Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 I don't know anything about the first question, but the second one I would say is related to the indivdual and their gene make-up, lifestyle...just a bunch of different things. Your third question I have been told yes, but mostly for NF1. I have heard stories where people have hit something hard and eventually a tumor shows up. This is no doubt individual also. Carol Any thoughts i wondered if anyone out there knew or had any experience or thoughts on the following... mobile phones-can they hasten tumor formation and growth in those of us who are predisposed to develop brain tumors. if so do anti-radiation gadgets you can attach to phones actually work? cycles of growth-my first AN tumor clump was thought to have grown to 2.5 c.m in 4 years. My next two menninginomas have also grown to this size in 4 years. Is growth rate often related to the individual? Or is it a coincidence?? Physical Trauma-can surgery act as a trigger to stimulate new tumor growth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 Tumors Induced by Radio Frequency (RF) (mobile phones, walkie talkies what have you), the answer to your question is, depends on who you ask. There are as many studies to prove there is a connection as to disprove. I don't think you have too much to worry about from your Cell Phone, as they put out very low power (typically less than a watt). In comparison the average portable two way radio like a cop carries, puts out up to 5 watts. As for the thingies you stick on the phone to decrease exposure, they are a marketing gimmick for the most part. It's also noteworthy that the tumors that are allegedly caused by RF (see above) are Cancerous, not NF tumors. I don't think there is any correlation of NF tumors to RF exposure. Pete -----Original Message-----From: julie broome Sent: Wednesday, January 01, 2003 5:15 PMTo: NF2_Crew Subject: Any thoughts i wondered if anyone out there knew or had any experience or thoughts on the following... mobile phones-can they hasten tumor formation and growth in those of us who are predisposed to develop brain tumors. if so do anti-radiation gadgets you can attach to phones actually work? cycles of growth-my first AN tumor clump was thought to have grown to 2.5 c.m in 4 years. My next two menninginomas have also grown to this size in 4 years. Is growth rate often related to the individual? Or is it a coincidence?? Physical Trauma-can surgery act as a trigger to stimulate new tumor growth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi , My quick comments on my experiences: (no mobile phone experience) cycles of growth--my brain tumors have been inconsistent in growth; spinal tumors also inconsistent; a tumor behind my knee grew outrageously fast. physical trauma--I don't think I had any meningiomas before my first AN was removed... I suspect that my very first surgery set things in motion a bit more, but it's hard to tell whether I would have developed all the other tumors I did whether or not I had surgery. (it was late-teens for me) In the years after my first surgery, I was also taking prednisone long-term to preserve hearing and that taxed my body greatly. I think stress is a big enemy for most of us.... so surgery could be one type of stress and leaving a tumor to tax our bodies could be another type of stress. Surgery was a large source of physical trauma for me the first 5 years following my diagnosis, and then 2 years elapsed before a surgery that finally left me in better shape than when I went in... and in the last 4 years I've developed a lot of new tumors, but have not had any surgeries... mainly because the trauma and risks of surgery does not outweigh the trauma of the growing tumors for me right now. Hugs, julie broome wrote: i wondered if anyone out there knew or had any experience or thoughts on the following... cycles of growth-my first AN tumor clump was thought to have grown to 2.5 c.m in 4 years. My next two menninginomas have also grown to this size in 4 years. Is growth rate often related to the individual? Or is it a coincidence?? Physical Trauma-can surgery act as a trigger to stimulate new tumor growth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 thanks peter for getting back to me. i am releaved about the mobie phone thing . i have had slowish growing menniginomas for the past 4 years however in the past year they each had grown by a third 5mm instead of 1mm. i was concerned that it may have directly coresponded to my much greater use of the mobile phone as i have started using it for up to 20 minutes a day during that time period. i thought i may have inadvertently caused my tumours to grow faster over something i could so easily have avoided feel much better now thanks julie > >Reply-To: NF2_Crew >To: <NF2_Crew > >Subject: RE: Any thoughts >Date: Wed, 1 Jan 2003 18:38:21 -0500 > >Tumors Induced by Radio Frequency (RF) (mobile phones, walkie talkies what >have you), the answer to your question is, depends on who you ask. There >are >as many studies to prove there is a connection as to disprove. I don't >think >you have too much to worry about from your Cell Phone, as they put out very >low power (typically less than a watt). In comparison the average portable >two way radio like a cop carries, puts out up to 5 watts. > As for the thingies you stick on the phone to decrease exposure, they >are >a marketing gimmick for the most part. > >It's also noteworthy that the tumors that are allegedly caused by RF (see >above) are