Re: Why?

[Guest guest]

hmmmmm...I actually think it's better NOT to know where tumors are, yah this

knee one was a suprise but very easily diagnosed.....

why is it better not to know?? my opinion, when people know, like suppose

theres a tumor in spine thats not causing problems, yet you don't know what will

happen if its starts growing, all of the sudden you start obsessing about every

little twitch, fart and sneeze thing its an NF2 thing....get what I mean???

I have never had surgery on a tumor that wasn't causing some type of

problem...and honestly have really never come out worse than I went in (ANs

being that exception)

this is just my opinions and my findings from the many people I know....I do

know what spine and head tumors I have and what visible ones on my body, but

thats good enough for me the monsters can stay hiding...eh

hugs

Caren

[Guest guest]

OK. I've already been attacked (off the crew). Folks, I never said I

wanted or didn't want to know in my post, I was simply " asking " the

question. It's a question I'm just very interested in hearing the answers

to. If you'd prefer to email me personally, my address is

jennette@...

.....and if you must know... yes, I'd like to know where they are. But

sometimes knowing can be very stressful, and some crewbies have claimed

stress produces tumor growth. I find the question interesting. I'm just

curious.

Jennette

[Guest guest]

Hi Jennette!

I think sometimes it is scarier NOT to know, than to know. People get

a new sympton and right away fret about whether there is a new tumor or

not. At least, if the doctor knows where they are, he can sometimes go

from there to see if this is where the sympton is coming from. A couple

of mine are being watched, for they are in BAAAAAD spots. If we didn't

know about them, what's to say that something awful wouldn't happen and

then it is too late to operate or do anything about. In otherwards, leave

it alone, until the very last hour. If we don't watch them and know about

new ones, they could cause havoc. My doctor won't take out any that aren't

causing major problems, which decreases my surgeries.

Am I making sense?? Just took some nite nite meds! LOL!!

Carol

Jennette Braaten wrote:

OK, here goes... "Why" exactly do we need

to know where all these tumors we

have are "IF" they are not even causing problems yet?

[Guest guest]

A fellow devotee of Professor Sumner - " Why is it so "

Short answer I prefer to know as I have to many other " aches and pains "

caused by a misspent youth and the building trade.

Who has fallen through to many roofs - off bridges - sport and the list goes

on....

.

Re: Why?

> OK. I've already been attacked (off the crew). Folks, I never said I

> wanted or didn't want to know in my post, I was simply " asking " the

> question. It's a question I'm just very interested in hearing the

answers

> to. If you'd prefer to email me personally, my address is

> jennette@...

>

> ....and if you must know... yes, I'd like to know where they are. But

> sometimes knowing can be very stressful, and some crewbies have claimed

> stress produces tumor growth. I find the question interesting. I'm just

> curious.

>

> Jennette

>

>

>

>

>

>

[Guest guest]

I think its a good question Jennette and one that we have to confront..

The party line is that if you catch them while they are small they

are easier to deal with.....and If you just let them grow they will eventually

kill you.

(my husband) tested this out in the 80's. He decided to

leave his first AN in..... till it grew to the size of a baseball.

One day the tumour decided to roll and he became hydrocephalic and his

then wife found him passed out on the kitchen floor. They at this

point without his consent rushed him to surgery where he had a Near Death

Experience ( I guess that was a bonus)...but he did survive.

Whether it was the right thing....we may never know.

Personally...there is a small voice in my head that says "surgery

is barbaric". I think that for NF2 where we are dealing with tumors

that are likely to recur...the options of the various forms of sterieotactic

radiotherapy or radiosurgery are far more promising....and just plain make

more sense. We don't really have to remove these things.....just

slow them down or stop them from growing.

Preeti

Jennette Braaten wrote:

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

From: Henrion

Really! very scary, I'd like a full scan to tell you the truth!

===============

I'm just curious here, . Please don't get mad, this isn't

aimed at

you, but you did provide the opportunity to ask a question that's been

on my

mind for years.) I might be taking a risk by asking

this, but I can't

be the only one on here a little curious. The parents of

kids with nf2

recently had a thread about this... this is a question for the

adult nf2ers

themse3lves.

OK, here goes... "Why" exactly do we need to know where all these

tumors we

have are "IF" they are not even causing problems yet? Marcus,

didnt you

find a spinal tumor as a kid, yet it has never bothered you?

