Re: FSR feedback from docs ABC Nightly World News tonight

[Guest guest]

I think with FRS, sure, the probability of swelling is rare. The dosage of radiation is less so, perhaps the possibility of swelling is less. Six months after my sterotactic radio surgery there was swelling, but there was no way to predict that until it happened. In my case, a large dose was delivered all at once, and I was perfectly fine until 6 months after the surgery was performed. Perhaps in this situation, steroids would have been a good preventative measure, but it was unknown that swelling would occur and at what point would it have been productive to start steroid treatment?? Once the swelling started, I was given a heavy dose of steroids at first, then later I tapered, but the side effects were terrible. I missed a term of school bc of steroids. My radio surgery was three years ago. Recently, I was with Jennette and her doctor is a advocate of radio surgery. He told her that now, compare to two years ago, radio surgery (I think he refers to FRS) is much, much safer. Perhaps that means that swelling is rare.

Greg

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

I think with FRS, sure, the probability of swelling is rare. The dosage of radiation is less so, perhaps the possibility of swelling is less. Six months after my sterotactic radio surgery there was swelling, but there was no way to predict that until it happened. In my case, a large dose was delivered all at once, and I was perfectly fine until 6 months after the surgery was performed. Perhaps in this situation, steroids would have been a good preventative measure, but it was unknown that swelling would occur and at what point would it have been productive to start steroid treatment?? Once the swelling started, I was given a heavy dose of steroids at first, then later I tapered, but the side effects were terrible. I missed a term of school bc of steroids. My radio surgery was three years ago. Recently, I was with Jennette and her doctor is a advocate of radio surgery. He told her that now, compare to two years ago, radio surgery (I think he refers to FRS) is much, much safer. Perhaps that means that swelling is rare.

Greg

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

I think with FRS, sure, the probability of swelling is rare. The dosage of radiation is less so, perhaps the possibility of swelling is less. Six months after my sterotactic radio surgery there was swelling, but there was no way to predict that until it happened. In my case, a large dose was delivered all at once, and I was perfectly fine until 6 months after the surgery was performed. Perhaps in this situation, steroids would have been a good preventative measure, but it was unknown that swelling would occur and at what point would it have been productive to start steroid treatment?? Once the swelling started, I was given a heavy dose of steroids at first, then later I tapered, but the side effects were terrible. I missed a term of school bc of steroids. My radio surgery was three years ago. Recently, I was with Jennette and her doctor is a advocate of radio surgery. He told her that now, compare to two years ago, radio surgery (I think he refers to FRS) is much, much safer. Perhaps that means that swelling is rare.

Greg

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

Greg,

What were your symptoms when your tumor began to swell?

Sally

<< I think with FRS, sure, the probability of swelling is rare. The dosage

of radiation is less so, perhaps the possibility of swelling is less. Six

months after my sterotactic radio surgery there was swelling, but there was

no way to predict that until it happened. In my case, a large dose was

delivered all at once, and I was perfectly fine until 6 months after the

surgery was performed. Perhaps in this situation, steroids would have been a

good preventative measure, but it was unknown that swelling would occur and

at what point would it have been productive to start steroid treatment??

Once the swelling started, I was given a heavy dose of steroids at first,

then later I tapered, but the side effects were terrible. I missed a term of

school bc of steroids. My radio surgery was three years ago. Recently, I was

with Jennette and her doctor is a advocate of radio surgery. He told her

that now, compare to two years ago, radio surgery (I think he refers to FRS)

is much, much safer. Perhaps that means that swelling is rare.

Greg >>

[Guest guest]

If you read closely it says, " minimal swelling " of course there are always

risk to both procedues, (FSR or Microsurgery). It depends on your decision.

Mark

----Original Message Follows----

Reply-To: NF2_Crewegroups

To: <NF2_Crewegroups>

Subject: Re: FSR feedback from docs ABC Nightly World News

tonight

Date: Mon, 28 Aug 2000 20:45:34 -0400

Well when he said there is " no swelling or minimal swelling after FRS " -

that is not what I was told by a neurologist and neurosurgeon in Pgh. They

indicated that was an unknown; if there is no swelling, why do they give

patients steroids after FRS?? Marie

Re: FSR feedback from docs ABC Nightly World News

tonight

>Marnie,

>

><< This was quite interesting, and I wish you good luck; however I would

take

> issue with a few statements by Dr. Chang. marie >>

>

>What do you mean by taking a few issues by Dr. Chang?

