Re: my radiation tx program

[Guest guest]

Hi Barbara,

Yes, the " conventional " tag she used is the basic machine all others such as

G/K and Peacock ect are like brand names.

FSR means that your treatment is fractioned, and that there is more than

one treatment in your case you are having exactly the same treatment as I

had with exactly the same total number Rads (CMs) I had.

Now if you have to put a mouthguard type ring fixing, then your are having

the same as what I had.

I can't remember, do you have hearing????

Cheers,

. How found FSR a breeze!!!!!!!

my radiation tx program

> Crew / -

>

> My doc says the term " rads " is now out of date. They talk of " CMs " -

> centimeters now! (Sounds weird!)

>

> So my total dosage is 5040 CMs - 5 days a week for 5 weeks. (My # may be

off

> a little - I will check.) Also, I now realize it's not 6 NF2 but 10, that

> she's done. She is using a Linac machine and refers to my FRS as

> " conventional " - a term I never heard used on the crew!

>

> When I consulted with at Hopkins he thought her dosage

was

> excessive.

>

> My attitude about that is influenced by neurologist who says that

essentially

> that there is not enough info yet in for any one person to really have the

> answer so that it doesn't pay to obsess for too long about comparing one

> approach with another.

>

> Barbara B.

>

>

>

[Guest guest]

Hi Barbara,

Yes, the " conventional " tag she used is the basic machine all others such as

G/K and Peacock ect are like brand names.

FSR means that your treatment is fractioned, and that there is more than

one treatment in your case you are having exactly the same treatment as I

had with exactly the same total number Rads (CMs) I had.

Now if you have to put a mouthguard type ring fixing, then your are having

the same as what I had.

I can't remember, do you have hearing????

Cheers,

. How found FSR a breeze!!!!!!!

my radiation tx program

> Crew / -

>

> My doc says the term " rads " is now out of date. They talk of " CMs " -

> centimeters now! (Sounds weird!)

>

> So my total dosage is 5040 CMs - 5 days a week for 5 weeks. (My # may be

off

> a little - I will check.) Also, I now realize it's not 6 NF2 but 10, that

> she's done. She is using a Linac machine and refers to my FRS as

> " conventional " - a term I never heard used on the crew!

>

> When I consulted with at Hopkins he thought her dosage

was

> excessive.

>

> My attitude about that is influenced by neurologist who says that

essentially

> that there is not enough info yet in for any one person to really have the

> answer so that it doesn't pay to obsess for too long about comparing one

> approach with another.

>

> Barbara B.

>

>

>

[Guest guest]

Barbara,

I believe it was cGy that they talked about. Gray is the international

standard unit for radiation dose. rad is an old unit. It is a sort like a

yard vs a meter. 1 rad = 1 cGy, and 1 Gy = 100 cGy.

my radiation tx program

>Crew / -

>

>My doc says the term " rads " is now out of date. They talk of " CMs " -

>centimeters now! (Sounds weird!)

>

>So my total dosage is 5040 CMs - 5 days a week for 5 weeks. (My # may be

off

>a little - I will check.) Also, I now realize it's not 6 NF2 but 10, that

>she's done. She is using a Linac machine and refers to my FRS as

> " conventional " - a term I never heard used on the crew!

>

>When I consulted with at Hopkins he thought her dosage was

>excessive.

>

>My attitude about that is influenced by neurologist who says that

essentially

>that there is not enough info yet in for any one person to really have the

>answer so that it doesn't pay to obsess for too long about comparing one

>approach with another.

>

>Barbara B.

>

>

>

[Guest guest]

I know this was intended for Barbara but thanks for the update.....

.

my radiation tx program

>

>

> >Crew / -

> >

> >My doc says the term " rads " is now out of date. They talk of " CMs " -

> >centimeters now! (Sounds weird!)

> >

> >So my total dosage is 5040 CMs - 5 days a week for 5 weeks. (My # may be

> off

> >a little - I will check.) Also, I now realize it's not 6 NF2 but 10,

that

> >she's done. She is using a Linac machine and refers to my FRS as

> > " conventional " - a term I never heard used on the crew!

> >

> >When I consulted with at Hopkins he thought her dosage

was

> >excessive.

