Re: New Member A. Kantor <kantor@...>

[Guest guest]

Welcome Tim and :

You have come to the right place for understanding, information, humor,

compassion, and courageous people. Sounds like you are not new to the

disorder and still go on with your lives. You are where you belong for

support. Hugs, Vicki

[Guest guest]

Welcome Jonathon!! .

I read your bio with great interest. I, too, am part of 3 generations of

known NF2. If you have any questions, please ask. You may have to wait for

replies as everyone is on a different computer schedule and we are in a lot

of different time zones. This is a long post. Sorry to all of you who

have heard this before.

There is a lot of different opinions here as there are people in regards

to treating tumors. I feel you can add a lot to this group as your family

has been through a lot and have plenty to share .

My mother, Hawkins, is deaf from having accoustic neuromas

surgically removed. The first was done in 1980 in Pittsburgh. One side did

regrow and was removed. In 1991 (?), she was the 22nd person to have the

Auditory Brainstem Implant. It is successful in giving her some sound. She

has also had several surgeries to correct facial and eye problems. She is

on the NF2 crew but is currently off the list as she is out of town.

My parents had five daughters. Three of us have NF2.

My name is (# 4). I was diagnosed with NF2 in June of last year. On

August 8, I had the accoustic neuroma on my right side surgically removed.

It was about 8mm. They were able to preserve the auditory and facial nerves

on that side. They removed the vestibular nerve then as over 90% of

regrowth occurs on that nerve. This was done at the House Ear Institute by

Dr Brackmann and Dr Hitselberger.

On September 20, I had a 5cm meningioma removed from the superior

parasaggital sinus. I had this done at HEI by Dr. J. Day. The tumor

had doubled in size in a couple of monthes. It invaded the skull bone so I

now I have a piece of titanium mesh plate. The tumor destoyed one of the

main veins. A shunt was put in on the 26th to reduce intracranial pressure.

My vision is still recovering from the pappilladema. I was put on Neurotin

then to keep from having seizures. I had an adverse reaction to the

Dalantin. My neurologist recently weaned me off the Neurotin and onto

Depakote. I feel better on the Depakote and don't have to take as many

pills.

We are currently seeing a geneticist about having our two daughters tested.

If you get a chance, please elaborate on your experience with genetic

testing.

This summer I plan on traveling back to LA to have Brackmann and

Hitselberger remove the other accoustic neuroma.

My baby sister, Carolyn (# 5), was the first of us siblings to be

diagnosed. Last year, she had both of her accoustic neuromas removed. They

were each almost 1cm. They were able to save her hearing and facial nerves.

This was done at HEI by Drs. Brackmann & Hitselberger.. She is on the NF2

crew but rarely reponds. She has three small children that keep her

hopping.

One of my old sisters, I mean older sisters, Chancey (#2), was also

diagnosed last year. She has had both of her tumors removed at HEI by

Brackmann and Hitselberger. Her facial nerves were preserved. She lost her

hearing on the left side. The tumor was almost 2cm. They wanted her to

consider a decompression on the right side as the best chance of saving the

hearing longer. She refused and they were able to save the hearing on the

right side.

has two children, & . Both tested positive last

year. Both have had one accoustic neuroma removed. They were able to save

facial nerves. They were able to save 's hearing but not 's.

They are scheduled to have the second one done in March. If unable to save

Jeffery's hearing they will put in an ABI. , also, has tumors on her

occulormotor nerves.

As you can see, we have had quite an eventful 2000. So much for the Year of

Jubilee.

Many Blessings,

[Guest guest]

Welcome Jonathon!! .

I read your bio with great interest. I, too, am part of 3 generations of

known NF2. If you have any questions, please ask. You may have to wait for

replies as everyone is on a different computer schedule and we are in a lot

of different time zones. This is a long post. Sorry to all of you who

have heard this before.

There is a lot of different opinions here as there are people in regards

to treating tumors. I feel you can add a lot to this group as your family

has been through a lot and have plenty to share .

My mother, Hawkins, is deaf from having accoustic neuromas

surgically removed. The first was done in 1980 in Pittsburgh. One side did

regrow and was removed. In 1991 (?), she was the 22nd person to have the

Auditory Brainstem Implant. It is successful in giving her some sound. She

has also had several surgeries to correct facial and eye problems. She is

on the NF2 crew but is currently off the list as she is out of town.