Cancerous, not NF tumors. I don't think there is any correlation >of NF tumors to RF exposure. > >Pete > Any thoughts > > > i wondered if anyone out there knew or had any experience or thoughts on >the following... > a.. mobile phones-can they hasten tumor formation and growth in those >of >us who are predisposed to develop brain tumors. if so do anti-radiation >gadgets you can attach to phones actually work? > b.. cycles of growth-my first AN tumor clump was thought to have grown >to 2.5 c.m in 4 years. My next two menninginomas have also grown to this >size in 4 years. Is growth rate often related to the individual? Or is it a >coincidence?? > c.. Physical Trauma-can surgery act as a trigger to stimulate new >tumor >growth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 thanks peter for getting back to me. i am releaved about the mobie phone thing . i have had slowish growing menniginomas for the past 4 years however in the past year they each had grown by a third 5mm instead of 1mm. i was concerned that it may have directly coresponded to my much greater use of the mobile phone as i have started using it for up to 20 minutes a day during that time period. i thought i may have inadvertently caused my tumours to grow faster over something i could so easily have avoided feel much better now thanks julie > >Reply-To: NF2_Crew >To: <NF2_Crew > >Subject: RE: Any thoughts >Date: Wed, 1 Jan 2003 18:38:21 -0500 > >Tumors Induced by Radio Frequency (RF) (mobile phones, walkie talkies what >have you), the answer to your question is, depends on who you ask. There >are >as many studies to prove there is a connection as to disprove. I don't >think >you have too much to worry about from your Cell Phone, as they put out very >low power (typically less than a watt). In comparison the average portable >two way radio like a cop carries, puts out up to 5 watts. > As for the thingies you stick on the phone to decrease exposure, they >are >a marketing gimmick for the most part. > >It's also noteworthy that the tumors that are allegedly caused by RF (see >above) are Cancerous, not NF tumors. I don't think there is any correlation >of NF tumors to RF exposure. > >Pete > Any thoughts > > > i wondered if anyone out there knew or had any experience or thoughts on >the following... > a.. mobile phones-can they hasten tumor formation and growth in those >of >us who are predisposed to develop brain tumors. if so do anti-radiation >gadgets you can attach to phones actually work? > b.. cycles of growth-my first AN tumor clump was thought to have grown >to 2.5 c.m in 4 years. My next two menninginomas have also grown to this >size in 4 years. Is growth rate often related to the individual? Or is it a >coincidence?? > c.. Physical Trauma-can surgery act as a trigger to stimulate new >tumor >growth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 thanks for your reply carol i think i too heard something about physical traumer but like i think it may have been an nf1 case. perhaps its because our tumours are harder to get to. I'm interested because a year after my initial surgery 2 more tumors 1cm each appeared as if from nowhere and as they now need removing i was hoping this would not stimulate further tumors to grow julie > >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: Any thoughts >Date: Wed, 01 Jan 2003 17:21:11 -0500 > >I don't know anything about the first question, but the second one I would >say is related to the indivdual and their gene make-up, lifestyle...just a >bunch of different things. >Your third question I have been told yes, but mostly for NF1. I have heard >stories where people have hit something hard and eventually a tumor shows >up. This is no doubt individual also. > >Carol > > Any thoughts > > > i wondered if anyone out there knew or had any experience or thoughts on >the following... > a.. mobile phones-can they hasten tumor formation and growth in those >of us who are predisposed to develop brain tumors. if so do anti-radiation >gadgets you can attach to phones actually work? > b.. cycles of growth-my first AN tumor clump was thought to have grown >to 2.5 c.m in 4 years. My next two menninginomas have also grown to this >size in 4 years. Is growth rate often related to the individual? Or is it a >coincidence?? > c.. Physical Trauma-can surgery act as a trigger to stimulate new >tumor growth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 thanks for your reply carol i think i too heard something about physical traumer but like i think it may have been an nf1 case. perhaps its because our tumours are harder to get to. I'm interested because a year after my initial surgery 2 more tumors 1cm each appeared as if from nowhere and as they now need removing i was hoping this would not stimulate further tumors to grow julie > >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: Any thoughts >Date: Wed, 01 Jan 2003 17:21:11 -0500 > >I don't know anything about the first question, but the second one I would >say is related to the indivdual and their gene make-up, lifestyle...just a >bunch of different things. >Your third question I have been told yes, but mostly for NF1. I have heard >stories where people have hit something hard and eventually a tumor shows >up. This is no doubt individual also. > >Carol > > Any thoughts > > > i wondered if anyone out there knew or had any experience or thoughts on >the following... > a.. mobile phones-can they hasten tumor formation and growth in those >of us who are predisposed to develop brain tumors. if so do