Re: Gamma Knife

[Guest guest]

Marie

I've been searching my area for a neuro.It's hard to get a second opinion,I've

seen them all 50 times.I'm going to consider this Dr.

I don't mind a 2 hr wait,I;m use to that.I tell who ever will listen " this is

b.s.,his Bill will get home before I do " .

Jimmy

Gamma Knife

Today I visited Dr. Kondziolka in Pgh. He is a gamma knife guy; Pgh. was the

first place in North America to have gamma knife and their experience/stats go

back a long way. If you remember, Adam had gamma knife here. Anyhow, I

am not thinking gamma knife, was thinking fractionated RS, but went to see him

about what he thought of swelling in my size tumor (I have a 3 cm tumor). --and

in talking about hearing preservation, radiosurgery, etc. I FORGOT to find out

about the swelling--but I will. Of course the fact that I had to wait 2 hours

past my appointment contributed to my aggravation. Anyhow Dr. K. is like most

other good doctors--they firmly believe in what they do. Kind of like a good

sales man has to believe in their product. He said the only reason people do

fractionated RS is because they don't have a gamma knife; he likened it to

people who drive a Ford because they can't have a Rolls Royce. He expounded on

the accuracy of the gamma knife; and I tend to believe him, ebecause the other

drs. I have talked with have admitted gamma knife is the most accurate. And of

course he said FRS does not have anything to back it up, meaning stats of

longevity. And I said I agree, but unfortunately I don't have the time to wait

for stats to accumulate! His complaint was that FRS " draw circles " and hit the

good stuff with the bad stuff; that's why they have to use a lower dosage; we

are PRECISE. " He said when the FRS guys possibly make changes to include

precise measurements, which would take time and money, THEN maybe FRS would have

something to offer! Of course when I asked him why Georg Noren at Rhode Island

who HAS a gamma knife is now doing fractionated gamma knife, he said he didn't

know why. If I can find Noren's address, I intend to ask! FYI, Dr. K said they

would give about 2200rads at the center of the tumor, and edge would get less,

1100 rads; I don't understand this, but he said the 2200 rads would be equal

to about 6000 in 10 fractionations; Dr. had said my treatment would be

3000 rads; so obviously GK gives more? Am I correct that FRS does not " slope

off " like GK? I got the impression, and he did not say this, but that with my

" unique case " as he put it (which translates to I'm a lousy candidate), they

would not be real hopeful of saving my hearing. He offered the suggestion that

I might wait (my tumor is growing) and when necessary have Brackman do another

decompression. I am just evil enough to think

" and then the negative stat would be on Brackman, not on RS! " )

Anyhow, I just saved you guys a $200 visit! Marie

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

Hi, thank you for your reply; I have no intention of doing gamma knife; I

have never had a doctor tell me that any form of radiosurgery will definitely

make you deaf in time; only that you COULD go deaf. I would be most interested

in the journal articles by Dr. Vermeulen. Mr address is Marie Drew, 223

Meadowview Drive, Canonsburg, PA 15317. My e mail is mcdrew@... I hear a

lot about this conference in Florida recently, but no one seems to have any

documentation of the outcomes?? Let's stay in touch. Marie

I

I will write you more about what I know tomorrow or Sunday. What is your

personal email address? Mine is bluediver@....

I can send you the contact info for Dr. Vermeulen.

Thanks for the " fill in " on what you learned about Gamma Knife. You have

been a great source of information to everyone here and your hard work is

appreciated!

Let's talk soon!

- Beck )

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

Peacock actually originated in Pittsburgh; I have been to West Penn Hospital and

talked to them; I agree I would favor Peacock over FRS, but the doctor I talked

to in Pgh. was not very convincing. By the way, Peacock now uses a facial mask,

no screws. How big was your tumor that you received linac on? By linac, does

that mean you had fractionated radiotherapy?? Marie

Re: Gamma Knife

Marie,

Gamma Knife can only do approximately three fractions in twenty-four hours

and if I understand it correctly it is not pleasant as you have the head frame

screwed to your scull all that time. You are also fed pain-killing drugs.

It is also true that Gamma Knife is very accurate and the whole process is

over in one day.

There is another treatment called Peacock which is just a accurate as G/K.

They place two studs into the top of your head which stay there till the

treatment is finished. When you are placed on the treatment table small threaded

bolts go through the fixing struts and screwed to the threaded studs to hold you

in the exact position every time you have a treatment. The Peacock system has a

multi-leaf aperture, this means that they can replicate the exact shape of the

tumour and through a computer program, as the machine revolves around your head

it can change the aperture shape to that of the tumour. They can make it a one

shot treatment or they can make it a fractionated treatment. So there is more

than one that can be very accurate in it's delivery. The advantage that Peacock

has over G/K is it can have any number of fractions. Go to www.nomos.com to see

if there is a site near you and to read about the system yourself. It's only my

opinion but I think I would prefer Peacock over G/K if I was trying to save

hearing.

The good old fashioned L/Accelerator is what I had and I have no complaints.

The Hospital I went to had just received a square aperture where one side could

move in and out, and the top could move up and down making it possible to get

closer to the tumour shape. To hold my head still they used a radionics ring

held in place by having a moulded mouthpiece and another for the back of the

head then held in place by clamping it with valcrose straps pulled very tight,

once on the table you are then screwed to the holding struts. Not as accurate as

G/K or Peacock but I never lost hearing, it has stayed about the same and I

don't need a hearing aid to converse with a group of people. So I think that it

is the fractionating that is the main benefit for those of us who are trying to

save hearing.

Hope I have confused you more |), best of luck as it is only you who makes

the final decision.

.

Gamma Knife

Today I visited Dr. Kondziolka in Pgh. He is a gamma knife guy; Pgh.

was the first place in North America to have gamma knife and their

experience/stats go back a long way. If you remember, Adam had gamma

knife here. Anyhow, I am not thinking gamma knife, was thinking fractionated

RS, but went to see him about what he thought of swelling in my size tumor (I

have a 3 cm tumor). --and in talking about hearing preservation, radiosurgery,

etc. I FORGOT to find out about the swelling--but I will

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

Wait, are you talking about going to see Lunsford and Kondziolka? Actually, if

I was not out to preserve my hearing, I would very strongly consider them; I

think they are a class act, very strong in their opinions and out to improve

their stats. They are the most experienced around.

Marie (and besides Dr. Kondziolka is cute, but I somehow doubt that matters to

you!)

Re: Gamma Knife

Marie

I've been searching my area for a neuro.It's hard to get a second

opinion,I've seen them all 50 times.I'm going to consider this Dr.

I don't mind a 2 hr wait,I;m use to that.I tell who ever will listen " this

is b.s.,his Bill will get home before I do " .

Jimmy

Gamma Knife

Today I visited Dr. Kondziolka in Pgh. He is a gamma knife guy; Pgh.

was the first place in North America to have gamma knife and their

experience/stats go back a long way. If you remember, Adam had gamma

knife here. Anyhow, I am not thinking gamma knife, was thinking fractionated

RS, but went to see him about what he thought of swelling in my size tumor (I

have a 3 cm tumor). --and in talking about hearing preservation, radiosurgery,

etc. I FORGOT to find out about the swelling--but I will. Of course the fact

that I had to wait 2 hours past my appointment contributed to my aggravation.

Anyhow Dr. K. is like most other good doctors--they firmly believe in what they

do. Kind of like a good sales man has to believe in their product. He said the

only reason people do fractionated RS is because they don't have a gamma knife;

he likened it to people who drive a Ford because they can't have a Rolls Royce.

He expounded on the accuracy of the gamma knife; and I tend to believe him,

ebecause the other drs. I have talked with have admitted gamma knife is the most

accurate. And of course he said FRS does not have anything to back it up,

meaning stats of longevity. And I said I agree, but unfortunately I don't have

the time to wait for stats to accumulate! His complaint was that FRS " draw

circles " and hit the good stuff with the bad stuff; that's why they have to use

a lower dosage; we are PRECISE. " He said when the FRS guys possibly make

changes to include precise measurements, which would take time and money, THEN

maybe FRS would have something to offer! Of course when I asked him why Georg

Noren at Rhode Island who HAS a gamma knife is now doing fractionated gamma

knife, he said he didn't know why. If I can find Noren's address, I intend to

ask! FYI, Dr. K said they would give about 2200rads at the center of the

tumor, and edge would get less, 1100 rads; I don't understand this, but he

said the 2200 rads would be equal to about 6000 in 10 fractionations; Dr.

had said my treatment would be 3000 rads; so obviously GK gives more?