My parents had five daughters. Three of us have NF2.

My name is (# 4). I was diagnosed with NF2 in June of last year. On

August 8, I had the accoustic neuroma on my right side surgically removed.

It was about 8mm. They were able to preserve the auditory and facial nerves

on that side. They removed the vestibular nerve then as over 90% of

regrowth occurs on that nerve. This was done at the House Ear Institute by

Dr Brackmann and Dr Hitselberger.

On September 20, I had a 5cm meningioma removed from the superior

parasaggital sinus. I had this done at HEI by Dr. J. Day. The tumor

had doubled in size in a couple of monthes. It invaded the skull bone so I

now I have a piece of titanium mesh plate. The tumor destoyed one of the

main veins. A shunt was put in on the 26th to reduce intracranial pressure.

My vision is still recovering from the pappilladema. I was put on Neurotin

then to keep from having seizures. I had an adverse reaction to the

Dalantin. My neurologist recently weaned me off the Neurotin and onto

Depakote. I feel better on the Depakote and don't have to take as many

pills.

We are currently seeing a geneticist about having our two daughters tested.

If you get a chance, please elaborate on your experience with genetic

testing.

This summer I plan on traveling back to LA to have Brackmann and

Hitselberger remove the other accoustic neuroma.

My baby sister, Carolyn (# 5), was the first of us siblings to be

diagnosed. Last year, she had both of her accoustic neuromas removed. They

were each almost 1cm. They were able to save her hearing and facial nerves.

This was done at HEI by Drs. Brackmann & Hitselberger.. She is on the NF2

crew but rarely reponds. She has three small children that keep her

hopping.

One of my old sisters, I mean older sisters, Chancey (#2), was also

diagnosed last year. She has had both of her tumors removed at HEI by

Brackmann and Hitselberger. Her facial nerves were preserved. She lost her

hearing on the left side. The tumor was almost 2cm. They wanted her to

consider a decompression on the right side as the best chance of saving the

hearing longer. She refused and they were able to save the hearing on the

right side.

has two children, & . Both tested positive last

year. Both have had one accoustic neuroma removed. They were able to save

facial nerves. They were able to save 's hearing but not 's.

They are scheduled to have the second one done in March. If unable to save

Jeffery's hearing they will put in an ABI. , also, has tumors on her

occulormotor nerves.

As you can see, we have had quite an eventful 2000. So much for the Year of

Jubilee.

Many Blessings,

[Guest guest]

Welcome Jonathon!! .

I read your bio with great interest. I, too, am part of 3 generations of

known NF2. If you have any questions, please ask. You may have to wait for

replies as everyone is on a different computer schedule and we are in a lot

of different time zones. This is a long post. Sorry to all of you who

have heard this before.

There is a lot of different opinions here as there are people in regards

to treating tumors. I feel you can add a lot to this group as your family

has been through a lot and have plenty to share .

My mother, Hawkins, is deaf from having accoustic neuromas

surgically removed. The first was done in 1980 in Pittsburgh. One side did

regrow and was removed. In 1991 (?), she was the 22nd person to have the

Auditory Brainstem Implant. It is successful in giving her some sound. She

has also had several surgeries to correct facial and eye problems. She is

on the NF2 crew but is currently off the list as she is out of town.

My parents had five daughters. Three of us have NF2.

My name is (# 4). I was diagnosed with NF2 in June of last year. On

August 8, I had the accoustic neuroma on my right side surgically removed.

It was about 8mm. They were able to preserve the auditory and facial nerves

on that side. They removed the vestibular nerve then as over 90% of

regrowth occurs on that nerve. This was done at the House Ear Institute by

Dr Brackmann and Dr Hitselberger.

On September 20, I had a 5cm meningioma removed from the superior

parasaggital sinus. I had this done at HEI by Dr. J. Day. The tumor

had doubled in size in a couple of monthes. It invaded the skull bone so I

now I have a piece of titanium mesh plate. The tumor destoyed one of the

main veins. A shunt was put in on the 26th to reduce intracranial pressure.