> >

> >My attitude about that is influenced by neurologist who says that

> essentially

> >that there is not enough info yet in for any one person to really have

the

> >answer so that it doesn't pay to obsess for too long about comparing one

> >approach with another.

> >

> >Barbara B.

[Guest guest]

I know this was intended for Barbara but thanks for the update.....

.

my radiation tx program

>

>

> >Crew / -

> >

> >My doc says the term " rads " is now out of date. They talk of " CMs " -

> >centimeters now! (Sounds weird!)

> >

> >So my total dosage is 5040 CMs - 5 days a week for 5 weeks. (My # may be

> off

> >a little - I will check.) Also, I now realize it's not 6 NF2 but 10,

that

> >she's done. She is using a Linac machine and refers to my FRS as

> > " conventional " - a term I never heard used on the crew!

> >

> >When I consulted with at Hopkins he thought her dosage

was

> >excessive.

> >

> >My attitude about that is influenced by neurologist who says that

> essentially

> >that there is not enough info yet in for any one person to really have

the

> >answer so that it doesn't pay to obsess for too long about comparing one

> >approach with another.

> >

> >Barbara B.

[Guest guest]

Guys,

Yes it does pay to obsess about the radiation numbers --- we on the Crew need

to research this. I for one are off this summer (most somewhat) and will be

researching NF. I will be researching the main NF issues i.e. neuros, GK,

FSR, Microsurgery, ABI, and anything else that comes my way.

If you guys have suggestions for me let me know.

I have found to leaving NF up in the air and believe there is nothing left to

do but wait is a deadly mistake. I know others on the Crew do not believe in

this sort of mentality either.

Love, Sally

[Guest guest]

I want the results on my desk in three months. Now stop wasting time and get

to work you slacko you. ~|) he he he he he he

...

Re: my radiation tx program

> Guys,

>

> Yes it does pay to obsess about the radiation numbers --- we on the Crew

need

> to research this. I for one are off this summer (most somewhat) and will

be

> researching NF. I will be researching the main NF issues i.e. neuros, GK,

> FSR, Microsurgery, ABI, and anything else that comes my way.

>

> If you guys have suggestions for me let me know.

>

> I have found to leaving NF up in the air and believe there is nothing left

to

> do but wait is a deadly mistake. I know others on the Crew do not believe

in

> this sort of mentality either.

>

> Love, Sally

>

>

>

>

[Guest guest]

Dear Sally,

I know you are correct in saying that some of the crew feel very strongly on

taking action against ones own treatment. Let me offer you another

perspective which will throw you a curve.

First of all, let me start by saying that there is no set protocol...

Let me repeat.......NO SET PROTOCOL

for the treatment of NF2. I had dedicated my entire winter (October through

April) absorbed in research and in search of the perfect answer and

treatment. THERE IS NONE.

It is purely a personal decision and choice that is going to be weighed

based upon the quality of life one wishes to live and the risks involved

with treatment to attain that lifestyle. No one MUST do anything! It is up

to the individual and what is most important to you. Do not allow yourself

to be the victim. You are the consumer looking for the best product there

is to offer, so you call the shots.

As for my case, yes I have chosen to wait. Have I had to suffer a terrible

outcome? ABSOLUTELY NOT! The way I see it, I have bought myself some time

doing what I love to do and it has been great! What is more is that I enjoy

my activities even more now than I did before because I have a deeper

appreciation that God has given me such a gift.

Had I jumped into treatment right away and taken the Gamma Knife like they

had recommended or even opted for surgery, I might not enjoy that quality of

life I have now. I was definitely told that the Gamma Knife would

eventually cause me to go deaf within a year. I did not like those odds so

I chose to do some further digging on my own.

So am I deaf now you would wonder? Hard of Hearing....yes, but deaf....no.

I have pretty much lost all my hearing in my left ear which was never

recoverable through any treatment anyhow because the speech recognition was

horrible. The hearing in the right seems to have maintained what it was

when I was first diagnosed in July so I use a hearing aid for assistance. I

can still hear on some phones without the hearing aid and understand some pe

ople. However, there is a percentage that speak too softly or try to speak

to me from 10 feet away and that is where my hearing aid really comes in

handy.

