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Hi Jimmy,

You sure have a full plate at the moment...You've started at a good place on

finding out about neck surgery,,,,I really hope that it can work out and you

get lots of possitive feedback on the surgery and can go forward and have it

done....because you can regain use in your hand...Think possitive :)

Lana

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Hi Jimmy,

You sure have a full plate at the moment...You've started at a good place on

finding out about neck surgery,,,,I really hope that it can work out and you

get lots of possitive feedback on the surgery and can go forward and have it

done....because you can regain use in your hand...Think possitive :)

Lana

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Jimmy,

Anne has had 2 neck surgeries. I do know that the instrumentation has

significantly improved to monitor the nerve activity while the surgery is

going on. Anne had a terrific team of surgeons in SanDiego, CA who are head

and neck renowned. they have done well over 300 surgeries in the last three

years. Kaiser Permanente pays them phenomenally because of their reputation

and expertise. They are very personable and qualified. Perhaps you'd like

to consult with them. Let me know. Good luck. Big decisions I know. Vicki

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Guys,

When I asked my doctor about the Gamma Knife becoming cancerous he told me

that there was a very small chance. But this doesn't give me a clear

perspective of the exact chances.

talks about his doctor not recommending the Gamma Knife on non cancerous

tumors because the belts of radium can cause them to become cancerous. That

was a concern of mine during my appointment last Monday.

Vicki, you said that Anne had two neck surgeries in San Diego. Do they also

specialize in the Gamma Knife? I am weighing my options as to whether choose

another surgery or have the Gamma Knife. Would you please get me their

number so I can contact them directly?

Sally

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Vicki

Well,right now,he has afew test to run before he decides if he can operate

on the neck tumor.Rest assurred,no matter what he decides,I'll get a second

opinion.So I tucked your email away for now,thankyou.

Out of curiosity,could you tell me how Anne's surgeries turned out?The only

other neck tumor situation I heard of was my sister.She had

one,and the Dr said " no way could he remove it,he would have to cut too many

nerves. "

Jimmy

Re: Jimmy goes to Dr!!!!

> Jimmy,

> Anne has had 2 neck surgeries. I do know that the instrumentation has

> significantly improved to monitor the nerve activity while the surgery is

> going on. Anne had a terrific team of surgeons in SanDiego, CA who are

head

> and neck renowned. they have done well over 300 surgeries in the last

three

> years. Kaiser Permanente pays them phenomenally because of their

reputation

> and expertise. They are very personable and qualified. Perhaps you'd

like

> to consult with them. Let me know. Good luck. Big decisions I know.