My vision is still recovering from the pappilladema. I was put on Neurotin

then to keep from having seizures. I had an adverse reaction to the

Dalantin. My neurologist recently weaned me off the Neurotin and onto

Depakote. I feel better on the Depakote and don't have to take as many

pills.

We are currently seeing a geneticist about having our two daughters tested.

If you get a chance, please elaborate on your experience with genetic

testing.

This summer I plan on traveling back to LA to have Brackmann and

Hitselberger remove the other accoustic neuroma.

My baby sister, Carolyn (# 5), was the first of us siblings to be

diagnosed. Last year, she had both of her accoustic neuromas removed. They

were each almost 1cm. They were able to save her hearing and facial nerves.

This was done at HEI by Drs. Brackmann & Hitselberger.. She is on the NF2

crew but rarely reponds. She has three small children that keep her

hopping.

One of my old sisters, I mean older sisters, Chancey (#2), was also

diagnosed last year. She has had both of her tumors removed at HEI by

Brackmann and Hitselberger. Her facial nerves were preserved. She lost her

hearing on the left side. The tumor was almost 2cm. They wanted her to

consider a decompression on the right side as the best chance of saving the

hearing longer. She refused and they were able to save the hearing on the

right side.

has two children, & . Both tested positive last

year. Both have had one accoustic neuroma removed. They were able to save

facial nerves. They were able to save 's hearing but not 's.

They are scheduled to have the second one done in March. If unable to save

Jeffery's hearing they will put in an ABI. , also, has tumors on her

occulormotor nerves.

As you can see, we have had quite an eventful 2000. So much for the Year of

Jubilee.

Many Blessings,

[Guest guest]

The tumor

had doubled in size in a couple of monthes. It invaded the

skull bone so I

now I have a piece of titanium mesh plate. The tumor destoyed

one of the

main veins.

Hi ! You sound good!

I have a question....did you have "bumps" on your head from the

intrusion?

Carol

[Guest guest]

wrote:

The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.

Carol asked -

Hi ! You sound good! I have a question....did you have "bumps" on your head from the intrusion? Carol responding -

Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back.

I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call.

Blessings,

[Guest guest]

These tumors usually grow @ 1.0-1.5mm per year. How could it have doubled in a few months? Is it possible that dfifferent MRI protocols were being used and therefore latest is more accurate and they were not seeing whole tumor previous time around?

Re: New Member A. Kantor

wrote:

The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.

Carol asked -

Hi ! You sound good! I have a question....did you have " bumps " on your head from the intrusion? Carol responding -

Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back.

I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call.

Blessings,

[Guest guest]

These tumors usually grow @ 1.0-1.5mm per year. How could it have doubled in a few months? Is it possible that dfifferent MRI protocols were being used and therefore latest is more accurate and they were not seeing whole tumor previous time around?

Re: New Member A. Kantor

wrote:

The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.

Carol asked -

Hi ! You sound good! I have a question....did you have " bumps " on your head from the intrusion? Carol responding -

Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back.

I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call.

Blessings,

[Guest guest]

These tumors usually grow @ 1.0-1.5mm per year. How could it have doubled in a few months? Is it possible that dfifferent MRI protocols were being used and therefore latest is more accurate and they were not seeing whole tumor previous time around?

Re: New Member A. Kantor

wrote:

The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.

Carol asked -

Hi ! You sound good! I have a question....did you have " bumps " on your head from the intrusion? Carol responding -

Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back.

I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call.

Blessings,

[Guest guest]

Jonathon inquired -

These tumors usually grow @ 1.0-1.5mm per year. How could it have doubled in a few months? Is it possible that dfifferent MRI protocols were being used and therefore latest is more accurate and they were not seeing whole tumor previous time around?

responds -

All of my MRIs were done at the same place, using the same standards. They were reviewed by different radiololgist here but I always send a copy of my films to LA for their review. They have seen things that the Drs here have missed.

It was always my understanding that meningiomas are a slow growing tumor. I questioned a few doctors in LA about them being slow growing. One said that was bullsh**! The other did not wish to offer an explanation as to it's sudden growth.

I, also, took a copy of all my films with me to Pittsburgh when I saw the neuro-opthamalogist and the neurologist. The neuro-opthamolgist thought it was "quite impressive" the way it grew. My husband told him that depends on which side of the fence you are standing.