How have I been affected physically? Fortunately I am the same person as

always who enjoys scuba diving (depths over 100, in current, in cold water

and at night), rollerblading (looking forward to the annual 26 mile super

skate here in august), hiking up mountains (had fun around 6,000 to 7,000

feet a weekend ago), waterskiing, downhill skiing, and an occasional run

when I am motivated enough to exert myself (laugh).

To me all these things were more important than needing to hear and I was

willing to make that sacrifice if I had too. The risks and the facts were

too great for me in regards to surgery and Gamma Knife. I am still a very

good candidate for FSR (fractionated stereotactic radiotherapy or also

called radiosurgery). My tumors are still pretty small and have not grown

much. My left ear has a 15mm VS (vestibular schwanoma) and my right ear has

an 8 mm VS. However, I have a previous history of cancer from when I was 21

years old and need to weigh the decision for FSR very carefully. All the

facts are still not on the table yet in regards to the long terms results

and the slight chance of malignancy. Seeing that they do not know the cause

of my cancer the theory exists that I lack an oncogene all together. In

which case, I could fall into that 1 % chance everyone is talking about. I

am still pretty confident about the treatment however and feel that the risk

of malignancy is pretty minimal based on what results they have had from

malignancy occurring after Gamma Knife treatments.

I have to say that this has been by far the most difficult decision I have

had to make in life so far (I am 28 right now). As I see it, I have been

given a window of time in which there is hope (chance of a different

treatment or the results I would like to see on FSR). I am not at all in

denial and have taken a great deal of time to come to terms and accept what

I have. I have to say I feel pretty darn fortunate. Believe it or not I

personally know a couple people who have a worse fate than any of us here

with NF2 and there is even less known about their diseases (were talking

only about 10 cases worldwide). Of course I do have small spats when I feel

sorry for myself but then God always awakens me to the light of the

situation.

So far now, I patiently wait and take the opportunity to enjoy what life I

have now. J Fox is a perfect example to follow. I have an

incredible admiration for him and find Parkinson's Disease (what he has) a

much crueler fate to accept. However, he is on the ball! Of course he took

a great deal of time as did I to do all the research and learn to come to

terms with what he has. Then one day he just got tired of dwelling over

what can happen to him and decided to live in the here and now. He stated.

" That is not the person I am today. I can still do things and so that is

how I should live. What am I gonna do......buy myself a wheel chair and sit

around waiting for it to happen? " He has found what is important to him and

made an active effort to make the best of the situation.

Well I think that is enough said. I do want to make clear that just because

I have chosen to wait does not mean that is the best decision for you or

anyone else. It is what fits my circumstance and something I feel I can

afford to do. Some people may have something critical such as a tumor near

the brain stem in which immediate action would be advisable. However, what

is best is still up to the patient (that is who calls the shots). I merely

wanted to show you the flip side of the coin which you may have not heard

yet.

Good luck in your mission and search!

- Becky )

[Guest guest]

Hi Becky!

" WOW " is a word that best summarizes your email to Sally! You're right, we

shouldn't jump the gun with the treatments concerning NF2 and great advice

of Carpe Diem.

Mark

BTW, are you single? (heh heh, just had to ask)) =)

----Original Message Follows----

Dear Sally,

I know you are correct in saying that some of the crew feel very strongly on

taking action against ones own treatment. Let me offer you another

perspective which will throw you a curve.

First of all, let me start by saying that there is no set protocol...

Let me repeat.......NO SET PROTOCOL

for the treatment of NF2. I had dedicated my entire winter (October through

April) absorbed in research and in search of the perfect answer and

treatment. THERE IS NONE.

It is purely a personal decision and choice that is going to be weighed

based upon the quality of life one wishes to live and the risks involved

with treatment to attain that lifestyle. No one MUST do anything! It is up

to the individual and what is most important to you. Do not allow yourself

to be the victim. You are the consumer looking for the best product there

is to offer, so you call the shots.

As for my case, yes I have chosen to wait. Have I had to suffer a terrible

outcome? ABSOLUTELY NOT! The way I see it, I have bought myself some time

doing what I love to do and it has been great! What is more is that I enjoy

my activities even more now than I did before because I have a deeper

appreciation that God has given me such a gift.

