New to Group

[Guest guest]

Hi ...

prayers for your son and family as you negotiate thru the education process of

Chiari and make decisions about neurosurgeons and recovery....

I think your neurosurgeon will be the best insight as to what kind of post

decompression activities Brady will be able to participate in. Especially once

the surgeon knows what kind of repair is needed?

I have heard of students returning to many different sports post neurosurgery

for Chiari Malformation.

However, if it were one of my six children? NO WAY....

I was dx with ACM1 ~ 19 mm herniation at almost 40 years of age. I had a son in

college, a daughter graduating from h.school and soon to start college and then

4 younger children (3 boys and a girl ages 10, 8, 6 and almost 5)   I was dx

after 18 months of multitudes of neurological symptoms and had neurosurgery less

than 2 months later.  ( my husband and children and I live in MIchigan)

My neurosurgeon told me at my 30 days post op follow up appt that we needed to

discuss life altering changes.

Basically, any activity that involved participating in contact sports, riding

horses, jumping on trampolines, jerky carnival rides, speed boats, etc.... were

going to be on my DO NOT DO list, unless I wanted to come back for more

neurosurgery. 

Truth be told, I no longer enjoyed amusement park rides because of how they made

me feel afterwards, I didn't like trampolines or speed boats for the same

reason, and at age 40 I certainly wasn't participating in any contact sports. 

But horses? I owned two and loved to ride.  

I have since sold them because our children had no interest and I was unable to

take care of them on my own.  I miss them dearly.

It's a sacrifice, but one worth making to keep my health. 

Still deal with some of my old symptoms, the surgeon never promised they'd all

go away, but I am pleased to know that the progression of the brain stem

herniation was stopped and that the spinal fluid flow was restored to healthy

flow patterns.

I do not regret my surgery.... but I do not wish it on anyone.... It was a long

road to recovery.....

blessings,

bonnie

decompression with duraplasty (brain stem cut open and dead stem cell tissue

cauterized and then bovine tissue used to patch the dura)  C1 laminectomy . 

 

*~*bonnieblue06*~*

Subject: New to Group

To: " "

< >

Date: Thursday, May 17, 2012, 4:05 PM

 

Hello everyone my name is . My son Brady (Who is 19) was just

diagnosed with Chiari 1 two weeks ago. After reading about Chiari I feel very

fortunate to have a diagnosis so quickly. We are now awaiting another MRI which

is scheduled for next Friday the 25th and right after that we go back to the

neurosurgeon to have the MRI read and schedule decompression surgery.

When we left the hospital with not much of an explaination of what Chiari 1

malformation is, the doctors said go look it up online. I did it was so over

whelming even the neurosurgeon did not tell us much of what to expect.

Brady graduated from High School last year and had taken a year off before

deciding what he wanted to do. He had just moved back home with us so that he

could start working out with his high school football coaches as he was going to

try out to play football for Snow College in Utah. We were told that needed to

be put on hold for this year and that possable next year he could do something

like that. From everything that I have read this seems to me that this is not a

good idea at all anymore? Maybe some of you could give us some advice on what to

expect. Bradys only symptoms have been numbness and tingling in his hand and

sometimes feet but mostly severe headaches for the last two year, Which at that

time were blames on a jammed neck from a football injury.

Also could you give us an idea of what kind of questions we should be asking his

doctor. Brady pretty much has dealt with this so far with not dealing with it at

all. I do not think he realizes that this is going to be life changing for him.

Oh yes and one more thing we live in rural Nevada after looking online there are

no Chiari specialist listed for Nevada however his Neurosurgeon said he has done

many of these surgery's before. Would you suggenst that we find a Neurosurgeon

that specializes in Chiari? There is one in Salt Lake about 3 hours from us.

Thank you everyone for listening and for any help you may be able to give us.

Jenn

[Guest guest]

Hi everyone of course different but there are many athletes that can continue

doing their sports. Here is a link of someone with Chairi who was in the NFL.

http://bleacherreport.com/articles/353938-oakland-raiders-bruce-campbell-is-maki\

ng-a-case-to-be-a-top-eight-pick

To:

From: jennyjo7474@...

Date: Thu, 17 May 2012 13:05:36 -0700

Subject: New to Group

Hello everyone my name is . My son Brady (Who is 19) was just

diagnosed with Chiari 1 two weeks ago. After reading about Chiari I feel very

fortunate to have a diagnosis so quickly. We are now awaiting another MRI which

is scheduled for next Friday the 25th and right after that we go back to the

neurosurgeon to have the MRI read and schedule decompression surgery.