One could tell with just lay eyes that there was a big growth diffrence. The difference could be seen in different "poses".

My theory is this - NF2 is a rare and strange disorder. It manifests itself differently in each individual and even differently within family. Maybe something happened to the brain during the first AN removal that would trigger growth. My husband's think I just have too much female hormones which fueled the fire.

Many blessings,

[Guest guest]

Seeing a geneticist for your children is a two edged sword. One can go on

testing each year or so thru MRI, ABR and Audiograms and then intervene when

it becomes necessary or you can take blood tests and determine who has

inherited the gene. it is a great relief to those who are not affected. But

for those who are it as you know is like walking around with a bomb shell in

your pocket. Two of my children were tested when they were very young.

Believe it or not we never told them one was NF2 and the other not. They

never asked and understood well why they were taking the tests. We subjected

both to regular MRI ABR and Audiograms. We had decided that if they asked

we would tell them.... but they didn't. We only told my boys when they were

in their late teens that one was and the other not only because it became

apparent that intervention time was approaching. The one who was affected

was grateful for not knowing sooner. The other who was negative ( and by the

way who today is a doctor) said he would rather have known that he wasn't

since day one.

There is 15 years difference between them and my 16 year old daughter. She

became aware last year that there was a potential problem brewing because of

elevated ABR readings and tiny spot on MRI. We followed it closely for one

year and then decided on surgery which took place in November. She is very

familiar with NF2 having done several school projects on the disorder over

the years and she was an integral part of our decision making and ultimate

choice of surgery.

If I had to do it all over again I would do exactly the same thing. It was

more important to protect the affected one than to put the other at ease.

The affected one has the greater cross to bear.

The only real advantage in testing existing children is to give you the

motivation to have regular testing. If however the testing will be done

anyhow it is not as important. Also important for them to know so that they

can make future family planning decisions. My affected son is now by the way

looking at preimplantation testing as he and his wife would like to start a

family. That is another chapter for another time. We are just trying to get

it all together for him now. Feel free to write.

Re: New Member A. Kantor

>Welcome Jonathon!! .

>

>I read your bio with great interest. I, too, am part of 3 generations of

>known NF2. If you have any questions, please ask. You may have to wait

for

>replies as everyone is on a different computer schedule and we are in a lot

>of different time zones. This is a long post. Sorry to all of you who

>have heard this before.

>

>There is a lot of different opinions here as there are people in regards

>to treating tumors. I feel you can add a lot to this group as your family

>has been through a lot and have plenty to share .

>

>My mother, Hawkins, is deaf from having accoustic neuromas

>surgically removed. The first was done in 1980 in Pittsburgh. One side

did

>regrow and was removed. In 1991 (?), she was the 22nd person to have the

>Auditory Brainstem Implant. It is successful in giving her some sound.

She

>has also had several surgeries to correct facial and eye problems. She is

>on the NF2 crew but is currently off the list as she is out of town.

>

>My parents had five daughters. Three of us have NF2.

>

>My name is (# 4). I was diagnosed with NF2 in June of last year. On

>August 8, I had the accoustic neuroma on my right side surgically removed.

>It was about 8mm. They were able to preserve the auditory and facial

nerves

>on that side. They removed the vestibular nerve then as over 90% of

>regrowth occurs on that nerve. This was done at the House Ear Institute by

>Dr Brackmann and Dr Hitselberger.

>

>On September 20, I had a 5cm meningioma removed from the superior

>parasaggital sinus. I had this done at HEI by Dr. J. Day. The tumor

>had doubled in size in a couple of monthes. It invaded the skull bone so I

>now I have a piece of titanium mesh plate. The tumor destoyed one of the

>main veins. A shunt was put in on the 26th to reduce intracranial

pressure.

>My vision is still recovering from the pappilladema. I was put on Neurotin

>then to keep from having seizures. I had an adverse reaction to the

>Dalantin. My neurologist recently weaned me off the Neurotin and onto

>Depakote. I feel better on the Depakote and don't have to take as many

>pills.

>

>We are currently seeing a geneticist about having our two daughters tested.

>If you get a chance, please elaborate on your experience with genetic

>testing.

