Our niece Rebecca, who was 34 died this week and we attended her funeral today. 

I did not know her well, as I have married into the family she is from: she is

not my niece by blood.  She was a lovely person from my few meetings with her.



I asked today, her husband's stepmother, what caused her death.  Previous

answers to this question from my husband and others in her family were very

vague.



Her husband's stepmother said "it was something to do with her spine and neck

and head.  She found out she had it when she saw a TV show about it and

recognized many of the symptoms".



This startled me, and I asked 'was it Chiari??  If it was, that is what I have."



The stepmom, wasn't sure, but her eyes widened.  She said 'wait here', and went

to get Rebecca's husband's dad, Jesse.  Jesse told me yes, that was what it was

called.  Jesse and his wife told me that Rebecca had been to many doctors, even

neurologists and no one could identify her condition.  Doctors and friends were

beginning to believe she was a hypochondriac.



Then, she saw a show on the Discovery Channel, and had 16 of the 18 symptoms

listed there.  She ended up calling 'someplace in New York'.



"The Chiari Institute?", I asked.



Yes, they told me, that was it and she went there.  This spring.



Then Jesse and his wife got Rebecca's husband's real mom to come talk to me. 

She knew more of the facts.  Her name is Cheryl.



Cheryl was surprised that I have Chiari; surprised I knew so much; surprised I

had been to The Chiari Institute, too.



You might imagine the emotions that were churning within me at this point.  And

the questions.



Cheryl told me "there is a surgery for it, but they told her in Cleveland that

it is too dangerous to do it".  Cleveland, I inquired?  Yes, Cheryl said "she

went to the Cleveland Clinic, and that is the first place they identified it -

before she went to New York".



I was aghast, but right there, in the church, at the funeral with Rebecca's body

only feet from us, I could not tell them.... how needless her death....



What happened, I inquired?



Cheryl told me that everything was being affected by the Chiari: pains and

Rebecca's breathing; her ability to get around.



I knew that, of course.



"Her digestive tract was beginning to shut down".  That was a new one to me.



"Her pituitary gland was no longer functioning, and her adrenal glands were

shutting down."



I know, I told her - I have those things happening.  The pituitary sometimes

gets squashed by the buildup of spinal fluid in the brain, leading to empty

sella syndrome.  And it affects of course, the thyroid, the adrenals, etc.



**But I knew these things can be addressed!!!***



"They think she had a seizure.  We can't be sure.  She was alone when she passed

away.  The coroner is looking into it."



I want to state here briefly, that Rebecca was a Christian and so am I. I thank

God, that I know she was not entirely alone in that moment.  I know that God was

with her.  I am soooo grateful for that.





It is incredibly hard for me to think....  Rebecca did not have to die.





I struggled a bit with 'why didn't I know?  I could have helped her a lot

sooner...'  but that is the past, and we cannot go back there.  My heart is

wrenched with the knowlege that here I was, in her extended family, with the

knowledge to give to her, but because of the denial, the shame or whatever it

is, her condition was kept quiet.  My husband, and I, never knew she had this

situation.   Last year - I could have directed her to The Chiari Institute -

much sooner!  I was diagnosed at TCI in December 2007... plenty of time to save

Rebecca... but I must remember that I am not in control of what I cannot have

control over.  And I cannot go back in time.  And I know she is now at peace.



Rebecca was a lovely woman in her early 30's who was feisty, sweet and tender

with her children.  She loved her family and was a devoted wife and mother.  She

was talented, artistically, and was a beautiful person to be with.  She leaves

behind a sweet man, her husband, and 4 beautiful little children, who will miss

her terribly.



When the time is right, I will try to communicate - that there is help.  The

operation is worth it.  And you don't have to die - BECAUSE of the children. 

Her children must not suffer what she had to suffer, if they are ever diagnosed

with Chiari.



Please pray for and think of the husband, and children of Rebecca, my niece, who

is finally free from pain.

Thank you so much, Jennifer.



Julie





--- In ptc@yahoogroups.com, "Jennifer Tapp" <jentapp1@...> wrote:

>

> All of you have our prayers...

