--- 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