Am I correct that FRS does not " slope off " like GK? I got the impression, and

he did not say this, but that with my " unique case " as he put it (which

translates to I'm a lousy candidate), they would not be real hopeful of saving

my hearing. He offered the suggestion that I might wait (my tumor is growing)

and when necessary have Brackman do another decompression. I am just evil

enough to think

" and then the negative stat would be on Brackman, not on RS! " )

Anyhow, I just saved you guys a $200 visit! Marie

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

Marie,

I had Radio-therapy by LinacAccelerator a total of 5040 Rads. This was

fractionated down to 180 rads per day x 28 treatments = 5040 rads. The Hospital

had just received a square aperture where one side could move in and out, and

the top could move up and down making it possible to get closer to the tumour

shape. My tumour was about 20mm and was only just touching the Brainstem.

The oncologist has stated that whatever hearing is left after 2 years will be

the hearing that I am left with, then he qualified that by saying, as I get

older, normal hearing degeneration

may still occur. The effects of the treatment will finish after 3 years, in

other words; if it hasn't grown it won't, in my case the tumour is imploding

(shrinking) in on its self, and after 3 years what ever stage it is at, at that

time, that will be as far as it will go. By the way Peacock is a fractionated

treatment and that is the type of treatment I would have now, or it can do the

one shot. I think the trick is to have treatment before your hearing declines

lower than 50%. It would be better if it where higher.

An article from the HEI is saying that Radiotherapy maybe the best option to

preserve hearing. Check the last issue of the NF2 Review. If you don't receive

it let me know and I will post you the article.

.

Re: Gamma Knife

Peacock actually originated in Pittsburgh; I have been to West Penn Hospital

and talked to them; I agree I would favor Peacock over FRS, but the doctor I

talked to in Pgh. was not very convincing. By the way, Peacock now uses a

facial mask, no screws. How big was your tumor that you received linac on? By

linac, does that mean you had fractionated radiotherapy?? Marie

[Guest guest]

Hi all,

Well, as most of you know I had GK a few months ago. Hearing

preservation was not a concern for me, I am totally deaf now. As my doc

said this was BEST for ME. It was a one time thingy. No surgery and

months of recovery needed. He was using a lower dose, I am not sure the

dosage, because he has paid attention to recent concerns about the lower

dosage. I will know more, about this tumor which is a regrowth of a

right AN, which was surgerically removed in 1985, next year when I gat a

MRI. Why so long> Because these are slow growing tumors and we need

time to see IF it is growing or not.

Joanie and Marie I used to wait 3 hours for my neuro appotment then I

wised up and fired the doc.

[Guest guest]

I send my profound apologies to the crew and HEI.... I will have to learn to

recheck my facts before I send them off. House-Brackmann is mentioned near the

end in regard to facial nerve.

Again my apologies.

.

The article is as follows;

J Neurosurg 1999 May;90(5):8 15-22

Stereotactic radiosurgery in the management of acoustic neuromas associated with

neurofibromatosis Type 2.

Author: Subach BR, Kondziolka D, Lunsford LD, Bissonette DJ, Flkkinger JC, Maitz

AH

Department of Neurological Surgery; Center for Image-Guided Neurosurgery,

University of Pittsburgh Medical Center,Pennsylvania, USA.

OBJECT: Stereotactically guided radiosurgery is one of the primary treatment

modalities for patients with acoustic neurornas (vestibular schwannomas). The

goal of radiosurgery is to arrest tumor growth while preserving neurological

function. Patients with acoustic neuromas associated with neurofibromatosis Type

2 (NF2) represent a special challenge because of the risk of complete deafness.

To define better the tumor control rate and long-term functional out-come, the

authors reviewed their 10-year experience in treating these lesions.

METHODS: Forty patients underwent stereotactic radiosurgery at the University of

Pittsburgh, 35 of them for solitary tumors. The other five underwent staged

procedures for bilateral lesions (10 tumors, 45 total). Thirteen patients (with

29% of tumors) had undergone a median of two prior resections. The mean tumor

volume at radiosurgery was 4.8 ml, and the mean tumor margin dose was 15 Gy

(range 12-20 Gy). The overall tumor control rate was 98%. During the median

follow-up period of 36 months, 16 tumors (36%) regressed, 28 (62%) remained

unchanged, and one (2%) grew. In the 10 patients for whom more than 5 years of

clinical and neuroimaging follow-up results were available (median 92 months),

five tumors were smaller and five remained unchanged. Surgical resection was

performed in three patients (7%) after radiosurgery; only one showed

radio-graphic evidence of progression. Useful hearing (Gardner-on Class I

or II) was preserved in six (43%) of 14 patients, and this rate improved to 67%

after modifications made in 1992. Normal facial nerve function (House-Brackmann

Grade I) was preserved in 25(81 %) of 31 patients. Normal trigeminal nerve

function was preserved in 34(94%) of 36 patients.

CONCLUSIONS: Stereotactically guided radio-surgery is a safe and effective

treatment for patients with acoustic tumors in the setting of NF2. The rate of

hearing preservation may be better with radiosurgery than with other available

techniques.

Re: Gamma Knife

Wow, I can't believe HEI is saying that about radiotherapy! I have not

received a copy of the NF2 Review lately, and I sure would like to read that.

It is my understanding thre was a big meeting in Fla. a few months ago and that

everyone is waiting for a lot of information that was supposed to surface there.

So far I have seen nothing. I wonder what does more damage to nerve/tumor; the

# of rads in each individual treatment, or the total # of rads received? I

think their is quite a difference; talked about 300 rads each

day for 10 days for a total of 3000. I am getting an audiogram Tuesday, and

really am not sure of my hearing level, but you can be sure I will find out.

They did tell me that because I have had 3 surguries, my tumor is so large and

so old, I am not a prime candidate for hearing preservation (putting it mildly).

Thanks again for the info. Marie

-----Original Message-----

To: NF2_Crewonelist <NF2_Crewonelist>

Date: Sunday, February 06, 2000 7:35 PM

[Guest guest]

Is this the article you were talking about where you said HEI recommended FRS?

I thought that awfully funny! These guys, Lunsford & (Kondziolka is the one I

just saw) and Brackman REALLY have different opinions! And Kondziolka is very

down on FRS, as I said. Everyone keeps talking about this meeting in Fla. last

month about radiosurgery, but I can't find anything out about it. marie

Re: Gamma Knife

I send my profound apologies to the crew and HEI.... I will have to learn to

recheck my facts before I send them off. House-Brackmann is mentioned near the

end in regard to facial nerve.

Again my apologies.

.

The article is as follows;

J Neurosurg 1999 May;90(5):8 15-22

Stereotactic radiosurgery in the management of acoustic neuromas associated

with neurofibromatosis Type 2.

Author: Subach BR, Kondziolka D, Lunsford LD, Bissonette DJ, Flkkinger JC,

Maitz AH

Department of Neurological Surgery; Center for Image-Guided Neurosurgery,

University of Pittsburgh Medical Center,Pennsylvania, USA.

OBJECT: Stereotactically guided radiosurgery is one of the primary treatment

modalities for patients with acoustic neurornas (vestibular schwannomas). The

goal of radiosurgery is to arrest tumor growth while preserving neurological

function. Patients with acoustic neuromas associated with neurofibromatosis Type

2 (NF2) represent a special challenge because of the risk of complete deafness.

To define better the tumor control rate and long-term functional out-come, the

authors reviewed their 10-year experience in treating these lesions.

METHODS: Forty patients underwent stereotactic radiosurgery at the

University of Pittsburgh, 35 of them for solitary tumors. The other five

underwent staged procedures for bilateral lesions (10 tumors, 45 total).

Thirteen patients (with 29% of tumors) had undergone a median of two prior

resections. The mean tumor volume at radiosurgery was 4.8 ml, and the mean tumor

margin dose was 15 Gy (range 12-20 Gy). The overall tumor control rate was 98%.