>

>Sally

>

>

>

>

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[Guest guest]

If you read closely it says, " minimal swelling " of course there are always

risk to both procedues, (FSR or Microsurgery). It depends on your decision.

Mark

----Original Message Follows----

Reply-To: NF2_Crewegroups

To: <NF2_Crewegroups>

Subject: Re: FSR feedback from docs ABC Nightly World News

tonight

Date: Mon, 28 Aug 2000 20:45:34 -0400

Well when he said there is " no swelling or minimal swelling after FRS " -

that is not what I was told by a neurologist and neurosurgeon in Pgh. They

indicated that was an unknown; if there is no swelling, why do they give

patients steroids after FRS?? Marie

Re: FSR feedback from docs ABC Nightly World News

tonight

>Marnie,

>

><< This was quite interesting, and I wish you good luck; however I would

take

> issue with a few statements by Dr. Chang. marie >>

>

>What do you mean by taking a few issues by Dr. Chang?

>

>Sally

>

>

>

>

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Nice to hear from you Greg.

In Gamma Knife - IF you ARE going to have swelling then it usually starts at around 6 months. Not all patients have swelling, even after a one shot big dose. I had a 20mm VS done with FSR, 28 shots at 180 rads per treatment - total 5040 rads - and there has been no swelling - no side effects what so ever. That was two years ago - my last MRI two weeks ago shows tumour death. As I said before every NF2er is different, so outcomes will vary.

,

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

Nice to hear from you Greg.

In Gamma Knife - IF you ARE going to have swelling then it usually starts at around 6 months. Not all patients have swelling, even after a one shot big dose. I had a 20mm VS done with FSR, 28 shots at 180 rads per treatment - total 5040 rads - and there has been no swelling - no side effects what so ever. That was two years ago - my last MRI two weeks ago shows tumour death. As I said before every NF2er is different, so outcomes will vary.

,

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

Nice to hear from you Greg.

In Gamma Knife - IF you ARE going to have swelling then it usually starts at around 6 months. Not all patients have swelling, even after a one shot big dose. I had a 20mm VS done with FSR, 28 shots at 180 rads per treatment - total 5040 rads - and there has been no swelling - no side effects what so ever. That was two years ago - my last MRI two weeks ago shows tumour death. As I said before every NF2er is different, so outcomes will vary.

,

Re: FSR feedback from docs ABC Nightly World Newstonight>Marnie,>><< This was quite interesting, and I wish you good luck; however I wouldtake> issue with a few statements by Dr. Chang. marie >>>>What do you mean by taking a few issues by Dr. Chang?>>Sally>>>>

[Guest guest]

Sally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school.

Greg

Greg,What were your symptoms when your tumor began to swell?Sally<< I think with FRS, sure, the probability of swelling is rare. The dosage of radiation is less so, perhaps the possibility of swelling is less. Six months after my sterotactic radio surgery there was swelling, but there was no way to predict that until it happened. In my case, a large dose was delivered all at once, and I was perfectly fine until 6 months after the surgery was performed. Perhaps in this situation, steroids would have been a good preventative measure, but it was unknown that swelling would occur and at what point would it have been productive to start steroid treatment?? Once the swelling started, I was given a heavy dose of steroids at first, then later I tapered, but the side effects were terrible. I missed a term of school bc of steroids. My radio surgery was three years ago. Recently, I was with Jennette and her doctor is a advocate of radio surgery. He told her that now, compare to two years ago, radio surgery (I think he refers to FRS) is much, much safer. Perhaps that means that swelling is rare. Greg >>

[Guest guest]

Sally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school.

Greg

Greg,What were your symptoms when your tumor began to swell?Sally<< I think with FRS, sure, the probability of swelling is rare. The dosage of radiation is less so, perhaps the possibility of swelling is less. Six months after my sterotactic radio surgery there was swelling, but there was no way to predict that until it happened. In my case, a large dose was delivered all at once, and I was perfectly fine until 6 months after the surgery was performed. Perhaps in this situation, steroids would have been a good preventative measure, but it was unknown that swelling would occur and at what point would it have been productive to start steroid treatment?? Once the swelling started, I was given a heavy dose of steroids at first, then later I tapered, but the side effects were terrible. I missed a term of school bc of steroids. My radio surgery was three years ago. Recently, I was with Jennette and her doctor is a advocate of radio surgery. He told her that now, compare to two years ago, radio surgery (I think he refers to FRS) is much, much safer. Perhaps that means that swelling is rare. Greg >>

[Guest guest]

Thanks Greg,

I talked with Dr. about the possibility of swelling. I am

heading into my Senior year for Magazine Journalism. It will be fast paced

because I will have five classes, taking care of my son (who does well in

school himself along with other extra curricular activities), a 27 week Bible

class on Sundays, so as you can see it would halt the assembly line hahhaha

(nice analogy huh?)