anti-radiation >gadgets you can attach to phones actually work? > b.. cycles of growth-my first AN tumor clump was thought to have grown >to 2.5 c.m in 4 years. My next two menninginomas have also grown to this >size in 4 years. Is growth rate often related to the individual? Or is it a >coincidence?? > c.. Physical Trauma-can surgery act as a trigger to stimulate new >tumor growth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 thanks for your reply carol i think i too heard something about physical traumer but like i think it may have been an nf1 case. perhaps its because our tumours are harder to get to. I'm interested because a year after my initial surgery 2 more tumors 1cm each appeared as if from nowhere and as they now need removing i was hoping this would not stimulate further tumors to grow julie > >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: Any thoughts >Date: Wed, 01 Jan 2003 17:21:11 -0500 > >I don't know anything about the first question, but the second one I would >say is related to the indivdual and their gene make-up, lifestyle...just a >bunch of different things. >Your third question I have been told yes, but mostly for NF1. I have heard >stories where people have hit something hard and eventually a tumor shows >up. This is no doubt individual also. > >Carol > > Any thoughts > > > i wondered if anyone out there knew or had any experience or thoughts on >the following... > a.. mobile phones-can they hasten tumor formation and growth in those >of us who are predisposed to develop brain tumors. if so do anti-radiation >gadgets you can attach to phones actually work? > b.. cycles of growth-my first AN tumor clump was thought to have grown >to 2.5 c.m in 4 years. My next two menninginomas have also grown to this >size in 4 years. Is growth rate often related to the individual? Or is it a >coincidence?? > c.. Physical Trauma-can surgery act as a trigger to stimulate new >tumor growth > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 wow jamie i do find it fascinating this pattern of tumor growth. my surgery to remove my first AN (late 20s) seemed to stimulate 2 new menningiomas a year later. these now need removing i wondered if the surgery may promote more?? how many bouts of surgery have you had? in simple lay mans terms what does prednisone do-did you hav ANs in your other ear when you started to take it-and what was the down side. thanks for the hugs many returned julie > >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: Any thoughts >Date: Thu, 02 Jan 2003 05:37:05 -0500 > >Hi , >My quick comments on my experiences: >(no mobile phone experience) >cycles of growth--my brain tumors have been inconsistent in growth; >spinal tumors also inconsistent; a tumor behind my knee grew >outrageously fast. >physical trauma--I don't think I had any meningiomas before my first AN >was removed... I suspect that my very first surgery set things in motion >a bit more, but it's hard to tell whether I would have developed all the >other tumors I did whether or not I had surgery. (it was late-teens for >me) In the years after my first surgery, I was also taking prednisone >long-term to preserve hearing and that taxed my body greatly. I think >stress is a big enemy for most of us.... so surgery could be one type of >stress and leaving a tumor to tax our bodies could be another type of >stress. Surgery was a large source of physical trauma for me the first >5 years following my diagnosis, and then 2 years elapsed before a >surgery that finally left me in better shape than when I went in... and >in the last 4 years I've developed a lot of new tumors, but have not had >any surgeries... mainly because the trauma and risks of surgery does not >outweigh the trauma of the growing tumors for me right now. Hugs, > > >julie broome wrote: > > > >* i wondered if anyone out there knew or had any experience or thoughts > > on the following... > > > > * cycles of growth-my first AN tumor clump was thought to have > > grown to 2.5 c.m in 4 years. My next two menninginomas have also > > grown to this size in 4 years. Is growth rate often related to > > the individual? Or is it a coincidence?? > > > > Physical Trauma-can surgery act as a trigger to stimulate new > > tumor growth > > _________________________________________________________________ Add photos to your e-mail with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 wow jamie i do find it fascinating this pattern of tumor growth. my surgery to remove my first AN (late 20s) seemed to stimulate 2 new menningiomas a year later. these now need removing i wondered if the surgery may promote more?? how many bouts of surgery have you had? in simple lay mans terms what does prednisone do-did you hav ANs in your other ear when you started to take it-and what was the down side. thanks for the hugs many returned julie > >Reply-To: NF2_Crew >To: NF2_Crew >Subject: Re: Any thoughts >Date: Thu, 02 Jan 2003 05:37:05 -0500 > >Hi , >My quick comments on my experiences: >(no mobile phone experience) >cycles of growth--my brain tumors have been inconsistent in growth; >spinal tumors also inconsistent; a tumor behind my knee grew >outrageously fast. >physical trauma--I don't think I had any meningiomas before my first AN >was removed... I suspect that my very first surgery set things in motion >a bit more, but it's hard to tell whether I would have developed all the >other tumors I did whether or not I had surgery. (it was late-teens for >me) In the years after my first surgery, I was also taking