New Member

[Guest guest]

Welcome aboard to all the new members.

Mikeabi42

[Guest guest]

Welcome aboard to all the new members.

Mikeabi42

[Guest guest]

Yep Mate,

I know what you mean, they are a dead-set pain in the date. These aussie

docs seem to need educating with a " sledgehammer " .

Welcome to the best NF2 place in the world for help support and information

..... . If these people can't help you then no one can.

Who is the doc looking after your child/children and how old is Louis????

from " Cane-toad " country.

Come on Broncos..........

New member

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

[Guest guest]

Yep Mate,

I know what you mean, they are a dead-set pain in the date. These aussie

docs seem to need educating with a " sledgehammer " .

Welcome to the best NF2 place in the world for help support and information

..... . If these people can't help you then no one can.

Who is the doc looking after your child/children and how old is Louis????

from " Cane-toad " country.

Come on Broncos..........

New member

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

[Guest guest]

Yep Mate,

I know what you mean, they are a dead-set pain in the date. These aussie

docs seem to need educating with a " sledgehammer " .

Welcome to the best NF2 place in the world for help support and information

..... . If these people can't help you then no one can.

Who is the doc looking after your child/children and how old is Louis????

from " Cane-toad " country.

Come on Broncos..........

New member

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

[Guest guest]

Welcome Rosemary...I just " met " someone from Perth down there ready to become a

Grandma for the first time.

I was diagnosed in 1984 with NF2, even though I had an acoustic removed in 87.

As of right now, until I have my MRI on Oct 20, I have 7 in my head and 2 in my

spinal cord. I have recently gotten a bump on my head and believe it is a tumor

that decided not to grow for a long while and now it has taken off. I will know

more later. I have heard of fast growing and slow growing tumors, I think there

is no sure way to know. That's why we have MRI so often and on a regular basis.

I can't answer your other questions and I am sure someone here " may be " able to

help.

Blessings to your son..........

Carol

Prowse wrote:

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

>

[Guest guest]

Welcome Rosemary...I just " met " someone from Perth down there ready to become a

Grandma for the first time.

I was diagnosed in 1984 with NF2, even though I had an acoustic removed in 87.

As of right now, until I have my MRI on Oct 20, I have 7 in my head and 2 in my

spinal cord. I have recently gotten a bump on my head and believe it is a tumor

that decided not to grow for a long while and now it has taken off. I will know

more later. I have heard of fast growing and slow growing tumors, I think there

is no sure way to know. That's why we have MRI so often and on a regular basis.

I can't answer your other questions and I am sure someone here " may be " able to

help.

Blessings to your son..........

Carol

Prowse wrote:

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

>

[Guest guest]

Welcome Rosemary...I just " met " someone from Perth down there ready to become a

Grandma for the first time.

I was diagnosed in 1984 with NF2, even though I had an acoustic removed in 87.

As of right now, until I have my MRI on Oct 20, I have 7 in my head and 2 in my

spinal cord. I have recently gotten a bump on my head and believe it is a tumor

that decided not to grow for a long while and now it has taken off. I will know

more later. I have heard of fast growing and slow growing tumors, I think there

is no sure way to know. That's why we have MRI so often and on a regular basis.

I can't answer your other questions and I am sure someone here " may be " able to

help.

Blessings to your son..........

Carol

Prowse wrote:

> Dear all,

>

> We come from the land down under,as they sang last night in the Olympics

> closing ceremony.

>

[Guest guest]

on 2/10/00 10:11 PM, Carol Winarski at horizons@... wrote:

> Welcome Rosemary...I just " met " someone from Perth down there ready to become

> a

> Grandma for the first time.

>

> I was diagnosed in 1984 with NF2, even though I had an acoustic removed in 87.

> As of right now, until I have my MRI on Oct 20, I have 7 in my head and 2 in

> my

> spinal cord. I have recently gotten a bump on my head and believe it is a

> tumor

> that decided not to grow for a long while and now it has taken off. I will

> know

> more later. I have heard of fast growing and slow growing tumors, I think

> there

> is no sure way to know. That's why we have MRI so often and on a regular

> basis.

>

> I can't answer your other questions and I am sure someone here " may be " able

> to

> help.

> Blessings to your son..........

>

> Carol

>

> Prowse wrote:

>

>> Dear all,

>>

>> We come from the land down under,as they sang last night in the Olympics

>> closing ceremony.

>>

>

>

>

Dear Carol,

Blessing you right back....