Had I jumped into treatment right away and taken the Gamma Knife like they

had recommended or even opted for surgery, I might not enjoy that quality of

life I have now. I was definitely told that the Gamma Knife would

eventually cause me to go deaf within a year. I did not like those odds so

I chose to do some further digging on my own.

So am I deaf now you would wonder? Hard of Hearing....yes, but deaf....no.

I have pretty much lost all my hearing in my left ear which was never

recoverable through any treatment anyhow because the speech recognition was

horrible. The hearing in the right seems to have maintained what it was

when I was first diagnosed in July so I use a hearing aid for assistance. I

can still hear on some phones without the hearing aid and understand some pe

ople. However, there is a percentage that speak too softly or try to speak

to me from 10 feet away and that is where my hearing aid really comes in

handy.

How have I been affected physically? Fortunately I am the same person as

always who enjoys scuba diving (depths over 100, in current, in cold water

and at night), rollerblading (looking forward to the annual 26 mile super

skate here in august), hiking up mountains (had fun around 6,000 to 7,000

feet a weekend ago), waterskiing, downhill skiing, and an occasional run

when I am motivated enough to exert myself (laugh).

To me all these things were more important than needing to hear and I was

willing to make that sacrifice if I had too. The risks and the facts were

too great for me in regards to surgery and Gamma Knife. I am still a very

good candidate for FSR (fractionated stereotactic radiotherapy or also

called radiosurgery). My tumors are still pretty small and have not grown

much. My left ear has a 15mm VS (vestibular schwanoma) and my right ear has

an 8 mm VS. However, I have a previous history of cancer from when I was 21

years old and need to weigh the decision for FSR very carefully. All the

facts are still not on the table yet in regards to the long terms results

and the slight chance of malignancy. Seeing that they do not know the cause

of my cancer the theory exists that I lack an oncogene all together. In

which case, I could fall into that 1 % chance everyone is talking about. I

am still pretty confident about the treatment however and feel that the risk

of malignancy is pretty minimal based on what results they have had from

malignancy occurring after Gamma Knife treatments.

I have to say that this has been by far the most difficult decision I have

had to make in life so far (I am 28 right now). As I see it, I have been

given a window of time in which there is hope (chance of a different

treatment or the results I would like to see on FSR). I am not at all in

denial and have taken a great deal of time to come to terms and accept what

I have. I have to say I feel pretty darn fortunate. Believe it or not I

personally know a couple people who have a worse fate than any of us here

with NF2 and there is even less known about their diseases (were talking

only about 10 cases worldwide). Of course I do have small spats when I feel

sorry for myself but then God always awakens me to the light of the

situation.

So far now, I patiently wait and take the opportunity to enjoy what life I

have now. J Fox is a perfect example to follow. I have an

incredible admiration for him and find Parkinson's Disease (what he has) a

much crueler fate to accept. However, he is on the ball! Of course he took

a great deal of time as did I to do all the research and learn to come to

terms with what he has. Then one day he just got tired of dwelling over

what can happen to him and decided to live in the here and now. He stated.

" That is not the person I am today. I can still do things and so that is

how I should live. What am I gonna do......buy myself a wheel chair and sit

around waiting for it to happen? " He has found what is important to him and

made an active effort to make the best of the situation.

Well I think that is enough said. I do want to make clear that just because

I have chosen to wait does not mean that is the best decision for you or

anyone else. It is what fits my circumstance and something I feel I can

afford to do. Some people may have something critical such as a tumor near

the brain stem in which immediate action would be advisable. However, what

is best is still up to the patient (that is who calls the shots). I merely

wanted to show you the flip side of the coin which you may have not heard

yet.

Good luck in your mission and search!

- Becky )

________________________________________________________________________

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

[Guest guest]

Hi Becky,

Thank you so much for your feedback (I loved it).

Yes, my tumor is near the brain stem, on the 4th ventricle (pressing on the

CSF). I may be a little rusty in my terminalogy, but just as you've done,

through researching gained a calmness to the seemingly calamity of NF, that

is what I need & will attempt to do this summer.

