New Member

Report post · October 5, 2000

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.

Report post · October 19, 2000

Dear Georgia, welcome to the crew. The people are can be quite informative,

unfortunately, I am not one that gets along with remembering large words!! Your

little girls, (and your family) sound like a strong bunch! I am sure God is

looking out for all of you. I believe things happen for a reason, even though we

don't always know why and he doesn't give us anymore than we can handle. I know

this isn't much comfort for someone in your situation. There are others from

Australia on here and I am sure they will be in touch.

Like you I have the fatique and constant pain. Tomorrow night I have an MRI to

determine why I have 3 bumps on my head. I used to be a very active person and

this hasn't set well with me, but am dealing with it.

My prayers go with you....Carol in land

c + g paulson wrote:

> Hello everyone,

>

> My name is Georgia son and I am a new member of the Crew. I live in

Melbourne, Australia - where the Olympics weren't. My two daughters have NF2,

as do my sister, both brothers, my only nephew, my mother and her brother and

sister, we presume my three cousins, my grandmother....... My aunt was

diagnosed 5 1/2 years ago after being very hard of hearing for many years. Next

came my mother, and then I had a CT which gave the all clear. My husband and I

promptly celebrated by buying a house and welcoming a mortgage into the family.

Shortly after, the family neurosurgeon Briggs (he has the same name as my

uncle with NF2!) organised an MRI and this showed the two large ANs. I had

surgery 5 years ago and part of the left tumour was removed. They took the bit

that was pushing the brainstem but had to leave the rrest as it was twined

around the facial nerve. I am left with about 70% hearing, and the facial

paralysis is only obvious when I talk. I have no vestibular balance at all and

because I am almost blind in my left eye - a result of childhood lazy eye - I

wobble a bit. I still have a lot of pain, and the fatigue is shocking.but apart

from that I'm fine!

>

> My main concern at the moment is my elder daughter Katrina The other girl,

Madel, has two small tumours which have never caused us a moment's worry, apart

from the initial panic, and she is the healthiest, bounciest 10 year old you

could find. Katrina is 11 and has a couple of nasty problems. The two tumours

in her head are not a problem, but a year ago she had a tumour removed from C5,

where it was beginning to interfere with the movement of her left arm, and she

is left handed. She sprouted two tumours at C2 in the 6 months before that.

However she has a big plexiform neurofibroma within the sciatic nerve and this

as a huge concern. Prof. Rosenfeld tried to remove it 18 months ago because the

MRI didn't show the full extent of it. but he was only able to do a laminectomy

to relieve some pressure. The PN is about 6 inches long and shaped like a

sausage. We have spoken to doctors here and in Sydney, but nobody in Australia

can offer any hope. The surgery to remove it would involve removing half of her

pelvis, and would leave her doubly incontinent, infertile and in a wheelchair.

Her last MRI a month ago showed that this PN had not grown in the last few

months, which is the good news - the bad news is that another one seems to be

growing on the left side. This did not cheer us up at all.

>

> Everyone here says that plexiform neurofibromas are very rare. Does anyone

else have one, and is there a treatment or cure? We have got the east coast of

Australia and a good part of England on prayer duty and I am sure this helps.

> Our girls are the most precious people - I had an ovarian cyst rupture at 13

and problems with the other ovary and was told I could not have children, so two

in 14 months is not bad! My husband and I can cope with my problems, but

we find that dealing with the girls' problems is sometimes almost too much. We

will do anything to help them.

>

> If anyone can help with the PNs, I would be most grateful. .

>

> Georgia son

Report post · October 19, 2000

Hello Georgia.

My name is Rosemary ( more of a Melbourne name than Sydney) . I live in the

Southern Highlands, 11/2 hours from Sydney. I'M afraid I'm not much use when

it comes to plexiform neurofibromas. I have a 7year old with multiple

meningiomas and cataracts. I'm sure you have spoken to Westmead, I canonly

say that a geneticist by the name of Meredith may be useful. She just

called a meeting of experts to decide what to do with another 7yearold boy

who has a lot of spinal tumors causing great concern. I think the outcome

was to recommend travel to the USA.

I'm happy to help in any way I can from here....I'm very good at hassling

Drs.

I'm sure will come online soon and offer you more info.

I'm also sure the rest of the crew will generously give you as much guidance

and personal experience as is possible. They are all probably asleep now.

Feel free to email me anytime. My heart and strength go out to you ....it is

unbelievably heartbreaking to watch the ravages of Nf2 in our children.

Rosemary.

0on 25/7/18 12:00 AM, c + g paulson at abbey@... wrote:

> Hello everyone,

>

> My name is Georgia son and I am a new member of the Crew. I live in

> Melbourne, Australia - where the Olympics weren't. My two daughters have NF2,

> as do my sister, both brothers, my only nephew, my mother and her brother and

> sister, we presume my three cousins, my grandmother....... My aunt was

> diagnosed 5 1/2 years ago after being very hard of hearing for many years.