>

>This summer I plan on traveling back to LA to have Brackmann and

>Hitselberger remove the other accoustic neuroma.

>

>My baby sister, Carolyn (# 5), was the first of us siblings to be

>diagnosed. Last year, she had both of her accoustic neuromas removed.

They

>were each almost 1cm. They were able to save her hearing and facial

nerves.

>This was done at HEI by Drs. Brackmann & Hitselberger.. She is on the NF2

>crew but rarely reponds. She has three small children that keep her

>hopping.

>

>One of my old sisters, I mean older sisters, Chancey (#2), was

also

>diagnosed last year. She has had both of her tumors removed at HEI by

>Brackmann and Hitselberger. Her facial nerves were preserved. She lost

her

>hearing on the left side. The tumor was almost 2cm. They wanted her to

>consider a decompression on the right side as the best chance of saving the

>hearing longer. She refused and they were able to save the hearing on the

>right side.

>

> has two children, & . Both tested positive last

>year. Both have had one accoustic neuroma removed. They were able to save

>facial nerves. They were able to save 's hearing but not 's.

>They are scheduled to have the second one done in March. If unable to

save

>Jeffery's hearing they will put in an ABI. , also, has tumors on

her

>occulormotor nerves.

>

>As you can see, we have had quite an eventful 2000. So much for the Year

of

>Jubilee.

>

>Many Blessings,

>

>

>

>

>

>

>

[Guest guest]

Seeing a geneticist for your children is a two edged sword. One can go on

testing each year or so thru MRI, ABR and Audiograms and then intervene when

it becomes necessary or you can take blood tests and determine who has

inherited the gene. it is a great relief to those who are not affected. But

for those who are it as you know is like walking around with a bomb shell in

your pocket. Two of my children were tested when they were very young.

Believe it or not we never told them one was NF2 and the other not. They

never asked and understood well why they were taking the tests. We subjected

both to regular MRI ABR and Audiograms. We had decided that if they asked

we would tell them.... but they didn't. We only told my boys when they were

in their late teens that one was and the other not only because it became

apparent that intervention time was approaching. The one who was affected

was grateful for not knowing sooner. The other who was negative ( and by the

way who today is a doctor) said he would rather have known that he wasn't

since day one.

There is 15 years difference between them and my 16 year old daughter. She

became aware last year that there was a potential problem brewing because of

elevated ABR readings and tiny spot on MRI. We followed it closely for one

year and then decided on surgery which took place in November. She is very

familiar with NF2 having done several school projects on the disorder over

the years and she was an integral part of our decision making and ultimate

choice of surgery.

If I had to do it all over again I would do exactly the same thing. It was

more important to protect the affected one than to put the other at ease.

The affected one has the greater cross to bear.

The only real advantage in testing existing children is to give you the

motivation to have regular testing. If however the testing will be done

anyhow it is not as important. Also important for them to know so that they

can make future family planning decisions. My affected son is now by the way

looking at preimplantation testing as he and his wife would like to start a

family. That is another chapter for another time. We are just trying to get

it all together for him now. Feel free to write.

Re: New Member A. Kantor

>Welcome Jonathon!! .

>

>I read your bio with great interest. I, too, am part of 3 generations of

>known NF2. If you have any questions, please ask. You may have to wait

for

>replies as everyone is on a different computer schedule and we are in a lot

>of different time zones. This is a long post. Sorry to all of you who

>have heard this before.

>

>There is a lot of different opinions here as there are people in regards

>to treating tumors. I feel you can add a lot to this group as your family

>has been through a lot and have plenty to share .

>

>My mother, Hawkins, is deaf from having accoustic neuromas

>surgically removed. The first was done in 1980 in Pittsburgh. One side

did

>regrow and was removed. In 1991 (?), she was the 22nd person to have the

>Auditory Brainstem Implant. It is successful in giving her some sound.

She

>has also had several surgeries to correct facial and eye problems. She is

>on the NF2 crew but is currently off the list as she is out of town.

>

>My parents had five daughters. Three of us have NF2.

>

>My name is (# 4). I was diagnosed with NF2 in June of last year. On

>August 8, I had the accoustic neuroma on my right side surgically removed.