The reason I ask about tumor growth is because my son's tumor is so big.

Both of his tumors are in his head.

Did your tumors in your head preceed the acoustic neuroma?

How did they diagnose you before the acoustic neuroma?

Did you have the cataracts first?

I'm trying to work out a diet that slows and possibly reverses tumor growth.

Have been studying the immune system and how our bodies are designed to heal

themselves and fight of mutant cells. Have you looked at this? Any thoughts?

Curiously, my son has a high cholesterol reading. Have you heard of anybody

else with NF2 with high cholesterol??

Take care, Rosemary.

[Guest guest]

on 2/10/00 10:11 PM, Carol Winarski at horizons@... wrote:

> Welcome Rosemary...I just " met " someone from Perth down there ready to become

> a

> Grandma for the first time.

>

> I was diagnosed in 1984 with NF2, even though I had an acoustic removed in 87.

> As of right now, until I have my MRI on Oct 20, I have 7 in my head and 2 in

> my

> spinal cord. I have recently gotten a bump on my head and believe it is a

> tumor

> that decided not to grow for a long while and now it has taken off. I will

> know

> more later. I have heard of fast growing and slow growing tumors, I think

> there

> is no sure way to know. That's why we have MRI so often and on a regular

> basis.

>

> I can't answer your other questions and I am sure someone here " may be " able

> to

> help.

> Blessings to your son..........

>

> Carol

>

> Prowse wrote:

>

>> Dear all,

>>

>> We come from the land down under,as they sang last night in the Olympics

>> closing ceremony.

>>

>

>

>

Dear Carol,

Blessing you right back....

The reason I ask about tumor growth is because my son's tumor is so big.

Both of his tumors are in his head.

Did your tumors in your head preceed the acoustic neuroma?

How did they diagnose you before the acoustic neuroma?

Did you have the cataracts first?

I'm trying to work out a diet that slows and possibly reverses tumor growth.

Have been studying the immune system and how our bodies are designed to heal

themselves and fight of mutant cells. Have you looked at this? Any thoughts?

Curiously, my son has a high cholesterol reading. Have you heard of anybody

else with NF2 with high cholesterol??

Take care, Rosemary.

[Guest guest]

on 3/10/00 12:15 PM, ine Stanton at pstanton@... wrote:

Rosemary wrote:

>We come from the land down under,as they sang last night in the Olympics

closing ceremony.<

Welcome Rosemary, it feels especially nice to have another Aussie on the Crew. The reason you have had to join the Crew isn't ofcourse, but the knowledge, support and understanding you will find here will astound you. I mostly read, the crew's knowledge is way beyond mine, but can see that you will be contributing and we/I may benefit from anything you discover further about diet.

I agree with you that this must be greatly undiagnosed in Australia. The USA are far more advanced. For the older generation, my father died back in 1970, he could have had the mutant gene, but we will never know. I'm 54 and if I hadn't pestered the doctors so much because of my neck pain, I would have been " pushing up daisies " before anything was discovered. My son 30, had an AN removed July 99 without any mention of NF2 and I wasn't diagnosed until April 2000. I can understand the medical profession not looking for problems, but surely a 4cm AN warrants the DR asking questions about the rest of the family. I hope it's not incompetence by this same doctor (Prof) as he will be operating on my C2 tumour this month.

Both boys 29 & 30 have NF2. The fact that we were only discovered this year is probably a kindness for us. The anguish of parents with children who have NF2 must be heart breaking and only something I can imagine. My thoughts and prayers are with you all.

Please e-mail me if you want to chat anytime.

ine

Dear ine,

Which hospital are you going to?Who is your doctor?

I believe DR Fagen at St s is the best in Sydney for AN tumors, or at least he does the most.....

Also a doctor in Melbourne.

What is a C2 tumour (it is nice to use the Aus spelling)? Is this a location on the spine?

Do you or your sons have the cataracts, if so which ophthalmologist did you see? Have been to many and position and clinical info match NF2 cataracts, but cant find anybody who has seen them before.

Has the course of your NF2 been true for your sons as well?

Am trying to piece some things together.....

Have you a high cholesterol reading, am going to see Petrea King next week,who as you probably know is a legend in cancer diet therapy and building immune system to fight of tumours. There must be something we can do to get that Merlin more functional.

Want to go armed with information.

I agree with you about the kindness of not knowing......we are probably the only people in this country in this position ie my son is presumable or presumptive Nf2 and technically not a confirmed case until he develops another tumour. Of course if and when he does we are in the most severe category, with early onset of multiple fast-growing tumours.