> Next came my mother, and then I had a CT which gave the all clear. My husband

> and I promptly celebrated by buying a house and welcoming a mortgage into the

> family. Shortly after, the family neurosurgeon Briggs (he has the same

> name as my uncle with NF2!) organised an MRI and this showed the two large

> ANs. I had surgery 5 years ago and part of the left tumour was removed. They

> took the bit that was pushing the brainstem but had to leave the rrest as it

> was twined around the facial nerve. I am left with about 70% hearing, and the

> facial paralysis is only obvious when I talk. I have no vestibular balance at

> all and because I am almost blind in my left eye - a result of childhood lazy

> eye - I wobble a bit. I still have a lot of pain, and the fatigue is

> shocking.but apart from that I'm fine!

>

> My main concern at the moment is my elder daughter Katrina The other girl,

> Madel, has two small tumours which have never caused us a moment's worry,

> apart from the initial panic, and she is the healthiest, bounciest 10 year old

> you could find. Katrina is 11 and has a couple of nasty problems. The two

> tumours in her head are not a problem, but a year ago she had a tumour removed

> from C5, where it was beginning to interfere with the movement of her left

> arm, and she is left handed. She sprouted two tumours at C2 in the 6 months

> before that. However she has a big plexiform neurofibroma within the sciatic

> nerve and this as a huge concern. Prof. Rosenfeld tried to remove it 18

> months ago because the MRI didn't show the full extent of it. but he was only

> able to do a laminectomy to relieve some pressure. The PN is about 6 inches

> long and shaped like a sausage. We have spoken to doctors here and in Sydney,

> but nobody in Australia can offer any hope. The surgery to remove it would

> involve removing half of her pelvis, and would leave her doubly incontinent,

> infertile and in a wheelchair. Her last MRI a month ago showed that this PN

> had not grown in the last few months, which is the good news - the bad news is

> that another one seems to be growing on the left side. This did not cheer us

> up at all.

>

> Everyone here says that plexiform neurofibromas are very rare. Does anyone

> else have one, and is there a treatment or cure? We have got the east coast

> of Australia and a good part of England on prayer duty and I am sure this

> helps.

> Our girls are the most precious people - I had an ovarian cyst rupture at 13

> and problems with the other ovary and was told I could not have children, so

> two in 14 months is not bad! My husband and I can cope with my

> problems, but we find that dealing with the girls' problems is sometimes

> almost too much. We will do anything to help them.

>

> If anyone can help with the PNs, I would be most grateful. .

>

> Georgia son

>

Report post · October 19, 2000

Hi Georgia !

Im Marcus from Surfers Paradise , you'll find plenty of great people here.

If you have NF2 its the place be .. Hmmm !!!!

I have two boys with NF2 13 and 6 , and I make 3 .

Glad you found us !

Marcus from Up here down under

>

Report post · October 19, 2000

Marcus,

You have kids........

What symptoms do your boys have?

I have a 7yearold boy with multiple brain tumours and cataracts?

what is it like for Nf surgery up there?

rosemary.

on 20/10/00 12:10 AM, Marcus at marcusmc@... wrote:

> Hi Georgia !

> Im Marcus from Surfers Paradise , you'll find plenty of great people here.

> If you have NF2 its the place be .. Hmmm !!!!

> I have two boys with NF2 13 and 6 , and I make 3 .

> Glad you found us !

> Marcus from Up here down under

>>

>

Report post · October 19, 2000

Marcus,

You have kids........

What symptoms do your boys have?

I have a 7yearold boy with multiple brain tumours and cataracts?

what is it like for Nf surgery up there?

rosemary.

on 20/10/00 12:10 AM, Marcus at marcusmc@... wrote:

> Hi Georgia !

> Im Marcus from Surfers Paradise , you'll find plenty of great people here.

> If you have NF2 its the place be .. Hmmm !!!!

> I have two boys with NF2 13 and 6 , and I make 3 .

> Glad you found us !

> Marcus from Up here down under

>>

>

Report post · October 19, 2000

Rosemary

Ill get back to you later today, they have problems and I need time to type

it all. WORK CALLS !!!!

Marcus

> Marcus,

> You have kids........

> What symptoms do your boys have?

> I have a 7yearold boy with multiple brain tumours and cataracts?

> what is it like for Nf surgery up there?

> rosemary.

>

> on 20/10/00 12:10 AM, Marcus at marcusmc@... wrote:

>

> > Hi Georgia !

> > Im Marcus from Surfers Paradise , you'll find plenty of great people

here.

> > If you have NF2 its the place be .. Hmmm !!!!

> > I have two boys with NF2 13 and 6 , and I make 3 .

> > Glad you found us !