Vicki

>

>

>

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Jimmy,

Anne's first major NF surgery was on her neck at UCLA. She was 14 and we

were petrified. It was protruding about 4 inches on the front right side of

her neck. The prognosis was probably a trach, inability to speak, several

days in intensive care and then recoup. This was 12 years ago. Thankfully

progress has been made in the ENT world. Anne was a miracle to her famous

surgeon Dr. Calcaterra. She talked within 4 hours after coming up from

surgery (no ICU) just a whisper but it shocked him. He just turned to us and

said " it's a miracle " . Her chords on the right were paralized. She has her

speech back to a gruff sound and she can not sing and her breathing is a

little labored (this could also be due to a lung tumor). In 1198 she had

another neck surgery and they removed 6 tumors from her neck area. It was a

relatively easy surgery in terms of what they took. they had to leave the

clavicle tumor and there are others up behind the ear which they would like

to do at another time and do not expect problems. If you need actual

descriptions of the tumors and placement, I can check her files. One of the

6 tumors was protruding very badly like about 3-4 inches again. The hardest

part for her was the staples. But you can not even see the scar which was

from center up to her ear. Does this help? Vicki

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Jimmy,

Anne's first major NF surgery was on her neck at UCLA. She was 14 and we

were petrified. It was protruding about 4 inches on the front right side of

her neck. The prognosis was probably a trach, inability to speak, several

days in intensive care and then recoup. This was 12 years ago. Thankfully

progress has been made in the ENT world. Anne was a miracle to her famous

surgeon Dr. Calcaterra. She talked within 4 hours after coming up from

surgery (no ICU) just a whisper but it shocked him. He just turned to us and

said " it's a miracle " . Her chords on the right were paralized. She has her

speech back to a gruff sound and she can not sing and her breathing is a

little labored (this could also be due to a lung tumor). In 1198 she had

another neck surgery and they removed 6 tumors from her neck area. It was a

relatively easy surgery in terms of what they took. they had to leave the

clavicle tumor and there are others up behind the ear which they would like

to do at another time and do not expect problems. If you need actual

descriptions of the tumors and placement, I can check her files. One of the

6 tumors was protruding very badly like about 3-4 inches again. The hardest

part for her was the staples. But you can not even see the scar which was

from center up to her ear. Does this help? Vicki

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Sally and anyone else interested:

Anne's ENT surgeon specializing in Head/Neck is:

Dr. o A Cueva, M.D.,F.A.C.S.

Head and Neck Surgery PHONE 619/528-2597

Otiology/Neurotology

Skull Base Surger4647 Zion Ave.

San Diego, CA 92120

He worked on a team with Dr. Bill Mastrodimos, Neurosurgeon. The whole team

of nurses, anesthetists, everyone involved with these guys is great! It is

Kaiser Permanente Medical Center in San Diego.

Gopod Luck, Sally. Vicki

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Jimmy!!!! many of us have had C spine and neck surgery! I've had 3! you

arerightthough, it is very serious,, and you needa top surgeon. where is this

tumor?

Jimmy wrote:

> Vicki

> Well,right now,he has afew test to run before he decides if he can operate

> on the neck tumor.Rest assurred,no matter what he decides,I'll get a second

> opinion.So I tucked your email away for now,thankyou.

> Out of curiosity,could you tell me how Anne's surgeries turned out?The only

> other neck tumor situation I heard of was my sister.She had

> one,and the Dr said " no way could he remove it,he would have to cut too many

> nerves. "

> Jimmy

> Re: Jimmy goes to Dr!!!!

>

> > Jimmy,

> > Anne has had 2 neck surgeries. I do know that the instrumentation has

> > significantly improved to monitor the nerve activity while the surgery is

> > going on. Anne had a terrific team of surgeons in SanDiego, CA who are

> head

> > and neck renowned. they have done well over 300 surgeries in the last

> three

> > years. Kaiser Permanente pays them phenomenally because of their

> reputation

> > and expertise. They are very personable and qualified. Perhaps you'd

> like

> > to consult with them. Let me know. Good luck. Big decisions I know.

> Vicki

> >

> >

> >

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Jimmy!!!! many of us have had C spine and neck surgery! I've had 3! you

arerightthough, it is very serious,, and you needa top surgeon. where is this

tumor?

Jimmy wrote:

> Vicki

> Well,right now,he has afew test to run before he decides if he can operate

> on the neck tumor.Rest assurred,no matter what he decides,I'll get a second

> opinion.So I tucked your email away for now,thankyou.

> Out of curiosity,could you tell me how Anne's surgeries turned out?The only

> other neck tumor situation I heard of was my sister.She had

> one,and the Dr said " no way could he remove it,he would have to cut too many

> nerves. "

> Jimmy

> Re: Jimmy goes to Dr!!!!

>

> > Jimmy,

> > Anne has had 2 neck surgeries. I do know that the instrumentation has

> > significantly improved to monitor the nerve activity while the surgery is

> > going on. Anne had a terrific team of surgeons in SanDiego, CA who are

> head

> > and neck renowned. they have done well over 300 surgeries in the last

> three

> > years. Kaiser Permanente pays them phenomenally because of their

> reputation

> > and expertise. They are very personable and qualified. Perhaps you'd

> like

> > to consult with them. Let me know. Good luck. Big decisions I know.

