Re: questionnaire

[Guest guest]

I got the same email, and since I had never heard of him, I disregarded it as well

Pete

[Guest guest]

I got the same email, and since I had never heard of him, I disregarded it as well

Pete

[Guest guest]

He just joined the crew i thought.

C + G son wrote:

I

got two emails the other day from somebody called Jon Kantor. He

has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is? I feel a bit uncomfortable about answering

him until I know who he is.Thank

you for the advice about moving! We have already done a lot of what

you suggested, but not the bit about the kitchen cupboards. Haven't

got a clue how many cupboards there are. My parents moved around

a lot, and I lived in over 20 places before I got married at 21. Georgia

[Guest guest]

Jon Kantor is a new member, he's been on here a week or two,

I think. Take Care.....

> I got the same email, and since I had never heard of him, I

disregarded it as

> well

>

> Pete

[Guest guest]

Jon Kantor is a new member, he's been on here a week or two,

I think. Take Care.....

> I got the same email, and since I had never heard of him, I

disregarded it as

> well

>

> Pete

[Guest guest]

Georgia...he is the new Crewbie Jonathaon. He seems very nice. Did you

read his bio? Long family history.

Carol

C + G son wrote:

I

got two emails the other day from somebody called Jon Kantor. He

has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is? I feel a bit uncomfortable about answering

him until I know who he is.

[Guest guest]

Georgia...he is the new Crewbie Jonathaon. He seems very nice. Did you

read his bio? Long family history.

Carol

C + G son wrote:

I

got two emails the other day from somebody called Jon Kantor. He

has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is? I feel a bit uncomfortable about answering

him until I know who he is.

[Guest guest]

I know Jon Kantor and would vouch for him; his aims are honorable!! LOL Marie

questionnaire

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is? I feel a bit uncomfortable about answering him until I know who he is.

Thank you for the advice about moving! We have already done a lot of what you suggested, but not the bit about the kitchen cupboards. Haven't got a clue how many cupboards there are. My parents moved around a lot, and I lived in over 20 places before I got married at 21.

Georgia

[Guest guest]

I know Jon Kantor and would vouch for him; his aims are honorable!! LOL Marie

questionnaire

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is? I feel a bit uncomfortable about answering him until I know who he is.

Thank you for the advice about moving! We have already done a lot of what you suggested, but not the bit about the kitchen cupboards. Haven't got a clue how many cupboards there are. My parents moved around a lot, and I lived in over 20 places before I got married at 21.

Georgia

[Guest guest]

I know Jon Kantor and would vouch for him; his aims are honorable!! LOL Marie

questionnaire

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is? I feel a bit uncomfortable about answering him until I know who he is.

Thank you for the advice about moving! We have already done a lot of what you suggested, but not the bit about the kitchen cupboards. Haven't got a clue how many cupboards there are. My parents moved around a lot, and I lived in over 20 places before I got married at 21.

Georgia

[Guest guest]

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is?

Hmmm... I never got this questionnaire. Did everyone else get it?

June

[Guest guest]

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is?

Hmmm... I never got this questionnaire. Did everyone else get it?

June

[Guest guest]

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire.

Does anyone know who he is?

Hmmm... I never got this questionnaire. Did everyone else get it?

June

[Guest guest]

He is a new crewbie. He hasn't mailed the survey out yet, right now looking

for people to participate. He is very nice.

Carol

Boob1188@... wrote:

I

got two emails the other day from somebody called Jon Kantor. He

has a

list of people

with NF2 and wants everyone to fill out a questionnaire.

Does anyone

know who he is?

Hmmm... I

never got this questionnaire. Did everyone else get it?

June

[Guest guest]

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.

Re: questionnaire

He is a new crewbie. He hasn't mailed the survey out yet, right now looking for people to participate. He is very nice. Carol Boob1188@... wrote:

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is?Hmmm... I never got this questionnaire. Did everyone else get it? June

[Guest guest]

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.

Re: questionnaire

He is a new crewbie. He hasn't mailed the survey out yet, right now looking for people to participate. He is very nice. Carol Boob1188@... wrote:

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is?Hmmm... I never got this questionnaire. Did everyone else get it? June

[Guest guest]

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.

Re: questionnaire

He is a new crewbie. He hasn't mailed the survey out yet, right now looking for people to participate. He is very nice. Carol Boob1188@... wrote:

I got two emails the other day from somebody called Jon Kantor. He has a list of people with NF2 and wants everyone to fill out a questionnaire. Does anyone know who he is?Hmmm... I never got this questionnaire. Did everyone else get it? June

[Guest guest]

Hi Jon -

For me my onset of " troubles " began way back in 1969 (Christmas) - long before NF2 was every dreamed of I guess, certainly not diagnoised. I would be interested in knowing if it fits into your plans for the survey when people actually starting having " problems " - what type of doctor did they initially go to. Chain of events and doctors that led to the doctor diagnosing the actual NF2. For me, I wasn't informed until 26 years later after my initial onset of double vision. The doctors seems rather lost as to why I was having brain tumors. I was a very perplexing case at the time. I will qoute you that on your survey from my records I managed to copy.

And it was not a doctor who caught it in 1996. It was my audiologist at the time. She suspected it. Followed through with OTO doctors.

I had numerous doctors examine me over a period of 26 years. I will log all that for you when you get your survey set up.

Not only with the tumor tissue similarities and symptons be most helpful to see in print but our journeys through the medical personal to get proper help and treatment. What do you think? Maybe this will help or comfort others?

Thanks for your help in doing all this.

God bless.

Jane

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]

Hi Jon -

For me my onset of " troubles " began way back in 1969 (Christmas) - long before NF2 was every dreamed of I guess, certainly not diagnoised. I would be interested in knowing if it fits into your plans for the survey when people actually starting having " problems " - what type of doctor did they initially go to. Chain of events and doctors that led to the doctor diagnosing the actual NF2. For me, I wasn't informed until 26 years later after my initial onset of double vision. The doctors seems rather lost as to why I was having brain tumors. I was a very perplexing case at the time. I will qoute you that on your survey from my records I managed to copy.

And it was not a doctor who caught it in 1996. It was my audiologist at the time. She suspected it. Followed through with OTO doctors.

I had numerous doctors examine me over a period of 26 years. I will log all that for you when you get your survey set up.

Not only with the tumor tissue similarities and symptons be most helpful to see in print but our journeys through the medical personal to get proper help and treatment. What do you think? Maybe this will help or comfort others?

Thanks for your help in doing all this.

God bless.

Jane

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]

Hi Jon -

For me my onset of " troubles " began way back in 1969 (Christmas) - long before NF2 was every dreamed of I guess, certainly not diagnoised. I would be interested in knowing if it fits into your plans for the survey when people actually starting having " problems " - what type of doctor did they initially go to. Chain of events and doctors that led to the doctor diagnosing the actual NF2. For me, I wasn't informed until 26 years later after my initial onset of double vision. The doctors seems rather lost as to why I was having brain tumors. I was a very perplexing case at the time. I will qoute you that on your survey from my records I managed to copy.

And it was not a doctor who caught it in 1996. It was my audiologist at the time. She suspected it. Followed through with OTO doctors.

I had numerous doctors examine me over a period of 26 years. I will log all that for you when you get your survey set up.

Not only with the tumor tissue similarities and symptons be most helpful to see in print but our journeys through the medical personal to get proper help and treatment. What do you think? Maybe this will help or comfort others?

Thanks for your help in doing all this.

God bless.

Jane

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]

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]

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]

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]

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]

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.