>It was about 8mm. They were able to preserve the auditory and facial

nerves

>on that side. They removed the vestibular nerve then as over 90% of

>regrowth occurs on that nerve. This was done at the House Ear Institute by

>Dr Brackmann and Dr Hitselberger.

>

>On September 20, I had a 5cm meningioma removed from the superior

>parasaggital sinus. I had this done at HEI by Dr. J. Day. The tumor

>had doubled in size in a couple of monthes. It invaded the skull bone so I

>now I have a piece of titanium mesh plate. The tumor destoyed one of the

>main veins. A shunt was put in on the 26th to reduce intracranial

pressure.

>My vision is still recovering from the pappilladema. I was put on Neurotin

>then to keep from having seizures. I had an adverse reaction to the

>Dalantin. My neurologist recently weaned me off the Neurotin and onto

>Depakote. I feel better on the Depakote and don't have to take as many

>pills.

>

>We are currently seeing a geneticist about having our two daughters tested.

>If you get a chance, please elaborate on your experience with genetic

>testing.

>

>This summer I plan on traveling back to LA to have Brackmann and

>Hitselberger remove the other accoustic neuroma.

>

>My baby sister, Carolyn (# 5), was the first of us siblings to be

>diagnosed. Last year, she had both of her accoustic neuromas removed.

They

>were each almost 1cm. They were able to save her hearing and facial

nerves.

>This was done at HEI by Drs. Brackmann & Hitselberger.. She is on the NF2

>crew but rarely reponds. She has three small children that keep her

>hopping.

>

>One of my old sisters, I mean older sisters, Chancey (#2), was

also

>diagnosed last year. She has had both of her tumors removed at HEI by

>Brackmann and Hitselberger. Her facial nerves were preserved. She lost

her

>hearing on the left side. The tumor was almost 2cm. They wanted her to

>consider a decompression on the right side as the best chance of saving the

>hearing longer. She refused and they were able to save the hearing on the

>right side.

>

> has two children, & . Both tested positive last

>year. Both have had one accoustic neuroma removed. They were able to save

>facial nerves. They were able to save 's hearing but not 's.

>They are scheduled to have the second one done in March. If unable to

save

>Jeffery's hearing they will put in an ABI. , also, has tumors on

her

>occulormotor nerves.

>

>As you can see, we have had quite an eventful 2000. So much for the Year

of

>Jubilee.

>

>Many Blessings,

>

>

>

>

>

>

>

[Guest guest]

Sorry to hear about your son. He ( and you) has a heavy burden to carry. Have just found this site and its great....a little too much chit chat mixed in. Makes finding nf2 medical stuff more difficult.

From what I've learned, new mutations do not take a different course. They appear to be worse only because they are diagnosed only as a result of problems and are usually therefore bigger than inherited form. So many inherited ones are discovered at an earlier stage ( as in the case of my family) because you are looking for them prior to symptoms arising. I and my two children were diagnosed as a result of family screening and genetic tests, were asymptomatic at diagnosis with excellent bilateral hearing. Tumors were small and dealt with at a very early stage.

Yes sudden spurts do happen even in inherited form. From 1995-1997 my son's second AN grew approximately 1cm.

Re: New Member A. Kantor

wrote:The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.Carol asked - Hi ! You sound good! I have a question....did you have "bumps" on your head from the intrusion? Carol responding - Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back. I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call. Blessings,

[Guest guest]

How dare anyone chastise you! You're responsibility is only to yourself and

your family. Do what you think is best for them .

Your younger kids are very young and testing at this stage will not alter

your course very much one way or the other. Simple tests such as ABR and

Audiograms and the occasional MRI will spot any problems from getting away

undetected. Unusual from my experience to have very young children show

symptoms. Your 16 year old is now at the stage where NF2 regularly rears its

ugly head. Again you can monitor and/or test. She however must now be

watched much more closely.