That just means I have to try harder.

I need information to be effective. Have already considered and made some inroads into setting up a foundation here but currently there is no research in Australia with this disorder and they are so far behind America I 've given up. Rather I'm focusing on American Research.

really nice to hear from someone in Aus,

Rosemary.

[Guest guest]

on 3/10/00 12:15 PM, ine Stanton at pstanton@... wrote:

Rosemary wrote:

>We come from the land down under,as they sang last night in the Olympics

closing ceremony.<

Welcome Rosemary, it feels especially nice to have another Aussie on the Crew. The reason you have had to join the Crew isn't ofcourse, but the knowledge, support and understanding you will find here will astound you. I mostly read, the crew's knowledge is way beyond mine, but can see that you will be contributing and we/I may benefit from anything you discover further about diet.

I agree with you that this must be greatly undiagnosed in Australia. The USA are far more advanced. For the older generation, my father died back in 1970, he could have had the mutant gene, but we will never know. I'm 54 and if I hadn't pestered the doctors so much because of my neck pain, I would have been " pushing up daisies " before anything was discovered. My son 30, had an AN removed July 99 without any mention of NF2 and I wasn't diagnosed until April 2000. I can understand the medical profession not looking for problems, but surely a 4cm AN warrants the DR asking questions about the rest of the family. I hope it's not incompetence by this same doctor (Prof) as he will be operating on my C2 tumour this month.

Both boys 29 & 30 have NF2. The fact that we were only discovered this year is probably a kindness for us. The anguish of parents with children who have NF2 must be heart breaking and only something I can imagine. My thoughts and prayers are with you all.

Please e-mail me if you want to chat anytime.

ine

Dear ine,

Which hospital are you going to?Who is your doctor?

I believe DR Fagen at St s is the best in Sydney for AN tumors, or at least he does the most.....

Also a doctor in Melbourne.

What is a C2 tumour (it is nice to use the Aus spelling)? Is this a location on the spine?

Do you or your sons have the cataracts, if so which ophthalmologist did you see? Have been to many and position and clinical info match NF2 cataracts, but cant find anybody who has seen them before.

Has the course of your NF2 been true for your sons as well?

Am trying to piece some things together.....

Have you a high cholesterol reading, am going to see Petrea King next week,who as you probably know is a legend in cancer diet therapy and building immune system to fight of tumours. There must be something we can do to get that Merlin more functional.

Want to go armed with information.

I agree with you about the kindness of not knowing......we are probably the only people in this country in this position ie my son is presumable or presumptive Nf2 and technically not a confirmed case until he develops another tumour. Of course if and when he does we are in the most severe category, with early onset of multiple fast-growing tumours.

That just means I have to try harder.

I need information to be effective. Have already considered and made some inroads into setting up a foundation here but currently there is no research in Australia with this disorder and they are so far behind America I 've given up. Rather I'm focusing on American Research.

really nice to hear from someone in Aus,

Rosemary.

[Guest guest]

Rosemary wrote:

>We come from the land down under,as they sang last night in the Olympicsclosing ceremony.<

Welcome Rosemary, it feels especially nice to have another Aussie on the Crew. The reason you have had to join the Crew isn't ofcourse, but the knowledge, support and understanding you will find here will astound you. I mostly read, the crew's knowledge is way beyond mine, but can see that you will be contributing and we/I may benefit from anything you discover further about diet.

I agree with you that this must be greatly undiagnosed in Australia. The USA are far more advanced. For the older generation, my father died back in 1970, he could have had the mutant gene, but we will never know. I'm 54 and if I hadn't pestered the doctors so much because of my neck pain, I would have been "pushing up daisies" before anything was discovered. My son 30, had an AN removed July 99 without any mention of NF2 and I wasn't diagnosed until April 2000. I can understand the medical profession not looking for problems, but surely a 4cm AN warrants the DR asking questions about the rest of the family. I hope it's not incompetence by this same doctor (Prof) as he will be operating on my C2 tumour this month.

Both boys 29 & 30 have NF2. The fact that we were only discovered this year is probably a kindness for us. The anguish of parents with children who have NF2 must be heart breaking and only something I can imagine. My thoughts and prayers are with you all.