> Vicki

> >

> >

> >

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Jimmy,

Mail your MRI's to another doctor like Epstein and get a second opinion.

Mikey A

At 02:52 PM 4/7/2000 -0400, you wrote:

>ALOHA Kemosabies

>

>I finally saw my Dr about my spinal scan and the leg pain.Well,lets

>see,along story short cuz I had to get up at 6am.He said I have " numorous

>small tumors on thelumbar area " L1,L2,L3,L4,L5 " I said " whoa whoa Dr.you sunk

>my battleship:)(he didn't laugh:(So anyhow,he said he could remove them " if

>I want " " it will take two,maybe 3 surgeries " Worse case senerio " lots of leg

>numbness,but no more pain " Well hey,if he numbs the leg,how do I know the

>pain is really gone?Maybe it will still be there,I just can't

>tell. " NO,No,No: "

> Then we talked about the 14 yr old tumor.He said he could take that out no

>problem.I said " but Dr I've grown attached to it (rim shot)

> Here is the big thing.He thinks if I have a tumor in my neck removed,I'll

>regain alot of mobility in my left hand(which is an atrophied lump)I'm

>pretty excited about that(my hands been like this 9 years).Still,He wants

>test done to see if the neck tumor will come out ok,or to see if it's

>attached to ALOT of important nerves.

>me personally,I'm skeptical about the whole day.Hard to believe he only

>thinks good things will happen from all this. Well,it's my decision,I could

>let it be.Who can tell me about neck tumor surgeries?

>Jimmy

>

>

>

>

>

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Thata the plan mikey.Does he have an e mail address also?

Jimmy

Re: Jimmy goes to Dr!!!!

> Jimmy,

> Mail your MRI's to another doctor like Epstein and get a second opinion.

> Mikey A

>

>

> At 02:52 PM 4/7/2000 -0400, you wrote:

> >ALOHA Kemosabies

> >

> >I finally saw my Dr about my spinal scan and the leg pain.Well,lets

> >see,along story short cuz I had to get up at 6am.He said I have " numorous

> >small tumors on thelumbar area " L1,L2,L3,L4,L5 " I said " whoa whoa Dr.you

sunk

> >my battleship:)(he didn't laugh:(So anyhow,he said he could remove them

" if

> >I want " " it will take two,maybe 3 surgeries " Worse case senerio " lots of leg

> >numbness,but no more pain " Well hey,if he numbs the leg,how do I know the

> >pain is really gone?Maybe it will still be there,I just can't

> >tell. " NO,No,No: "

> > Then we talked about the 14 yr old tumor.He said he could take that out

no

> >problem.I said " but Dr I've grown attached to it (rim shot)

> > Here is the big thing.He thinks if I have a tumor in my neck

removed,I'll

> >regain alot of mobility in my left hand(which is an atrophied lump)I'm

> >pretty excited about that(my hands been like this 9 years).Still,He wants

> >test done to see if the neck tumor will come out ok,or to see if it's

> >attached to ALOT of important nerves.

> >me personally,I'm skeptical about the whole day.Hard to believe he only

> >thinks good things will happen from all this. Well,it's my decision,I

could

> >let it be.Who can tell me about neck tumor surgeries?

> >Jimmy

> >

> >

> >

> >

> >

>

>

>

>

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Thanks Vicki,thats all my ? for now:).The Dr is not even worried about the

neck tumor right now.I saw him about my leg pain,and the neck tumor was " a

bonus " .Right now we are talking about the lumbar tumors,and yanking the

lump(14 yr tumor)out at the same time.I'm not sure if he classes that as a

spinal tumor,but I do,it is pretty far away from the spine(ubder my shoulder

blade) and doesnt hurt at all,except when I rake the bump on a chair

spindal.

Jimmy

Re: Jimmy goes to Dr!!!!

> Jimmy,

> Anne's first major NF surgery was on her neck at UCLA. She was 14 and we

> were petrified. It was protruding about 4 inches on the front right side

of

> her neck. The prognosis was probably a trach, inability to speak, several

> days in intensive care and then recoup. This was 12 years ago.