When we left the hospital with not much of an explaination of what Chiari 1

malformation is, the doctors said go look it up online. I did it was so over

whelming even the neurosurgeon did not tell us much of what to expect.

Brady graduated from High School last year and had taken a year off before

deciding what he wanted to do. He had just moved back home with us so that he

could start working out with his high school football coaches as he was going to

try out to play football for Snow College in Utah. We were told that needed to

be put on hold for this year and that possable next year he could do something

like that. From everything that I have read this seems to me that this is not a

good idea at all anymore? Maybe some of you could give us some advice on what to

expect. Bradys only symptoms have been numbness and tingling in his hand and

sometimes feet but mostly severe headaches for the last two year, Which at that

time were blames on a jammed neck from a football injury.

Also could you give us an idea of what kind of questions we should be asking his

doctor. Brady pretty much has dealt with this so far with not dealing with it at

all. I do not think he realizes that this is going to be life changing for him.

Oh yes and one more thing we live in rural Nevada after looking online there are

no Chiari specialist listed for Nevada however his Neurosurgeon said he has done

many of these surgery's before. Would you suggenst that we find a Neurosurgeon

that specializes in Chiari? There is one in Salt Lake about 3 hours from us.

Thank you everyone for listening and for any help you may be able to give us.

Jenn

[Guest guest]

I would definitely go to the specialist! Three hours is not all that far and it

WILL be worth it. Even if this neurosurgeon has done several of these...I'm sure

still not as many as the specialist. I have heard too many horror stories of

people going ahead when neurosurgeons say this. It's better to be safe than

sorry! I went 6 hours from home to see my specialist and I am so thankful that I

did. He literally saved my life! Cortney

[Guest guest]

Hi guys..

This is always the kind of article that concerns me...

Much of the decisions made with permitted activities with Chiari are a

matter of risk vs. rewards. These must be evaluated. To continue with pro

football was a choice this player made. He is now with the Panthers.

Was he given enough good information regarding possible outcomes of this

decision?

Did his treating doctor have good CHIARI background?

How severe were his symptoms???

All this information is pretty important in the decision making....

" A small downside may be that has a brain disorder called

Arnold-Chiari. It is a disorder where some areas of the brain form

abnormally. Evidently, underwent a surgery in high school to

minimize any abnormalities that might occur, and he is not worried about it.

He said, " My medical test went well. I had surgery in high school that a lot

of doctors kind of didn't have enough information on so they wanted me to

get a lot of MRI testing and things like that, but I feel great. "

I would like to hope this is the reporters interpretation, rather than the

players understanding.

I also truly hope that he doesn't regret his decision.

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

New to Group

>

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>

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>

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>

>

>

>

>

>

>

>

>

>

>

>

>

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>

>

> Hello everyone my name is . My son Brady (Who is 19) was just

> diagnosed with Chiari 1 two weeks ago. After reading about Chiari I feel

> very fortunate to have a diagnosis so quickly. We are now awaiting another

> MRI which is scheduled for next Friday the 25th and right after that we go

> back to the neurosurgeon to have the MRI read and schedule decompression

> surgery.

>

>

>

> When we left the hospital with not much of an explaination of what Chiari

> 1 malformation is, the doctors said go look it up online. I did it was so

> over whelming even the neurosurgeon did not tell us much of what to

> expect.

>

>

>

> Brady graduated from High School last year and had taken a year off before

> deciding what he wanted to do. He had just moved back home with us so that

> he could start working out with his high school football coaches as he was

> going to try out to play football for Snow College in Utah. We were told

> that needed to be put on hold for this year and that possable next year he

> could do something like that. From everything that I have read this seems

> to me that this is not a good idea at all anymore? Maybe some of you could

> give us some advice on what to expect. Bradys only symptoms have been

> numbness and tingling in his hand and sometimes feet but mostly severe

> headaches for the last two year, Which at that time were blames on a

> jammed neck from a football injury.

>

>

>

> Also could you give us an idea of what kind of questions we should be

> asking his doctor. Brady pretty much has dealt with this so far with not

> dealing with it at all. I do not think he realizes that this is going to

> be life changing for him.

