Thanks

October 25, 2002

Are you positive she is not having migraines? I know there are several

different types, & they don't all have the " classic " migraine symptoms.

There is a blood test for a certain antibody that can indicate a " migraine

disease " (it also can indicate several other diseases, so those would also

have to be ruled out). If it is negative that doesn't mean she doesn't have

migraines, but if it is positive it shows that she can/does. Have they

tried her on a specific migraine med. (vs. just a pain killer)? Did

migraine meds work, or just pain killers? How old is she? My daughter

started having migraines at 5, and it turns out hers are hormone related

(and she just started her period lst summer and she's only 8!). I'm not

saying that you should just assume 's are migraines for no reason, I

just wanted to make sure you weren't automaticly assuming it was Chiari

related & not considering the other possibilities. After you have seriously

considered all that it could be, go with whatyour gut tells you! Mother's

intuition is usually right!

a in WA

To: chiari >

Subject: thanks

Date: Fri, 25 Oct 2002 19:54:17 -0500

Hi all! Thanks to all of you who responded to my post. The doctors have

now changed their mind and are saying that the pocket of fluid is nothing to

worry about and perfectly normal. They say that if the MRA comes back

negative then they are pretty sure has migraines. I am mad.

has never had migraines and she is not having migraines in my opinion.

They said that the chiari surgery probably woke up the migraine gene. Ok-

yet another question for you all--- what do you think? I am not so

confident in the doctors ability to deal with chiari. They are not

mentioning it and in their opinion the chiari has been fixed and is totally

unrelated.

Last night went to bed screaming in pain and holding her head. This

morning she awoke and did the same thing and then vomited. I paged the dr.

who thought it was probably a migraine. I am feeling very uncomfortable.

To the NY experts- do the drs. there look at films or will they only consult

on site?

Also I know I have seen a Dr. Frim who is in Chicago. Does anyone know if

he will look at films? I need to find another opinion (I think?)

Thanks for all your support this is so hard. seemed like she got a

new lease on life six weeks ago and now we are backpedaling again. Again,

any help is so very appreciated.

(WI)

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October 25, 2002

> They said that the chiari surgery probably woke up the migraine

gene. >>

Hi ,

While there is real evidence of a " migraine gene " it would take very

extensive studies to come to the conclusion that has the gene

and it would take far more studies to come to the conclusion that

*anything* had the ability to " wake it up " .

To date there isn't a single abstract or any clinical evidence

whatsoever that might support the idea of this being a reasonable

scenario.

In the future this may change.. but as of today it sounds like

someone trying to create a diagnosis that is hard or impossible to

validate. I'd be looking for more answers.. just as you are.

Chip

www.wacma.com

May 13, 2003

I know we have discussed this before....but if we know who we are on the inside...does it REALLY matter what people think or how they react? Isn't it their problem...their insecurites that allow them to act the way they do? And they don't have the knowledge we do...so perhaps a little patience on our part is needed.

There is a fear in our society today in diseases and illnesses...look at SARS now. Many new ones have come into play over the last few years.

As you know, much of it comes from education, which many don't have to oppurtunity to have. We need to educate them.

Be bold and talk to the parent that does pull the child away...if they will listen...couldn't hurt!!!

Carol

thanks

Crew:

After getting the pros and cons of the features on the NF2 varations it seems that there are mabny answers to the questions. It is true that there are those that help with NF people and yet those that think they will catch it. As an adult I have to face it . Some are looking at you as dumb idiot others are willing to overlook the worst. Like the other day sitting in a restraunt. People look at me as though I'm a freak others pay no attention. At times it can be very saddning when a grownup will pull a child away because they think you are a monster. Sad but true. Those that care are few and far between. It it embarssing for me to go out to eat or smoething and they ask me a question ie: waiter ect. and before I can even read his lips or respond my wife or daughter will answer for me. This makes me real mad. They have known me for years. LET ME HAVE A CHANCE FOR CRYING OUT LOUD. The same is true with kids. Let them get a shot in.

The other is ins. That is a toughy. It is up to a pituclar company or salesman. I guess it is how or who intrups the laws.

I'm sorry but sometines I feel shunned so a child must at times feel the same.

FOR ^ & & %%# SAKE I'M AN ADULT AT 54!!!!!!!!!!!!!!!