Thankfully

> progress has been made in the ENT world. Anne was a miracle to her famous

> surgeon Dr. Calcaterra. She talked within 4 hours after coming up from

> surgery (no ICU) just a whisper but it shocked him. He just turned to us

and

> said " it's a miracle " . Her chords on the right were paralized. She has

her

> speech back to a gruff sound and she can not sing and her breathing is a

> little labored (this could also be due to a lung tumor). In 1198 she had

> another neck surgery and they removed 6 tumors from her neck area. It was

a

> relatively easy surgery in terms of what they took. they had to leave the

> clavicle tumor and there are others up behind the ear which they would

like

> to do at another time and do not expect problems. If you need actual

> descriptions of the tumors and placement, I can check her files. One of

the

> 6 tumors was protruding very badly like about 3-4 inches again. The

hardest

> part for her was the staples. But you can not even see the scar which was

> from center up to her ear. Does this help? Vicki

>

>

>

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Thanks Vicki,thats all my ? for now:).The Dr is not even worried about the

neck tumor right now.I saw him about my leg pain,and the neck tumor was " a

bonus " .Right now we are talking about the lumbar tumors,and yanking the

lump(14 yr tumor)out at the same time.I'm not sure if he classes that as a

spinal tumor,but I do,it is pretty far away from the spine(ubder my shoulder

blade) and doesnt hurt at all,except when I rake the bump on a chair

spindal.

Jimmy

Re: Jimmy goes to Dr!!!!

> Jimmy,

> Anne's first major NF surgery was on her neck at UCLA. She was 14 and we

> were petrified. It was protruding about 4 inches on the front right side

of

> her neck. The prognosis was probably a trach, inability to speak, several

> days in intensive care and then recoup. This was 12 years ago.

Thankfully

> progress has been made in the ENT world. Anne was a miracle to her famous

> surgeon Dr. Calcaterra. She talked within 4 hours after coming up from

> surgery (no ICU) just a whisper but it shocked him. He just turned to us

and

> said " it's a miracle " . Her chords on the right were paralized. She has

her

> speech back to a gruff sound and she can not sing and her breathing is a

> little labored (this could also be due to a lung tumor). In 1198 she had

> another neck surgery and they removed 6 tumors from her neck area. It was

a

> relatively easy surgery in terms of what they took. they had to leave the

> clavicle tumor and there are others up behind the ear which they would

like

> to do at another time and do not expect problems. If you need actual

> descriptions of the tumors and placement, I can check her files. One of

the

> 6 tumors was protruding very badly like about 3-4 inches again. The

hardest

> part for her was the staples. But you can not even see the scar which was

> from center up to her ear. Does this help? Vicki

>

>

>

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I have no idea where it is in the neck.He just talked about it briefly.

Jimmy

Re: Jimmy goes to Dr!!!!

> >

> > > Jimmy,

> > > Anne has had 2 neck surgeries. I do know that the instrumentation has

> > > significantly improved to monitor the nerve activity while the surgery

is

> > > going on. Anne had a terrific team of surgeons in SanDiego, CA who

are

> > head

> > > and neck renowned. they have done well over 300 surgeries in the last

> > three

> > > years. Kaiser Permanente pays them phenomenally because of their

> > reputation

> > > and expertise. They are very personable and qualified. Perhaps you'd

> > like

> > > to consult with them. Let me know. Good luck. Big decisions I know.

> > Vicki

> > >

> > >

> > >

>

>

>

>

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Jimmy,

The lumbar tumor removal went well on Anne.

She was up riding a horse after 2 weeks. But she was in her teens and there

were no complications. I hope this for you. Keep us posted. These are

awful decisions. Just the idea of surgery scares me. I am a great nurse,

but a very bad patient. All of you are so much better!!!!to say the least.

Vicki

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Hello Sally,

explained this reasoning a while back on a post. There may have been

cases of beign tumors being malignant after Gamma Knife and since GK is used

around the world, the statistics of tumors turning malignant is probably

just .01% or something.