Please e-mail me if you want to chat anytime.

ine

[Guest guest]

Rosemary wrote:

>We come from the land down under,as they sang last night in the Olympicsclosing ceremony.<

Welcome Rosemary, it feels especially nice to have another Aussie on the Crew. The reason you have had to join the Crew isn't ofcourse, but the knowledge, support and understanding you will find here will astound you. I mostly read, the crew's knowledge is way beyond mine, but can see that you will be contributing and we/I may benefit from anything you discover further about diet.

I agree with you that this must be greatly undiagnosed in Australia. The USA are far more advanced. For the older generation, my father died back in 1970, he could have had the mutant gene, but we will never know. I'm 54 and if I hadn't pestered the doctors so much because of my neck pain, I would have been "pushing up daisies" before anything was discovered. My son 30, had an AN removed July 99 without any mention of NF2 and I wasn't diagnosed until April 2000. I can understand the medical profession not looking for problems, but surely a 4cm AN warrants the DR asking questions about the rest of the family. I hope it's not incompetence by this same doctor (Prof) as he will be operating on my C2 tumour this month.

Both boys 29 & 30 have NF2. The fact that we were only discovered this year is probably a kindness for us. The anguish of parents with children who have NF2 must be heart breaking and only something I can imagine. My thoughts and prayers are with you all.

Please e-mail me if you want to chat anytime.

ine

[Guest guest]

Rosemary,

Welcome.

There is no characteristic that is 100% always true. The speed of growth of

tumors I know varies considerably. Anne's, my daughter who is now 27, seems

to have very rapidly growing tumors that get very large. For others this may

not be true. I am sure you must know the Serenity prayer which seems to help

me as a parent: God grant me the serenity to accept the things I cannot

change, the courage to change the things I must, and the wisdom to know the

difference.

Is your son a mutation or is it in the family?

Vicki

[Guest guest]

Rosemary,

Welcome.

There is no characteristic that is 100% always true. The speed of growth of

tumors I know varies considerably. Anne's, my daughter who is now 27, seems

to have very rapidly growing tumors that get very large. For others this may

not be true. I am sure you must know the Serenity prayer which seems to help

me as a parent: God grant me the serenity to accept the things I cannot

change, the courage to change the things I must, and the wisdom to know the

difference.

Is your son a mutation or is it in the family?

Vicki

[Guest guest]

ine,

After reading your post, I feel apprehensive. I am well into my fifties,

with no sign of NF nor my husband. Our daughter, diagnosed at 15, is

supposedly a mutation. How does a disorder like this just show up? No

preliminary health questions or situations? It sure casts a shadow of doubt

on our situation and my son who is 31. Please share a little more about your

situation to me. Thanks, Vicki

[Guest guest]

ine,

After reading your post, I feel apprehensive. I am well into my fifties,

with no sign of NF nor my husband. Our daughter, diagnosed at 15, is

supposedly a mutation. How does a disorder like this just show up? No

preliminary health questions or situations? It sure casts a shadow of doubt

on our situation and my son who is 31. Please share a little more about your

situation to me. Thanks, Vicki

[Guest guest]

on 3/10/00 4:38 PM, vjpcook@... at vjpcook@... wrote:

> Rosemary,

> Welcome.

> There is no characteristic that is 100% always true. The speed of growth of

> tumors I know varies considerably. Anne's, my daughter who is now 27, seems

> to have very rapidly growing tumors that get very large. For others this may

> not be true. I am sure you must know the Serenity prayer which seems to help

> me as a parent: God grant me the serenity to accept the things I cannot

> change, the courage to change the things I must, and the wisdom to know the

> difference.

> Is your son a mutation or is it in the family?

>

>

> Vicki

>

>

Dear Vicki,

You " re right ....I don't have an abundance of serenity. I wish I did and I

also wish I had religion on my side. I am arrogant enough to think I can

change things. If not change them,at least learn enough to make them more

manageable.

Louis is a new genetic alteration.

I don't understand why with so few databases of the clinical progression of

Nf2(,and the Helsinki one that has just been posted) the NF2 Crew have

not been approached by theFoundation,who say they need to learn more from

their patients. Or have they?

Has any other child or adult presented with bilateral brain meningiomas as a

first symptom?

Rosemary

[Guest guest]

on 3/10/00 4:38 PM, vjpcook@... at vjpcook@... wrote:

> Rosemary,

> Welcome.

> There is no characteristic that is 100% always true. The speed of growth of

> tumors I know varies considerably. Anne's, my daughter who is now 27, seems

> to have very rapidly growing tumors that get very large. For others this may

> not be true. I am sure you must know the Serenity prayer which seems to help

> me as a parent: God grant me the serenity to accept the things I cannot

> change, the courage to change the things I must, and the wisdom to know the

> difference.