>

>

>

> Oh yes and one more thing we live in rural Nevada after looking online

> there are no Chiari specialist listed for Nevada however his Neurosurgeon

> said he has done many of these surgery's before. Would you suggenst that

> we find a Neurosurgeon that specializes in Chiari? There is one in Salt

> Lake about 3 hours from us.

>

>

>

> Thank you everyone for listening and for any help you may be able to give

> us.

>

> Jenn

>

>

>

>

[Guest guest]

Hey ,

Where in Nevada do you live?  There are some really good neurosurgeons in

Nevada, especially here in Las Vegas, but none of them are chiari experts and

believe me, you want an expert from the beginning.  I know time and money are

a big issue, but please pray about things before you go ahead with a

non-expert.  Nine surgeries later, I can't help but wonder if I had looked for

a way to at least get a consultation from someone like Dr. Oro in Colorado, if I

wouldn't be in a different spot right now.   Doctors don't like to clean up

someone else mess, which is really hard when it's you sitting in the middle.

Take care & God bless you both.  Keep in touch,

Carol in Las Vegas

 

 

To: " "

< >

Sent: Thursday, May 17, 2012 1:05 PM

Subject: New to Group

 

Hello everyone my name is . My son Brady (Who is 19) was just diagnosed

with Chiari 1 two weeks ago. After reading about Chiari I feel very fortunate to

have a diagnosis so quickly. We are now awaiting another MRI which is scheduled

for next Friday the 25th and right after that we go back to the neurosurgeon to

have the MRI read and schedule decompression surgery.

When we left the hospital with not much of an explaination of what Chiari 1

malformation is, the doctors said go look it up online. I did it was so over

whelming even the neurosurgeon did not tell us much of what to expect.

Brady graduated from High School last year and had taken a year off before

deciding what he wanted to do. He had just moved back home with us so that he

could start working out with his high school football coaches as he was going to

try out to play football for Snow College in Utah. We were told that needed to

be put on hold for this year and that possable next year he could do something

like that. From everything that I have read this seems to me that this is not a

good idea at all anymore? Maybe some of you could give us some advice on what to

expect. Bradys only symptoms have been numbness and tingling in his hand and

sometimes feet but mostly severe headaches for the last two year, Which at that

time were blames on a jammed neck from a football injury.

Also could you give us an idea of what kind of questions we should be asking his

doctor. Brady pretty much has dealt with this so far with not dealing with it at

all. I do not think he realizes that this is going to be life changing for him.

Oh yes and one more thing we live in rural Nevada after looking online there are

no Chiari specialist listed for Nevada however his Neurosurgeon said he has done

many of these surgery's before. Would you suggenst that we find a Neurosurgeon

that specializes in Chiari? There is one in Salt Lake about 3 hours from us.

Thank you everyone for listening and for any help you may be able to give us.

Jenn

[Guest guest]

Hi Everyone,

My first surgery was in 1990, with a local neurosurgeon. I was told for 8

long years that I had a migraine. I thought he was the expert, he knows what

he is talking about. I finally asked for a second opinion, and they said it

would be a waste of time for me, and Dr. Milhorat.

I travel 6 hours in good traffic for my husband to drive to see Dr.

Bolognese, and Dr. Kula. We fought insurance from the start, but it is worth

every second. My husband has changed jobs, same insurance. I'm still

covered.

After you have a consult with an expert, you will see the different.

Best Wishes,

Kathleen

Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

surgery for everything but EDS since 1998.

http://chiariconnectioninternational.com/

[Guest guest]

Hi Carol we actually live in Elko. There for no matter where we go we will have

to travel. We do however have family in Reno I grew up in Pahrump and still have

family there and my dad lives in Salt Lake City. So we have some options however

none of these places have a specialist. We have done a lot of praying about this

thats for sure. Thank you for the your advice!! I did call to see how long it

would take to get in to see Dr Oro and it would be till almost the end of

summer. Bradys headaches seem to get worse by the day and im wondering if it is

wise to wait to have surgery done? I am curious since you have been through all

of this what is your opinion on this? I guess being his mother I want this to

happen sooner than later. Thank you for your advice!

To: " "

< >

Sent: Friday, May 18, 2012 4:17 PM

Subject: Re: New to Group

 

Hey ,

Where in Nevada do you live?  There are some really good neurosurgeons in

Nevada, especially here in Las Vegas, but none of them are chiari experts and

believe me, you want an expert from the beginning.  I know time and money are

a big issue, but please pray about things before you go ahead with a

non-expert.  Nine surgeries later, I can't help but wonder if I had looked for

a way to at least get a consultation from someone like Dr. Oro in Colorado, if I

wouldn't be in a different spot right now.   Doctors don't like to clean up

someone else mess, which is really hard when it's you sitting in the middle.

