Re: More Results>Deborah

[Guest guest]

Deborah,

Please excuse my ignorance but I need to ask this. After you have

this brain surgery will you be well without the MSA symptoms? I did

read about Chairi type 1 and read about the tonsils blocking the CFS

in the brain. I am so glad that you were able to find this out about

yourself! You have been through a lot of test and surgeries. It is a

shame that you had to go through needless tests and surgeries. I

think these tests should be offered being that I had thought there

wasn't a test out there to prove what we have and don't have. This is

great news! I go see my neurologist Tuesday and I will ask him about

it then. I am glad you both are home safely.

God bless and sending love and gentle hugs,

Belinda

> > Hi Everyone,

> >

> > We are back from New York and still at a place of being

overwhelmed

> by

> > the results.

> >

> > 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.

> >

> > Back to the questions asked and posts I read on the list while

> > gone....Bill W. referred to a cyst in chiari. 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 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