Thanks for your feedback.

Love, Sally

Sally, as I understand it, the healthy brain tissue that was damaged released

fluid and this caused the edema. The analogy my neuro used, is the cells are

like water balloons and they broke, thus the fluid. The symptoms started

when I'd wake in the morning when my body shifted from a reclining position

to standing. As time went on, the headaches increased and for a couples

hours each morning, I'd spend nursing a headache, drinking my coffee, and

trying to get my act together for school.

Greg

[Guest guest]

Greg,

<< " electron accelerator. " >>

That sounds kinda futurisitic !! You know I told my son these would be the

kind of names right up his alley. Like the Gamma Knife, the CyberKnife,

remember he's 9-years-old and likes all those fight 'em names :-)

What are you majoring in school ??? Yea, you're gonna graduate !!! That's

great. You've had your awesome challenges as well. That harder the adversity

the great the shine !!! Wow baby look at you shine :-)))

I can't cross my fingers for you, I'm too busy clapping !!!

Love, Sally

[Guest guest]

Ouch! It would certainly, "halt the assemble line." or better yet, "stop the presses!!" The edema took me out of action for quite a while. I didn't have FRS. I got the dose in one procedure. The number of RADS they used, was thought too high, by my doctors here. However, who's to say the swelling would never occurred at either a higher or lower dose. With FRS, sure, the dose would have been much much less, and over a period of time, the body could have handled those and I probably never would have had the swelling at all. What I had done was three years ago, and from what I've been hearing here on the Crew and from a doctor I met with recently, the risks are much less now. Perhaps the machines now that deliver the does are more accurate and can hit their target with less overlap onto healthy tissue. I think the machine I used was call a an "electron accelerator." Sounds kinda neat, huh? (smile)

Good luck on your senior year. I too, am in my final semester this year and will graduate in December (cross your fingers).

Greg

Re: FSR feedback from docs ABC Nightly World News tonight

Thanks Greg,I talked with Dr. about the possibility of swelling. I am heading into my Senior year for Magazine Journalism. It will be fast paced because I will have five classes, taking care of my son (who does well in school himself along with other extra curricular activities), a 27 week Bible class on Sundays, so as you can see it would halt the assembly line hahhaha (nice analogy huh?)Thanks for your feedback.Love, SallySally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school. Greg

[Guest guest]

Ouch! It would certainly, "halt the assemble line." or better yet, "stop the presses!!" The edema took me out of action for quite a while. I didn't have FRS. I got the dose in one procedure. The number of RADS they used, was thought too high, by my doctors here. However, who's to say the swelling would never occurred at either a higher or lower dose. With FRS, sure, the dose would have been much much less, and over a period of time, the body could have handled those and I probably never would have had the swelling at all. What I had done was three years ago, and from what I've been hearing here on the Crew and from a doctor I met with recently, the risks are much less now. Perhaps the machines now that deliver the does are more accurate and can hit their target with less overlap onto healthy tissue. I think the machine I used was call a an "electron accelerator." Sounds kinda neat, huh? (smile)

Good luck on your senior year. I too, am in my final semester this year and will graduate in December (cross your fingers).

Greg

Re: FSR feedback from docs ABC Nightly World News tonight

Thanks Greg,I talked with Dr. about the possibility of swelling. I am heading into my Senior year for Magazine Journalism. It will be fast paced because I will have five classes, taking care of my son (who does well in school himself along with other extra curricular activities), a 27 week Bible class on Sundays, so as you can see it would halt the assembly line hahhaha (nice analogy huh?)Thanks for your feedback.Love, SallySally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school. Greg

[Guest guest]

Re: FSR feedback from docs ABC Nightly World News tonight

Greg,<< "electron accelerator." >>That sounds kinda futurisitic !! You know I told my son these would be the kind of names right up his alley. Like the Gamma Knife, the CyberKnife, remember he's 9-years-old and likes all those fight 'em names :-)

Yep. electron accelerator's got that kind of ring to it. Something like that little space guy in the old Bugs Bunny, who wore a spartan helmet down to he's knees, would us, to blow up the earth bc it obstructs his view. (lol)What are you majoring in school ??? Yea, you're gonna graduate !!! That's great. You've had your awesome challenges as well. That harder the adversity the great the shine !!! Wow baby look at you shine :-)))

You're right! I'm majoring in Computer Information Systems. When I bc deaf, I did a complete 180 in life and headed in a new direction. I made huge change and went into computers. IT's been a long haul, but you know, I think everyone in the Crew shines as bright if not brighter in life, in the face of adversity. I can't cross my fingers for you, I'm too busy clapping !!!