How many years

have you "known" it was there? How many of us have gone under

the knife for

a tumor that wasn't even bothering us, only to come out much much worse

off

then we were before?

Seeing if I can spark a little dialoge.....

Jennette

[Guest guest]

You probably have not experience cervical spinal tumors, I dont know many

people who have had these cause no problems, its hard to be dormant

when pressing on critical nerves in that area.. My arms are near paralyzed and

legs are very weak, other symptoms I will not mention. I'm sure many tumors

dont cause problems, i have some of those too! but what sparked this was

jimmy's quandry about C-5, he says he has never had spinal surgery but i know

he (like almost all of us) is weakened and that is from spinal tumors. For me,

its been the tumors that have weakened me, not the surgeries. And for me, yeah,

Id like to know of every growth that shouldnt be there thats in my body.

Ignorance is not bliss, you dont have to remove them but id like to know they

are there.

> Hmm my Doctor discourages tumor hunting fests. He will look for them if I

insist or

complain about a problem, but otherwise feels it's a waste of pain, time,

money, anxiety

to go looking for tumors that aren't causing any problems and could likely stay

dormant

forever

>

> And I'd certainly not have a tumor removed just because " it's there "

>

> With the exception of some ugly surface tumors I had removed from my face,

but they

weren't anything but cosmetic

>

> Pete

>

>

> On Wed, May 16, 2001 at 05:30:58PM -0400, Jennette Braaten wrote:

> >

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

> > From: Henrion

> >

> > Really! very scary, I'd like a full scan to tell you the truth!

> > ===============

> >

> > I'm just curious here, . Please don't get mad, this isn't aimed at

> > you, but you did provide the opportunity to ask a question that's been on

my

> > mind for years.) I might be taking a risk by asking this, but I can't

> > be the only one on here a little curious. The parents of kids with nf2

> > recently had a thread about this... this is a question for the adult

nf2ers

> > themse3lves.

> >

> > OK, here goes... " Why " exactly do we need to know where all these tumors

we

> > have are " IF " they are not even causing problems yet? Marcus, didnt you

> > find a spinal tumor as a kid, yet it has never bothered you? How many

years

> > have you " known " it was there? How many of us have gone under the knife

for

> > a tumor that wasn't even bothering us, only to come out much much worse off

> > then we were before?

> >

> > Seeing if I can spark a little dialoge.....

> >

> > Jennette

> >

> >

> >

> >

> >

[Guest guest]

Hmm my Doctor discourages tumor hunting fests. He will look for them if I insist

or complain about a problem, but otherwise feels it's a waste of pain, time,

money, anxiety to go looking for tumors that aren't causing any problems and

could likely stay dormant forever

And I'd certainly not have a tumor removed just because " it's there "

With the exception of some ugly surface tumors I had removed from my face, but

they weren't anything but cosmetic

Pete

On Wed, May 16, 2001 at 05:30:58PM -0400, Jennette Braaten wrote:

>

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

> From: Henrion

>

> Really! very scary, I'd like a full scan to tell you the truth!

> ===============

>

> I'm just curious here, . Please don't get mad, this isn't aimed at

> you, but you did provide the opportunity to ask a question that's been on my

> mind for years.) I might be taking a risk by asking this, but I can't

> be the only one on here a little curious. The parents of kids with nf2

> recently had a thread about this... this is a question for the adult nf2ers

> themse3lves.

>

> OK, here goes... " Why " exactly do we need to know where all these tumors we

> have are " IF " they are not even causing problems yet? Marcus, didnt you

> find a spinal tumor as a kid, yet it has never bothered you? How many years

> have you " known " it was there? How many of us have gone under the knife for

> a tumor that wasn't even bothering us, only to come out much much worse off

> then we were before?

>

> Seeing if I can spark a little dialoge.....

>

> Jennette

>

>

>

>

>

[Guest guest]

Jennette,

Yes it is an interesting question. It just goes to show you that everyone

deals with things differently. All the way from blood test to no blood

test, from knowing someone has NF2 to not knowing, early intervention to

watch and wait, surgery vs. radiation. As someone new to all of this I wish

it were all more clear cut as to the right thing to do, but it is different

for everybody. I personally like to know everything and I want to know if

there are tumors. Then we can watch for tumor growth or intervene early in

the case of ANs if we feel that is the right road for us. Even if I didn't

know about a tumor, though, I will always wonder every time my son has a

headache or other aches and pains or his neck hurts since neck surgery if it

is NF2 related. That's the joy of this disease you just got to learn to

live with it whatever way works for you.