, please correct me if I'm wrong =P

Thanks,

Mark

----Original Message Follows----

From: GospelBlessings@...

When I asked my doctor about the Gamma Knife becoming cancerous he told me

that there was a very small chance.

______________________________________________________

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

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In a message dated 4/7/00 2:53:16 PM Eastern Daylight Time,

HandsomeJimmy@... writes:

<< I finally saw my Dr about my spinal scan and the leg pain.Well,lets

see,along story short cuz I had to get up at 6am.He said I have " numorous

small tumors on thelumbar area " L1,L2,L3,L4,L5 " I said " whoa whoa Dr.you sunk

my battleship:)(he didn't laugh:(So anyhow,he said he could remove them " if

I want " " it will take two,maybe 3 surgeries " Worse case senerio " lots of leg

numbness,but no more pain " Well hey,if he numbs the leg,how do I know the

pain is really gone?Maybe it will still be there,I just can't

tell. " NO,No,No: "

Then we talked about the 14 yr old tumor.He said he could take that out no

problem.I said " but Dr I've grown attached to it (rim shot)

Here is the big thing.He thinks if I have a tumor in my neck removed,I'll

regain alot of mobility in my left hand(which is an atrophied lump)I'm

pretty excited about that(my hands been like this 9 years).Still,He wants

test done to see if the neck tumor will come out ok,or to see if it's

attached to ALOT of important nerves.

me personally,I'm skeptical about the whole day.Hard to believe he only

thinks good things will happen from all this. Well,it's my decision,I could

let it be.Who can tell me about neck tumor surgeries?

Jimmy

>>

----------------------

hi Jimmy,

I have a similar tumor in my neck/shoulder tht has really wiped out my left

arm and hand. My neuro won't touch it s its involved with other nerves and

the nerve its on is imperative for using the arm and hand. Petito had

EXACTLY the same tumor removed (same neuro as I have) and now he cant use the

arm/hand at all. so I'm putting up with the occasional pain and limited use

as it beats nothing. Don't mean to give ya a negative view. If your doc is

confident, great. I wish you the best. But make sure he is very sure about

taking it.

Good luck bud.

-Pat

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and Marie,

Are you going to write up a document on what your research has found and do

a summery??????

.

Re: Jimmy goes to Dr!!!!

> Hello Sally,

>

> explained this reasoning a while back on a post. There may have been

> cases of beign tumors being malignant after Gamma Knife and since GK is

used

> around the world, the statistics of tumors turning malignant is probably

> just .01% or something.

>

> , please correct me if I'm wrong =P

>

> Thanks,

>

> Mark

>

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

> From: GospelBlessings@...

>

>

> When I asked my doctor about the Gamma Knife becoming cancerous he told me

> that there was a very small chance.

> ______________________________________________________

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

>

>

>

>

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and Marie,

Are you going to write up a document on what your research has found and do

a summery??????

.

Re: Jimmy goes to Dr!!!!

> Hello Sally,

>

> explained this reasoning a while back on a post. There may have been

> cases of beign tumors being malignant after Gamma Knife and since GK is

used

> around the world, the statistics of tumors turning malignant is probably

> just .01% or something.

>

> , please correct me if I'm wrong =P

>

> Thanks,

>

> Mark

>

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

> From: GospelBlessings@...

>

>

> When I asked my doctor about the Gamma Knife becoming cancerous he told me

> that there was a very small chance.

> ______________________________________________________

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

>

>

>

>

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and Mark,

I think that MS Drs are good and not so good.... but there is one thing that

GK -FSR has over MS and that is I have never heard of a GK or FSR patient

contracting " Golden Staf " or bed sores or any of those other type of

hospital related problems. Have you.

So I wonder how many people who have had MS have had hospital related post

OP problems that has caused extra distress of the patient. Makes

RadioSurgery/Therapy a little more safe do you think? In answer to the Sally

if you want to go the percentage way. ... Malignancy from GK or FSR is about

98% that is what has been quoted to me by a NS who believes he is GOD of NS.

