Fwd: A true story of medical problems, and a warning (long & important)

[Guest guest]

Dear CGs-- some of you who are on the PIEN and /or SPARKLE lists will

have seen some of this information. I had not heard about the

extremely difficult medical challenges Deborah Setzer is facing, but

Edith Love has sent me a number of posts about her, since there are

serious lessons here for all of us as CGs.

Apparently, Deborah was first thought to have PD and was treated for

that. We all know that mis-diagnosis is common and that is not so

unusual. However she has had unusual problems, and a small group of

list-friends has gathered around her to offer all kinds of support.

One main lesson to be learned is that we must ALWAYS follow up on

tests and diagnoses, and be sure the doctors don't miss things that

are found, but easily overlooked, as in her case, the high risk for

ovarian cancer.

This reminds us again how essential CGs are in advocating and

running interference for our loved ones. The " system " can too

easily chew them up and spit them up if we aren't looking ! Please

note that the FDOPA pet scan is a little known test that can

provide valuable information, especially for those considering DBS. Also,

Deborah's experience seems to show that it pays to be hypervigilant about

following up on every test and insist on going over all results with the

doctor.

At the end of this post is the address of the hospital in case you

are led to send a card to Deborah---

I'm sure any evidence of concern and support will be very welcome.

Here is a post which explains her situation:

*******

Previously, Deborah wrote:

Dr. Levesque spent over 2 hours with us and examined my MRI's, CT's

and glucose PET scans from 1999 - present. He found the problems back in

1999 - 2000 series of the MRI's.. the same MRI's that all the other neuro's

that I had seen also had and read. The difference is that he did not

miss anything and also made an apt. with a neuro-radiologist at

Cedar-Sinai hospital to

confirm what he found, to make sure he didn't miss anything and to

chart the progression.

Here are his findings:

1. I do NOT have Parkinson's Disease

2. I have a type of Multiple Systems Atrophy..defiantly

striational nigral

degeneration (SND) but PROBABLY progressive subnuclear palsy (PSP).

3. I have moderate atrophy of the right hippocampus

4. I have severe atrophy and degeneration of the brain stem

5. I have a type 1 chiari malformation (this is a herniation

of the cerebellar tonsils. )

6. I have a cyst on the temporal lobe of my brain

7. I have a cyst in the pituitary gland

8. I have a compressed/herniated disk at cervical 5.

Here is what he said in relation to treatment options:

1. I do not qualify for the stem cell transplant study for

Parkinson's disease because I do NOT have Parkinson's disease.

2. I need a F-DOPA PET scan to prove my having SND or PSP.

a. We are having a lot of trouble locating a facility to have this test

None available in N.C., called Emory in Atlanta and they no longer are

conducting the PET study on F-DOPA so it is no longer available there.

b. We were told even if we found a place that has the capability of

doing the test: Most insurance companies will not cover this test

I don't know what the current cost of the procedure is but in

March of 2001 when I first started looking into having this done, the cost at

that time was $21,000. Needless to say we can't pay that.

so that it could be paid for even though we have a prescription for the test.

3. Once we get the results of the F-DOPA PET, if it is PSP then

there is nothing more that can be done.

4. IF the results show SND, then Dr. Levesque can recommend us to

the board of research to be considered to be a candidate in the first

ever adult stem cell transplant for someone with a Parkinson's Plus

Disorder...specifically

and only SND. This particular study will accept only 1 person for

stage 1 clinical trial.

5. IF I have SND and I get accepted into the clinical trial as the

first and only person to get into it then I will consider having the

surgery for

the chiari malformation and the disc.

Here is the information related to the Chiari and disc surgery.

1. The doctor said at this point in time there is no compression

from the Chiari but that does not mean that there never was one.

2. He said that the surgery could make me better, could do nothing

or could make me much worse. there is no way to tell. Also this surgery could

take up to a year for me to heal. The disc surgery could take up to 4 months

for me to heal.

3. With either surgery, he said that due to my immune system and

respiratory problems, there is a good chance that they would not be

able to take me

off of life support once they intubated me for surgery. He also

said that knowing what he does, he could work with it.

4. If I get accepted into the stem cell trial if I have only SND then

a doctor involved in the study would have to take a biopsy of my brain to

grow more stem cells from. This process lasts 4 - 6 months before the

transplant can be done.

Now everyone has the facts. Here are my wishes.

1. I will agree to the F-DOPA PET scan if we can find a place where

we can have it with our limited funds.

2. IF the test shows PSP, I want no more invasive treatments of any kind.

3. IF the test shows SND AND I get accepted into the stem cell

trial program, I will consider having the chiari malformation and disc surgery

at the same time.

4. If I have SND and am accepted into the clinical trial for

the stem cell

treatment, I will go for the treatment.

5. IF the test shows SND and I do not get accepted into the

study,I do not want to have any more invasive procedures.