BEANS

May 13, 2003

absolutely 100% on all points

> Crew:

> After getting the pros and cons of the features on the NF2

varations it seems that there are mabny answers to the questions. It

is true that there are those that help with NF people and yet those

that think they will catch it. As an adult I have to face it . Some

are looking at you as dumb idiot others are willing to overlook the

worst. Like the other day sitting in a restraunt. People look at me

as though I'm a freak others pay no attention. At times it can be

very saddning when a grownup will pull a child away because they

think you are a monster. Sad but true. Those that care are few and

far between. It it embarssing for me to go out to eat or smoething

and they ask me a question ie: waiter ect. and before I can even read

his lips or respond my wife or daughter will answer for me. This

makes me real mad. They have known me for years. LET ME HAVE A CHANCE

FOR CRYING OUT LOUD. The same is true with kids. Let them get a shot

in.

> The other is ins. That is a toughy. It is up to a pituclar

company or salesman. I guess it is how or who intrups the laws.

> I'm sorry but sometines I feel shunned so a child must at times

feel the same.

> FOR ^&&%%# SAKE I'M AN ADULT AT 54!!!!!!!!!!!!!!!

> BEANS

>

> --------------------------------------------------------------------

------------

May 14, 2003

Subject: thanks

This happens to me alot Beans, and in more then restuarants. Yesterday I had an appointment with an ENT that is located 5 1/2 hours away. After a few minutes, he and my husband took over the whole appointment. Meaning the conversation was not at all directed to me, although about nf2, an's and mri's. I had prior to appt. told my husband to keep his questions till the end (Not at all important I be part of the conversation at all or that they, at the very least, face me. I had just had my hearing tested, they had read the results. I had told him, actually both of them, I now required people to face me when they talk just seconds before(Sarcasm). My husband and I have had many discussions on his 'taking over my appointments, answering, ordering foods or talking to sales people in regard to my purchases. Then my husband caught my 'nastiest dirty look' and flippantly said 'oh am I taking over again, I'll leave...' The ENT (supposedly the most knowledgeable person in western canada in regard to AN's) The Dr. got up and said ' no..., we're finished. And left. Boy was I ticked off!!!!! As a doctor, he assumed alot. I made it very clear to nurses and my husband that my appointment was taken over and I hadn't found out info I was there for in the first place. My husband knew he was in deep 'crap' and in the end another appointment was made with this very busy Dr. and another Dr. as well. The ENT( same guy, 2nd appt) looked in my ear and started talking to me non-stop as I fought to quickly install my hearing aid to hear him, or was he talking to my husband again??? In any case, I had to have it repeated.......like duh!!!!! It was am awful day. The ENT had always sat directly in front of me for appointments.

But, I did get to meet Marnie's daughter Dee Ann, Rob and puppy, Shyla. She had an appointment right next to mine :-) Does anyone have 's addy? My mail to him keeps coming back and we missed him. :-(

Sheryn, :-( venting......

_____________________________

Beans said:

It it embarassing for me to go out to eat or smoething and they ask me a question ie: waiter ect. and before I can even read his lips or respond my wife or daughter will answer for me. This makes me real mad. They have known me for years. LET ME HAVE A CHANCE FOR CRYING OUT LOUD. NF2_Crew-unsubscribe

October 4, 2003

Christy your lucky to have such a special man. My soon to be ex would not

even go to a single ultrasound. I had 3 children with him. He did get involved

in the birthing and took pictures. He did not understand why we go through

the mood changes that we go through for all of this. Now he says the only

solution is to separate, but he doesn't want to be fair. He will not go to any

counseling. Since I just lost my job, he believes that he should get the house

and the kids. I've had several job interviews and am waiting on the results

of 3. I have 2 more next week. After I get a job, I will feel a little

stronger about handling this idea of moving on. Mediation says that we can do

joint

custody, for I think that it is best for the kids.

Any advice.

Charlotte, I have not had my consult yet, but I have received and read the

book from Dr. Levin.

Jeanette

October 4, 2003

it took about 2 days before they started showing up on my email.

> Thanks to everybody for the great ideas! I'm in the process of

> checking out these sites and I'm on the way to the library. NOVA

put

> out an awesome video called Life's Miracle or something like that,

> that shows inside the womb what happens from conception to birth,

> which was awesome! Can't wait to tie down the hubby and make him

> watch it play-by-play! haha JK, he's all on-board for this! He even

> went to my last pap smear with me! His jaw dropped to the floor

when

> the speculum opened, though!!! heehee It was hilarious to see his

> face. He says it was completely not what he thought.