Take care & God bless you both.  Keep in touch,

Carol in Las Vegas

 

 

To: " "

< >

Sent: Thursday, May 17, 2012 1:05 PM

Subject: New to Group

 

Hello everyone my name is . My son Brady (Who is 19) was just diagnosed

with Chiari 1 two weeks ago. After reading about Chiari I feel very fortunate to

have a diagnosis so quickly. We are now awaiting another MRI which is scheduled

for next Friday the 25th and right after that we go back to the neurosurgeon to

have the MRI read and schedule decompression surgery.

When we left the hospital with not much of an explaination of what Chiari 1

malformation is, the doctors said go look it up online. I did it was so over

whelming even the neurosurgeon did not tell us much of what to expect.

Brady graduated from High School last year and had taken a year off before

deciding what he wanted to do. He had just moved back home with us so that he

could start working out with his high school football coaches as he was going to

try out to play football for Snow College in Utah. We were told that needed to

be put on hold for this year and that possable next year he could do something

like that. From everything that I have read this seems to me that this is not a

good idea at all anymore? Maybe some of you could give us some advice on what to

expect. Bradys only symptoms have been numbness and tingling in his hand and

sometimes feet but mostly severe headaches for the last two year, Which at that

time were blames on a jammed neck from a football injury.

Also could you give us an idea of what kind of questions we should be asking his

doctor. Brady pretty much has dealt with this so far with not dealing with it at

all. I do not think he realizes that this is going to be life changing for him.

Oh yes and one more thing we live in rural Nevada after looking online there are

no Chiari specialist listed for Nevada however his Neurosurgeon said he has done

many of these surgery's before. Would you suggenst that we find a Neurosurgeon

that specializes in Chiari? There is one in Salt Lake about 3 hours from us.

Thank you everyone for listening and for any help you may be able to give us.

Jenn

[Guest guest]

If his symptoms are not life threatening (and it doesn't sound like it) it

wouldn't be such a bad idea to have to wait a couple months to get into a good

specialist. I had been so sick I was in bed 24/7 for 14 months and almost to the

point of being in a wheel chair by the time I got an appointment with a

specialist. I had to wait 2 months more to get in and then didn't even have

surgery for 5 more months. It was tough having to bear the pain for that much

longer but, you know, when you've been dealing with it for so long, a couple

months won't hurt in order to see a good doc. That., of course, is just my

opinion but I would strongly encourage you to see a specialist NO MATTER WHAT!

Blessings, Cortney

[Guest guest]

I could not agree more! Learn how to work with/fight your health insurance.

If you ever need some food for thought on ways to deal with insurance ask the

question on board, you might be surprised how many other families have gone

through just the same thing!

Bea

Sent from my iPhone

On May 18, 2012, at 7:27 PM, " Jeff and Kathleen Grigg "

wrote:

> Hi Everyone,

>

> My first surgery was in 1990, with a local neurosurgeon. I was told for 8

> long years that I had a migraine. I thought he was the expert, he knows what

> he is talking about. I finally asked for a second opinion, and they said it

> would be a waste of time for me, and Dr. Milhorat.

>

> I travel 6 hours in good traffic for my husband to drive to see Dr.

> Bolognese, and Dr. Kula. We fought insurance from the start, but it is worth

> every second. My husband has changed jobs, same insurance. I'm still

> covered.

>

> After you have a consult with an expert, you will see the different.

>

> Best Wishes,

>

>

> Kathleen

> Diagnosed with CM/hydrocephalus 1990, decompression/shunt. Since diagnosed

> with craniocervical instability, Ehlers Danlos, and Tethered Cord Sydrome,

> surgery for everything but EDS since 1998.

>

> http://chiariconnectioninternational.com/

>

>

[Guest guest]

I agree. It's never too far when your life is at stake. I flew across the

continent several times to get my expert treatment at TCI. So glad I did.

Sandy

[Guest guest]

I only shared it because I know that when you get the diagnosis it can be very

overwhelming. My child would nor nor could not play football after the symptoms

started. I guess I like to hold on hope.

To:

CC: sallists@...

From: sallists@...