I love dearly and understand his pain in wanting to save me but

I have come to the point where I accept my diagnosis and am ok with it.

Since I have come to the point of acceptance, I no longer am depressed or

afraid. I hope from the bottom of my heart that can understand that I

just want peace and comfort in my final months and/or days. I don't

want to participate in any surgery that will take my last year and

have to spend

that year recovering from it.

Dr. Levesque told me that my pain will not ever be much more than

what

I am currently experiencing. That fact made me feel better. I already

know that I am living with the pain as it currently is. (Snipped)

Thank you everyone for being my friend and 's friend through

all that we have gone through. You are appreciated beyond words.

Much Love, Deborah Setzer aka Tenacity

*******

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.

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.(8/22)

******

Kathleen Cochran wrote later:

Today, Monday, what we know is that they meet with all the doctors and

other medical staff and Deborah begins a set of 32 tests that must be taken

before surgery which, at this point in time is scheduled for is Wednesday at

10:30 am EST. (I will confirm the time and send a reminder on Tuesday

night).

Usually, Deborah has had time to research her tests and to understand enough

of what was going to happen to her so a lot of the fear was removed.....

This time, everything has moved so quickly, there was no time for research

which makes it all the more unnerving for her. She no longer has any veins

showing and the pain that results is unbearable. And, now, there is the

additional factor of Ovarian Cancer that has to be dealt with. And, yet,

none of these 32 tests mentioned above include tests for the ovarian cancer

which will also be done.

Deborah and just " found out " about the Ovarian Cancer this past

Friday when went and picked up Deborah's records from their local

doctor to take them to NY and she read her own files....it showed notations

regarding Chiari in 2000 and also for Ovarian Cancer which is in her

family....the doctors failed to retest or to notify her....and nobody caught

it....it looks like diagnoses in her records and action memos were

ignored..........and now she's paying the price.

*******

Aug. 19:

Kathleen Cochran just posted an update to the list, but she adds

this: " while they do continue

to exhibit amazing resilience, both D & R are very tired and Deborah is

experiencing a fair amount of pain, for which her condition doesn't permit

the degree of medication you or I might expect. The hospital is crowded,

noisy, and shabby, and when I spoke to her she was about to get, of all

things, a roommate. She was supposed to have a private room (compromised

immune system, impending surgery) but someone else refused to move, and

there are not enough beds....Sounds grim.

They still don't know why they were rushed into surgery with such urgency,

and this is very anxiety-provoking.

One thing I have been getting a sense of is how alone they have been through

all this. There is some family support, but not much, and all of us are very

important to them. We need to keep the messages of support coming on- and

off-list. According to , Deborah's family is worse than remote

-- they do and say

things that are so callous and hurtful it takes your breath away.

********

Date: Sun, 18 Aug 2002 15:15:18 -0700

Edith Love wrote in part:

>They are 2 of the bravest people I know, and Deborah is one of the most

>intelligent, learned individuals it has been my pleasure to meet-cyber or

>not.

>

>Tomorrow begins a set of 32 tests that must be taken before surgery which

>is Wed. None of these test include tests for OC which will also be done.

>

>Deborah is frightened-who wouldn't be-and what concerns her most is she is

>unfamiliar with many of the procedures that will occur. She hasn't had time

>to research and to understand enough of what is going to happen to her.

>She no longer has any veins showing and the pain that results is unbearable.

>She also wonders why everything is happening so suddenly. I reminded her of

>all that she's been through and all the problems that have resulted-that

>under the circumstances it is no wonder she is priority one.

>

>Dr. Raad handed them her medical records with a GO; yet, as good as he has

>been, diagnoses in her records and action memos were ignored. In 2000

>there was a red light for Chiari. No one caught it. There was a red light

>for OC--it's in her family--they failed to retest or to notify. And,

>affirmative, a well-known malpractice attorney is now on their team.

>

Again, here is her information. She needs all the kindness and support we can

send her way. "

North Shore University Hospital, Room 474

300 Community Drive

Manhasset, NY 11030

*****

--

Camilla Flintermann

flintec@...>

on the web at http://www.geocities.com/camillahf/index.html

" Love People----

----- Use Things "

[Guest guest]

-Camilla,

I am not a CG but a sickie. I don't know what I am called. Thank you

for updating us on Deborah. I know that she is scared and for good

reason also. I would be also. How long did you say Deborah is going

to be in NYC? Is she able to sleep there. Are they letting her use

her laptop in the hospital? I will contact her. Thanks again for

letting us know.

Belinda

-- In shydrager@y..., kmcrae@a... wrote:

>

>

> Dear CGs-- some of you who are on the PIEN and /or SPARKLE lists

will

> have seen some of this information. I had not heard about the

> extremely difficult medical challenges Deborah Setzer is facing, but

> Edith Love has sent me a number of posts about her, since there are

> serious lessons here for all of us as CGs.

