Re: New Member Lori Bortell

[Guest guest]

Hi Lori,

I lost my hearing completely at 21 from NF but not everyone does.

Not everyones is real severe either. There is always hope just don't lose

sight of that. Sounds like you have a wonderful family. Ok you have NF but on

the tumors and how they should be handled have you had a second opinion yet?

Sara

Hi, I don't know what to say here so I will start out with my name. I am

Lori. I live in Michigan with my husband of 14 years, my 3 kids, and my

3 cats. I have one teen and two little ones so I call this my " ZOO " . I

have NF2. I was diagnosed when I was 30. I am now 36. My Mom has NF2 and

my Aunt and my Cousin. None of my other siblings have this. So far my

tumors are small, the size of a tomato seed. I try to cope with this the

best I can and try to use my sense of humor to keep going. As of late my

hearing is worsening to the point that it is making me very self

conscious and I am trying to compensate. I have the tinnitus and I am

used to that. It has been suggested that I have surgery to remove these

tumors but I have been very against this. I went on the web to find some

information and found this group. I am looking for some support and

feedback and hope to make some friends here. There are not many people

that I can talk with about this disease and that is also frustrating to

me. They tell me that as I age the hearing will worsen and I could be

deaf. Another scary thought to me.I just try to think that there are

those with this that are much worse off then I am and try not to dwell

on my problems. I have been reading a great deal on the web and some of

the stories of others with this break my heart. I am well aware that

there can be more tumors in the future and I might have to face what my

Mom has so far. She is good support but many times I don't want to upset

her with my fears. I hope this does not sound dumb I am new to this. I

hope that I find the support I need right now with this group.Thanks,

Lori Bortell

>>

[Guest guest]

Hi Lori,

I lost my hearing completely at 21 from NF but not everyone does.

Not everyones is real severe either. There is always hope just don't lose

sight of that. Sounds like you have a wonderful family. Ok you have NF but on

the tumors and how they should be handled have you had a second opinion yet?

Sara

Hi, I don't know what to say here so I will start out with my name. I am

Lori. I live in Michigan with my husband of 14 years, my 3 kids, and my

3 cats. I have one teen and two little ones so I call this my " ZOO " . I

have NF2. I was diagnosed when I was 30. I am now 36. My Mom has NF2 and

my Aunt and my Cousin. None of my other siblings have this. So far my

tumors are small, the size of a tomato seed. I try to cope with this the

best I can and try to use my sense of humor to keep going. As of late my

hearing is worsening to the point that it is making me very self

conscious and I am trying to compensate. I have the tinnitus and I am

used to that. It has been suggested that I have surgery to remove these

tumors but I have been very against this. I went on the web to find some

information and found this group. I am looking for some support and

feedback and hope to make some friends here. There are not many people

that I can talk with about this disease and that is also frustrating to

me. They tell me that as I age the hearing will worsen and I could be

deaf. Another scary thought to me.I just try to think that there are

those with this that are much worse off then I am and try not to dwell

on my problems. I have been reading a great deal on the web and some of

the stories of others with this break my heart. I am well aware that

there can be more tumors in the future and I might have to face what my

Mom has so far. She is good support but many times I don't want to upset

her with my fears. I hope this does not sound dumb I am new to this. I

hope that I find the support I need right now with this group.Thanks,

Lori Bortell

>>

[Guest guest]

Thank you Jeff! Lori

[Guest guest]

Sara, I am going to go to a Doctor in MI here that handles my Mom's case. Mom

wants me to have these taken out now but I am petrified! The last MRI I had

done at UofM they told me there has been no change in the size of the tumors.

When I was first diagnosed I was told that it was not recommended that they

be removed! Even though they say that haven't grown I am having a great deal

of trouble with my hearing and it is to the point where I know I must do

something. I believe that at this point they have grown (this is just gut

feeling). I am seeing my Doctor ont he 30th and then I will get all my

authorizations to see the Neurologists and hopefully insurance will cover

this trip to my Mom's Doctor. Lori

[Guest guest]

Hi Lori,

Welcome to the crew.

Lana in Minnesota:))

[Guest guest]

Hi Lori,

Welcome to the crew.

Lana in Minnesota:))

[Guest guest]

Thank You Lana Lori

[Guest guest]

Thank You Lana Lori

[Guest guest]

Thank You Lana Lori

[Guest guest]

Welcome to the group Lori.