>

> Jennifer

>

Dear Janine,



Thank you so much.  I understand the chiari being caused by a shunt.  Mine was

caused by a spinal tap, gone awry.  I will pray that your syrinx will shrink or

heal.  God IS the healer.  I will ask Him to be with you and to help the syrinx

to lessen.



My niece Rebecca, had Chiari type III from what I understand, rather than type

I, so hers was probably congenital rather than acquired Chiari.



Please take good care of yourself,



Julie







--- In ptc@yahoogroups.com, jwtooblsd blessed <jwtooblsd@...> wrote:

>

> Julie, I am saddened to hear about your neice. I also have chiari and also a

christian. I have wonderful doctors and my neurosurgeon keeps and eye on it with

mri's. I have a syrinx that developed from it, but the last exray showed it had

shrunk. I have another one this month. I am hoping and praying that it has

shrunk more or gone. I know GOD is a healer. I am always watching the discovery

channel and on Dr. G medical examiner, she did an autopsy on a mentally

challenged guy who was born with chiari, but noone knew it until autopsy.  Mine

was caused by a lumbar shunt (which I no longer have). Have a good weekend.

>  

> Janine/Tx

>

>

>

>

> --- On Sat, 7/4/09, Julie Pence <juleni@...> wrote:

>

>

> From: Julie Pence <juleni@...>

> Subject: [ptc] Obituary for a Wonderful Person

> To: ptc@yahoogroups.com

> Date: Saturday, July 4, 2009, 1:24 AM

>

>

>

>

>

>

>

>

> Our niece Rebecca, who was 34 died this week and we attended her funeral

today. I did not know her well, as I have married into the family she is from:

she is not my niece by blood. She was a lovely person from my few meetings with

her.

>

> I asked today, her husband's stepmother, what caused her death. Previous

answers to this question from my husband and others in her family were very

vague.

>

> Her husband's stepmother said "it was something to do with her spine and neck

and head. She found out she had it when she saw a TV show about it and

recognized many of the symptoms".

>

> This startled me, and I asked 'was it Chiari?? If it was, that is what I

have."

>

> The stepmom, wasn't sure, but her eyes widened. She said 'wait here', and went

to get Rebecca's husband's dad, Jesse. Jesse told me yes, that was what it was

called. Jesse and his wife told me that Rebecca had been to many doctors, even

neurologists and no one could identify her condition. Doctors and friends were

beginning to believe she was a hypochondriac.

>

> Then, she saw a show on the Discovery Channel, and had 16 of the 18 symptoms

listed there. She ended up calling 'someplace in New York'.

>

> "The Chiari Institute?", I asked.

>

> Yes, they told me, that was it and she went there. This spring.

>

> Then Jesse and his wife got Rebecca's husband's real mom to come talk to me.

She knew more of the facts. Her name is Cheryl.

>

> Cheryl was surprised that I have Chiari; surprised I knew so much; surprised I

had been to The Chiari Institute, too.

>

> You might imagine the emotions that were churning within me at this point. And

the questions.

>

> Cheryl told me "there is a surgery for it, but they told her in Cleveland that

it is too dangerous to do it". Cleveland, I inquired? Yes, Cheryl said "she went

to the Cleveland Clinic, and that is the first place they identified it - before

she went to New York".

>

> I was aghast, but right there, in the church, at the funeral with Rebecca's

body only feet from us, I could not tell them.... how needless her death....

>

> What happened, I inquired?

>

> Cheryl told me that everything was being affected by the Chiari: pains and

Rebecca's breathing; her ability to get around.

>

> I knew that, of course.

>

> "Her digestive tract was beginning to shut down". That was a new one to me.

>

> "Her pituitary gland was no longer functioning, and her adrenal glands were

shutting down."

>

> I know, I told her - I have those things happening. The pituitary sometimes

gets squashed by the buildup of spinal fluid in the brain, leading to empty

sella syndrome. And it affects of course, the thyroid, the adrenals, etc.

>

> **But I knew these things can be addressed!!! ***

>

> "They think she had a seizure. We can't be sure. She was alone when she passed

away. The coroner is looking into it."