FSR looks like a great option for me and I am seriously looking into this. I

have sent my MRI's to Staten Island but that is one of the first stops that I

will be checking into. My neuro is in Chicago, IL. ( CNN ) and they are

widely know for being good. But I would like more opinions on the FSR. You

guys have mentioned HEI (what is that)? Other options in NY, as well as in

CA.

I'm just really starting this huge quest. I believe it is all a personal

decision, and can respect who ever wants to leave NF alone. My sister also

has NF and does have MRI's I think annually, but goes on with her life and

does not stop for anything. I believe in this mentality too, but I want to

make sure that nothing tries to get by me, as I keep re-assessing my options.

The miracle hormone pills, treatments, and thus are what we all need to keep

a sharp 'eye' out for.

I loved your comments Becky and I would love to quote you in my research

article if that is alright with you? I would need your last name, address and

e-mail. Or just e-mail if you prefer so it can be a source identification. It

may or may not be published, but I am considering sending it to a medical

journal or medical publication after my professor has reviewed everything.

My personal e-mail is GospelBlessings@... if you need to contact me

further if you want to add something confidential,otherwise talking with the

Crew is sure to help others :-)))

Thank you thank you thank you,

Sally

[Guest guest]

Hi Becky,

Thank you so much for your feedback (I loved it).

Yes, my tumor is near the brain stem, on the 4th ventricle (pressing on the

CSF). I may be a little rusty in my terminalogy, but just as you've done,

through researching gained a calmness to the seemingly calamity of NF, that

is what I need & will attempt to do this summer.

FSR looks like a great option for me and I am seriously looking into this. I

have sent my MRI's to Staten Island but that is one of the first stops that I

will be checking into. My neuro is in Chicago, IL. ( CNN ) and they are

widely know for being good. But I would like more opinions on the FSR. You

guys have mentioned HEI (what is that)? Other options in NY, as well as in

CA.

I'm just really starting this huge quest. I believe it is all a personal

decision, and can respect who ever wants to leave NF alone. My sister also

has NF and does have MRI's I think annually, but goes on with her life and

does not stop for anything. I believe in this mentality too, but I want to

make sure that nothing tries to get by me, as I keep re-assessing my options.

The miracle hormone pills, treatments, and thus are what we all need to keep

a sharp 'eye' out for.

I loved your comments Becky and I would love to quote you in my research

article if that is alright with you? I would need your last name, address and

e-mail. Or just e-mail if you prefer so it can be a source identification. It

may or may not be published, but I am considering sending it to a medical

journal or medical publication after my professor has reviewed everything.

My personal e-mail is GospelBlessings@... if you need to contact me

further if you want to add something confidential,otherwise talking with the

Crew is sure to help others :-)))

Thank you thank you thank you,

Sally

[Guest guest]

Becky

<< bluediver@... >>

I'll double Mark's WOW! I thought I was dealing with all of this well! I

try so hard not to let the disease be my life, but sometimes, I just know

there is something out there, somewhere, to stop all of this, and so I keep

searching. The ru486 for the meningiomas didn't work and my acoustics are

still slowly growing.

I have always tried (18 years) to be optimistic about this, but sometimes it

isn't easy!

I really admire your gumption. . .maybe I need to " readjust my attitude

again " !

bentoak4@...

[Guest guest]

ha ha ha I'll have it on your desk in 3 months ---- $1,000 for the research

powlease !!!!

Sally

[Guest guest]

Sally,

How will you be researching NF this summer? Sounds great to hear this

dedicated effort. You bet we are all focused on treatments and cures. I

personally am looking for any research projects using thalidomide or anything

that at least slows these tumors down. I'll be happy to contribute to your

effort where I can. Vicki

[Guest guest]

Now that IS research...... All the best for your treatment and hope you keep

hearing..... Darn it, course you will keep it,...... and keep that positive

attitude, it does help..

.

my radiation tx program

> Sally,

>

> I have just completed my obsessional phase of research on how to treat my

2nd

> bilateral acoustic - being deaf from surgery in the other ear.

Microsurgery

> - decompression - radiotherapy/radiosurgery (if so - which type).

>

> After wading through a lot of what crew mail/members said and looking at

some

> medical articles what I felt was most helpful was the following.