Jeff

New Member Lori Bortell

Hi, I don't know what to say here so I will start out with my name. I am

Lori. I live in Michigan with my husband of 14 years, my 3 kids, and my

3 cats. I have one teen and two little ones so I call this my " ZOO " . I

have NF2. I was diagnosed when I was 30. I am now 36. My Mom has NF2 and

my Aunt and my Cousin. None of my other siblings have this. So far my

tumors are small, the size of a tomato seed. I try to cope with this the

best I can and try to use my sense of humor to keep going. As of late my

hearing is worsening to the point that it is making me very self

conscious and I am trying to compensate. I have the tinnitus and I am

used to that. It has been suggested that I have surgery to remove these

tumors but I have been very against this. I went on the web to find some

information and found this group. I am looking for some support and

feedback and hope to make some friends here. There are not many people

that I can talk with about this disease and that is also frustrating to

me. They tell me that as I age the hearing will worsen and I could be

deaf. Another scary thought to me.I just try to think that there are

those with this that are much worse off then I am and try not to dwell

on my problems. I have been reading a great deal on the web and some of

the stories of others with this break my heart. I am well aware that

there can be more tumors in the future and I might have to face what my

Mom has so far. She is good support but many times I don't want to upset

her with my fears. I hope this does not sound dumb I am new to this. I

hope that I find the support I need right now with this group.Thanks,

Lori Bortell

_____NetZero Free Internet Access and Email______

http://www.netzero.net/download/index.html

[Guest guest]

Welcome to the group Lori.

Jeff

New Member Lori Bortell

Hi, I don't know what to say here so I will start out with my name. I am

Lori. I live in Michigan with my husband of 14 years, my 3 kids, and my

3 cats. I have one teen and two little ones so I call this my " ZOO " . I

have NF2. I was diagnosed when I was 30. I am now 36. My Mom has NF2 and

my Aunt and my Cousin. None of my other siblings have this. So far my

tumors are small, the size of a tomato seed. I try to cope with this the

best I can and try to use my sense of humor to keep going. As of late my

hearing is worsening to the point that it is making me very self

conscious and I am trying to compensate. I have the tinnitus and I am

used to that. It has been suggested that I have surgery to remove these

tumors but I have been very against this. I went on the web to find some

information and found this group. I am looking for some support and

feedback and hope to make some friends here. There are not many people

that I can talk with about this disease and that is also frustrating to

me. They tell me that as I age the hearing will worsen and I could be

deaf. Another scary thought to me.I just try to think that there are

those with this that are much worse off then I am and try not to dwell

on my problems. I have been reading a great deal on the web and some of

the stories of others with this break my heart. I am well aware that

there can be more tumors in the future and I might have to face what my

Mom has so far. She is good support but many times I don't want to upset

her with my fears. I hope this does not sound dumb I am new to this. I

hope that I find the support I need right now with this group.Thanks,

Lori Bortell

_____NetZero Free Internet Access and Email______

http://www.netzero.net/download/index.html

[Guest guest]

WElcome Lori!!!

I, also, was diagnosed when I was 30. I'm now 31. I had an 8mm AN removed

this summer at the HEI. Drs. Brackmann and Hitzelberger did the surgery

they were able to preserve my hearing and facial nerves. I will have the

other one removed next summer.

My sisters, Becky and Carolyn, had larger AN tumors removed and got the

same results.

My mother, , is deaf from AN tumors. She lost her hearing in the

80's. She received her ABI in 90. Back then it was monitor the tumors,

remove when they got dangerous as they were unable to preserve hearing.

That is not the only option today.

Education is the best way to deal with this. Keep searching for answers. I

learn something everyday.

Blessings,

[Guest guest]

WElcome Lori!!!

I, also, was diagnosed when I was 30. I'm now 31. I had an 8mm AN removed

this summer at the HEI. Drs. Brackmann and Hitzelberger did the surgery

they were able to preserve my hearing and facial nerves. I will have the

other one removed next summer.

My sisters, Becky and Carolyn, had larger AN tumors removed and got the

same results.

My mother, , is deaf from AN tumors. She lost her hearing in the

80's. She received her ABI in 90. Back then it was monitor the tumors,

remove when they got dangerous as they were unable to preserve hearing.

That is not the only option today.

Education is the best way to deal with this. Keep searching for answers. I

learn something everyday.

Blessings,

[Guest guest]

WElcome Lori!!!

I, also, was diagnosed when I was 30. I'm now 31. I had an 8mm AN removed

this summer at the HEI. Drs. Brackmann and Hitzelberger did the surgery

they were able to preserve my hearing and facial nerves. I will have the

other one removed next summer.

My sisters, Becky and Carolyn, had larger AN tumors removed and got the

same results.

My mother, , is deaf from AN tumors. She lost her hearing in the

80's. She received her ABI in 90. Back then it was monitor the tumors,

remove when they got dangerous as they were unable to preserve hearing.

That is not the only option today.

Education is the best way to deal with this. Keep searching for answers. I

learn something everyday.

Blessings,

[Guest guest]

In a message dated 10/25/00 9:12:19 AM Pacific Daylight Time,

larorr@... writes:

<< Subj: Re: New Member Lori Bortell

Date: 10/25/00 9:12:19 AM Pacific Daylight Time

From: larorr@... (Larry & Orr)

Reply-to: NF2_Crewegroups

To: NF2_Crewegroups

WElcome Lori!!!

