Re: questionnaire

[Guest guest]

Thankfully diagnosis is getting easier and better. The further back you go the more common are stories such as yours. My late mother went thru similar problems including being sent to a psychiatrist as it "was all in her head". Again, we must be appreciative that these horror stories are less frequent today. Yes the questionnaire will make reference to date of diagnosis and symptoms at that time. Thanks for the input and feel free to send more suggestions.

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Jane. Please send me your e-mail address. Thanks.

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Jane. Please send me your e-mail address. Thanks.

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Jane. Please send me your e-mail address. Thanks.

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

It is jdewnf2s@...

There you go Jon.

Jane

Re: questionnaire

Jane. Please send me your e-mail address. Thanks.

Re: questionnaire

Thanks for the compliment. Questionnaire is in process of being developed. Any questions you'd like to see asked? Still finding new people and telling them about it and encouraging them to reply when received. Must tell you some people are very skeptical and I understand that. Many have never heard of me and are not used to such direct approaches. I will count you in.

[Guest guest]

Right, but I have known I had cataracts for 10 years; why, JUST since surgery, is my vision suddenly very much worse? marie

Re: questionnaire

Tumors may not be the only thing that causes eye problems. Over 90% of NF2ers have ocular abnormalities, cataracts being the most common. Anyone of these abnormalities may cause problems.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Right, but I have known I had cataracts for 10 years; why, JUST since surgery, is my vision suddenly very much worse? marie

Re: questionnaire

Tumors may not be the only thing that causes eye problems. Over 90% of NF2ers have ocular abnormalities, cataracts being the most common. Anyone of these abnormalities may cause problems.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Right, but I have known I had cataracts for 10 years; why, JUST since surgery, is my vision suddenly very much worse? marie

Re: questionnaire

Tumors may not be the only thing that causes eye problems. Over 90% of NF2ers have ocular abnormalities, cataracts being the most common. Anyone of these abnormalities may cause problems.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

-----Original Message-----Marie wrote:

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; l

\l/

Jimmy replies:

sorry with you medical fact sticklers,but I gotta agree with Marie.I lost most of my sight fromAN surgeries. Out of two An's and one regrowth,I only had one AN surgery that didn't effect my eyesight.

Jimmy

[Guest guest]

-----Original Message-----Marie wrote:

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; l

\l/

Jimmy replies:

sorry with you medical fact sticklers,but I gotta agree with Marie.I lost most of my sight fromAN surgeries. Out of two An's and one regrowth,I only had one AN surgery that didn't effect my eyesight.

Jimmy

[Guest guest]

-----Original Message-----Marie wrote:

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; l

\l/

Jimmy replies:

sorry with you medical fact sticklers,but I gotta agree with Marie.I lost most of my sight fromAN surgeries. Out of two An's and one regrowth,I only had one AN surgery that didn't effect my eyesight.

Jimmy

[Guest guest]

Marie,

True enough. If the problem happens right after surgery, its unlikely (but

still remotely possible) there was another cause. I think the problem is

that there is a lot of important 'stuff' packed in your head. Everyones

tumour is different - different size, different location, different

stickiness, and about a thousand more different things. I think this mean

that just about anything can and does happen. We all have different problems

and when we have a common problem, it can vary in degree. I've seen people

with NF2 that have balance, facial nerve, facial feeling, eye closure,

taste, swallowing, fatigue, double vision, no vision, hearing (of course),

sezures. This is only what I can think of at the top of my head. I'm sure

there are 100's of other things.

I had double vision after my operation in 1986 but it went away after a few

months. Try and jam a golf ball in your computer and let me know what happens.

(just another unscientific opinion)

>Right, but I have known I had cataracts for 10 years; why, JUST since

surgery, is my vision suddenly very much worse? marie

> Re: questionnaire

>

>

> Tumors may not be the only thing that causes eye problems. Over 90% of

NF2ers have ocular abnormalities, cataracts being the most common. Anyone of

these abnormalities may cause problems.

> Re: questionnaire

>

>

> You know it is my very unscientific opinion that there is optic

involvement with the AN that they don't know about; I have had severe visual

problems since surgery, and I know many other AN folks who have visual

problems; yet the only thing addressed is dryness and closure. And when you

ask about it, I was told well you don';t have any tumors on the optic

nerves, etc, so there should be no optic problems; yeah, right!! I still

think there is a connection; maybe the surgery traumatizes the nerves or

something, whatever. Also, I think that there is so much attention given to

deafness as a result of AN, and not enough to facial nerve damage and

balance problems--both of which have been issues that are at least as

difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Marie ,I would reccomend you go to an Opthalmologist who specializes in problems with the eye and there are probably plenty of good ones at University Of Pitssburg medical center .maake an appointment immediately ! Tevyen

[Guest guest]

Marie ,I would reccomend you go to an Opthalmologist who specializes in problems with the eye and there are probably plenty of good ones at University Of Pitssburg medical center .maake an appointment immediately ! Tevyen

[Guest guest]

Well my vision is way worse; I can't see up close, take off my glasses and

hold things to my nose; can't read signs at all when I am driving. Marie

Re: questionnaire

>>

>>

>> Tumors may not be the only thing that causes eye problems. Over 90% of

NF2ers

>> have ocular abnormalities, cataracts being the most common. Anyone of

these

>> abnormalities may cause problems.

