumor in the other arm that's on the move and that's the one we are concerned about getting out before it take away the use of that arm completely ... I have no idea yet how big it is ... we get the MRI'S this Friday in Pittsburgh... needed the spirals for that ... any way thanks for your best guess ... I really am praying for a chance to have one arm. saved .. but will except what we get ... as always Lois Re: New Members & Harry Vershaw > > > > > > > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not > always > > > > >being > > > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > > > Marie > > > > >> -----Original Message----- > > > > >> > > > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Thanks , understood its only your opinion but I watch and read a lot on the Crew... You are pretty good ... the tumor of Mikes well its right below the shoulder on the muscle ... and now measures 30 niches round... I know I know it probably cant have radiation thereBut there is a smaller tumor in the other arm that's on the move and that's the one we are concerned about getting out before it take away the use of that arm completely ... I have no idea yet how big it is ... we get the MRI'S this Friday in Pittsburgh... needed the spirals for that ... any way thanks for your best guess ... I really am praying for a chance to have one arm. saved .. but will except what we get ... as always Lois Re: New Members & Harry Vershaw > > > > > > > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not > always > > > > >being > > > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > > > Marie > > > > >> -----Original Message----- > > > > >> > > > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2002 Report Share Posted March 27, 2002 Thanks , understood its only your opinion but I watch and read a lot on the Crew... You are pretty good ... the tumor of Mikes well its right below the shoulder on the muscle ... and now measures 30 niches round... I know I know it probably cant have radiation thereBut there is a smaller tumor in the other arm that's on the move and that's the one we are concerned about getting out before it take away the use of that arm completely ... I have no idea yet how big it is ... we get the MRI'S this Friday in Pittsburgh... needed the spirals for that ... any way thanks for your best guess ... I really am praying for a chance to have one arm. saved .. but will except what we get ... as always Lois Re: New Members & Harry Vershaw > > > > > > > > > > > > > > >> Seems to add more weight to the theories about NF2 and NF1 not > always > > > > >being > > > > >> completely separate, and that maybe somebody can have NF1 and NF2?? > > > > Marie > > > > >> -----Original Message----- > > > > >> > > > > >> To: NF2_Crew <NF2_Crew > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Thank you so very much You really did more than make my day I'm copying this for Mike But I wanted you to know you gave us a thread to hold on to till we get results back as we don't talk to Drs till some time in April ...So a big thank you for remembering this letter ... & HAPPY EASTER TO YOUR FAMILY ... HUGS Lois oh yes thank you very much for the prayers ... my hubby is doing better now also not great yet but better ... Re: NF2/NF1 > > > > > > > > > > , > > > > I'm reading the message you wrote to Marie I'm wondering in your > > > opinion > > > > do you think there is hope for a tumor as big as Mikes arm??? just > > > wondering > > > > as you seem to have some knowledge about NF and tumor size... Lois > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2002 Report Share Posted March 28, 2002 Thank you so very much You really did more than make my day I'm copying this for Mike But I wanted you to know you gave us a thread to hold on to till we get results back as we don't talk to Drs till some time in April ...So a big thank you for remembering this letter ... & HAPPY EASTER TO YOUR FAMILY ... HUGS Lois oh yes thank you very much for the prayers ... my hubby is doing better now also not great yet but better ... Re: NF2/NF1 > > > > > > > > > > , > > > > I'm reading the message you wrote to Marie I'm wondering in your > > > opinion > > > > do you think there is hope for a tumor as big as Mikes arm??? just > > > wondering > > > > as you seem to have some knowledge about NF and tumor size... Lois > > > > > Quote Link to comment Share on other sites More sharing options...
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