During the median follow-up period of 36 months, 16 tumors (36%) regressed, 28

(62%) remained unchanged, and one (2%) grew. In the 10 patients for whom more

than 5 years of clinical and neuroimaging follow-up results were available

(median 92 months), five tumors were smaller and five remained unchanged.

Surgical resection was performed in three patients (7%) after radiosurgery; only

one showed radio-graphic evidence of progression. Useful hearing

(Gardner-on Class I or II) was preserved in six (43%) of 14 patients, and

this rate improved to 67% after modifications made in 1992. Normal facial nerve

function (House-Brackmann Grade I) was preserved in 25(81 %) of 31 patients.

Normal trigeminal nerve function was preserved in 34(94%) of 36 patients.

CONCLUSIONS: Stereotactically guided radio-surgery is a safe and effective

treatment for patients with acoustic tumors in the setting of NF2. The rate of

hearing preservation may be better with radiosurgery than with other available

techniques.

Re: Gamma Knife

Wow, I can't believe HEI is saying that about radiotherapy! I have not

received a copy of the NF2 Review lately, and I sure would like to read that.

It is my understanding thre was a big meeting in Fla. a few months ago and that

everyone is waiting for a lot of information that was supposed to surface there.

So far I have seen nothing. I wonder what does more damage to nerve/tumor; the

# of rads in each individual treatment, or the total # of rads received? I

think their is quite a difference; talked about 300 rads each

day for 10 days for a total of 3000. I am getting an audiogram Tuesday, and

really am not sure of my hearing level, but you can be sure I will find out.

They did tell me that because I have had 3 surguries, my tumor is so large and

so old, I am not a prime candidate for hearing preservation (putting it mildly).

Thanks again for the info. Marie

-----Original Message-----

To: NF2_Crewonelist <NF2_Crewonelist>

Date: Sunday, February 06, 2000 7:35 PM

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

I like that last sentence " May be better " '; then again, May NOT?? But when it's

your only hearing ear, that's pretty important! \Marie

Re: Gamma Knife

I send my profound apologies to the crew and HEI.... I will have to learn to

recheck my facts before I send them off. House-Brackmann is mentioned near the

end in regard to facial nerve.

Again my apologies.

.

The article is as follows;

J Neurosurg 1999 May;90(5):8 15-22

Stereotactic radiosurgery in the management of acoustic neuromas associated

with neurofibromatosis Type 2.

Author: Subach BR, Kondziolka D, Lunsford LD, Bissonette DJ, Flkkinger JC,

Maitz AH

Department of Neurological Surgery; Center for Image-Guided Neurosurgery,

University of Pittsburgh Medical Center,Pennsylvania, USA.

OBJECT: Stereotactically guided radiosurgery is one of the primary treatment

modalities for patients with acoustic neurornas (vestibular schwannomas). The

goal of radiosurgery is to arrest tumor growth while preserving neurological

function. Patients with acoustic neuromas associated with neurofibromatosis Type

2 (NF2) represent a special challenge because of the risk of complete deafness.

To define better the tumor control rate and long-term functional out-come, the

authors reviewed their 10-year experience in treating these lesions.

METHODS: Forty patients underwent stereotactic radiosurgery at the

University of Pittsburgh, 35 of them for solitary tumors. The other five

underwent staged procedures for bilateral lesions (10 tumors, 45 total).

Thirteen patients (with 29% of tumors) had undergone a median of two prior

resections. The mean tumor volume at radiosurgery was 4.8 ml, and the mean tumor

margin dose was 15 Gy (range 12-20 Gy). The overall tumor control rate was 98%.

During the median follow-up period of 36 months, 16 tumors (36%) regressed, 28

(62%) remained unchanged, and one (2%) grew. In the 10 patients for whom more

than 5 years of clinical and neuroimaging follow-up results were available

(median 92 months), five tumors were smaller and five remained unchanged.

Surgical resection was performed in three patients (7%) after radiosurgery; only

one showed radio-graphic evidence of progression. Useful hearing

(Gardner-on Class I or II) was preserved in six (43%) of 14 patients, and

this rate improved to 67% after modifications made in 1992. Normal facial nerve

function (House-Brackmann Grade I) was preserved in 25(81 %) of 31 patients.

Normal trigeminal nerve function was preserved in 34(94%) of 36 patients.

CONCLUSIONS: Stereotactically guided radio-surgery is a safe and effective

treatment for patients with acoustic tumors in the setting of NF2. The rate of

hearing preservation may be better with radiosurgery than with other available

techniques.

Re: Gamma Knife

Wow, I can't believe HEI is saying that about radiotherapy! I have not

received a copy of the NF2 Review lately, and I sure would like to read that.

It is my understanding thre was a big meeting in Fla. a few months ago and that

everyone is waiting for a lot of information that was supposed to surface there.

So far I have seen nothing. I wonder what does more damage to nerve/tumor; the

# of rads in each individual treatment, or the total # of rads received? I

think their is quite a difference; talked about 300 rads each

day for 10 days for a total of 3000. I am getting an audiogram Tuesday, and

really am not sure of my hearing level, but you can be sure I will find out.

They did tell me that because I have had 3 surguries, my tumor is so large and

so old, I am not a prime candidate for hearing preservation (putting it mildly).

Thanks again for the info. Marie

-----Original Message-----

To: NF2_Crewonelist <NF2_Crewonelist>

Date: Sunday, February 06, 2000 7:35 PM

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

When you do pass it on as I would like to know

.

Re: Gamma Knife

Is this the article you were talking about where you said HEI recommended FRS?

I thought that awfully funny! These guys, Lunsford & (Kondziolka is the one I

just saw) and Brackman REALLY have different opinions! And Kondziolka is very

down on FRS, as I said. Everyone keeps talking about this meeting in Fla. last

month about radiosurgery, but I can't find anything out about it. marie

[Guest guest]

Marie,

Thanks for passing on the Letter from Dr. Noren. He certainly sounds like my

kind of doctor. But even he tends to play on words a bit. When he says:

" However, we also know that theory and practice sometimes are quite

different. This needs to be tried. "

what he really means is that he is not quite sure what he is doing and needs

to play around a bit with some heads (ie, that round thing on top of our

shoulders) to find out. This is the same way me and you learn to use some

computer software - we play with it to get to know the features. I don't

mean to come down hard on Noren because I feel they all do this. In my

feild, we would say we are looking for an empirical relation. An empirical

relation is when something works but you are not quite sure why it works,

only that a series of experiments has shown it to work.

The reason I like GK is the same reason the folks at GM are trying to get

you to buy Chevy trucks - Tried, Tested and True. GK has been tried and

tested the most. It is sorta true too. Even if GK is not true, two out of

three ain't bad. Noren may be doing us all a favour by trying factionated GK

but I think I lost the " daredevil " in me to try something new.

>

>

>You're right, he is cocky; but then what do you expect of a fellow

>Canadian!! Just joking. I get the impression they run a class act, are

>pretty proud of what they do. My neurologist was going to try and talk to

>him today about the swelling issue. The statement " they never lost a

>patient because of swelling " --crap, that doesn't answer whether they had big

>problems. I will send you a copy of latest post I got from Georg Noren at

>New England, think you will find it interesting. Marie

>

>Dear Marie,

>

>Thank you for sending me your message. You touched at many interesting

>issues. " People do fractionation because they can't afford a gamma knife " ...

>(Kondziolka). Probably true to some extent. However, I would rather express

>it " they think they can't afford a gamma knife " . Even at " slow " gamma knife

>centers the case load will generate a profit large enough to pay off the

>investment over a few years even though it is in reality written off over a

>period of 5-6-7 years. I'm convinced there are political issues involved as

>well as for example that the radiation oncologists want to be in control

>which they are with the linac but not with the gamma knife. In conclusion,

>if you real badly want to acquire a gamma knife usually you can with some

>lobbying, persuasion and fund raising.

>

>Why fractionated gamma knife? To find out whether we can improve

>preservation of hearing even further of course. That's the only reason. For

>someone in your situation, because of NF2 or for some other reason, with

>deafness in one ear and an acoustic neuroma on the other only functioning

>ear, a chance of preservation of hearing of 60% or 70% is not good enough.