>

> I got names of docs to consult with - mostly from the crew and I consulted

> with in the following order:

>

> 1)my otolaryngolgist-surgeon - Noel Cohen who is highly thought of in the

NYC

> area - listed in Best Docs - also a friend of Brackmann's. (Cohen removed

my

> first acoustic). He was ready to surgically remove my acoustic (40%

chance

> of hearing preservation) but he also said, if I wanted, he would refer me

to

> a GK man.

>

> 2) The GK man felt chances of hearing preservation with GK were not so

good

> for me.

>

> 3) Brackmann (by phone) who thought decompression might be the way to go.

> (The crew was helpful in making me aware of his tendency to talk " rosey "

to

> people.)

>

> 4) A highly thought of neurologist who said to me that the surgeons get up

at

> 5 am and go to bed at 9 pm so they can do their surgery while the

> neurologists have the time luxery to research and think. In other

words....I

> looked to him to have an overview on surgery vs. radiotherapy.

>

> He strongly felt that I should consult re radiotherapy since surgery

offered

> not a lot of hope for hearing preservation.

>

> He made the point that we all know that radiotherapy is relatively new so

> there is no one authoritative answer based on enough data. His view was

that

> it didn't matter a whole lot which kind of radiotherapy I did. (This

> provided relief for me in feeling that I didn't have to take the time to

> become a world expert on the various kinds of radiotherapy. ))

>

> 5) I talked with Kim 's Peacock man, Dr. Woo (highly thought of)

and

> asked him if he thought he had a clone in my area. He did - Lynda

Mandell.

>

> 6) I consulted with Lynda Mandell who was terrific and optimistic about

what

> she could do for me.

>

> 7) I also consulted with of s Hopkins who was

prepared

> to FSR but was geographically inconvenient.

>

> 8) I consulted with neurosurgeon Baskin (also Kim's doc) who

suggested

> I consult with Dr. Woo.

>

> 9) At that point, I felt I'd done the best I could. I have now had 7 out

of

> 25 days of radiation therapy with Dr. Mandell and am keeping my fingers

> crossed.

>

> Hope this helps,

>

> Barbara B., New York City

>

>

>

>

[Guest guest]

Now that IS research...... All the best for your treatment and hope you keep

hearing..... Darn it, course you will keep it,...... and keep that positive

attitude, it does help..

.

my radiation tx program

> Sally,

>

> I have just completed my obsessional phase of research on how to treat my

2nd

> bilateral acoustic - being deaf from surgery in the other ear.

Microsurgery

> - decompression - radiotherapy/radiosurgery (if so - which type).

>

> After wading through a lot of what crew mail/members said and looking at

some

> medical articles what I felt was most helpful was the following.

>

> I got names of docs to consult with - mostly from the crew and I consulted

> with in the following order:

>

> 1)my otolaryngolgist-surgeon - Noel Cohen who is highly thought of in the

NYC

> area - listed in Best Docs - also a friend of Brackmann's. (Cohen removed

my

> first acoustic). He was ready to surgically remove my acoustic (40%

chance

> of hearing preservation) but he also said, if I wanted, he would refer me

to

> a GK man.

>

> 2) The GK man felt chances of hearing preservation with GK were not so

good

> for me.

>

> 3) Brackmann (by phone) who thought decompression might be the way to go.

> (The crew was helpful in making me aware of his tendency to talk " rosey "

to

> people.)

>

> 4) A highly thought of neurologist who said to me that the surgeons get up

at

> 5 am and go to bed at 9 pm so they can do their surgery while the

> neurologists have the time luxery to research and think. In other

words....I

> looked to him to have an overview on surgery vs. radiotherapy.

>

> He strongly felt that I should consult re radiotherapy since surgery

offered

> not a lot of hope for hearing preservation.

>

> He made the point that we all know that radiotherapy is relatively new so

> there is no one authoritative answer based on enough data. His view was

that

> it didn't matter a whole lot which kind of radiotherapy I did. (This

> provided relief for me in feeling that I didn't have to take the time to

> become a world expert on the various kinds of radiotherapy. ))

>

> 5) I talked with Kim 's Peacock man, Dr. Woo (highly thought of)

and

> asked him if he thought he had a clone in my area. He did - Lynda

Mandell.