> Does anyone know how long it should take before I start getting

> emails? I haven't gotten any of them since I got accepted into the

> group. Just wondering if I need to change the email address or

> something.

> Thanks everybody for your great ideas!!

> Christy

October 4, 2003

Miracle of Life was so wonderful. Thanks for reminding me. We are ALMOST

ready for it in our house. Not quite yet. But, I recommend it too.

Your husband went in with your for your pap smear? please, please tell

us that he was standing next to your head just like he would during

childbirth....I have never, ever heard of a husband doing that! He must

be a very supportive and involved and, uh, curious husband! geez, I

dread the pap smear....couldn't imagine my husband coming with me. Of

course, I suppose I am thinking more of me. It's not the most flattering

position a woman can find herself in..maybe if they did something with

the lighting..... : ) : )

> it took about 2 days before they started showing up on my email.

>

> > Thanks to everybody for the great ideas! I'm in the process of

> > checking out these sites and I'm on the way to the library. NOVA

> put

> > out an awesome video called Life's Miracle or something like that,

> > that shows inside the womb what happens from conception to birth,

> > which was awesome! Can't wait to tie down the hubby and make him

> > watch it play-by-play! haha JK, he's all on-board for this! He even

> > went to my last pap smear with me! His jaw dropped to the floor

> when

> > the speculum opened, though!!! heehee It was hilarious to see his

> > face. He says it was completely not what he thought.

> > Does anyone know how long it should take before I start getting

> > emails? I haven't gotten any of them since I got accepted into the

> > group. Just wondering if I need to change the email address or

> > something.

> > Thanks everybody for your great ideas!!

> > Christy

>

October 4, 2003

Haha!! The doc wouldn't let him stay up by my head!! She kept

saying " Come here, don't you want to see what the cervix looks like? "

and stuff like that! If I hadn't been in such an uncomfortable

position, I'd have been ROFLMBO!! Just the look on his face was

priceless! He says now that he has a whole new respect for what women

have to endure. He apologized to me for the whole day, saying he was

sorry I have to go through that. He kept saying, " Baby, I had no

idea... I'm so sorry that you have to do that! " He was so funny! He

really is great, though. He stands by me no matter what. That's the

reason I want to have a baby with him. I just can't wait to find out

what it's like to have a baby with a man who wants to be a part of

our life. So Cool

Christy

> Miracle of Life was so wonderful. Thanks for reminding me. We are

ALMOST

> ready for it in our house. Not quite yet. But, I recommend it too.

>

> Your husband went in with your for your pap smear? please, please

tell

> us that he was standing next to your head just like he would during

> childbirth....I have never, ever heard of a husband doing that! He

must

> be a very supportive and involved and, uh, curious husband! geez, I

> dread the pap smear....couldn't imagine my husband coming with me.

Of

> course, I suppose I am thinking more of me. It's not the most

flattering

> position a woman can find herself in..maybe if they did something

with

> the lighting..... : ) : )

October 4, 2003

My dh went with me for my last Pap too. He went with me to my 6 week

checkup after having the baby because we had a baby checkup at the

same time. He lived! LOL

> > > Thanks to everybody for the great ideas! I'm in the process of

> > > checking out these sites and I'm on the way to the library. NOVA

> > put

> > > out an awesome video called Life's Miracle or something like

that,

> > > that shows inside the womb what happens from conception to

birth,

> > > which was awesome! Can't wait to tie down the hubby and make him

> > > watch it play-by-play! haha JK, he's all on-board for this! He

even

> > > went to my last pap smear with me! His jaw dropped to the floor

> > when

> > > the speculum opened, though!!! heehee It was hilarious to see

his

> > > face. He says it was completely not what he thought.

> > > Does anyone know how long it should take before I start getting

> > > emails? I haven't gotten any of them since I got accepted into

the

> > > group. Just wondering if I need to change the email address or

> > > something.

> > > Thanks everybody for your great ideas!!

> > > Christy

> >

>

> >

October 5, 2003

Congradulations on the recent birth ,

How are you and the little one doing?

Jeanette

October 5, 2003

Where can we get the Miracle of Life video? I saw it once when I was in high

school and would love to have it for my kids to watch once we are fertile again.

They are very curious about the whole process! LOL Does anyone have a link to be

able to order it?

Lesley

Re: Re: thanks