>The goal is to get as close to 100% as at all possible while still

>controlling the tumor growth as effectively as following single dose

>treatment. I agree that based on theoretical considerations it should not

>improve the results for a tumor as benign and slow growing as an acoustic

>neuroma. However, we also know that theory and practice sometimes are quite

>different. This needs to be tried.

>

>I use five daily fractions with the frame attached throughout these five

>days. The dose is somewhat higher than in single dose treatment. So far,

>five patients have been treated, none of which with NF2. I hope we can

>include NF2 patients soon in the study. The first patient was treated in

>May, 1999. We need at least a one-year follow-up for these patients to get

>an idea of in which direction the results are heading.

>

>The idea is to combine the best of the two concepts, the extreme accuracy of

>the gamma knife with the more lenient impact of the fractionated mode. I

>will not give more details at this time until we know more about the results

>and they can be presented.

>

>The best treatment option for you is the one that gives you the best chance

>of preserving hearing in your left ear, be it single dose gamma knife in

>Pittsburgh, Providence or elsewhere or fractionated treatment with linac

>technique at some place. You have to request the results from the doctors.

>Seemingly, the initially very good results of preservation of hearing

>reported by some linac based centers using fractionated stereotactic

>radiotherapy (such as Dr. Lederman, Staten Island, NYC), have declined

>somewhat over time. As is clear from the information given above, I don't

>yet know enough about the outcome following fractionated gamma knife to

>include that as an option for you at this time.

>

>With kindest regards,

>

>Sincerely yours,

>

>Georg Noren, MD, PhD

>Neurosurgeon, Director

>New England Gamma Knife Center

>

>

> Re: Gamma Knife

>

>

>>From: ffusca@... ( A. Fusca)

>>

>>Marie,

>>

>>I'm coming in a bit late on this but it is great stuff!! Particularly for

>me

>>since I am thinking of going to Pitts for GK (everything has been approved

>>so all I need to do is give the go ahead). I e-mailed a question to Dr. K

>>about the swelling too and he skirted around the issue but did say that a

>>patient never died from that cause there!

>>

>>Dr. K seems a little to cocky for my liking but if you are good, you can

>>afford to be. GK may be like a Rolls Royce but if you ask me, they all have

>>carts and donkeys. Dr. K is just saying his donkey has a slightly higher IQ

>>than the others. I've often wondered how we know if the doctor is a good

>>salesman or a good doctor?? I bet most are not good at both so I'm left

>>wondering if I'm getting a good treatment or a lot of sweet talk.

>>

>>Let me know if you get back to Dr. K on the swelling part. You are saving

>me

>>$200 plus a trip to Pitts.

>>

>>

>>

>>>

>>>

>>>Today I visited Dr. Kondziolka in Pgh. He is a gamma knife guy; Pgh. was

>>the first place in North America to have gamma knife and their

>>experience/stats go back a long way. If you remember, Adam had

>gamma

>>knife here. Anyhow, I am not thinking gamma knife, was thinking

>>fractionated RS, but went to see him about what he thought of swelling in

>my

>>size tumor (I have a 3 cm tumor). --and in talking about hearing

>>preservation, radiosurgery, etc. I FORGOT to find out about the

>>swelling--but I will. Of course the fact that I had to wait 2 hours past

>my

>>appointment contributed to my aggravation. Anyhow Dr. K. is like most

>other

>>good doctors--they firmly believe in what they do. Kind of like a good

>>sales man has to believe in their product. He said the only reason people

>>do fractionated RS is because they don't have a gamma knife; he likened it

>>to people who drive a Ford because they can't have a Rolls Royce. He

>>expounded on the accuracy of the gamma knife; and I tend to believe him,

>>ebecause the other drs. I have talked with have admitted gamma knife is the

>>most accurate. And of course he said FRS does not have anything to back it

>>up, meaning stats of longevity. And I said I agree, but unfortunately I

>>don't have the time to wait for stats to accumulate! His complaint was

>that

>>FRS " draw circles " and hit the good stuff with the bad stuff; that's why

>>they have to use a lower dosage; we are PRECISE. " He said when the FRS

>guys

>>possibly make changes to include precise measurements, which would take

>time

>>and money, THEN maybe FRS would have something to offer! Of course when I

>>asked him why Georg Noren at Rhode Island who HAS a gamma knife is now

>doing

>>fractionated gamma knife, he said he didn't know why. If I can find

>Noren's

>>address, I intend to ask! FYI, Dr. K said they would give about 2200rads

>at

>>the center of the tumor, and edge would get less, 1100 rads; I don't

>>understand this, but he said the 2200 rads would be equal to about 6000 in

>>10 fractionations; Dr. had said my treatment wou " and then the

>>negative stat would be on Brackman, not on RS! " )

>>>Anyhow, I just saved you guys a $200 visit! Marie

>>>

>>>See what's happening for NF2Con 2000!

>>>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>><tt>From:</tt> <tt>

>>> & quot;Marie Drew & quot; & lt;mcdrew@... & gt;</tt>

>>><br><br>

>>><!DOCTYPE HTML PUBLIC " -//W3C//DTD W3 HTML//EN " >

>>><HTML>

>>><HEAD>

>>>

>>><META content=text/html;charset=iso-8859-1 http-equiv=Content-Type>

>>><META content=' " MSHTML 4.72.3110.7 " ' name=GENERATOR>

>>></HEAD>

>>><BODY bgColor=#ffffff>

>>><DIV><FONT color=#000000 size=2>Today I visited Dr. Kondziolka in

>>Pgh. & nbsp; He

>>>is a gamma knife guy; Pgh. was the first place in North America to have

>gamma

>>>knife and their experience/stats go back a long way. & nbsp; If you

>remember,

>>Adam

>>> had gamma knife here. & nbsp; Anyhow, I am not thinking gamma knife,

>was

>>>thinking fractionated RS, but went to see him about what he thought of

>>swelling

>>>in my size tumor (I have a 3 cm tumor). & nbsp; --and in talking about

>hearing

>>>preservation, radiosurgery, etc. I FORGOT to find out about the

>>swelling--but I

>>>will. & nbsp; Of course the fact that I had to wait 2 hours past my

>appointment

>>>contributed to my aggravation. & nbsp; Anyhow Dr. K. is like most other good

>>>doctors--they firmly believe in what they do. & nbsp; Kind of like a good

>sales

>>>man has to believe in their product. & nbsp; He said the only reason people

>do

>>>fractionated RS is because they don't have a gamma knife; he likened it to

>>>people who drive a Ford because they can't have a Rolls Royce. & nbsp; He

>>>expounded on the accuracy of the gamma knife; and I tend to believe him,

>>>ebecause the other drs. I have talked with have admitted gamma knife is

>the

>>most

>>>accurate. & nbsp; And of course he said FRS does not have anything to back

>it

>>up,

>>>meaning stats of longevity. & nbsp; And I said I agree, but unfortunately I

>>don't

>>>have the time to wait for stats to accumulate! & nbsp; His complaint was

>that

>>FRS

>>> & quot;draw circles & quot; and hit the good stuff with the bad stuff; that's

>why

>>>they have to use a lower dosage; we are PRECISE. & quot; & nbsp; He said when

>the

>>>FRS guys possibly make changes to include precise measurements, which

>would

>>take

>>>time and money, THEN maybe FRS would have something to offer! & nbsp; Of

>course

>>>when I asked him why Georg Noren at Rhode Island who HAS a gamma knife is

>now

>>>doing fractionated gamma knife, he said he didn't know why. & nbsp; If I can

>>find

>>>Noren's address, I intend to ask! & nbsp; FYI, Dr. K said they would give

>about

>>>2200rads at & nbsp; & nbsp; the center of the tumor, and edge would get less,

>1100

>>>rads; & nbsp; & nbsp; I don't understand this, but he said the 2200 rads would

>be

>>>equal to about 6000 in 10 fractionations; Dr. had said my

>treatment

>>>would be 3000 rads; so obviously GK gives more? & nbsp; Am I correct that

>FRS

>>does

>>>not & quot;slope off & quot; like GK? & nbsp; I got the impression, and he did

>not

>>>say this, but that with my & quot;unique case & quot; as he put it (which

>>>translates to I'm a lousy candidate), they would not be real hopeful of

>saving

>>>my hearing. & nbsp; He offered the suggestion that I might wait (my tumor is

>

>>>growing) and when necessary have Brackman do another decompression. & nbsp;

>I am

>>>just evil enough to think </FONT></DIV>

>>><DIV><FONT color=#000000 size=2> & quot;and then the negative stat would be

>on

>>>Brackman, not on RS! & quot;)</FONT></DIV>

>>><DIV><FONT color=#000000 size=2>Anyhow, I just saved you guys a $200

>>>visit! & nbsp; Marie</FONT></DIV></BODY></HTML>

>>>

>>><br>

>>><tt>

>>>See what's happening for NF2Con 2000!<BR>

>>><a

>>href= " http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html " >h

>t

>>tp://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html</a></tt>

>>><br>

>>>

>>

>>

>>See what's happening for NF2Con 2000!