>

> I want to state here briefly, that Rebecca was a Christian and so am I. I

thank God, that I know she was not entirely alone in that moment. I know that

God was with her. I am soooo grateful for that.

>

> It is incredibly hard for me to think.... Rebecca did not have to die.

>

> I struggled a bit with 'why didn't I know? I could have helped her a lot

sooner...' but that is the past, and we cannot go back there. My heart is

wrenched with the knowlege that here I was, in her extended family, with the

knowledge to give to her, but because of the denial, the shame or whatever it

is, her condition was kept quiet. My husband, and I, never knew she had this

situation. Last year - I could have directed her to The Chiari Institute - much

sooner! I was diagnosed at TCI in December 2007... plenty of time to save

Rebecca... but I must remember that I am not in control of what I cannot have

control over. And I cannot go back in time. And I know she is now at peace.

>

> Rebecca was a lovely woman in her early 30's who was feisty, sweet and tender

with her children. She loved her family and was a devoted wife and mother. She

was talented, artistically, and was a beautiful person to be with. She leaves

behind a sweet man, her husband, and 4 beautiful little children, who will miss

her terribly.

>

> When the time is right, I will try to communicate - that there is help. The

operation is worth it. And you don't have to die - BECAUSE of the children. Her

children must not suffer what she had to suffer, if they are ever diagnosed with

Chiari.

>

> Please pray for and think of the husband, and children of Rebecca, my niece,

who is finally free from pain.

>

--- In ptc@yahoogroups.com, "Julie Pence" <juleni@...> wrote:

>

> Our niece Rebecca, who was 34 died this week and we attended her funeral

today.  I did not know her well, as I have married into the family she is from:

she is not my niece by blood.  She was a lovely person from my few meetings with

her.

>

> I asked today, her husband's stepmother, what caused her death.  Previous

answers to this question from my husband and others in her family were very

vague.

>

> Her husband's stepmother said "it was something to do with her spine and neck

and head.  She found out she had it when she saw a TV show about it and

recognized many of the symptoms".

>

> This startled me, and I asked 'was it Chiari??  If it was, that is what I

have."

>

> The stepmom, wasn't sure, but her eyes widened.  She said 'wait here', and

went to get Rebecca's husband's dad, Jesse.  Jesse told me yes, that was what it

was called.  Jesse and his wife told me that Rebecca had been to many doctors,

even neurologists and no one could identify her condition.  Doctors and friends

were beginning to believe she was a hypochondriac.

>

> Then, she saw a show on the Discovery Channel, and had 16 of the 18 symptoms

listed there.  She ended up calling 'someplace in New York'.

>

> "The Chiari Institute?", I asked.

>

> Yes, they told me, that was it and she went there.  This spring.

>

> Then Jesse and his wife got Rebecca's husband's real mom to come talk to me. 

She knew more of the facts.  Her name is Cheryl.

>

> Cheryl was surprised that I have Chiari; surprised I knew so much; surprised I

had been to The Chiari Institute, too.

>

> You might imagine the emotions that were churning within me at this point. 

And the questions.

>

> Cheryl told me "there is a surgery for it, but they told her in Cleveland that

it is too dangerous to do it".  Cleveland, I inquired?  Yes, Cheryl said "she

went to the Cleveland Clinic, and that is the first place they identified it -

before she went to New York".

>

> I was aghast, but right there, in the church, at the funeral with Rebecca's

body only feet from us, I could not tell them.... how needless her death....

>

> What happened, I inquired?

>

> Cheryl told me that everything was being affected by the Chiari: pains and

Rebecca's breathing; her ability to get around.

>

> I knew that, of course.

>

> "Her digestive tract was beginning to shut down".  That was a new one to me.

>

> "Her pituitary gland was no longer functioning, and her adrenal glands were

shutting down."

>

> I know, I told her - I have those things happening.  The pituitary sometimes

gets squashed by the buildup of spinal fluid in the brain, leading to empty

sella syndrome.  And it affects of course, the thyroid, the adrenals, etc.