I, also, was diagnosed when I was 30. I'm now 31. I had an 8mm AN removed

this summer at the HEI. Drs. Brackmann and Hitzelberger did the surgery

they were able to preserve my hearing and facial nerves. I will have the

other one removed next summer.

My sisters, Becky and Carolyn, had larger AN tumors removed and got the

same results.

My mother, , is deaf from AN tumors. She lost her hearing in the

80's. She received her ABI in 90. Back then it was monitor the tumors,

remove when they got dangerous as they were unable to preserve hearing.

That is not the only option today.

Education is the best way to deal with this. Keep searching for answers. I

learn something everyday.

Blessings,

----------------------- Headers -------------------------- >>

Thank You , I am going to explore all options and then make the big

decision what will be next. Thanks for the information. Lori Jo

[Guest guest]

Hi Lori,

Just got through reading your post. I certainly can understand where

you are coming from. I would be more than happy to talk with you along with

the rest of the Crew to ease your fears. It is funny how your last name is

Bortell and my last name is Bartell. Do you think maybe we might be closely

related. Ha!....NF2 is very spooky and don't you give into it. You fight it

with everything you have in your body! I am a fighter and so is every one

else on the Crew. We support each other. I don't get on and talk much but I

do read the posts. Talk to you soon!

Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) )

[Guest guest]

Hi Lori,

Just got through reading your post. I certainly can understand where

you are coming from. I would be more than happy to talk with you along with

the rest of the Crew to ease your fears. It is funny how your last name is

Bortell and my last name is Bartell. Do you think maybe we might be closely

related. Ha!....NF2 is very spooky and don't you give into it. You fight it

with everything you have in your body! I am a fighter and so is every one

else on the Crew. We support each other. I don't get on and talk much but I

do read the posts. Talk to you soon!

Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) )

[Guest guest]

Hi Lori,

Just got through reading your post. I certainly can understand where

you are coming from. I would be more than happy to talk with you along with

the rest of the Crew to ease your fears. It is funny how your last name is

Bortell and my last name is Bartell. Do you think maybe we might be closely

related. Ha!....NF2 is very spooky and don't you give into it. You fight it

with everything you have in your body! I am a fighter and so is every one

else on the Crew. We support each other. I don't get on and talk much but I

do read the posts. Talk to you soon!

Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) )

[Guest guest]

In a message dated 10/25/00 7:37:28 PM Pacific Daylight Time,

rwbartell@... writes:

<< Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) ) >>

(((((((((((((Pat))))))))))))))) Here is a nice big Michigan hug for you!

Thanks for the welcome! What is funny here is that people mis pronounce my

name as your name! LOL Maybe we are related one never knows..........Lori Jo

[Guest guest]

In a message dated 10/25/00 7:37:28 PM Pacific Daylight Time,

rwbartell@... writes:

<< Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) ) >>

(((((((((((((Pat))))))))))))))) Here is a nice big Michigan hug for you!

Thanks for the welcome! What is funny here is that people mis pronounce my

name as your name! LOL Maybe we are related one never knows..........Lori Jo

[Guest guest]

In a message dated 10/25/00 7:37:28 PM Pacific Daylight Time,

rwbartell@... writes:

<< Pat B. from San , Texas ( A GREAT BIG TEXAS HUG FOR YOU ) ) >>

(((((((((((((Pat))))))))))))))) Here is a nice big Michigan hug for you!

Thanks for the welcome! What is funny here is that people mis pronounce my

name as your name! LOL Maybe we are related one never knows..........Lori Jo

[Guest guest]

In a message dated 10/27/00 2:39:44 PM Pacific Daylight Time,

GREGIERY@... writes:

<< I hope you'll see this, Lori, but which doctor are you seeing at UofM?

Greg

- >>

Greg, My last visit there was just to have an MRI and I had a Neuro consult

scheduled that I missed. I have slacked on this since. Now I am going to see

a Doctor that Mom sees up here at someplace called the Ear Institute I think

it is. His name is Partuch? I don't know if I spelled that right? Lori Jo

[Guest guest]

In a message dated 10/27/00 2:39:44 PM Pacific Daylight Time,

GREGIERY@... writes:

<< I hope you'll see this, Lori, but which doctor are you seeing at UofM?

Greg

- >>

Greg, My last visit there was just to have an MRI and I had a Neuro consult

scheduled that I missed. I have slacked on this since. Now I am going to see

a Doctor that Mom sees up here at someplace called the Ear Institute I think

it is. His name is Partuch? I don't know if I spelled that right? Lori Jo

[Guest guest]

I hope you'll see this, Lori, but which doctor are you seeing at UofM?

Greg

[Guest guest]

I hope you'll see this, Lori, but which doctor are you seeing at UofM?

Greg