Re: New Member A. Kantor

> In a message dated 1/17/01 11:06:18 AM Pacific Standard Time,

> kantor@... writes:

>

> << Seeing a geneticist for your children is a two edged sword. >>

> athon, First of all Welcome from Lori Jo in MI I read your letter

with

> interest. I just discussed having my children tested yesterday. My oldest

is

> 16 and I have a almost 3 year old and an almost 2 year old. I was told

there

> is a test to determine if they carry this or not. My oldest is well aware

of

> the NF2 and what could happen if she does have it as I do. The younger two

I

> don't know what I will do at this point. I am torn trying to decide if

> finding out that any of them have it will be worse than waiting. The

oldest

> has agreed to do whatever we think is best at this point. As you can tell

I

> am very torn as what to do. I fear knowing and yet I fear not knowing

along

> with the fact that finding this early on is assurance that we can at least

> try to plan more for the future. I hope this does not sound stupid to

anyone.

> I have had a few people totally chastise me for having 2 other children

after

> I was diagnosed so I guess I am leery sharing that information. But the

crew

> has been supportive to me and this is the only place I can vent these

> feelings. Thanks for you time. Lori Jo

>

>

>

>

[Guest guest]

Lori Jo,

Here I am goofing off at work again!

We seem to have a lot in common, except I am a

spontaneous mutation (I should name my fantasy

football team the Spontaneous Mutants...).

I have a fairly mild case as well. So far, granted...

but that is what I pray for- that Reagan will have a

mild case as well. I don't think she will be as lucky

as I have been, and that is my fear.

Let's hope this is the case with our kids! And keep

giving it to the ignorant idiots who butt in to your

life..... Maybe I can make you an Honorary Obnoxious

Texan!

Okay, I'm really going back to work now!

--- PsySmoke64@... wrote:

> , Yes I really gave it to the jerks that said

> that to me! I even had a

> few people tell me that the many miscarriages I had

> and inability to carry a

> child for 12 years was God's way of not allowing me

> to pass this on! What

> fools! MY kids are the best thing I ever did in my

> life and all of them are

> healthy and wonderful. My oldest is willing to have

> the MRIs and the blood

> test to find out if she either has it or carries it.

> I was 30 when diagnosed

> and for some reason in out family the NF2 does not

> evidence itself until this

> time. I really do think it would be better to know

> what is ahead now too. My

> Mom has NF2 but her case if much worse than mine.

> Dr. Katrush told me that

> the thing that is so puzzling about this disease is

> that it is never the same

> in each case. My tumors are very small and have done

> nothing but sit there

> for years now. I would hope if my kids do have it

> that they be as lucky as I

> have in that regard. Then again, there is no

> gurantee in that is there? I

> think that my Mom has felt that it is her fault that

> I have gone through this

> turmoil with testing and trying to cope with the

> fact that I have it. I have

> never blamed anyone for having this it is just a

> fact in my life to deal

> with. When I was diagnosed I was crushed and

> terrified. I am certain if we

> found out that any of the kids have it we would all

> band together to deal

> with it. I agree with you that finding this early on

> is the best idea. Thank

> you for writing to me and putting some of my fears

> to rest. I am so glad I

> have found the crew and all of the support here.

> Take care. Lori Jo

>

>

>

__________________________________________________

[Guest guest]

Lori Jo,

Here I am goofing off at work again!

We seem to have a lot in common, except I am a

spontaneous mutation (I should name my fantasy

football team the Spontaneous Mutants...).

I have a fairly mild case as well. So far, granted...

but that is what I pray for- that Reagan will have a

mild case as well. I don't think she will be as lucky

as I have been, and that is my fear.

Let's hope this is the case with our kids! And keep

giving it to the ignorant idiots who butt in to your

life..... Maybe I can make you an Honorary Obnoxious

Texan!

Okay, I'm really going back to work now!

--- PsySmoke64@... wrote:

> , Yes I really gave it to the jerks that said

> that to me! I even had a

> few people tell me that the many miscarriages I had

> and inability to carry a

> child for 12 years was God's way of not allowing me

> to pass this on! What

> fools! MY kids are the best thing I ever did in my

> life and all of them are

> healthy and wonderful. My oldest is willing to have

> the MRIs and the blood

> test to find out if she either has it or carries it.

> I was 30 when diagnosed

> and for some reason in out family the NF2 does not

> evidence itself until this

> time. I really do think it would be better to know

> what is ahead now too. My

> Mom has NF2 but her case if much worse than mine.