>

> **But I knew these things can be addressed!!!***

>

> "They think she had a seizure.  We can't be sure.  She was alone when she

passed away.  The coroner is looking into it."

>

> I want to state here briefly, that Rebecca was a Christian and so am I. I

thank God, that I know she was not entirely alone in that moment.  I know that

God was with her.  I am soooo grateful for that.

>

>

> It is incredibly hard for me to think....  Rebecca did not have to die.

>

>

> I struggled a bit with 'why didn't I know?  I could have helped her a lot

sooner...'  but that is the past, and we cannot go back there.  My heart is

wrenched with the knowlege that here I was, in her extended family, with the

knowledge to give to her, but because of the denial, the shame or whatever it

is, her condition was kept quiet.  My husband, and I, never knew she had this

situation.   Last year - I could have directed her to The Chiari Institute -

much sooner!  I was diagnosed at TCI in December 2007... plenty of time to save

Rebecca... but I must remember that I am not in control of what I cannot have

control over.  And I cannot go back in time.  And I know she is now at peace.

>

> Rebecca was a lovely woman in her early 30's who was feisty, sweet and tender

with her children.  She loved her family and was a devoted wife and mother.  She

was talented, artistically, and was a beautiful person to be with.  She leaves

behind a sweet man, her husband, and 4 beautiful little children, who will miss

her terribly.

>

> When the time is right, I will try to communicate - that there is help.  The

operation is worth it.  And you don't have to die - BECAUSE of the children. 

Her children must not suffer what she had to suffer, if they are ever diagnosed

with Chiari.

>

> Please pray for and think of the husband, and children of Rebecca, my niece,

who is finally free from pain.

>

What are the symptoms of chairi? They thought I had ptc am suffering tememdously

so many diagnoses.  It would help to know the symptoms.

Thank you God Bless You Sue

I have every symptom listed for the chairi now what?  God Bless YOU SUE

--- In ptc@yahoogroups.com, "frankienfriends" <frankienfriends@...>

wrote:

>

> --- In ptc@yahoogroups.com, "Julie Pence" juleni@ wrote:

> >

> > Our niece Rebecca, who was 34 died this week and we attended her

funeral today.  I did not know her well, as I have married into the

family she is from: she is not my niece by blood.  She was a lovely

person from my few meetings with her.

> >

> > I asked today, her husband's stepmother, what caused her death.

Previous answers to this question from my husband and others in her

family were very vague.

> >

> > Her husband's stepmother said "it was something to do with her spine

and neck and head.  She found out she had it when she saw a TV show

about it and recognized many of the symptoms".

> >

> > This startled me, and I asked 'was it Chiari??  If it was, that is

what I have."

> >

> > The stepmom, wasn't sure, but her eyes widened.  She said 'wait

here', and went to get Rebecca's husband's dad, Jesse.  Jesse told me

yes, that was what it was called.  Jesse and his wife told me that

Rebecca had been to many doctors, even neurologists and no one could

identify her condition.  Doctors and friends were beginning to believe

she was a hypochondriac.

> >

> > Then, she saw a show on the Discovery Channel, and had 16 of the 18

symptoms listed there.  She ended up calling 'someplace in New York'.

> >

> > "The Chiari Institute?", I asked.

> >

> > Yes, they told me, that was it and she went there.  This spring.

> >

> > Then Jesse and his wife got Rebecca's husband's real mom to come

talk to me.  She knew more of the facts.  Her name is Cheryl.

> >

> > Cheryl was surprised that I have Chiari; surprised I knew so much;

surprised I had been to The Chiari Institute, too.

> >

> > You might imagine the emotions that were churning within me at this

point.  And the questions.

> >

> > Cheryl told me "there is a surgery for it, but they told her in

Cleveland that it is too dangerous to do it".  Cleveland, I inquired?

Yes, Cheryl said "she went to the Cleveland Clinic, and that is the

first place they identified it - before she went to New York".

> >

> > I was aghast, but right there, in the church, at the funeral with

Rebecca's body only feet from us, I could not tell them.... how needless

her death....

> >

> > What happened, I inquired?