>>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>

>>

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

>

[Guest guest]

I am interested to see what turns out with the fractionated GK also;

interesting tho, I was exchanging e mail with Noren and he was very prompt

in replying, etc. You read the exchange where I asked him about swelling,

and he said it was not a problem? Well, I went back to him and said, what

about the lady from Canada who came to you and had big swelling problems and

eventual surgery? Never got a reply!! (Her name was Terri). I give him

credit tho, he said fractionated GK was not proven yet, not a good idea for

me; of course we know what NF2 does to stats! \i overnighted my latest MRI

to Brackman today, waiting to hear from him about whether to do another

debulking or go for FRS! Marie

Re: Gamma Knife

>>

>>

>>>From: ffusca@... ( A. Fusca)

>>>

>>>Marie,

>>>

>>>I'm coming in a bit late on this but it is great stuff!! Particularly for

>>me

>>>since I am thinking of going to Pitts for GK (everything has been

approved

>>>so all I need to do is give the go ahead). I e-mailed a question to Dr. K

>>>about the swelling too and he skirted around the issue but did say that a

>>>patient never died from that cause there!

>>>

>>>Dr. K seems a little to cocky for my liking but if you are good, you can

>>>afford to be. GK may be like a Rolls Royce but if you ask me, they all

have

>>>carts and donkeys. Dr. K is just saying his donkey has a slightly higher

IQ

>>>than the others. I've often wondered how we know if the doctor is a good

>>>salesman or a good doctor?? I bet most are not good at both so I'm left

>>>wondering if I'm getting a good treatment or a lot of sweet talk.

>>>

>>>Let me know if you get back to Dr. K on the swelling part. You are saving

>>me

>>>$200 plus a trip to Pitts.

>>>

>>>

>>>

>>>>

>>>>

>>>>Today I visited Dr. Kondziolka in Pgh. He is a gamma knife guy; Pgh.

was

>>>the first place in North America to have gamma knife and their

>>>experience/stats go back a long way. If you remember, Adam had

>>gamma

>>>knife here. Anyhow, I am not thinking gamma knife, was thinking

>>>fractionated RS, but went to see him about what he thought of swelling in

>>my

>>>size tumor (I have a 3 cm tumor). --and in talking about hearing

>>>preservation, radiosurgery, etc. I FORGOT to find out about the

>>>swelling--but I will. Of course the fact that I had to wait 2 hours past

>>my

>>>appointment contributed to my aggravation. Anyhow Dr. K. is like most

>>other

>>>good doctors--they firmly believe in what they do. Kind of like a good

>>>sales man has to believe in their product. He said the only reason

people

>>>do fractionated RS is because they don't have a gamma knife; he likened

it

>>>to people who drive a Ford because they can't have a Rolls Royce. He

>>>expounded on the accuracy of the gamma knife; and I tend to believe him,

>>>ebecause the other drs. I have talked with have admitted gamma knife is

the

>>>most accurate. And of course he said FRS does not have anything to back

it

>>>up, meaning stats of longevity. And I said I agree, but unfortunately I

>>>don't have the time to wait for stats to accumulate! His complaint was

>>that

>>>FRS " draw circles " and hit the good stuff with the bad stuff; that's why

>>>they have to use a lower dosage; we are PRECISE. " He said when the FRS

>>guys

>>>possibly make changes to include precise measurements, which would take

>>time

>>>and money, THEN maybe FRS would have something to offer! Of course when

I

>>>asked him why Georg Noren at Rhode Island who HAS a gamma knife is now

>>doing

>>>fractionated gamma knife, he said he didn't know why. If I can find

>>Noren's

>>>address, I intend to ask! FYI, Dr. K said they would give about 2200rads

>>at

>>>the center of the tumor, and edge would get less, 1100 rads; I don't

>>>understand this, but he said the 2200 rads would be equal to about 6000

in

>>>10 fractionations; Dr. had said my treatment wou " and then the

>>>negative stat would be on Brackman, not on RS! " )

>>>>Anyhow, I just saved you guys a $200 visit! Marie

>>>>

>>>>See what's happening for NF2Con 2000!

>>>>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>>><tt>From:</tt> <tt>

>>>> & quot;Marie Drew & quot; & lt;mcdrew@... & gt;</tt>

>>>><br><br>

>>>><!DOCTYPE HTML PUBLIC " -//W3C//DTD W3 HTML//EN " >

>>>><HTML>

>>>><HEAD>

>>>>

>>>><META content=text/html;charset=iso-8859-1 http-equiv=Content-Type>

>>>><META content=' " MSHTML 4.72.3110.7 " ' name=GENERATOR>

>>>></HEAD>

>>>><BODY bgColor=#ffffff>

>>>><DIV><FONT color=#000000 size=2>Today I visited Dr. Kondziolka in

>>>Pgh. & nbsp; He

>>>>is a gamma knife guy; Pgh. was the first place in North America to have

>>gamma

>>>>knife and their experience/stats go back a long way. & nbsp; If you

>>remember,

>>>Adam

>>>> had gamma knife here. & nbsp; Anyhow, I am not thinking gamma

knife,

>>was

>>>>thinking fractionated RS, but went to see him about what he thought of

>>>swelling

>>>>in my size tumor (I have a 3 cm tumor). & nbsp; --and in talking about

>>hearing

>>>>preservation, radiosurgery, etc. I FORGOT to find out about the

>>>swelling--but I

>>>>will. & nbsp; Of course the fact that I had to wait 2 hours past my

>>appointment

>>>>contributed to my aggravation. & nbsp; Anyhow Dr. K. is like most other

good

>>>>doctors--they firmly believe in what they do. & nbsp; Kind of like a good

>>sales

>>>>man has to believe in their product. & nbsp; He said the only reason

people

>>do

>>>>fractionated RS is because they don't have a gamma knife; he likened it

to

>>>>people who drive a Ford because they can't have a Rolls Royce. & nbsp; He

>>>>expounded on the accuracy of the gamma knife; and I tend to believe him,

>>>>ebecause the other drs. I have talked with have admitted gamma knife is

>>the

>>>most

>>>>accurate. & nbsp; And of course he said FRS does not have anything to back

>>it

>>>up,

>>>>meaning stats of longevity. & nbsp; And I said I agree, but unfortunately

I

>>>don't

>>>>have the time to wait for stats to accumulate! & nbsp; His complaint was

>>that

>>>FRS

>>>> & quot;draw circles & quot; and hit the good stuff with the bad stuff;

that's

>>why

>>>>they have to use a lower dosage; we are PRECISE. & quot; & nbsp; He said

when

>>the

>>>>FRS guys possibly make changes to include precise measurements, which

>>would

>>>take

>>>>time and money, THEN maybe FRS would have something to offer! & nbsp; Of

>>course

>>>>when I asked him why Georg Noren at Rhode Island who HAS a gamma knife

is

>>now

>>>>doing fractionated gamma knife, he said he didn't know why. & nbsp; If I

can

>>>find

>>>>Noren's address, I intend to ask! & nbsp; FYI, Dr. K said they would give

>>about

>>>>2200rads at & nbsp; & nbsp; the center of the tumor, and edge would get

less,

>>1100

>>>>rads; & nbsp; & nbsp; I don't understand this, but he said the 2200 rads

would

>>be

>>>>equal to about 6000 in 10 fractionations; Dr. had said my

>>treatment

>>>>would be 3000 rads; so obviously GK gives more? & nbsp; Am I correct that

>>FRS

>>>does

>>>>not & quot;slope off & quot; like GK? & nbsp; I got the impression, and he

did

>>not

>>>>say this, but that with my & quot;unique case & quot; as he put it (which

>>>>translates to I'm a lousy candidate), they would not be real hopeful of

>>saving

>>>>my hearing. & nbsp; He offered the suggestion that I might wait (my tumor

is

>>

>>>>growing) and when necessary have Brackman do another

decompression. & nbsp;

>>I am

>>>>just evil enough to think </FONT></DIV>

>>>><DIV><FONT color=#000000 size=2> & quot;and then the negative stat would

be

>>on

>>>>Brackman, not on RS! & quot;)</FONT></DIV>

>>>><DIV><FONT color=#000000 size=2>Anyhow, I just saved you guys a $200

>>>>visit! & nbsp; Marie</FONT></DIV></BODY></HTML>

>>>>

>>>><br>

>>>><tt>

>>>>See what's happening for NF2Con 2000!<BR>

>>>><a

>>>href= " http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html "

>h

>>t

>>>tp://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html</a></tt>

>>>><br>

>>>>

>>>

>>>

>>>See what's happening for NF2Con 2000!

