Hi Everyone,

We are back from New York and still at a place of being overwhelmed by the
results.  We must say that if you ever go to NYC... Kathleen and Peter
Cochren are wonderful beyond belief.  Kathy came and went to dinner with us
the second day we were there.  She is so much fun.  Then on Saturday both
Kathy and Peter (her husband) drove us all around NYC and took us to dinner
in the Italian district.... yummy to say the least.  We had taken tons of
pics but the camera got demagnetized and deleted everything.  Memories of
mind is all we have but that is more than enough.    Both Robert and I want
to extend our deepest thanks for such wonderful company while there.

Hey Kathy, we kept our word and wore the T-Shirts from the unity walk for 2
days.... we took lots of pics including several with the doc's at Long
Island Jewish Medical Center.  We would have posted them but..... Just
wanted to say thank you thank you thank you.... and Rayilyn.... our thanks
to you for the beautiful flowers that you send along with Kathy and Peter.

We also need to thank Joan H. and Edith L. for their continued support
throughout this misadventure called our life.

Mondays, FDG PET scan showed NO PD+ syndrome.  It did however show that my
midbrain is so far distended into the neck area that it produced no signal
from the isotopes that were injected into me.  (This would correlate with
the Type I Chiari Malformation diagnosis.)

I also had a sleep study done here in Charlotte for the past 24 hours. (Talk
about a distressing experience.... no internet access!  I was planning to
write everyone to tell everyone what went on while there but NO.... whaaa...
internet.)  The sleep study went well.  Blood O2 levels did not drop below
92 all night.  This is a far cry from the 40's that was read last November
when they started me on oxygen at night.  Keep your fingers crossed and your
prayers going because we won't have the results of the Apnea or EEG until
Thursday next week.

We got an email about someone who has a cyst on the spine that was told it
was Chiari... I want to explain what this is...While some people can have
this, it is separate and different from a type I Chiari malformation which
is a herniation  of the cerebellar tonsils.   The cyst is called a syrinx
and can be any place on the spine and causes a blockage in cerebral spinal
fluid flow.  It is not the same as Chiari thought a person with a syrinx can
have Chiari to boot.  What I have is the actual sinking of the Midbrain into
my neck area.  The Cerebellar tonsils have cut off CSF to the brain at the
brain stem, causing ALL of the symptoms that I have been having which
resemble MSA.  The doctor's at the medical center, after watching me on
Friday and then on Monday said "based on clinical observation alone....they
too would have dx me with MSA."  It was only the PET scan that separated me
from this dx which I have lived with for over 3 years.

That last statement alone made us shake in our footsteps.  Had we just
"treated the symptoms" I would have died.  The sad thing is that when we
talked to Dr. Levesque this afternoon, he said, "Unfortunately, the damage
has already been done."  What he went on to say that I need to have the
brain surgery ASAP to put a graft on the cerebellum and lift it back into
the skull and to have a shunt put on the brain stem so that CSF can be
restored.  The atrophy of the brain stem was caused by the cerebellar
tonsils suffocating (so to speak) it.  The operation can "prevent further
damage" from occurring but offers no promise of recovery from the state that
I am now in.

While we are overjoyed with the news that this is not MSA... there still is
a long road ahead of us.  Chiari is thought to be genetic and is often
misdiagnosed as MS, PD, Fibormylegia, MSA, and other rare brain disorders.
It is very important if you have someone in the family with these symptoms
to have other family members tested.  It most often starts to rear its ugly
head between 35 - 45 years of age.  The symptoms are the same as the
alphabet soup disorders and as we can now prove, without the 2 PET scans and
the CT-SPINE MRI with CSF Flow study.... grave consequences and the
inability to be healed can occur.

I know that money is a terrible constraint for almost all of us with these
neurological disorders and I know that not all insurance companies will pay
for exotic tests like I had but I also know that the place we went in NY
never asked us about how we were going to pay.  They had me sign a document
stating that they could use the results for their research.  We have CIGNA
insurance and a case manager that works with and for us.  CIGNA's policy
states that PET is covered... it doesn't say what kind of PET
specifically... there are 16 different types of isotopes that can be used.
Because of this...even the "experimental" isotopes are covered.   PET
imaging has been available for the public for PD and PD+ disorders at this
facility for 15 years!!!  I have know about it for 18 months and have asked
every doctor that I have seen for the past 17 months for the test only to be
told over and over and over again that it was not necessary because "their"
opinion on clinical observation, time, lack of response to meds, symptoms
and progression that I indeed had MSA and the test was not warranted!
Excuse me... B.S!!!

Had we not pushed forward, we would be treating the symptoms and I would in
fact die.  Now there is a new path to take.  No promises, but still a new
path.  I do still share with all on the list the same symptoms and the same
treatment of those symptoms but it looks like another brain surgery is in my
very near future.

I have been through a lot... including the DBS.  I pray that my experience
will help those who feel all hope is lost to know that maybe, just maybe,
prayers can be answered and it might indeed be something other than what
only "autopsy" will discover.   Please, don't wait until death to discover
that you or your love one had something that could have been worked with.
I'm so glad that Robert didn't give up on me and finding the answer even
after I had given up on myself and had accepted death as my only option.

Hugs, Warm Fuzzies, and Deepest gratitude for the support you folks have
given us,

Deborah aka Tenacity

P.S.  Tomorrow I will post the pic of both PET scans to my photo site for
you to view.  http://community.webshots.com/user/tenacitywins

But for the grace of God, Go I!



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