I hope we can always have dialogue on the crew without getting attacked. I

used to go on the Babycenter boards and the women would get vicious as to

how to raise your children. I hope we don't ever get that way. Now it's

time to go to my little NF2ers award ceremony at school.

Take care and God Bless us all,

Re: Why?

>

>

> > OK. I've already been attacked (off the crew). Folks, I never said I

> > wanted or didn't want to know in my post, I was simply " asking " the

> > question. It's a question I'm just very interested in hearing the

> answers

> > to. If you'd prefer to email me personally, my address is

> > jennette@...

> >

> > ....and if you must know... yes, I'd like to know where they are. But

> > sometimes knowing can be very stressful, and some crewbies have claimed

> > stress produces tumor growth. I find the question interesting. I'm

just

> > curious.

> >

> > Jennette

> >

> >

> >

> >

> >

> >

[Guest guest]

Jennette...As the cowardly lion would have said to your attacker..PUT 'EM

UP..PUT 'EM UP!!!!(then scare himself by pulling his own tail!! LOL)

Don't let anyone get to ya...you have a right to your opinion.

Hugs, Carol

Jennette Braaten wrote:

> OK. I've already been attacked (off the crew). Folks, I never said I

> wanted or didn't want to know in my post, I was simply " asking " the

> question.

[Guest guest]

HAH, Stella's (my daughter) favourite film, I have seen this video zillions

of times.......our dog is called TOTO.

But our Toto is a black lab/border collie cross .......and she was a

reject/freebie from pet-shop, because they said she would be dead within 3

months.......3 years later she lives in bucolic bliss with her best friends:

Puss-Puss (tabby, best mouser, sleeps with Toto), Lucky (Louis' duck ),

Birdie (cockatiel that flies around house, often riding on Toto's back, and

preening her) many many tropical fish, including Louis' recent additions of

two 's (piranha-related, which we found out the hard way) and a

two-legged ancient tortoise that Stella brought home......now you all

needed to know that, didn't you?

It is breakfast time here and as I look out the window I watch a duck,

cat, dog, sometimes even the tortoise all front up to be fed on the back

verandah in a line. At the same time I can hear a near-death squabble

between Stella and Louis going on down the other end of the house.....Now

I often wonder how I can get it so right with the animals who live in

complete harmony, without cages or restrictions to their wanderings or fear

of predators, and not be able to achieve this harmony with my own

children????????Better go sort the problem.

on 18/5/01 6:52 AM, Carol Winarski at horizons@... wrote:

> Jennette...As the cowardly lion would have said to your attacker..PUT 'EM

> UP..PUT 'EM UP!!!!(then scare himself by pulling his own tail!! LOL)

> Don't let anyone get to ya...you have a right to your opinion.

> Hugs, Carol

>

> Jennette Braaten wrote:

>

>> OK. I've already been attacked (off the crew). Folks, I never said I

>> wanted or didn't want to know in my post, I was simply " asking " the

>> question.

>

>

>

>

>

[Guest guest]

As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small.

Dianne

[Guest guest]

I think this is a very good question cauz I am a nurse. Often times I

am not fiven pre op instructions because :yopu are a nurse and know them

any way " . I am still a patient and scared as shit. I sometimes think

that knowing is more scarer than not knowing, but I still want to know

the whole story. Go sigure.

Joanie

[Guest guest]

Dianne,

My daughter, Anne, has been said to have schwannomatosis as well. But the

gurus of these disorders are never sure. It has evolved from NF1 to NF2 and

now perhaps schwannotomatosis. Ultimately, there are tumors everywhere

causing her many problems which we deal with as needed. Yes, we must monitor

our own health more astutely than the doctors. There is nothing more

important because doctors are very busy and fragmented. Anne has had 11

surgeries, all life threatening, but we do not chase surgery because of its

debilitating and down side. She right now lives with a pancreatic tumor that

is the size of a soccer ball because removing it is just too risky. In fact,

even when it was small, it was too risky. We keep praying for some medical

intervention. It is a dream, but that is all we have. Good luck to you.