> Apparently, Deborah was first thought to have PD and was treated for

> that. We all know that mis-diagnosis is common and that is not so

> unusual. However she has had unusual problems, and a small group of

> list-friends has gathered around her to offer all kinds of support.

> One main lesson to be learned is that we must ALWAYS follow up on

> tests and diagnoses, and be sure the doctors don't miss things that

> are found, but easily overlooked, as in her case, the high risk for

> ovarian cancer.

> This reminds us again how essential CGs are in advocating and

> running interference for our loved ones. The " system " can too

> easily chew them up and spit them up if we aren't looking !

Please

> note that the FDOPA pet scan is a little known test that can

> provide valuable information, especially for those considering DBS.

Also,

> Deborah's experience seems to show that it pays to be hypervigilant

about

> following up on every test and insist on going over all results

with the

> doctor.

>

> At the end of this post is the address of the hospital in case you

> are led to send a card to Deborah---

> I'm sure any evidence of concern and support will be very welcome.

>

> Here is a post which explains her situation:

> *******

> Previously, Deborah wrote:

> Dr. Levesque spent over 2 hours with us and examined my MRI's,

CT's

> and glucose PET scans from 1999 - present. He found the problems

back in

> 1999 - 2000 series of the MRI's.. the same MRI's that all the other

neuro's

> that I had seen also had and read. The difference is that he did

not

> miss anything and also made an apt. with a neuro-radiologist at

> Cedar-Sinai hospital to

> confirm what he found, to make sure he didn't miss anything and to

> chart the progression.

> Here are his findings:

> 1. I do NOT have Parkinson's Disease

> 2. I have a type of Multiple Systems Atrophy..defiantly

> striational nigral

> degeneration (SND) but PROBABLY progressive subnuclear palsy

(PSP).

> 3. I have moderate atrophy of the right hippocampus

> 4. I have severe atrophy and degeneration of the brain stem

> 5. I have a type 1 chiari malformation (this is a herniation

> of the cerebellar tonsils. )

> 6. I have a cyst on the temporal lobe of my brain

> 7. I have a cyst in the pituitary gland

> 8. I have a compressed/herniated disk at cervical 5.

>

> Here is what he said in relation to treatment options:

> 1. I do not qualify for the stem cell transplant study for

> Parkinson's disease because I do NOT have Parkinson's disease.

> 2. I need a F-DOPA PET scan to prove my having SND or PSP.

> a. We are having a lot of trouble locating a facility to

have this test

> None available in N.C., called Emory in Atlanta and they no

longer are

> conducting the PET study on F-DOPA so it is no longer available

there.

> b. We were told even if we found a place that has the

capability of

> doing the test: Most insurance companies will not cover this test

> I don't know what the current cost of the procedure is but in

> March of 2001 when I first started looking into having this done,

the cost at

> that time was $21,000. Needless to say we can't pay that.

> so that it could be paid for even though we have a prescription

for the test.

> 3. Once we get the results of the F-DOPA PET, if it is PSP then

> there is nothing more that can be done.

> 4. IF the results show SND, then Dr. Levesque can recommend

us to

> the board of research to be considered to be a candidate in the

first

> ever adult stem cell transplant for someone with a Parkinson's Plus

> Disorder...specifically

> and only SND. This particular study will accept only 1 person

for

> stage 1 clinical trial.

> 5. IF I have SND and I get accepted into the clinical trial

as the

> first and only person to get into it then I will consider having

the

> surgery for

> the chiari malformation and the disc.

> Here is the information related to the Chiari and disc surgery.

> 1. The doctor said at this point in time there is no

compression

> from the Chiari but that does not mean that there never was one.

> 2. He said that the surgery could make me better, could do

nothing

> or could make me much worse. there is no way to tell. Also this

surgery could

> take up to a year for me to heal. The disc surgery could take up to

4 months

> for me to heal.

> 3. With either surgery, he said that due to my immune system

and

> respiratory problems, there is a good chance that they would not

be

> able to take me

> off of life support once they intubated me for surgery. He also

> said that knowing what he does, he could work with it.

> 4. If I get accepted into the stem cell trial if I have only

SND then

> a doctor involved in the study would have to take a biopsy of my

brain to

> grow more stem cells from. This process lasts 4 - 6 months

before the

> transplant can be done.

>

> Now everyone has the facts. Here are my wishes.

>

> 1. I will agree to the F-DOPA PET scan if we can find a

place where

> we can have it with our limited funds.

> 2. IF the test shows PSP, I want no more invasive treatments

of any kind.

> 3. IF the test shows SND AND I get accepted into the stem cell

> trial program, I will consider having the chiari malformation and

disc surgery

> at the same time.