..

Re: Jimmy goes to Dr!!!!

>

> Hello Sally,

>

> explained this reasoning a while back on a post. There may have been

> cases of beign tumors being malignant after Gamma Knife and since GK is

used

> around the world, the statistics of tumors turning malignant is probably

> just .01% or something.

>

> , please correct me if I'm wrong =P

>

> Thanks,

>

> Mark

>

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

> From: GospelBlessings@...

>

>

> When I asked my doctor about the Gamma Knife becoming cancerous he told me

> that there was a very small chance.

> ______________________________________________________

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

>

>

>

>

>

>

>

>

>

>

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Guest guest

and Mark,

I think that MS Drs are good and not so good.... but there is one thing that

GK -FSR has over MS and that is I have never heard of a GK or FSR patient

contracting " Golden Staf " or bed sores or any of those other type of

hospital related problems. Have you.

So I wonder how many people who have had MS have had hospital related post

OP problems that has caused extra distress of the patient. Makes

RadioSurgery/Therapy a little more safe do you think? In answer to the Sally

if you want to go the percentage way. ... Malignancy from GK or FSR is about

98% that is what has been quoted to me by a NS who believes he is GOD of NS.

..

Re: Jimmy goes to Dr!!!!

>

> Hello Sally,

>

> explained this reasoning a while back on a post. There may have been

> cases of beign tumors being malignant after Gamma Knife and since GK is

used

> around the world, the statistics of tumors turning malignant is probably

> just .01% or something.

>

> , please correct me if I'm wrong =P

>

> Thanks,

>

> Mark

>

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

> From: GospelBlessings@...

>

>

> When I asked my doctor about the Gamma Knife becoming cancerous he told me

> that there was a very small chance.

> ______________________________________________________

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

>

>

>

>

>

>

>

>

>

>

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Malignancy from GK or FSR is about 98% that is what has been quoted to me by

a NS who believes he is GOD of NS.<-------Shouldn't I be dead by now if 98%

results in Malignancy from GK and FSR? Also shouldn't the FDA(Food and Drug

Administration) or whoever if ban the use of GK and FSR if the maglignancy

rate was that high? Makes you think dosn't it?

Mark

______________________________________________________

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

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If nobody knows whether GK causes malignancy, why risk it? Brackmann has

mentioned situations where this happened but, it's very unpredictable. I

don't see the point in trying this if it even has the slightest risk

percentage.

-

Re: Jimmy goes to Dr!!!!

>

>Hello Sally,

>

> explained this reasoning a while back on a post. There may have been

>cases of beign tumors being malignant after Gamma Knife and since GK is

used

>around the world, the statistics of tumors turning malignant is probably

>just .01% or something.

>

>, please correct me if I'm wrong =P

>

>Thanks,

>

>Mark

>

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

>From: GospelBlessings@...

>

>

>When I asked my doctor about the Gamma Knife becoming cancerous he told me

>that there was a very small chance.

>______________________________________________________

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

>

>

>

>

>

>

>

>

>

>

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Guest guest

Ha Ha

Mark I sure messed up there I was trying to point out that the chance of

malignancy was two percent, because no doctor of any sort will give 100%

guarantee of success and usually say that a they have a success rate of

98%..

Sorry about that. As you know I lean toward FSR for small VS tumours where

hearing is trying to be preserved.

.

Re: Jimmy goes to Dr!!!!

> Malignancy from GK or FSR is about 98% that is what has been quoted to me

by

> a NS who believes he is GOD of NS.<-------Shouldn't I be dead by now if

98%

> results in Malignancy from GK and FSR? Also shouldn't the FDA(Food and

Drug

> Administration) or whoever if ban the use of GK and FSR if the maglignancy

> rate was that high? Makes you think dosn't it?

>

> Mark

>

> ______________________________________________________

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

>

>

>

>

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