> >

> > Cheryl told me that everything was being affected by the Chiari:

pains and Rebecca's breathing; her ability to get around.

> >

> > I knew that, of course.

> >

> > "Her digestive tract was beginning to shut down".  That was a new

one to me.

> >

> > "Her pituitary gland was no longer functioning, and her adrenal

glands were shutting down."

> >

> > I know, I told her - I have those things happening.  The pituitary

sometimes gets squashed by the buildup of spinal fluid in the brain,

leading to empty sella syndrome.  And it affects of course, the thyroid,

the adrenals, etc.

> >

> > **But I knew these things can be addressed!!!***

> >

> > "They think she had a seizure.  We can't be sure.  She was alone

when she passed away.  The coroner is looking into it."

> >

> > I want to state here briefly, that Rebecca was a Christian and so am

I. I thank God, that I know she was not entirely alone in that moment.

I know that God was with her.  I am soooo grateful for that.

> >

> >

> > It is incredibly hard for me to think....  Rebecca did not have to

die.

> >

> >

> > I struggled a bit with 'why didn't I know?  I could have helped her

a lot sooner...'  but that is the past, and we cannot go back there.  My

heart is wrenched with the knowlege that here I was, in her extended

family, with the knowledge to give to her, but because of the denial,

the shame or whatever it is, her condition was kept quiet.  My husband,

and I, never knew she had this situation.   Last year - I could have

directed her to The Chiari Institute - much sooner!  I was diagnosed at

TCI in December 2007... plenty of time to save Rebecca... but I must

remember that I am not in control of what I cannot have control over.

And I cannot go back in time.  And I know she is now at peace.

> >

> > Rebecca was a lovely woman in her early 30's who was feisty, sweet

and tender with her children.  She loved her family and was a devoted

wife and mother.  She was talented, artistically, and was a beautiful

person to be with.  She leaves behind a sweet man, her husband, and 4

beautiful little children, who will miss her terribly.

> >

> > When the time is right, I will try to communicate - that there is

help.  The operation is worth it.  And you don't have to die - BECAUSE

of the children.  Her children must not suffer what she had to suffer,

if they are ever diagnosed with Chiari.

> >

> > Please pray for and think of the husband, and children of Rebecca,

my niece, who is finally free from pain.

> >

> What are the symptoms of chairi? They thought I had ptc am suffering

tememdously so many diagnoses.  It would help to know the symptoms.

> Thank you God Bless You Sue

>

Dear Sue,



I am sorry I did not see your post sooner; it has been a hard few days.



Would you be able to go to New York, for a two-day trip, to see a doctor at The

Chiari Institute?  I ask this, because this is where I had to go for diagnosis

after several doctors in my locality misdiagnosed me first.



Also, there is a wonderful doctor, Dr. Oro in Colorado.  There is also a new

Chiari Institute, somewhere between New York and Colorado now, I think.



It is important to try to go to a place where you can be seen.  There is some

cost involved, but there are sometimes avenues to help with the cost.



Can you email me at juleni at wowway.com, and let me know more about your

location and symptoms?



Julie







--- In ptc@yahoogroups.com, "frankienfriends" <frankienfriends@...> wrote:

>

> I have every symptom listed for the chairi now what?  God Bless YOU SUE

> --- In ptc@yahoogroups.com, "frankienfriends" <frankienfriends@>

> wrote:

> >

> > --- In ptc@yahoogroups.com, "Julie Pence" juleni@ wrote:

> > >

> > > Our niece Rebecca, who was 34 died this week and we attended her

> funeral today.  I did not know her well, as I have married into the

> family she is from: she is not my niece by blood.  She was a lovely

> person from my few meetings with her.

> > >

> > > I asked today, her husband's stepmother, what caused her death.

> Previous answers to this question from my husband and others in her

> family were very vague.

> > >

> > > Her husband's stepmother said "it was something to do with her spine

> and neck and head.  She found out she had it when she saw a TV show

> about it and recognized many of the symptoms".

> > >

> > > This startled me, and I asked 'was it Chiari??  If it was, that is

> what I have."