>>>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>>

>>>

>>

>>

>>See what's happening for NF2Con 2000!

>>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>

>>

>>

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

Marie,

I did not see the exchange about swelling. Can you pass it along if you have

it handy? Perhaps Noren had to think to much about the swelling on the girl

from Canada and did not have the time to write it. When you think about it,

GK would naturally cause swelling. Gamma rays are high level energy. Most of

the gamma will pass through your head (deranging the tumor molecules is the

process). Some will depoist that energy as heat in your head. What happens

when you heat a closed container in your microwave too long??

I was never sold on the fractionated concept because of what happens in

nuclear power plants. Our operators have a dose limit of 5 rems per year. A

rem is like a rad but it contains a 'quality factor' depending on which area

of the body gets the dose. For example, dose on your arms or legs will be

less harmful than dose on an area on the body which contain an organ. In any

case, 1,000+ rads is a HUGE dose that power workers are not likely to

recieve even after a lifetime of working in a nuclear plant. The 5 rem dose

limit is stretched over a year so that it will have less impact on the

operator by giving their bodies time to recover from the radiation dose.

This is the same argument the fractionated people use. I think this argument

applies in nuclear power plants but not for FRS. The reason I think this is

because in FRS the dose is so high, the damage to the body is done and the

body will not recover. The dose goes to the nerves which are so fragile

which makes it even worse.

Now if we step back for a moment and concider all these doctors with lots of

experience who like FRS. Then there is me who is not an expert in nuclear

radiation and surely not one in medical radiation. Who you gonna believe?? I

could be wrong but I'm not sold on the FRS concept.

>

>

>I am interested to see what turns out with the fractionated GK also;

>interesting tho, I was exchanging e mail with Noren and he was very prompt

>in replying, etc. You read the exchange where I asked him about swelling,

>and he said it was not a problem? Well, I went back to him and said, what

>about the lady from Canada who came to you and had big swelling problems and

>eventual surgery? Never got a reply!! (Her name was Terri). I give him

>credit tho, he said fractionated GK was not proven yet, not a good idea for

>me; of course we know what NF2 does to stats! \i overnighted my latest MRI

>to Brackman today, waiting to hear from him about whether to do another

>debulking or go for FRS! Marie

[Guest guest]

What makes you think they give such a large dose in FRS? I was told, they

usually give 2500 rads in 5 treatments; because my tumor is large, it would

be 3000 rads in 10 treatments; but when I talked to Kondziolka, he gave me a

number, which I thought was good (and of course I don't remember-BUT he said

it was " equal to 6000 rads in FRS! This is all over my head! Noren never

got back to me. I think the lady was Terri Ingalls, but I'm not sure.

Do I understand you correctly that in FRS the OVERALL dose is higher, and

that is what you don't like? How many rads does Kondziolka tell you he is

going to give you? I still have not heard from Brackman or the Pittsburgh

doc, and my nerves are wearing thin! Marie

Re: Gamma Knife

>From: ffusca@... ( A. Fusca)

>

>Marie,

>

>I did not see the exchange about swelling. Can you pass it along if you

have

>it handy? Perhaps Noren had to think to much about the swelling on the girl

>from Canada and did not have the time to write it. When you think about it,

>GK would naturally cause swelling. Gamma rays are high level energy. Most

of

>the gamma will pass through your head (deranging the tumor molecules is the

>process). Some will depoist that energy as heat in your head. What happens

>when you heat a closed container in your microwave too long??

>

>I was never sold on the fractionated concept because of what happens in

>nuclear power plants. Our operators have a dose limit of 5 rems per year. A

>rem is like a rad but it contains a 'quality factor' depending on which

area

>of the body gets the dose. For example, dose on your arms or legs will be

>less harmful than dose on an area on the body which contain an organ. In

any

>case, 1,000+ rads is a HUGE dose that power workers are not likely to

>recieve even after a lifetime of working in a nuclear plant. The 5 rem dose

>limit is stretched over a year so that it will have less impact on the

>operator by giving their bodies time to recover from the radiation dose.

>This is the same argument the fractionated people use. I think this

argument

>applies in nuclear power plants but not for FRS. The reason I think this is

>because in FRS the dose is so high, the damage to the body is done and the

>body will not recover. The dose goes to the nerves which are so fragile

>which makes it even worse.

>

>Now if we step back for a moment and concider all these doctors with lots

of

>experience who like FRS. Then there is me who is not an expert in nuclear

>radiation and surely not one in medical radiation. Who you gonna believe??

I

>could be wrong but I'm not sold on the FRS concept.

>

>

>

>>

>>

>>I am interested to see what turns out with the fractionated GK also;

>>interesting tho, I was exchanging e mail with Noren and he was very prompt

>>in replying, etc. You read the exchange where I asked him about swelling,

>>and he said it was not a problem? Well, I went back to him and said,

what

>>about the lady from Canada who came to you and had big swelling problems

and

>>eventual surgery? Never got a reply!! (Her name was Terri). I give him

>>credit tho, he said fractionated GK was not proven yet, not a good idea

for

>>me; of course we know what NF2 does to stats! \i overnighted my latest

MRI

>>to Brackman today, waiting to hear from him about whether to do another

>>debulking or go for FRS! Marie

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

Marie,

I did not mean to imply they give a high dose only in FRS. You get a high

dose in all types radiosurgery. The point I was trying to make is that say

you get 300 rads in 10 treatments (Total of 3000 rads as your example

below). Well, even 300 rads is a high dose. My thinking is that your head

has some pretty sensitive stuff inside. Giving you 300 rads and assuming you

will 'recover' for the following treatment is wishful thinking. What I

beleive is that 10 treatments of 300 rads are vertually the same as one 3000

rad treatment. I could be wrong and perhaps there are other advantages of

FRS - like Dr. Noren says, you never know until you try.

I don't know how Kondziolka does his math either but I hope he knows what he

is doing - I told my doctor's office here in Toronto to schedule me for GK

with the K-man and Lunsford. I didn't ask the K-man how many rads I was

getting but he did say with a tumor of my size, I 'should' do fine.

>

>

>What makes you think they give such a large dose in FRS? I was told, they

>usually give 2500 rads in 5 treatments; because my tumor is large, it would

>be 3000 rads in 10 treatments; but when I talked to Kondziolka, he gave me a

>number, which I thought was good (and of course I don't remember-BUT he said

>it was " equal to 6000 rads in FRS! This is all over my head! Noren never

>got back to me. I think the lady was Terri Ingalls, but I'm not sure.

>Do I understand you correctly that in FRS the OVERALL dose is higher, and

>that is what you don't like? How many rads does Kondziolka tell you he is

>going to give you? I still have not heard from Brackman or the Pittsburgh

>doc, and my nerves are wearing thin! Marie

[Guest guest]

,

Radiation kills tumor cells as well as normal cells. When the dose is large

enough, the normal cells would be damaged severely so that complications

occur. This is the limiting factor for radiation treatment since tumor cell

will be killed when the dose is large enough. In order to reduce the

complication, the dose to the tumor is compromised. The advantage for the

radiation is that normal cells repair its damage and repopulate a little

faster than the tumor cells. That is why multifractions come to play. It

delivers a little dose each time without causing severe complication to

normal tissue. since repopulation is envolved, to kill same amount of tumor

cells, one needs more cumulative dose for multifractional treatment vs.

single fraction treatment. It is not a linear relationship. The amount of of

dose is more based on clinical results rather than mathmatical calculations.