prednisone >long-term to preserve hearing and that taxed my body greatly. I think >stress is a big enemy for most of us.... so surgery could be one type of >stress and leaving a tumor to tax our bodies could be another type of >stress. Surgery was a large source of physical trauma for me the first >5 years following my diagnosis, and then 2 years elapsed before a >surgery that finally left me in better shape than when I went in... and >in the last 4 years I've developed a lot of new tumors, but have not had >any surgeries... mainly because the trauma and risks of surgery does not >outweigh the trauma of the growing tumors for me right now. Hugs, > > >julie broome wrote: > > > >* i wondered if anyone out there knew or had any experience or thoughts > > on the following... > > > > * cycles of growth-my first AN tumor clump was thought to have > > grown to 2.5 c.m in 4 years. My next two menninginomas have also > > grown to this size in 4 years. Is growth rate often related to > > the individual? Or is it a coincidence?? > > > > Physical Trauma-can surgery act as a trigger to stimulate new > > tumor growth > > _________________________________________________________________ Add photos to your e-mail with MSN 8. Get 2 months FREE*. http://join.msn.com/?page=features/featuredemail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 Hi , julie broome wrote: > wow jamie > i do find it fascinating this pattern of tumor growth. my surgery to remove > my first AN (late 20s) seemed to stimulate 2 new menningiomas a year later. > these now need removing i wondered if the surgery may promote more?? I really don't know. Like Carol mentioned, with individual tumor trajectories varying so much, it's hard to tell whether it's surgery or just how NF2 is for an individual. There seem to be experiences going both ways.... more tumors with surgery and more tumors without surgery. > how many bouts of surgery have you had? 1991 winter-easiest one.... right-side AN removed (had already lost hearing) 1995 summer-large tumor behind right knee removed (was threatening blood supply to leg, very very painful too); surgery went well 1995 winter-quite a bit harder surgery to remove regrowth on right side and implant an ABI; lost smile with this one and returned to school before I was ready... (hearing on left side was poor by now and I knew it was close to being gone) 1996 summer-left AN had to come out.... developed rare blood infection post-op, very high fever for a long time and almost died, needed exploratory surgery, another surgery to place a shunt in my head to drain fluid to my stomach, had digestive problems and many more complications from prednisone too; I now consider this experience as my second infancy in life. It was pretty extreme and I learned a lot throughout my recovery. Every 20 year-old should go through a similar rite of passage, eh? 1998 summer-a growth was compressing my brainstem (I think it had been there for awhile b/c I had had constant, severe headaches for a long time and other symptoms we were keeping tabs on.) This surgery went even better than expected (thanks to support of Crew too this time around?!) I was conscious a bit while I was on the ventilator, but I knew to expect that going in because of the position of the tumor, so I didn't panic. It was freaky when they removed it and it took a little while for my lungs to fully take over again! I recovered very well, though, and my debilitating headaches were gone after surgery (yeah!!!!). > in simple lay mans terms what does prednisone do-did you hav ANs in your > other ear when you started to take it-and what was the down side. The tumor/s on the other side were actually larger, but my hearing was very good at first. So we decided to operate on the right, so we wouldn't risk the great hearing on the left... and it was not too long before I experienced a sudden loss of hearing (overnight) in my left ear. We used prednisone, and it quickly restored my hearing (like magic).... but soon the losses were getting to be more frequent and I found myself on prednisone continuously. I don't think any of us expected me to retain some hearing (even with prednisone) for as long as I did. It is a blessing and a curse, since it did allow me to participate in school bands for longer than I would have been able to without it. What I remember is that the prednisone, as a corticosteroid, decreases the swelling caused by the tumor on the nerve. It allows blood to flow again where it's supposed to go so everything works like it should even though there's a tumor there. The down-sides of prednisone: I retained a lot of water (ended up putting 50 pounds extra on my 5'5 " frame over 5 years)... face and neck were very puffy, abdomen especially (when they put the shunt in, it was just a gelatinous mess in there... my organs were unidentifiable). The weight gain should not be underestimated because it put a lot of additional stress on me physically. (I had always been athletic up to then, yet I found myself out of breath just walking across campus.) My appetite was higher, too.... but shortly after eating, I'd have diarrhea. It took 6 months to fully wean off it. During that time, nausea and digestive problems were huge. Other things: steroid myopathy, severe muscle pains, pancreatitis, some other disorders I can't remember the name of... a lot of nasty stuff. Prednisone is now toxic to my body, so after my last surgery, dexamethasone was the steriod used for post-op swelling. It is great for me, but others have bad reactions