>

> 6) I consulted with Lynda Mandell who was terrific and optimistic about

what

> she could do for me.

>

> 7) I also consulted with of s Hopkins who was

prepared

> to FSR but was geographically inconvenient.

>

> 8) I consulted with neurosurgeon Baskin (also Kim's doc) who

suggested

> I consult with Dr. Woo.

>

> 9) At that point, I felt I'd done the best I could. I have now had 7 out

of

> 25 days of radiation therapy with Dr. Mandell and am keeping my fingers

> crossed.

>

> Hope this helps,

>

> Barbara B., New York City

>

>

>

>

[Guest guest]

Hi Barbara B.

This helps a lot :-)))) I am drawing the beginning of my decisions from the

Crew, since we all have these procedures first hand and are able to share

information, which that in itself makes it invaluable.

When I called Staten Island to find out what their evaluation of my scans

were, they said they hadn't received them ? It's been a few weeks since I

gave Columbus Hosptail in Chicago the ok to send them to MY. So, now I need

to call Columbus and see if they were actually sent (humph).

Can you give me all the numbers of everyone you spoke about? Either through

the Crew or my own e-mail (GospelBlessings@...).

You have been so thorough in your research it is reassuring to me that I can

do the same.

Thanks so much again,

Sally s

[Guest guest]

Becky,

I take it you have no other tumors than the AN's to date? Becuz even though I am

deaf, the " other " tumors can rob you of somuch more than just your hearing. I

know we are all different, but the hearing loss s small potatos to the other

potential losses -- to me anyways.

[Guest guest]

,

I have more meningiomas than anyone wants to count. When I tried to count I

got to like 20 to 25 and just stopped. They are all very small. I am

unsure of my spine and they figure I probably have some tiny ones scattered

around there as well.

Fortunately I have nothing close to the brain stem.

What other tumors do you or did you have?

- Beck

[Guest guest]

In a message dated 6/11/00 10:43:49 PM Eastern Daylight Time,

bluediver@... writes:

<< I have more meningiomas than anyone wants to count. >>

I know we've been through this dozens of times...but, what does a meningioma

look like? Is it internal or external?

I know that I have several " skin " lumps. These range in size from a mere

pindrop to one that is a little bit bigger than a .25 coin. Most are growing

under the skin. But I have a few that I don't think are because they're red

lumps on the skin (and no, it's not measles or mumps because I've had the

lumps for a few years). FYI - the bumps are all over my body. I even have

one on the sole of my foot.

Sound familiar to anyone? I'd appreciate any feedback...

Thanks a bunch,

June

[Guest guest]

In a message dated 6/11/00 10:43:49 PM Eastern Daylight Time,

bluediver@... writes:

<< I have more meningiomas than anyone wants to count. >>

I know we've been through this dozens of times...but, what does a meningioma

look like? Is it internal or external?

I know that I have several " skin " lumps. These range in size from a mere

pindrop to one that is a little bit bigger than a .25 coin. Most are growing

under the skin. But I have a few that I don't think are because they're red

lumps on the skin (and no, it's not measles or mumps because I've had the

lumps for a few years). FYI - the bumps are all over my body. I even have

one on the sole of my foot.

Sound familiar to anyone? I'd appreciate any feedback...

Thanks a bunch,

June

[Guest guest]

Hi Becky,

That is a lot of meninggiomas. In a way, that is comforting to know you are so

active with all of those. As for me, I have 4 on the surface of my brain. Dr

says they are not a problem, so i not worry abt them. I have had 2 major tumors

in my c spine, c 2,3 and c 6,7, both removed " successfully " While im able to

walk ride my bike ad do most things, i have lost a lot and it can be depressing.

for instance i have 3 fingers working out of 10 :-( my legs are weaker but its

only apparent to me, no one notices and no apparent muscle loss. but i cant

skate anymore (not a big deal, but i wish i could) i would not attempt to swim

under water, i know id becom disoriented and since my arms weakened I cant swim!

I just discovered this last week in my pool. i sink like a rock now! (what a

bummer huh marcus?) so thats it for me. While i did say hearing loss was not the

worse thing of nf2, its not grand, and my best to you for retaining some

hearing.

cindy

bluediver wrote:

> ,

>

> I have more meningiomas than anyone wants to count. When I tried to count I

> got to like 20 to 25 and just stopped. They are all very small. I am

> unsure of my spine and they figure I probably have some tiny ones scattered

> around there as well.