Vicki

[Guest guest]

I'm a little confused; you say you have NF2, but then you say you are "thankful it is not a heriditary condition: - one of those statements has to be incorrect; if you DO have NF2, it IS heridatary (I know I spelled that wrong) whether you have AN now or not?? Am I correct crew? Marie

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

Dianne,

Can't schwannomatosis be hereditary, too? I guess not if Mia MacCollin told you it wasn't. I hope it all works out well for you.

Re: Why?

As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am

[Guest guest]

I caught that, too, Marie, but my thinking is that if you have NF2, and it's not hereditary, that means you've acquired NF2 spontaneously

BUT you can still pass it on to your offspring (whatever that may be Greg ) so regardless its still considered hereditary...I think the person who said wasn't hereditary in their case, said they didn't have NF2 as it turns out but had schwannomatosis (thats how I read/understood it)

as quoted from mail: "As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis"

[Guest guest]

Alright, but now I wonder what the major differences and similarities are between schwannomatosis and neurofibromatosis???

NF is 2 letters longer *grin* seriously I have no idea...anyone?? anyone??

[Guest guest]

Vicki - just curious - but have you ever considered Fractionated Radiation?

Or is that not an option. Since this is all new to me I am not sure why more people don't choose radiation rather than surgery. Dianne

[Guest guest]

I am sorry I may have not said what I wanted to say the right way. I was diagnosed with NF2 about 5 weeks ago. I went to Boston and saw Mia MacCollin and she changed the diagnosis to Schwannomatosis because the Schwannoma I have is Not on the Acoustic Nerve. Sorry if I confused anyone. But I am now researching this condition. I think it is very similar to NF2 but it is not herediatry according to Mia M. Dianne

[Guest guest]

Since this is all new to me I am not sure why more people don't choose radiation rather than surgery. Dianne

can I jump in again?? Im bored today can anyone tell?? In MY case I choose surgery over radiation for a few reasons....my first surgery was ohh 11 years ago....at the time radiation wasn't so great...since then I've had uhmm 26 other surgeries, I'll guess about 15 of those were major life threatening, and Ive always had the same Dr. and trust him with my life, for me to even consider radiation is VERY scary..I'm comfortable with my care so why change?? Also, from my understanding, if you radiate theres no gaurentee it will work and supposing it doesn't work, and therefore needing surgery anyway, the surgery becomes more risky because of scar tissue left from radiation. Now, again, this is just ME, and Im not against radiation, its just not my personal choice.

Bored Caren

[Guest guest]

I caught that, too, Marie, but my thinking is that if you have NF2, and it's not hereditary, that means you've acquired NF2 spontaneously. In other words, my predecessors, whether they be human, dog, cat , wolf or barracuda, did not pass down to me NF2. For me and perhaps what Diane is saying, is that she developed NF2 spontaneously. Just my guess--

Greg

I'm a little confused; you say you have NF2, but then you say you are "thankful it is not a heriditary condition: - one of those statements has to be incorrect; if you DO have NF2, it IS heridatary (I know I spelled that wrong) whether you have AN now or not?? Am I correct crew? Marie

Re: Why?As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis - do any of you know much about that? I was very thankful this is not a hereditary condition. I have 2 tumors to deal with and I am definitely having Fractionated Stereotactic Radiosurgery on the one in the brain and I hope to have it on the one in my neck. I want to know if I have ANY tumors - no matter how small - so I can make decisions on how to deal with them before I become symptomatic. I think we need to seek treatments that are right for us, when they are right for us. I believe we need to be very involved in our health care and work closely with our doctors. The tumor in my brain is 1.5 cm. I was told I could wait 6 months and have another MRI - I am not going to do that. I am already having symptoms - I don't want to have permanent damage. I, for one, want to take care of these while they are small. Dianne

[Guest guest]

Okay.. Here's my two cents, I'm tired and unemployed and cross eyed from job

hunting .. but here's how I read it.