Date: Fri, 18 May 2012 19:07:06 -0400

Subject: Re: New to Group

Hi guys..

This is always the kind of article that concerns me...

Much of the decisions made with permitted activities with Chiari are a

matter of risk vs. rewards. These must be evaluated. To continue with pro

football was a choice this player made. He is now with the Panthers.

Was he given enough good information regarding possible outcomes of this

decision?

Did his treating doctor have good CHIARI background?

How severe were his symptoms???

All this information is pretty important in the decision making....

" A small downside may be that has a brain disorder called

Arnold-Chiari. It is a disorder where some areas of the brain form

abnormally. Evidently, underwent a surgery in high school to

minimize any abnormalities that might occur, and he is not worried about it.

He said, " My medical test went well. I had surgery in high school that a lot

of doctors kind of didn't have enough information on so they wanted me to

get a lot of MRI testing and things like that, but I feel great. "

I would like to hope this is the reporters interpretation, rather than the

players understanding.

I also truly hope that he doesn't regret his decision.

Sally R... Decompression '91, Hydro, VP shunt, 2 shunt revisions, Feeling

pretty good on NO meds in Bethlehem,Pa

New to Group

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> Hello everyone my name is . My son Brady (Who is 19) was just

> diagnosed with Chiari 1 two weeks ago. After reading about Chiari I feel

> very fortunate to have a diagnosis so quickly. We are now awaiting another

> MRI which is scheduled for next Friday the 25th and right after that we go

> back to the neurosurgeon to have the MRI read and schedule decompression

> surgery.

>

>

>

> When we left the hospital with not much of an explaination of what Chiari

> 1 malformation is, the doctors said go look it up online. I did it was so

> over whelming even the neurosurgeon did not tell us much of what to

> expect.

>

>

>

> Brady graduated from High School last year and had taken a year off before

> deciding what he wanted to do. He had just moved back home with us so that

> he could start working out with his high school football coaches as he was

> going to try out to play football for Snow College in Utah. We were told

> that needed to be put on hold for this year and that possable next year he

> could do something like that. From everything that I have read this seems

> to me that this is not a good idea at all anymore? Maybe some of you could

> give us some advice on what to expect. Bradys only symptoms have been

> numbness and tingling in his hand and sometimes feet but mostly severe

> headaches for the last two year, Which at that time were blames on a

> jammed neck from a football injury.

>

>

>

> Also could you give us an idea of what kind of questions we should be

> asking his doctor. Brady pretty much has dealt with this so far with not

> dealing with it at all. I do not think he realizes that this is going to

> be life changing for him.

>

>

>

> Oh yes and one more thing we live in rural Nevada after looking online

> there are no Chiari specialist listed for Nevada however his Neurosurgeon

> said he has done many of these surgery's before. Would you suggenst that

> we find a Neurosurgeon that specializes in Chiari? There is one in Salt

> Lake about 3 hours from us.

>

>

>

> Thank you everyone for listening and for any help you may be able to give

> us.

>

> Jenn

>

>

>

>

[Guest guest]

I would ask how many a month he does. We did see a neurosurgen who does many of

these a month. He is in NYC. If you can try to see one of the ones n a larger

city they will likely have more experience. Sue

To:

From: cwools01@...

Date: Fri, 18 May 2012 16:17:29 -0700

Subject: Re: New to Group

Hey ,

Where in Nevada do you live? There are some really good neurosurgeons in

Nevada, especially here in Las Vegas, but none of them are chiari experts and

believe me, you want an expert from the beginning. I know time and money are a

big issue, but please pray about things before you go ahead with a non-expert.

Nine surgeries later, I can't help but wonder if I had looked for a way to at

least get a consultation from someone like Dr. Oro in Colorado, if I wouldn't be

in a different spot right now. Doctors don't like to clean up someone else

mess, which is really hard when it's you sitting in the middle.

Take care & God bless you both. Keep in touch,

Carol in Las Vegas

To: " "

< >

Sent: Thursday, May 17, 2012 1:05 PM

Subject: New to Group

Hello everyone my name is . My son Brady (Who is 19) was just diagnosed

with Chiari 1 two weeks ago. After reading about Chiari I feel very fortunate to

have a diagnosis so quickly. We are now awaiting another MRI which is scheduled

for next Friday the 25th and right after that we go back to the neurosurgeon to

have the MRI read and schedule decompression surgery.