> > >

> > > The stepmom, wasn't sure, but her eyes widened.  She said 'wait

> here', and went to get Rebecca's husband's dad, Jesse.  Jesse told me

> yes, that was what it was called.  Jesse and his wife told me that

> Rebecca had been to many doctors, even neurologists and no one could

> identify her condition.  Doctors and friends were beginning to believe

> she was a hypochondriac.

> > >

> > > Then, she saw a show on the Discovery Channel, and had 16 of the 18

> symptoms listed there.  She ended up calling 'someplace in New York'.

> > >

> > > "The Chiari Institute?", I asked.

> > >

> > > Yes, they told me, that was it and she went there.  This spring.

> > >

> > > Then Jesse and his wife got Rebecca's husband's real mom to come

> talk to me.  She knew more of the facts.  Her name is Cheryl.

> > >

> > > Cheryl was surprised that I have Chiari; surprised I knew so much;

> surprised I had been to The Chiari Institute, too.

> > >

> > > You might imagine the emotions that were churning within me at this

> point.  And the questions.

> > >

> > > Cheryl told me "there is a surgery for it, but they told her in

> Cleveland that it is too dangerous to do it".  Cleveland, I inquired?

> Yes, Cheryl said "she went to the Cleveland Clinic, and that is the

> first place they identified it - before she went to New York".

> > >

> > > I was aghast, but right there, in the church, at the funeral with

> Rebecca's body only feet from us, I could not tell them.... how needless

> her death....

> > >

> > > What happened, I inquired?

> > >

> > > Cheryl told me that everything was being affected by the Chiari:

> pains and Rebecca's breathing; her ability to get around.

> > >

> > > I knew that, of course.

> > >

> > > "Her digestive tract was beginning to shut down".  That was a new

> one to me.

> > >

> > > "Her pituitary gland was no longer functioning, and her adrenal

> glands were shutting down."

> > >

> > > I know, I told her - I have those things happening.  The pituitary

> sometimes gets squashed by the buildup of spinal fluid in the brain,

> leading to empty sella syndrome.  And it affects of course, the thyroid,

> the adrenals, etc.

> > >

> > > **But I knew these things can be addressed!!!***

> > >

> > > "They think she had a seizure.  We can't be sure.  She was alone

> when she passed away.  The coroner is looking into it."

> > >

> > > I want to state here briefly, that Rebecca was a Christian and so am

> I. I thank God, that I know she was not entirely alone in that moment.

> I know that God was with her.  I am soooo grateful for that.

> > >

> > >

> > > It is incredibly hard for me to think....  Rebecca did not have to

> die.

> > >

> > >

> > > I struggled a bit with 'why didn't I know?  I could have helped her

> a lot sooner...'  but that is the past, and we cannot go back there.  My

> heart is wrenched with the knowlege that here I was, in her extended

> family, with the knowledge to give to her, but because of the denial,

> the shame or whatever it is, her condition was kept quiet.  My husband,

> and I, never knew she had this situation.   Last year - I could have

> directed her to The Chiari Institute - much sooner!  I was diagnosed at

> TCI in December 2007... plenty of time to save Rebecca... but I must

> remember that I am not in control of what I cannot have control over.

> And I cannot go back in time.  And I know she is now at peace.

> > >

> > > Rebecca was a lovely woman in her early 30's who was feisty, sweet

> and tender with her children.  She loved her family and was a devoted

> wife and mother.  She was talented, artistically, and was a beautiful

> person to be with.  She leaves behind a sweet man, her husband, and 4

> beautiful little children, who will miss her terribly.

> > >

> > > When the time is right, I will try to communicate - that there is

> help.  The operation is worth it.  And you don't have to die - BECAUSE

> of the children.  Her children must not suffer what she had to suffer,

> if they are ever diagnosed with Chiari.

> > >

> > > Please pray for and think of the husband, and children of Rebecca,

> my niece, who is finally free from pain.

> > >

> > What are the symptoms of chairi? They thought I had ptc am suffering

> tememdously so many diagnoses.  It would help to know the symptoms.

> > Thank you God Bless You Sue

> >

>