>

> Fortunately I have nothing close to the brain stem.

>

> What other tumors do you or did you have?

>

> - Beck

[Guest guest]

Hi Becky,

That is a lot of meninggiomas. In a way, that is comforting to know you are so

active with all of those. As for me, I have 4 on the surface of my brain. Dr

says they are not a problem, so i not worry abt them. I have had 2 major tumors

in my c spine, c 2,3 and c 6,7, both removed " successfully " While im able to

walk ride my bike ad do most things, i have lost a lot and it can be depressing.

for instance i have 3 fingers working out of 10 :-( my legs are weaker but its

only apparent to me, no one notices and no apparent muscle loss. but i cant

skate anymore (not a big deal, but i wish i could) i would not attempt to swim

under water, i know id becom disoriented and since my arms weakened I cant swim!

I just discovered this last week in my pool. i sink like a rock now! (what a

bummer huh marcus?) so thats it for me. While i did say hearing loss was not the

worse thing of nf2, its not grand, and my best to you for retaining some

hearing.

cindy

bluediver wrote:

> ,

>

> I have more meningiomas than anyone wants to count. When I tried to count I

> got to like 20 to 25 and just stopped. They are all very small. I am

> unsure of my spine and they figure I probably have some tiny ones scattered

> around there as well.

>

> Fortunately I have nothing close to the brain stem.

>

> What other tumors do you or did you have?

>

> - Beck

[Guest guest]

Hi Becky,

That is a lot of meninggiomas. In a way, that is comforting to know you are so

active with all of those. As for me, I have 4 on the surface of my brain. Dr

says they are not a problem, so i not worry abt them. I have had 2 major tumors

in my c spine, c 2,3 and c 6,7, both removed " successfully " While im able to

walk ride my bike ad do most things, i have lost a lot and it can be depressing.

for instance i have 3 fingers working out of 10 :-( my legs are weaker but its

only apparent to me, no one notices and no apparent muscle loss. but i cant

skate anymore (not a big deal, but i wish i could) i would not attempt to swim

under water, i know id becom disoriented and since my arms weakened I cant swim!

I just discovered this last week in my pool. i sink like a rock now! (what a

bummer huh marcus?) so thats it for me. While i did say hearing loss was not the

worse thing of nf2, its not grand, and my best to you for retaining some

hearing.

cindy

bluediver wrote:

> ,

>

> I have more meningiomas than anyone wants to count. When I tried to count I

> got to like 20 to 25 and just stopped. They are all very small. I am

> unsure of my spine and they figure I probably have some tiny ones scattered

> around there as well.

>

> Fortunately I have nothing close to the brain stem.

>

> What other tumors do you or did you have?

>

> - Beck

[Guest guest]

Hi Becky,

That is a lot of meninggiomas. In a way, that is comforting to know you are so

active with all of those. As for me, I have 4 on the surface of my brain. Dr

says they are not a problem, so i not worry abt them. I have had 2 major tumors

in my c spine, c 2,3 and c 6,7, both removed " successfully " While im able to

walk ride my bike ad do most things, i have lost a lot and it can be depressing.

for instance i have 3 fingers working out of 10 :-( my legs are weaker but its

only apparent to me, no one notices and no apparent muscle loss. but i cant

skate anymore (not a big deal, but i wish i could) i would not attempt to swim

under water, i know id becom disoriented and since my arms weakened I cant swim!

I just discovered this last week in my pool. i sink like a rock now! (what a

bummer huh marcus?) so thats it for me. While i did say hearing loss was not the

worse thing of nf2, its not grand, and my best to you for retaining some

hearing.

cindy

bluediver wrote:

> ,

>

> I have more meningiomas than anyone wants to count. When I tried to count I

> got to like 20 to 25 and just stopped. They are all very small. I am

> unsure of my spine and they figure I probably have some tiny ones scattered

> around there as well.

>

> Fortunately I have nothing close to the brain stem.

>

> What other tumors do you or did you have?

>

> - Beck