When we left the hospital with not much of an explaination of what Chiari 1

malformation is, the doctors said go look it up online. I did it was so over

whelming even the neurosurgeon did not tell us much of what to expect.

Brady graduated from High School last year and had taken a year off before

deciding what he wanted to do. He had just moved back home with us so that he

could start working out with his high school football coaches as he was going to

try out to play football for Snow College in Utah. We were told that needed to

be put on hold for this year and that possable next year he could do something

like that. From everything that I have read this seems to me that this is not a

good idea at all anymore? Maybe some of you could give us some advice on what to

expect. Bradys only symptoms have been numbness and tingling in his hand and

sometimes feet but mostly severe headaches for the last two year, Which at that

time were blames on a jammed neck from a football injury.

Also could you give us an idea of what kind of questions we should be asking his

doctor. Brady pretty much has dealt with this so far with not dealing with it at

all. I do not think he realizes that this is going to be life changing for him.

Oh yes and one more thing we live in rural Nevada after looking online there are

no Chiari specialist listed for Nevada however his Neurosurgeon said he has done

many of these surgery's before. Would you suggenst that we find a Neurosurgeon

that specializes in Chiari? There is one in Salt Lake about 3 hours from us.

Thank you everyone for listening and for any help you may be able to give us.

Jenn

[Guest guest]

Hi everyone I am very greatful to have found this group. I have suffered from

headaches/migraines seen I was a teenager. I was always told migraines run in my

family and given a prescription. I never had any testing as to why I always had

headaches. Last year my insurance changed and I had to go see a new doctor.

After discussing with him my history of headaches he said I needed an MRI to see

what was going on. That is when they told me I have Chiari. I went and had a

consultation at the Chiari Institute in Great Neck NY and they recommended

surgery. I don't think I was ready to hear all of that so I decided to try and

manage the headaches on my own before going for surgery. I also have 5 children

so I felt a bit overwhelmed at the thought of such a big surgery.

Anyway my quesiton is 2 of my children suffer from headaches my daughter who is

16 and my son who is 6. Am I being paranoid to worry they may also have this? My

daughters have started to get worse to where she is naseaus from them. I made an

appointment for a nuerologist for her.

Also as far as symptoms go has anyone every felt motion sickness when your not

in a car? Most of last week I was so sick to my stomach like I had motion

sickness. If I sat or laid down it felt better. My husband actually got me

dramamine to help.

Any input any of you have would be really helpful. This is all still new to me

since being diagnosed only in Jan this year.

Thanks,

Ellen

[Guest guest]

I know exactly what you mean on a few accounts ..... I have 3 kids and would

rather wait for surgery if I can. I have my second MRI tomorrow to see if there

is any spinal fluid build up. If there is then that will speed up my need for

surgery

I also feel " car sick " when I am not in the car, that is the best way that I can

explain it to people. It gets kind of annoying, and I need to sit down and take

a breather in order to feel better. Although it can last for a while. I also get

dizzy if I look down at my phone too long, or get up or move too quickly. I have

learned that I need to be more aware and listen to my body more. I rest more,

slow down when needed and take care of myself, which all can be challenging with

3 boys in sports, scouts, etc

Take care and welcome to the group. I am new myself. Just diagnosed in March

2012.

> Hi everyone I am very greatful to have found this group. I have suffered from

headaches/migraines seen I was a teenager. I was always told migraines run in my

family and given a prescription. I never had any testing as to why I always had

headaches. Last year my insurance changed and I had to go see a new doctor.

After discussing with him my history of headaches he said I needed an MRI to see

what was going on. That is when they told me I have Chiari. I went and had a

consultation at the Chiari Institute in Great Neck NY and they recommended

surgery. I don't think I was ready to hear all of that so I decided to try and

manage the headaches on my own before going for surgery. I also have 5 children

so I felt a bit overwhelmed at the thought of such a big surgery.

> Anyway my quesiton is 2 of my children suffer from headaches my daughter who

is 16 and my son who is 6. Am I being paranoid to worry they may also have this?

My daughters have started to get worse to where she is naseaus from them. I made

an appointment for a nuerologist for her.

> Also as far as symptoms go has anyone every felt motion sickness when your not

in a car? Most of last week I was so sick to my stomach like I had motion

sickness. If I sat or laid down it felt better. My husband actually got me

dramamine to help.

> Any input any of you have would be really helpful. This is all still new to me

since being diagnosed only in Jan this year.

> Thanks,

> Ellen

>

>