> > Marcus from Up here down under

> >>

> >

>

Report post · October 19, 2000

Rosemary

Ill get back to you later today, they have problems and I need time to type

it all. WORK CALLS !!!!

Marcus

> Marcus,

> You have kids........

> What symptoms do your boys have?

> I have a 7yearold boy with multiple brain tumours and cataracts?

> what is it like for Nf surgery up there?

> rosemary.

>

> on 20/10/00 12:10 AM, Marcus at marcusmc@... wrote:

>

> > Hi Georgia !

> > Im Marcus from Surfers Paradise , you'll find plenty of great people

here.

> > If you have NF2 its the place be .. Hmmm !!!!

> > I have two boys with NF2 13 and 6 , and I make 3 .

> > Glad you found us !

> > Marcus from Up here down under

> >>

> >

>

Report post · October 19, 2000

Rosemary

Ill get back to you later today, they have problems and I need time to type

it all. WORK CALLS !!!!

Marcus

> Marcus,

> You have kids........

> What symptoms do your boys have?

> I have a 7yearold boy with multiple brain tumours and cataracts?

> what is it like for Nf surgery up there?

> rosemary.

>

> on 20/10/00 12:10 AM, Marcus at marcusmc@... wrote:

>

> > Hi Georgia !

> > Im Marcus from Surfers Paradise , you'll find plenty of great people

here.

> > If you have NF2 its the place be .. Hmmm !!!!

> > I have two boys with NF2 13 and 6 , and I make 3 .

> > Glad you found us !

> > Marcus from Up here down under

> >>

> >

>

Report post · October 19, 2000

Hello Georgia

Welcome to the Crew. You certainly have been dumped on, with NF2. I can

imagine your anguish. My boys (29 & 30) and I were only diagnosed this

April. So for us we have had many years being blissfully sublime to the

reality of NF2.

This Crew will be very important to you and your husband. The majority of

the members and their first hand experience comes from the USA, where you

will quickly find is far advanced in the treatment of NF2. Many members

also have young children.

The support you get will amaze you.

I'm going off the Crew e-mail list for a while, but hope to back soon and

reading your posts.

ine

new member

> Hello everyone,

>

> My name is Georgia son and I am a new member of the Crew. I live in

Melbourne, Australia - where the Olympics weren't. My two daughters have

NF2, as do my sister, both brothers, my only nephew, my mother and her

brother and sister, we presume my three cousins, my grandmother....... My

aunt was diagnosed 5 1/2 years ago after being very hard of hearing for many

years. Next came my mother, and then I had a CT which gave the all clear.

My husband and I promptly celebrated by buying a house and welcoming a

mortgage into the family. Shortly after, the family neurosurgeon

Briggs (he has the same name as my uncle with NF2!) organised an MRI and

this showed the two large ANs. I had surgery 5 years ago and part of the

left tumour was removed. They took the bit that was pushing the brainstem

but had to leave the rrest as it was twined around the facial nerve. I am

left with about 70% hearing, and the facial paralysis is only obvious when I

talk. I have no vestibular balance at all and because I am almost blind in

my left eye - a result of childhood lazy eye - I wobble a bit. I still have

a lot of pain, and the fatigue is shocking.but apart from that I'm fine!

>

> My main concern at the moment is my elder daughter Katrina The other girl,

Madel, has two small tumours which have never caused us a moment's worry,

apart from the initial panic, and she is the healthiest, bounciest 10 year

old you could find. Katrina is 11 and has a couple of nasty problems. The

two tumours in her head are not a problem, but a year ago she had a tumour

removed from C5, where it was beginning to interfere with the movement of

her left arm, and she is left handed. She sprouted two tumours at C2 in

the 6 months before that. However she has a big plexiform neurofibroma

within the sciatic nerve and this as a huge concern. Prof. Rosenfeld tried

to remove it 18 months ago because the MRI didn't show the full extent of

it. but he was only able to do a laminectomy to relieve some pressure. The

PN is about 6 inches long and shaped like a sausage. We have spoken to

doctors here and in Sydney, but nobody in Australia can offer any hope. The

surgery to remove it would involve removing half of her pelvis, and would

leave her doubly incontinent, infertile and in a wheelchair. Her last MRI a

month ago showed that this PN had not grown in the last few months, which is

the good news - the bad news is that another one seems to be growing on the

left side. This did not cheer us up at all.

>

> Everyone here says that plexiform neurofibromas are very rare. Does

anyone else have one, and is there a treatment or cure? We have got the

east coast of Australia and a good part of England on prayer duty and I am

sure this helps.

> Our girls are the most precious people - I had an ovarian cyst rupture at

13 and problems with the other ovary and was told I could not have children,

so two in 14 months is not bad! My husband and I can cope with my

problems, but we find that dealing with the girls' problems is sometimes

almost too much. We will do anything to help them.

>

> If anyone can help with the PNs, I would be most grateful. .

>

> Georgia son

>

Report post · October 19, 2000