More Results

[Guest guest]

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

[Guest guest]

Deborah, I know someone who had the operation a few years ago. She lives in

Vermont. I haven't seen her for years, but my husband did recently. I guess

she is having trouble moving her head easily from side to side right now,

but otherwise doing well.

It is a huge operation, but you will come through it. Debbie

[Guest guest]

HI TENACITY.

YOUR HUSBAND WROTE TO ME WHILE YOU WERE OUT OF POCKET.

I'VE HAD SOMEONE WITH YEARS OF EXPERIENCE IN CHIARI TAKE AN INTEREST

IN ME. HE HAS STATED SOME THINGS IN HIS VIEWING OF MY MRI PICS -

NAMELY THAT HE SAW SIMILARITIES BETWEEN MINE AND HIS DAUGHTER'S

PICS. AS I WAS TELLING YOUR HUSBAND, HE RECOMMENDED 2 DOCS IN THE

CHICAGO AREA, AND ONE IN NEW YORK. MY QUESTION TO YOU (ONE OF THEM)

IS... DOES IT REALLY MATTER WHAT DOC I SEE? I KNOW, FROM WHAT THIS

GENTLEMAN SAYS, THERE ARE SOME WHO ARE VERY GOOD AT FINDING

CONDITIONS SUCH AS YOURS FROM MRI PICS ALONE - BUT IF THESE PET SCANS

ARE AS GOOD AS YOU SAY - CAN PRETTY MUCH ANY NEURO TELL FROM THEM?

IN ADDITION TO THE USUAL COST FACTORS, I ALSO HAVE TRAVEL AND THOSE

COSTS WHICH ARE CONSIDERATIONS (AND THE LOST INCOME WHICH RESULTS -

AS I AM STILL WORKING - MINIMALLY)

YOUR POINT ABOUT FAMILY MEMBERS IS WELL TAKEN. THIS IS THE MAIN

REASON I CONTINUE TO PURSUE ANY OTHER THINGS OUT THERE THIS COULD

BE. MY ELDEST DAUGHTER (WHO IS BUT 11) HAS MANY OF THE SAME SYMPTOMS

OF ME. WHILE IT'S EASY TO SHRUG IT OFF AS FIBROMYALGIA - IT SEEMS

LIKE MORE, PLUS, AS YOU'RE WELL AWARE - THE TWO CAN MIRROR EACH

OTHER. SHE'S MY PRIMARY REASON. HER, AND MY YOUNGEST - WHO IS BUT 6

Y.O. - WHO HAS SIGNIFICANT NEUROPATHY PROBLEMS - AND A SLEEP

DISORDER... AS YOU'RE PROBABLY WELL AWARE, CHIARI CAN AFFECT VERY

YOUNG CHILDREN AS WELL. (AND... INDEED, THIS WOULD " FIT " BETTER

THAN MSA - IF THERE IS HEREDITY INVOLVEMENT - AS MSA IS NOT SUPPOSE

TO HAVE ANYTHING TO DO WITH HEREDITY - RIGHT?) SECONDARY IS JUST

WHAT YOU CITED IN THIS POST... THAT I'D HATE TO FIND OUT LATER THAT

THERE WAS SOMETHING I COULD HAVE DONE - BUT DIDN'T.

THANKS IN ADVANCE FOR YOUR RESPONSE TO THIS POST. I WOULD HAVE

EMAILED IT TO YOU - BUT I THOUGHT THIS INFO WOULD BE VALUABLE TO

OTHERS AS WELL AS MYSELF.

> 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