> Is your son a mutation or is it in the family?

>

>

> Vicki

>

>

Dear Vicki,

You " re right ....I don't have an abundance of serenity. I wish I did and I

also wish I had religion on my side. I am arrogant enough to think I can

change things. If not change them,at least learn enough to make them more

manageable.

Louis is a new genetic alteration.

I don't understand why with so few databases of the clinical progression of

Nf2(,and the Helsinki one that has just been posted) the NF2 Crew have

not been approached by theFoundation,who say they need to learn more from

their patients. Or have they?

Has any other child or adult presented with bilateral brain meningiomas as a

first symptom?

Rosemary

[Guest guest]

Rosemary,

I have no answers for your questions. Maybe others will. But I found your

referral to arrogance and your ability to change things reminiscent of how I

felt when I first heard of this with my daughter. Perhaps this disorder has

taught me the lesson that I needed (and still do) to learn which is that

something's just must be dealt with however they turn out and some things we

cannot control. These are tough lessons. Right? Keep the faith and the

strength needed to persevere. Best wishes to you. Vicki

[Guest guest]

Rosemary,

I have no answers for your questions. Maybe others will. But I found your

referral to arrogance and your ability to change things reminiscent of how I

felt when I first heard of this with my daughter. Perhaps this disorder has

taught me the lesson that I needed (and still do) to learn which is that

something's just must be dealt with however they turn out and some things we

cannot control. These are tough lessons. Right? Keep the faith and the

strength needed to persevere. Best wishes to you. Vicki

[Guest guest]

Rosemary,

I have no answers for your questions. Maybe others will. But I found your

referral to arrogance and your ability to change things reminiscent of how I

felt when I first heard of this with my daughter. Perhaps this disorder has

taught me the lesson that I needed (and still do) to learn which is that

something's just must be dealt with however they turn out and some things we

cannot control. These are tough lessons. Right? Keep the faith and the

strength needed to persevere. Best wishes to you. Vicki

[Guest guest]

Hello Rosemary...sorry for the delay in getting back to you...Have been

ill the last couple of weeks........

Did your tumors in your head preceed the acoustic neuroma?

I had the AN first, diagnosed in England but went back to states for

diagnosis and surgery, but they did not diagnose NF2 at the time(1987)....not

till 1994.

How did they diagnose you before the acoustic neuroma?

I was having neck pain and 40% loss of hearing but no diagnoses for

NF2. That came after an MRI because I was having headaches and there appeared

the 5 in my head and 2 in my spine.

Did you have the cataracts first?

No, I just had an eye exam on Tuesday and my discs are larger than

they should be and if they continue I will go blind. No cataracts though.

I'm trying to work out a diet that slows and possibly reverses tumor

growth.

Have been studying the immune system and how our bodies are designed

to heal

themselves and fight of mutant cells. Have you looked at this?

I have looked into different things but nothing that turns me on and

convinces me that anything can be done.

Curiously, my son has a high cholesterol reading. Have you heard

of anybody

else with NF2 with high cholesterol??

I haven't as far as NF2 but I have heard of teens with high cholesterol.

This is where a diet would have to come in to try and lower it.....No more

Mcs!! UGH!!

I am a mutant, no one in my family has it that we are aware of.

I have surrendered to "what is" and take it day by day. I do research but

I stay aware that we do have a life to live. I can certainly understand

your worrying.... and do try to make your son's life....a life. And you

too. Learning how to meditate would be good for both of you and don't give

up your goals.

One way we attempt to help in research here is by raising funds. I

have done stuff on Ebay and we have had yardsales. This may be an option

for you right now till you can get the info site started.

Hang in there......and we are here if you need us!!!!!!!

Cyber Hugs.....Carol

Prowse wrote:

on 2/10/00 10:11 PM, Carol Winarski at horizons@...

wrote:

> Welcome Rosemary...I just "met" someone from Perth down there ready

to become

> a

> Grandma for the first time.

>

> I was diagnosed in 1984 with NF2, even though I had an acoustic removed

in 87.

> As of right now, until I have my MRI on Oct 20, I have 7 in my head

and 2 in

> my

> spinal cord. I have recently gotten a bump on my head and believe

it is a

> tumor

> that decided not to grow for a long while and now it has taken off.