to it.... so I guess that's just how the steriods are, but any steroid long-term wreaks havoc on our bodies. Temporary control of swelling is one thing, but I would discourage anyone from using steroid therapy as a hearing preservation method. > thanks for the hugs > many returned > julie wow... they're flying around the world and back many times! pretty cool..... Healing thoughts to you, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2003 Report Share Posted January 3, 2003 true jamie, i developed a few menigiomas after my AN's surgeries, but who know if i wudda anyway. i like the growth factor flooding the surgery site theory .... " L. Przybysz " wrote: > Hi , > > julie broome wrote: > > > wow jamie > > i do find it fascinating this pattern of tumor growth. my surgery to remove > > my first AN (late 20s) seemed to stimulate 2 new menningiomas a year later. > > these now need removing i wondered if the surgery may promote more?? > > I really don't know. Like Carol mentioned, with individual tumor trajectories > varying so much, it's hard to tell whether it's surgery or just how NF2 is for > an individual. There seem to be experiences going both ways.... more tumors > with surgery and more tumors without surgery. > > > how many bouts of surgery have you had? > > 1991 winter-easiest one.... right-side AN removed (had already lost hearing) > 1995 summer-large tumor behind right knee removed (was threatening blood supply > to leg, very very painful too); surgery went well > 1995 winter-quite a bit harder surgery to remove regrowth on right side and > implant an ABI; lost smile with this one and returned to school before I was > ready... (hearing on left side was poor by now and I knew it was close to being > gone) > 1996 summer-left AN had to come out.... developed rare blood infection post-op, > very high fever for a long time and almost died, needed exploratory surgery, > another surgery to place a shunt in my head to drain fluid to my stomach, had > digestive problems and many more complications from prednisone too; I now > consider this experience as my second infancy in life. It was pretty extreme > and I learned a lot throughout my recovery. Every 20 year-old should go > through a similar rite of passage, eh? > 1998 summer-a growth was compressing my brainstem (I think it had been there > for awhile b/c I had had constant, severe headaches for a long time and other > symptoms we were keeping tabs on.) This surgery went even better than expected > (thanks to support of Crew too this time around?!) I was conscious a bit while > I was on the ventilator, but I knew to expect that going in because of the > position of the tumor, so I didn't panic. It was freaky when they removed it > and it took a little while for my lungs to fully take over again! I recovered > very well, though, and my debilitating headaches were gone after surgery > (yeah!!!!). > > > in simple lay mans terms what does prednisone do-did you hav ANs in your > > other ear when you started to take it-and what was the down side. > > The tumor/s on the other side were actually larger, but my hearing was very > good at first. So we decided to operate on the right, so we wouldn't risk the > great hearing on the left... and it was not too long before I experienced a > sudden loss of hearing (overnight) in my left ear. We used prednisone, and it > quickly restored my hearing (like magic).... but soon the losses were getting > to be more frequent and I found myself on prednisone continuously. I don't > think any of us expected me to retain some hearing (even with prednisone) for > as long as I did. It is a blessing and a curse, since it did allow me to > participate in school bands for longer than I would have been able to without > it. What I remember is that the prednisone, as a corticosteroid, decreases the > swelling caused by the tumor on the nerve. It allows blood to flow again where > it's supposed to go so everything works like it should even though there's a > tumor there. The down-sides of prednisone: I retained a lot of water (ended > up putting 50 pounds extra on my 5'5 " frame over 5 years)... face and neck were > very puffy, abdomen especially (when they put the shunt in, it was just a > gelatinous mess in there... my organs were unidentifiable). The weight gain > should not be underestimated because it put a lot of additional stress on me > physically. (I had always been athletic up to then, yet I found myself out of > breath just walking across campus.) My appetite was higher, too.... but > shortly after eating, I'd have diarrhea. It took 6 months to fully wean off > it. During that time, nausea and digestive problems were huge. Other things: > steroid myopathy, severe muscle pains, pancreatitis, some other disorders I > can't remember the name of... a lot of nasty stuff. Prednisone is now toxic to > my body, so after my last surgery, dexamethasone was the steriod used for > post-op swelling. It is great for me, but others have bad reactions to it.... > so I guess that's just how the steriods are, but any steroid long-term wreaks > havoc on our bodies. Temporary control of swelling is one thing, but I would > discourage anyone from using steroid therapy as a hearing preservation method. > > > thanks for the hugs > > many returned > > julie > > wow... they're flying around the world and back many times! > pretty cool..... > Healing thoughts to you, > > Quote Link to comment Share on other sites More sharing options...
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