Why thankyou! ))

Greg

Love, Sally

[Guest guest]

I think it is true the dose is less now/safer, however I think it is going to take some long term studies before they know for sure if those lower doses are effective. Marie

Re: FSR feedback from docs ABC Nightly World News tonight

Ouch! It would certainly, " halt the assemble line. " or better yet, " stop the presses!! " The edema took me out of action for quite a while. I didn't have FRS. I got the dose in one procedure. The number of RADS they used, was thought too high, by my doctors here. However, who's to say the swelling would never occurred at either a higher or lower dose. With FRS, sure, the dose would have been much much less, and over a period of time, the body could have handled those and I probably never would have had the swelling at all. What I had done was three years ago, and from what I've been hearing here on the Crew and from a doctor I met with recently, the risks are much less now. Perhaps the machines now that deliver the does are more accurate and can hit their target with less overlap onto healthy tissue. I think the machine I used was call a an " electron accelerator. " Sounds kinda neat, huh? (smile)

Good luck on your senior year. I too, am in my final semester this year and will graduate in December (cross your fingers).

Greg

Re: FSR feedback from docs ABC Nightly World News tonight

Thanks Greg,I talked with Dr. about the possibility of swelling. I am heading into my Senior year for Magazine Journalism. It will be fast paced because I will have five classes, taking care of my son (who does well in school himself along with other extra curricular activities), a 27 week Bible class on Sundays, so as you can see it would halt the assembly line hahhaha (nice analogy huh?)Thanks for your feedback.Love, SallySally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school. Greg

[Guest guest]

True, but what's the benefit of FRS over stereo tactic radio surgery. (SRS?) Is it just that they are able to gauge the amount of radiation needed and then halt the process once the tumor begins to die? Or, that it's also safer, in that less radiation is used each time, thereby reducing the chances of swelling. I think the reason I went with Stereo tactic, was that the hosp. I used was out of town and that the hosp. I use at home, at the time, didn't have the means to do FRS. We took our time trying to figure out the best way to go, with this. Finally, we opted for SRS, due in part, bc of the accuracy of the machine to be used.

Greg

I think it is true the dose is less now/safer, however I think it is going to take some long term studies before they know for sure if those lower doses are effective. Marie

Re: FSR feedback from docs ABC Nightly World News tonight

Ouch! It would certainly, "halt the assemble line." or better yet, "stop the presses!!" The edema took me out of action for quite a while. I didn't have FRS. I got the dose in one procedure. The number of RADS they used, was thought too high, by my doctors here. However, who's to say the swelling would never occurred at either a higher or lower dose. With FRS, sure, the dose would have been much much less, and over a period of time, the body could have handled those and I probably never would have had the swelling at all. What I had done was three years ago, and from what I've been hearing here on the Crew and from a doctor I met with recently, the risks are much less now. Perhaps the machines now that deliver the does are more accurate and can hit their target with less overlap onto healthy tissue. I think the machine I used was call a an "electron accelerator." Sounds kinda neat, huh? (smile)

Good luck on your senior year. I too, am in my final semester this year and will graduate in December (cross your fingers).

Greg

Re: FSR feedback from docs ABC Nightly World News tonight

Thanks Greg,I talked with Dr. about the possibility of swelling. I am heading into my Senior year for Magazine Journalism. It will be fast paced because I will have five classes, taking care of my son (who does well in school himself along with other extra curricular activities), a 27 week Bible class on Sundays, so as you can see it would halt the assembly line hahhaha (nice analogy huh?)Thanks for your feedback.Love, SallySally, as I understand it, the healthy brain tissue that was damaged released fluid and this caused the edema. The analogy my neuro used, is the cells are like water balloons and they broke, thus the fluid. The symptoms started when I'd wake in the morning when my body shifted from a reclining position to standing. As time went on, the headaches increased and for a couples hours each morning, I'd spend nursing a headache, drinking my coffee, and trying to get my act together for school. Greg