> Dr. Katrush told me that

> the thing that is so puzzling about this disease is

> that it is never the same

> in each case. My tumors are very small and have done

> nothing but sit there

> for years now. I would hope if my kids do have it

> that they be as lucky as I

> have in that regard. Then again, there is no

> gurantee in that is there? I

> think that my Mom has felt that it is her fault that

> I have gone through this

> turmoil with testing and trying to cope with the

> fact that I have it. I have

> never blamed anyone for having this it is just a

> fact in my life to deal

> with. When I was diagnosed I was crushed and

> terrified. I am certain if we

> found out that any of the kids have it we would all

> band together to deal

> with it. I agree with you that finding this early on

> is the best idea. Thank

> you for writing to me and putting some of my fears

> to rest. I am so glad I

> have found the crew and all of the support here.

> Take care. Lori Jo

>

>

>

__________________________________________________

[Guest guest]

First of all, the growth rates I heard were 2mm per year as average; but I know mine grew like that for 5 years, from 2mm to 1.0 cm-and then in one year it doubled to 2 cm-then it slowed again. Also, when I had a cyst removed, the growth of the tumor went wild within just a month. Marie

Re: New Member A. Kantor

wrote:

The tumor had doubled in size in a couple of monthes. It invaded the skull bone so I now I have a piece of titanium mesh plate. The tumor destoyed one of the main veins.

Carol asked -

Hi ! You sound good! I have a question....did you have " bumps " on your head from the intrusion? Carol responding -

Hi Carol!! Things happened so fast. I don't remember feeling any bumps then. I do remember rubbing the top of my head a lot as it hurt and rubbing it made it feel better or at least it soothed me. If you look at my MRI films you could see where one piece of the skull looked like it was starting to peel back.

I do have one whopper of a bump on my head now. It feels like a fluid sack on top of my plate. It has decreased in size. It is one of those things I should be calling LA and asking more questions about but I'm sick of doctors now. My new neurologist was to call and talk to them so I will find out in March. I'm in no hurry, if it is important I'm sure they will call.

Blessings,

[Guest guest]

I was told that Dr. Dilys Parry has studied whether trauma to the nerve-and surgery is trama-accentuates growth in some cases. Marie

Re: New Member A. Kantor

Jonathon inquired -

These tumors usually grow @ 1.0-1.5mm per year. How could it have doubled in a few months? Is it possible that dfifferent MRI protocols were being used and therefore latest is more accurate and they were not seeing whole tumor previous time around?

responds -

All of my MRIs were done at the same place, using the same standards. They were reviewed by different radiololgist here but I always send a copy of my films to LA for their review. They have seen things that the Drs here have missed.

It was always my understanding that meningiomas are a slow growing tumor. I questioned a few doctors in LA about them being slow growing. One said that was bullsh**! The other did not wish to offer an explanation as to it's sudden growth.

I, also, took a copy of all my films with me to Pittsburgh when I saw the neuro-opthamalogist and the neurologist. The neuro-opthamolgist thought it was " quite impressive " the way it grew. My husband told him that depends on which side of the fence you are standing.

One could tell with just lay eyes that there was a big growth diffrence. The difference could be seen in different " poses " .

My theory is this - NF2 is a rare and strange disorder. It manifests itself differently in each individual and even differently within family. Maybe something happened to the brain during the first AN removal that would trigger growth. My husband's think I just have too much female hormones which fueled the fire.

Many blessings,

[Guest guest]

Carol,

My neurologist switched me from neurotin to depakote. I take only 2 pills a day rather than the 3. That is a big deal for me as I don't like taking pills and I tend to forget the afternoon pill. My neurologist, also, specializes in migrain management. She said the depakote also helps with head pain.

Many Blessings,

SArah

[Guest guest]

I think so. I still get sharp spasms around the incision area. I assume that is just the body's way of healing. I hope you find answers.

Hugs,

Re: New Member A. Kantor

Does it seem to be helping ? Carol Larry & Orr wrote:

Carol, My neurologist switched me from neurotin to depakote. I take only 2 pills a day rather than the 3. That is a big deal for me as I don't like taking pills and I tend to forget the afternoon pill. My neurologist, also, specializes in migrain management. She said the depakote also helps with head pain. Many Blessings,SArah