I will

> know

> more later. I have heard of fast growing and slow growing tumors,

I think

> there

> is no sure way to know. That's why we have MRI so often and on a

regular

> basis.

>

> I can't answer your other questions and I am sure someone here "may

be" able

> to

> help.

> Blessings to your son..........

>

> Carol

>

> Prowse wrote:

>

>> Dear all,

>>

>> We come from the land down under,as they sang last night in the

Olympics

>> closing ceremony.

>>

>

>

>

Dear Carol,

Blessing you right back....

The reason I ask about tumor growth is because my son's tumor is so

big.

Both of his tumors are in his head.

Did your tumors in your head preceed the acoustic neuroma?

How did they diagnose you before the acoustic neuroma?

Did you have the cataracts first?

I'm trying to work out a diet that slows and possibly reverses tumor

growth.

Have been studying the immune system and how our bodies are designed

to heal

themselves and fight of mutant cells. Have you looked at this? Any

thoughts?

Curiously, my son has a high cholesterol reading. Have you heard of

anybody

else with NF2 with high cholesterol??

Take care, Rosemary.

[Guest guest]

Hello Rosemary...sorry for the delay in getting back to you...Have been

ill the last couple of weeks........

Did your tumors in your head preceed the acoustic neuroma?

I had the AN first, diagnosed in England but went back to states for

diagnosis and surgery, but they did not diagnose NF2 at the time(1987)....not

till 1994.

How did they diagnose you before the acoustic neuroma?

I was having neck pain and 40% loss of hearing but no diagnoses for

NF2. That came after an MRI because I was having headaches and there appeared

the 5 in my head and 2 in my spine.

Did you have the cataracts first?

No, I just had an eye exam on Tuesday and my discs are larger than

they should be and if they continue I will go blind. No cataracts though.

I'm trying to work out a diet that slows and possibly reverses tumor

growth.

Have been studying the immune system and how our bodies are designed

to heal

themselves and fight of mutant cells. Have you looked at this?

I have looked into different things but nothing that turns me on and

convinces me that anything can be done.

Curiously, my son has a high cholesterol reading. Have you heard

of anybody

else with NF2 with high cholesterol??

I haven't as far as NF2 but I have heard of teens with high cholesterol.

This is where a diet would have to come in to try and lower it.....No more

Mcs!! UGH!!

I am a mutant, no one in my family has it that we are aware of.

I have surrendered to "what is" and take it day by day. I do research but

I stay aware that we do have a life to live. I can certainly understand

your worrying.... and do try to make your son's life....a life. And you

too. Learning how to meditate would be good for both of you and don't give

up your goals.

One way we attempt to help in research here is by raising funds. I

have done stuff on Ebay and we have had yardsales. This may be an option

for you right now till you can get the info site started.

Hang in there......and we are here if you need us!!!!!!!

Cyber Hugs.....Carol

Prowse wrote:

on 2/10/00 10:11 PM, Carol Winarski at horizons@...

wrote:

> Welcome Rosemary...I just "met" someone from Perth down there ready

to become

> a

> Grandma for the first time.

>

> I was diagnosed in 1984 with NF2, even though I had an acoustic removed

in 87.

> As of right now, until I have my MRI on Oct 20, I have 7 in my head

and 2 in

> my

> spinal cord. I have recently gotten a bump on my head and believe

it is a

> tumor

> that decided not to grow for a long while and now it has taken off.

I will

> know

> more later. I have heard of fast growing and slow growing tumors,

I think

> there

> is no sure way to know. That's why we have MRI so often and on a

regular

> basis.

>

> I can't answer your other questions and I am sure someone here "may

be" able

> to

> help.

> Blessings to your son..........

>

> Carol

>

> Prowse wrote:

>

>> Dear all,

>>

>> We come from the land down under,as they sang last night in the

Olympics

>> closing ceremony.

>>

>

>

>

Dear Carol,

Blessing you right back....

The reason I ask about tumor growth is because my son's tumor is so

big.

Both of his tumors are in his head.

Did your tumors in your head preceed the acoustic neuroma?

How did they diagnose you before the acoustic neuroma?

Did you have the cataracts first?

I'm trying to work out a diet that slows and possibly reverses tumor

growth.

Have been studying the immune system and how our bodies are designed

to heal

themselves and fight of mutant cells. Have you looked at this? Any

thoughts?

Curiously, my son has a high cholesterol reading. Have you heard of

anybody

else with NF2 with high cholesterol??

Take care, Rosemary.