> 4. If I have SND and am accepted into the clinical trial for

> the stem cell

> treatment, I will go for the treatment.

> 5. IF the test shows SND and I do not get accepted into the

> study,I do not want to have any more invasive procedures.

>

> I love dearly and understand his pain in wanting to save

me but

> I have come to the point where I accept my diagnosis and am ok with

it.

> Since I have come to the point of acceptance, I no longer am

depressed or

> afraid. I hope from the bottom of my heart that can

understand that I

> just want peace and comfort in my final months and/or days. I don't

> want to participate in any surgery that will take my last year and

> have to spend

> that year recovering from it.

> Dr. Levesque told me that my pain will not ever be much more

than

> what

> I am currently experiencing. That fact made me feel better. I

already

> know that I am living with the pain as it currently is. (Snipped)

> Thank you everyone for being my friend and 's friend

through

> all that we have gone through. You are appreciated beyond words.

> Much Love, Deborah Setzer aka Tenacity

> *******

>

> 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.

> 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.(8/22)

> ******

> Kathleen Cochran wrote later:

> Today, Monday, what we know is that they meet with all the

doctors and

> other medical staff and Deborah begins a set of 32 tests that must

be taken

> before surgery which, at this point in time is scheduled for is

Wednesday at

> 10:30 am EST. (I will confirm the time and send a reminder on

Tuesday

> night).

>

> Usually, Deborah has had time to research her tests and to

understand enough

> of what was going to happen to her so a lot of the fear was

removed.....

> This time, everything has moved so quickly, there was no time for

research

> which makes it all the more unnerving for her. She no longer has

any veins

> showing and the pain that results is unbearable. And, now, there

is the

> additional factor of Ovarian Cancer that has to be dealt with.

And, yet,

> none of these 32 tests mentioned above include tests for the

ovarian cancer

> which will also be done.

>

> Deborah and just " found out " about the Ovarian Cancer this

past

> Friday when went and picked up Deborah's records from their

local

> doctor to take them to NY and she read her own files....it showed

notations

> regarding Chiari in 2000 and also for Ovarian Cancer which is in

her

> family....the doctors failed to retest or to notify her....and

nobody caught

> it....it looks like diagnoses in her records and action memos were

> ignored..........and now she's paying the price.

> *******

> Aug. 19:

> Kathleen Cochran just posted an update to the list, but she adds

> this: " while they do continue

> to exhibit amazing resilience, both D & R are very tired and

Deborah is

> experiencing a fair amount of pain, for which her condition doesn't

permit

> the degree of medication you or I might expect. The hospital is

crowded,

> noisy, and shabby, and when I spoke to her she was about to get, of

all

> things, a roommate. She was supposed to have a private room

(compromised

> immune system, impending surgery) but someone else refused to

move, and

> there are not enough beds....Sounds grim.

>

> They still don't know why they were rushed into surgery with such

urgency,

> and this is very anxiety-provoking.

>

> One thing I have been getting a sense of is how alone they have

been through

> all this. There is some family support, but not much, and all of us

are very

> important to them. We need to keep the messages of support coming

on- and

> off-list. According to , Deborah's family is worse than

remote

> -- they do and say

> things that are so callous and hurtful it takes your breath away.

> ********

> Date: Sun, 18 Aug 2002 15:15:18 -0700

> Edith Love wrote in part:

>

> >They are 2 of the bravest people I know, and Deborah is one of the

most

> >intelligent, learned individuals it has been my pleasure to meet-

cyber or

> >not.

> >

> >Tomorrow begins a set of 32 tests that must be taken before

surgery which

> >is Wed. None of these test include tests for OC which will also

be done.

> >

> >Deborah is frightened-who wouldn't be-and what concerns her most

is she is

> >unfamiliar with many of the procedures that will occur. She

hasn't had time

> >to research and to understand enough of what is going to happen to

her.

> >She no longer has any veins showing and the pain that results is

unbearable.

> >She also wonders why everything is happening so suddenly. I

reminded her of

> >all that she's been through and all the problems that have

resulted-that

> >under the circumstances it is no wonder she is priority one.

> >

> >Dr. Raad handed them her medical records with a GO; yet, as good

as he has

> >been, diagnoses in her records and action memos were ignored. In

2000

> >there was a red light for Chiari. No one caught it. There was a

red light

> >for OC--it's in her family--they failed to retest or to notify.

And,

> >affirmative, a well-known malpractice attorney is now on their

team.

> >

>

>

>

>

> Again, here is her information. She needs all the kindness and

support we can

> send her way. "

>

> North Shore University Hospital, Room 474

> 300 Community Drive

> Manhasset, NY 11030

>

> *****

>

> --

> Camilla Flintermann

>

>

>

> on the web at

http://www.geocities.com/camillahf/index.html

>

> " Love People----

> ----- Use Things "