When a dose to reach satisfying tumor control is greater than the dose for a

accetable complication rate, more fractions with less daily dose may be

helpful.

Re: Gamma Knife

> From: ffusca@... ( A. Fusca)

>

> Marie,

>

> I did not mean to imply they give a high dose only in FRS. You get a high

> dose in all types radiosurgery. The point I was trying to make is that say

> you get 300 rads in 10 treatments (Total of 3000 rads as your example

> below). Well, even 300 rads is a high dose. My thinking is that your head

> has some pretty sensitive stuff inside. Giving you 300 rads and assuming

you

> will 'recover' for the following treatment is wishful thinking. What I

> beleive is that 10 treatments of 300 rads are vertually the same as one

3000

> rad treatment. I could be wrong and perhaps there are other advantages of

> FRS - like Dr. Noren says, you never know until you try.

>

> I don't know how Kondziolka does his math either but I hope he knows what

he

> is doing - I told my doctor's office here in Toronto to schedule me for GK

> with the K-man and Lunsford. I didn't ask the K-man how many rads I was

> getting but he did say with a tumor of my size, I 'should' do fine.

>

>

>

> >

> >

> >What makes you think they give such a large dose in FRS? I was told,

they

> >usually give 2500 rads in 5 treatments; because my tumor is large, it

would

> >be 3000 rads in 10 treatments; but when I talked to Kondziolka, he gave

me a

> >number, which I thought was good (and of course I don't remember-BUT he

said

> >it was " equal to 6000 rads in FRS! This is all over my head! Noren

never

> >got back to me. I think the lady was Terri Ingalls, but I'm not sure.

> >Do I understand you correctly that in FRS the OVERALL dose is higher, and

> >that is what you don't like? How many rads does Kondziolka tell you he

is

> >going to give you? I still have not heard from Brackman or the

Pittsburgh

> >doc, and my nerves are wearing thin! Marie

>

>

> See what's happening for NF2Con 2000!

> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

[Guest guest]

By Jove I think you've got it .....

.

Re: Gamma Knife

>

>

> ,

> Radiation kills tumor cells as well as normal cells. When the dose is

large

> enough, the normal cells would be damaged severely so that complications

> occur. This is the limiting factor for radiation treatment since tumor

cell

> will be killed when the dose is large enough. In order to reduce the

> complication, the dose to the tumor is compromised. The advantage for the

> radiation is that normal cells repair its damage and repopulate a little

> faster than the tumor cells. That is why multifractions come to play. It

> delivers a little dose each time without causing severe complication to

> normal tissue. since repopulation is envolved, to kill same amount of

tumor

> cells, one needs more cumulative dose for multifractional treatment vs.

> single fraction treatment. It is not a linear relationship. The amount of

of

> dose is more based on clinical results rather than mathmatical

calculations.

> When a dose to reach satisfying tumor control is greater than the dose for

a

> accetable complication rate, more fractions with less daily dose may be

> helpful.

>

>

>

> ----- Original Message -----

>

> To: <NF2_Crewonelist>

> Sent: Friday, February 18, 2000 10:20 PM

[Guest guest]

They're salesmen....nothing more nothing less. Would an Apple computer

salesman talk about wonderful things a PC can do?

Mark

It is difficult for me to understand

how experts in the field can have such radically different views; sure makes

it tough on the patients! Marie

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

I think the whole think the fractionated guys are banking on, is that

healthy tissue recovers, tumor tissue does not; however the Kman said they

don't really know that! --of course he is anti-FRS. But given the people

who have had successfull FRS, not losing their hearing, and no more tumor

growth SO FAR, wouldn't it indicate that maybe the FRS docs are right? Just

wish this was five years from now so I had a little more data to go on; I

just came back from Falk Library at UPMC; I'm chasing rainbows; the data is

not there yet because of the time that needs to elapse,; what scares me is

it's just a gamble; and if my luck holds like it does in LV, I'm a loser !!

Marie

PS Still no reimbursement check!

Re: Gamma Knife

>From: ffusca@... ( A. Fusca)

>

>Marie,

>

>I did not mean to imply they give a high dose only in FRS. You get a high

>dose in all types radiosurgery. The point I was trying to make is that say

>you get 300 rads in 10 treatments (Total of 3000 rads as your example

>below). Well, even 300 rads is a high dose. My thinking is that your head

>has some pretty sensitive stuff inside. Giving you 300 rads and assuming

you

>will 'recover' for the following treatment is wishful thinking. What I

>beleive is that 10 treatments of 300 rads are vertually the same as one

3000

>rad treatment. I could be wrong and perhaps there are other advantages of

>FRS - like Dr. Noren says, you never know until you try.

>

>I don't know how Kondziolka does his math either but I hope he knows what

he

>is doing - I told my doctor's office here in Toronto to schedule me for GK

>with the K-man and Lunsford. I didn't ask the K-man how many rads I was

>getting but he did say with a tumor of my size, I 'should' do fine.

>

>

>

>>

>>

>>What makes you think they give such a large dose in FRS? I was told, they

>>usually give 2500 rads in 5 treatments; because my tumor is large, it

would

>>be 3000 rads in 10 treatments; but when I talked to Kondziolka, he gave me

a

>>number, which I thought was good (and of course I don't remember-BUT he

said

>>it was " equal to 6000 rads in FRS! This is all over my head! Noren never

>>got back to me. I think the lady was Terri Ingalls, but I'm not sure.

>>Do I understand you correctly that in FRS the OVERALL dose is higher, and

>>that is what you don't like? How many rads does Kondziolka tell you he is

>>going to give you? I still have not heard from Brackman or the Pittsburgh

>>doc, and my nerves are wearing thin! Marie

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

I understood exactly as you say; however when I talked to Dr. Kondziolka the

gamma knife guy at UPMC (who is radically anti-frs) he told me they do NOT

understand how the nerve operates, when it recovers, etc. Obviously time

and statistics will show who is right. It is difficult for me to understand

how experts in the field can have such radically different views; sure makes

it tough on the patients! Marie

Re: Gamma Knife

>

>

>,

>Radiation kills tumor cells as well as normal cells. When the dose is large

>enough, the normal cells would be damaged severely so that complications

>occur. This is the limiting factor for radiation treatment since tumor cell

>will be killed when the dose is large enough. In order to reduce the

>complication, the dose to the tumor is compromised. The advantage for the

>radiation is that normal cells repair its damage and repopulate a little

>faster than the tumor cells. That is why multifractions come to play. It

>delivers a little dose each time without causing severe complication to

>normal tissue. since repopulation is envolved, to kill same amount of tumor

>cells, one needs more cumulative dose for multifractional treatment vs.

>single fraction treatment. It is not a linear relationship. The amount of

of

>dose is more based on clinical results rather than mathmatical

calculations.

>When a dose to reach satisfying tumor control is greater than the dose for

a

>accetable complication rate, more fractions with less daily dose may be

>helpful.

>

>

>

> Re: Gamma Knife

>

>

>> From: ffusca@... ( A. Fusca)

>>

>> Marie,

>>

>> I did not mean to imply they give a high dose only in FRS. You get a high

>> dose in all types radiosurgery. The point I was trying to make is that

say

>> you get 300 rads in 10 treatments (Total of 3000 rads as your example

>> below). Well, even 300 rads is a high dose. My thinking is that your head

>> has some pretty sensitive stuff inside. Giving you 300 rads and assuming

>you

>> will 'recover' for the following treatment is wishful thinking. What I

>> beleive is that 10 treatments of 300 rads are vertually the same as one

>3000

>> rad treatment. I could be wrong and perhaps there are other advantages of

>> FRS - like Dr. Noren says, you never know until you try.

>>

>> I don't know how Kondziolka does his math either but I hope he knows what

>he

>> is doing - I told my doctor's office here in Toronto to schedule me for

GK

>> with the K-man and Lunsford. I didn't ask the K-man how many rads I was

>> getting but he did say with a tumor of my size, I 'should' do fine.