>> Re: questionnaire

>>

>>

>> You know it is my very unscientific opinion that there is optic

involvement

>> with the AN that they don't know about; I have had severe visual problems

>> since surgery, and I know many other AN folks who have visual problems;

yet

>> the only thing addressed is dryness and closure. And when you ask about

it, I

>> was told well you don';t have any tumors on the optic nerves, etc, so

there

>> should be no optic problems; yeah, right!! I still think there is a

>> connection; maybe the surgery traumatizes the nerves or something,

whatever.

>> Also, I think that there is so much attention given to deafness as a

result of

>> AN, and not enough to facial nerve damage and balance problems--both of

which

>> have been issues that are at least as difficult to deal with as the

deafness.

>> Sorry you asked?? marie

>>

>

>

>

>

>

[Guest guest]

Well my vision is way worse; I can't see up close, take off my glasses and

hold things to my nose; can't read signs at all when I am driving. Marie

Re: questionnaire

>>

>>

>> Tumors may not be the only thing that causes eye problems. Over 90% of

NF2ers

>> have ocular abnormalities, cataracts being the most common. Anyone of

these

>> abnormalities may cause problems.

>> Re: questionnaire

>>

>>

>> You know it is my very unscientific opinion that there is optic

involvement

>> with the AN that they don't know about; I have had severe visual problems

>> since surgery, and I know many other AN folks who have visual problems;

yet

>> the only thing addressed is dryness and closure. And when you ask about

it, I

>> was told well you don';t have any tumors on the optic nerves, etc, so

there

>> should be no optic problems; yeah, right!! I still think there is a

>> connection; maybe the surgery traumatizes the nerves or something,

whatever.

>> Also, I think that there is so much attention given to deafness as a

result of

>> AN, and not enough to facial nerve damage and balance problems--both of

which

>> have been issues that are at least as difficult to deal with as the

deafness.

>> Sorry you asked?? marie

>>

>

>

>

>

>

[Guest guest]

Are you talking about my vision problems or do you have me confused with 's problems? I have been tested in depth by the lady at the Low Vision Center; have been seen by Dr. Buerger immediately post op when he put a gold weight in and tested me. No answers. marie

Re: questionnaireMarie ,I would reccomend you go to an Opthalmologist who specializes in problems with the eye and there are probably plenty of good ones at University Of Pitssburg medical center .maake an appointment immediately ! Tevyen

[Guest guest]

Are you talking about my vision problems or do you have me confused with 's problems? I have been tested in depth by the lady at the Low Vision Center; have been seen by Dr. Buerger immediately post op when he put a gold weight in and tested me. No answers. marie

Re: questionnaireMarie ,I would reccomend you go to an Opthalmologist who specializes in problems with the eye and there are probably plenty of good ones at University Of Pitssburg medical center .maake an appointment immediately ! Tevyen

[Guest guest]

Are you talking about my vision problems or do you have me confused with 's problems? I have been tested in depth by the lady at the Low Vision Center; have been seen by Dr. Buerger immediately post op when he put a gold weight in and tested me. No answers. marie

Re: questionnaireMarie ,I would reccomend you go to an Opthalmologist who specializes in problems with the eye and there are probably plenty of good ones at University Of Pitssburg medical center .maake an appointment immediately ! Tevyen

[Guest guest]

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Well I was at the Low Vision Center a few weeks ago, and I asked the doc about my cataracts, and she send at least two or three years til I need something done. Marie

Re: questionnaire

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Well I was at the Low Vision Center a few weeks ago, and I asked the doc about my cataracts, and she send at least two or three years til I need something done. Marie

Re: questionnaire

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie

[Guest guest]

Well I was at the Low Vision Center a few weeks ago, and I asked the doc about my cataracts, and she send at least two or three years til I need something done. Marie

Re: questionnaire

One of my cataracts became progressively worse to the point where I could see very little out of the center of my eye. I had cataract surgery two years ago and for the first time in my life I can see clearly in that eye.

Re: questionnaire

You know it is my very unscientific opinion that there is optic involvement with the AN that they don't know about; I have had severe visual problems since surgery, and I know many other AN folks who have visual problems; yet the only thing addressed is dryness and closure. And when you ask about it, I was told well you don';t have any tumors on the optic nerves, etc, so there should be no optic problems; yeah, right!! I still think there is a connection; maybe the surgery traumatizes the nerves or something, whatever. Also, I think that there is so much attention given to deafness as a result of AN, and not enough to facial nerve damage and balance problems--both of which have been issues that are at least as difficult to deal with as the deafness. Sorry you asked?? marie