She was originally diagnoised with NF2

She has been given a new diagnosis of Schwannomatosis

from talking with Mia McColling in the past I know that two have many

similaraties. (No I don't have it, it just came up when we discussing my tumors

over tea and crumpets )

Schwannomatosis is not carried on a chromosome that is transferred to your

offspring

Pete

On Fri, May 18, 2001 at 04:42:52PM -0400, CarsonCutey@... wrote:

> In a message dated 5/18/01 4:26:26 PM Eastern Daylight Time,

> GREGIERY@... writes:

>

>

> >

> > I caught that, too, Marie, but my thinking is that if you have NF2, and

> > it's not hereditary, that means you've acquired NF2 spontaneously

> >

>

> BUT you can still pass it on to your offspring (whatever that may be Greg

> ) so regardless its still considered hereditary...I think the person who

> said wasn't hereditary in their case, said they didn't have NF2 as it turns

> out but had schwannomatosis (thats how I read/understood it)

>

> as quoted from mail: " As you know I was recently diagnosed with NF2. I went

> to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor

> is actually on my Trigeminal nerve and not the acoustic nerve and said my

> diagnosis is actually Schwannomatosis "

--

Brayman ICQ # 66709621

" The Great part about being deaf is, it's easy to ignore all the jerks "

[Guest guest]

NF2 is classified as a herediatary disorder even though it may never be pass along to one's offspring? I see, the potential to pass it on is there, thus the reasoning that NF2 is hereditary? Alright, but now I wonder what the major differences and similarities are between schwannomatosis and neurofibromatosis???

Thanks for the correction, Caren

BUT you can still pass it on to your offspring (whatever that may be Greg ) so regardless its still considered hereditary...I think the person who said wasn't hereditary in their case, said they didn't have NF2 as it turns out but had schwannomatosis (thats how I read/understood it) as quoted from mail: "As you know I was recently diagnosed with NF2. I went to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor is actually on my Trigeminal nerve and not the acoustic nerve and said my diagnosis is actually Schwannomatosis"

[Guest guest]

Thats one of my big fears about radiation -- it not doing the job and making

surgery impossible or much more risky. I had a friend who this happened

to and it was very disturbing. But, I guess it would depend on the tumor

and location, as usual.

CarsonCutey@... wrote:

In a message

dated 5/18/01 6:38:46 PM Eastern Daylight Time, DiSpads@...

writes:

Since

this is all new to me I am not sure why more

people don't choose radiation

rather than surgery. Dianne

can I jump in again??

Im bored today can anyone tell?? In MY case I choose

surgery over radiation for

a few reasons....my first surgery was ohh 11 years

ago....at the time radiation

wasn't so great...since then I've had uhmm 26

other surgeries, I'll guess

about 15 of those were major life threatening,

and Ive always had the same

Dr. and trust him with my life, for me to even

consider radiation is VERY

scary..I'm comfortable with my care so why

change?? Also, from

my understanding, if you radiate theres no gaurentee it

will work and supposing

it doesn't work, and therefore needing surgery

anyway, the surgery becomes

more risky because of scar tissue left from

radiation.

Now, again, this is just ME, and Im not against radiation, its

just not my personal choice.

Bored Caren

[Guest guest]

This disease sounds a tad better, Can we trade if we want to? :-)

Pete Brayman wrote:

> Okay.. Here's my two cents, I'm tired and unemployed and cross eyed from job

hunting .. but here's how I read it.

>

> She was originally diagnoised with NF2

>

> She has been given a new diagnosis of Schwannomatosis

>

> from talking with Mia McColling in the past I know that two have many

similaraties. (No I don't have it, it just came up when we discussing my tumors

over tea and crumpets )

>

> Schwannomatosis is not carried on a chromosome that is transferred to your

offspring

>

> Pete

>

> On Fri, May 18, 2001 at 04:42:52PM -0400, CarsonCutey@... wrote:

> > In a message dated 5/18/01 4:26:26 PM Eastern Daylight Time,

> > GREGIERY@... writes:

> >

> >

> > >

> > > I caught that, too, Marie, but my thinking is that if you have NF2, and

> > > it's not hereditary, that means you've acquired NF2 spontaneously

> > >

> >

> > BUT you can still pass it on to your offspring (whatever that may be Greg

> > ) so regardless its still considered hereditary...I think the person who

> > said wasn't hereditary in their case, said they didn't have NF2 as it turns

> > out but had schwannomatosis (thats how I read/understood it)

> >

> > as quoted from mail: " As you know I was recently diagnosed with NF2. I went

> > to Boston - Mass General - and saw Mia MacCollin. She told me that my tumor

> > is actually on my Trigeminal nerve and not the acoustic nerve and said my

> > diagnosis is actually Schwannomatosis "

>

> --

> Brayman ICQ # 66709621

>

> " The Great part about being deaf is, it's easy to ignore all the jerks "

>

>

>

>