>>

>>

>>

>> >

>> >

>> >What makes you think they give such a large dose in FRS? I was told,

>they

>> >usually give 2500 rads in 5 treatments; because my tumor is large, it

>would

>> >be 3000 rads in 10 treatments; but when I talked to Kondziolka, he gave

>me a

>> >number, which I thought was good (and of course I don't remember-BUT he

>said

>> >it was " equal to 6000 rads in FRS! This is all over my head! Noren

>never

>> >got back to me. I think the lady was Terri Ingalls, but I'm not sure.

>> >Do I understand you correctly that in FRS the OVERALL dose is higher,

and

>> >that is what you don't like? How many rads does Kondziolka tell you he

>is

>> >going to give you? I still have not heard from Brackman or the

>Pittsburgh

>> >doc, and my nerves are wearing thin! Marie

>>

>>

>> See what's happening for NF2Con 2000!

>> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>>

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

,

You have summarized the FRS theory pretty well. I agree this is complex and

based on clinical trails as are all the other forms of RS treatment.

>

>

>,

>Radiation kills tumor cells as well as normal cells. When the dose is large

>enough, the normal cells would be damaged severely so that complications

>occur. This is the limiting factor for radiation treatment since tumor cell

>will be killed when the dose is large enough. In order to reduce the

>complication, the dose to the tumor is compromised. The advantage for the

>radiation is that normal cells repair its damage and repopulate a little

>faster than the tumor cells. That is why multifractions come to play. It

>delivers a little dose each time without causing severe complication to

>normal tissue. since repopulation is envolved, to kill same amount of tumor

>cells, one needs more cumulative dose for multifractional treatment vs.

>single fraction treatment. It is not a linear relationship. The amount of of

>dose is more based on clinical results rather than mathmatical calculations.

>When a dose to reach satisfying tumor control is greater than the dose for a

>accetable complication rate, more fractions with less daily dose may be

>helpful.

>

>

>

[Guest guest]

I tend to agree with the Kman. My feeling is that the 'small' dose in one

fractionated treatment is LARGE enough to cause irreversible damage. Sure,

it is smaller than a single treatment dose but it is still large. This

reminds me of an article describing GK from Dr. Noren a few years ago. He

said 'the GK gives off 201 pencils of radiation'. He goes on to say that

'together the pencils form a very powerful dose, however each pencil itself

causes immeasurable harm'. The key word is 'immeasurable'. They may not be

able to measure it but that does not mean that is causes no harm. I'm

surprised the Kman is anti-FRS. I thought his center had various RS treatments.

We are all basically chasing rainbows. There is no consensus in the medical

field so I suppose we have to roll the dice for now. Personally, I am

waiting for the NF2 pill. One pill and bingo, no NF2 (and no after taste

either).

I can't help much for your NF2 problems but I can offer some friendly LV

tips. Never play slot machines - the hotels make the bulk of their money on

these machines so obviously people are losing loads of money this way.

Blackjack offers the best odds (close to 50/50) so this is the game of

choice. You may think you are playing against the dealer but you are really

playing against yourself because the dealers' actions are governed by the

rules. Good luck! Are you going to LV this year??

>

>

>I think the whole think the fractionated guys are banking on, is that

>healthy tissue recovers, tumor tissue does not; however the Kman said they

>don't really know that! --of course he is anti-FRS. But given the people

>who have had successfull FRS, not losing their hearing, and no more tumor

>growth SO FAR, wouldn't it indicate that maybe the FRS docs are right? Just

>wish this was five years from now so I had a little more data to go on; I

>just came back from Falk Library at UPMC; I'm chasing rainbows; the data is

>not there yet because of the time that needs to elapse,; what scares me is

>it's just a gamble; and if my luck holds like it does in LV, I'm a loser !!

>Marie

>PS Still no reimbursement check!

[Guest guest]

Perhaps you should just wait another 4 or 5 years until that pill

comes out

seeing that FSR and GK are so dangerous ~|)))

.

Re: Gamma Knife

> From: ffusca@...

>

> ,

>

> You have summarized the FRS theory pretty well. I agree this is complex

and

> based on clinical trails as are all the other forms of RS treatment.

>

>

>

> >

> >

> >,

> >Radiation kills tumor cells as well as normal cells. When the dose is

large

> >enough, the normal cells would be damaged severely so that complications

> >occur. This is the limiting factor for radiation treatment since tumor

cell

> >will be killed when the dose is large enough. In order to reduce the

> >complication, the dose to the tumor is compromised. The advantage for the

> >radiation is that normal cells repair its damage and repopulate a little

> >faster than the tumor cells. That is why multifractions come to play. It

> >delivers a little dose each time without causing severe complication to

> >normal tissue. since repopulation is envolved, to kill same amount of

tumor

> >cells, one needs more cumulative dose for multifractional treatment vs.

> >single fraction treatment. It is not a linear relationship. The amount of

of

> >dose is more based on clinical results rather than mathmatical

calculations.

> >When a dose to reach satisfying tumor control is greater than the dose

for a

> >accetable complication rate, more fractions with less daily dose may be

> >helpful.

> >

> >

> >

>

>

> See what's happening for NF2Con 2000!

> http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

[Guest guest]

I'm curious, what are these " slight " risk?

Mark

----Original Message Follows----

; I would take it to mean " slight " ; we

know nothing is all safe, so maybe slight damage has to be a risk you are

willing to take to get GK??

marie

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

No, thanks for the advice, but no LV for me this year; and when I go, I try

to find nickel machines! A quarter for me is big gambling! And I am

notoriously unlucky! I wouldn't mind losing if at least it would take me a

while! Again I agree with you we are chasing rainbows. I am surprised

Noren said one pencil beam causes immeasurable harm; I had always understood

the benefit was that one beam alone was not so destructive, it was when they

all converge that they do the work; Seems one of us is misunderstanding,

probably something that is pretty important! Interesting tho, I have been

reading about RS on the web, and if you do a search on stereotactic

radiosurgery, you get like 3000 hits!! The K man has VERY strong opinions;

he is like many good docs who get tunnel vision, as far as I am concerned.

As much as I don't want to do, I guess I am going to end up with more

surgery, and hope to still save my hearing for a year or so. Maybe

debulking me will be an annual event; Brackman can just schedule me in for

every April 1 or something!! Is your apt scheduled yet? marie

Re: Gamma Knife

>From: ffusca@...

>

>

>I tend to agree with the Kman. My feeling is that the 'small' dose in one

>fractionated treatment is LARGE enough to cause irreversible damage. Sure,

>it is smaller than a single treatment dose but it is still large. This

>reminds me of an article describing GK from Dr. Noren a few years ago. He

>said 'the GK gives off 201 pencils of radiation'. He goes on to say that

>'together the pencils form a very powerful dose, however each pencil itself

>causes immeasurable harm'. The key word is 'immeasurable'. They may not be

>able to measure it but that does not mean that is causes no harm. I'm

>surprised the Kman is anti-FRS. I thought his center had various RS

treatments.

>

>We are all basically chasing rainbows. There is no consensus in the medical

>field so I suppose we have to roll the dice for now. Personally, I am

>waiting for the NF2 pill. One pill and bingo, no NF2 (and no after taste

>either).

>

>I can't help much for your NF2 problems but I can offer some friendly LV

>tips. Never play slot machines - the hotels make the bulk of their money on

>these machines so obviously people are losing loads of money this way.

>Blackjack offers the best odds (close to 50/50) so this is the game of

>choice. You may think you are playing against the dealer but you are really

>playing against yourself because the dealers' actions are governed by the

>rules. Good luck! Are you going to LV this year??

>

>

>

>>

>>

>>I think the whole think the fractionated guys are banking on, is that

>>healthy tissue recovers, tumor tissue does not; however the Kman said they

>>don't really know that! --of course he is anti-FRS. But given the people

>>who have had successfull FRS, not losing their hearing, and no more tumor

>>growth SO FAR, wouldn't it indicate that maybe the FRS docs are right?

Just

>>wish this was five years from now so I had a little more data to go on; I

>>just came back from Falk Library at UPMC; I'm chasing rainbows; the data

is

>>not there yet because of the time that needs to elapse,; what scares me is

>>it's just a gamble; and if my luck holds like it does in LV, I'm a loser

!!

>>Marie

>>PS Still no reimbursement check!

>

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>