From Dr. Lieberman's List: Re F-DOPA PET SCAN

[Guest guest]

For your information, I pass along the message below *******, from Dr.

Lieberman's " Ask the Doctor " list, since we have some familiarity with

Deborah's case. I do question Dr. L's arithmetic. I think 3,000 x 50,000 is

closer to $150 million - still a large sum of money. Maybe he included some

new PET machines in his figure at $2M a pop.

Following the message below ************, I have also posted after

######### a follow up message from Dr. L's list.

These two questions and answers do warrant serious thinking.

*************

Subject: F-DOPA PET SCAN

Date: Fri, 30 Aug 2002 15:19:56 -0400

X-Message-Number: 15

question

There is quite a stir througout the Parkinson's community, that being us

the Parkinson's patients and not the organizations, concerning initial

diagnosis and surgical produres such as DBS.

Many of us are told that the only " positive " way to diagnose Parkinson's

is via a brain autopsy

Recent events involving our dear friend Deborah Setzer is prompting us,

the patients to demand a change in diagnosis as well as verification of

Parkinson's prior to surgeries such as DBS. Deborah was diagnosed nearly

5 years ago, had DBS, took all the brain altering drugs, and today she has

been told she never had Parkinson's and never should have had DBS without

the f-dopa brain scan prior.

My questions, and I believe I know the answers, are:

1. " Prior to surgeries such as DBS, is a f-dopa scan recommended? "

2. " Understanding the cost of a f-dopa pet scan is around $3000, the

machne cost of $2million, the limited hospitals with this machine, as well

as the limited pysicians trained to administer/read the results of this

scan---would it not be beneficial to the Neurologist/MDS and the patient

to obtain this test even if travel may be involved??

3. What percentage of accuracy does the f-dopa scan give?

Thank you for your time,

Tom Berdine

Executive Director

Young Onset Parkinson's Association

www.yopa.org

Founder, www.youngparkinsons.com

answer

90% of the time a neurologist trained in pd can make the diagnose

with accuracy as verified by post mortem examination and

pet scans are not necessary '

given the escalating cost of medicine medicine what we do not need

is 50,000 newly diagnosed pd patients having 3,000 dollar pet scans

this is a cost of 500,000,000 million dollars this sum if we

had it would tell us what causes pd, and result in us having a cure'

and not needing expensive tests to diagnose pd

there will always be exceptional cases but

pet scans a limited usefullness in pd

abe lieberman

----------------------------------------------------------------------

####################

Subject: Re: F-DOPA PET SCAN

Date: Sat, 31 Aug 2002 15:18:28 -0700

X-Message-Number: 30

Could you please elaborate on your statement in the attached e-mail...

" ...pet scans a limited usefulness in pd "

How reliable and accurate are they? Does additional testing need to occur?

Do they do a special " injection " of some sort which defines the diagnosis?

Thank you in advance for your expertise and assistance!

answer

if a specialist trained in pd cannot be certain of the diagnosis

a pet scan may help aside from this i see no role for them

certainly no role to justify their cost

abe lieberman

Sennewald Charlottesville, Virginia

[Guest guest]

Dear ,

Thank you for sharing that information. I've often wondered about

the f-dopa scan with regards to all the neuro diseases. It did not

seem that many folks had them done and obviously it is because the

cost, limited number of units and questionable necessity for

diagnosis. When Jerry was diagnosed with MSA at Columbia

Presbyterian (NYC) they asked if we would consider a PET Scan. It

would be our responsibility to pay for it but I never asked what kind

of PET scan it was because I did not know there were different

types. It was also explained that it was not a necessary procedure

but would help in their research of MSA. It was performed at the

same Hospital Deborah is at right now. The cost was $3000.00 three

years ago. The only thing we heard was " thank you " and you have

MSA. I will now look into the type of scan performed and what value

it had for making or confirming dx. And, if we in any way

contributed to a better understanding of MSA then I guess it was

worth it. However, now that all of you have better educated me I

want to know more about what was actually done.

Thanks again , Jan

>

>

> For your information, I pass along the message below *******, from

Dr.

> Lieberman's " Ask the Doctor " list, since we have some familiarity

with

> Deborah's case. I do question Dr. L's arithmetic. I think 3,000 x

50,000 is

> closer to $150 million - still a large sum of money. Maybe he

included some

> new PET machines in his figure at $2M a pop.

>

> Following the message below ************, I have also posted after

> ######### a follow up message from Dr. L's list.

>

> These two questions and answers do warrant serious thinking.

>

> *************

>

> Subject: F-DOPA PET SCAN

> From: " Anonymous "

> Date: Fri, 30 Aug 2002 15:19:56 -0400

> X-Message-Number: 15

>

>

> question

>

>

> There is quite a stir througout the Parkinson's community, that

being us

> the Parkinson's patients and not the organizations, concerning

initial

> diagnosis and surgical produres such as DBS.

>

>

> Many of us are told that the only " positive " way to diagnose

Parkinson's

> is via a brain autopsy

>

>

> Recent events involving our dear friend Deborah Setzer is prompting

us,

> the patients to demand a change in diagnosis as well as

verification of

> Parkinson's prior to surgeries such as DBS. Deborah was diagnosed

nearly

> 5 years ago, had DBS, took all the brain altering drugs, and today

she has

> been told she never had Parkinson's and never should have had DBS

without

> the f-dopa brain scan prior.

>

>

> My questions, and I believe I know the answers, are:

>

>

> 1. " Prior to surgeries such as DBS, is a f-dopa scan recommended? "

>

>

> 2. " Understanding the cost of a f-dopa pet scan is around $3000, the

> machne cost of $2million, the limited hospitals with this machine,

as well

> as the limited pysicians trained to administer/read the results of

this

> scan---would it not be beneficial to the Neurologist/MDS and the

patient

> to obtain this test even if travel may be involved??

>

>

> 3. What percentage of accuracy does the f-dopa scan give?

>

>

>

> Thank you for your time,

>

>

> Tom Berdine

> Executive Director

> Young Onset Parkinson's Association

> www.yopa.org

>

>

> Founder, www.youngparkinsons.com

>

>

> answer

> 90% of the time a neurologist trained in pd can make the diagnose

> with accuracy as verified by post mortem examination and

> pet scans are not necessary '

> given the escalating cost of medicine medicine what we do not need

> is 50,000 newly diagnosed pd patients having 3,000 dollar pet

scans

> this is a cost of 500,000,000 million dollars this sum if we

> had it would tell us what causes pd, and result in us having a

cure'

> and not needing expensive tests to diagnose pd

> there will always be exceptional cases but

> pet scans a limited usefullness in pd

> abe lieberman

> --------------------------------------------------------------------

--

>

> ####################

>

> Subject: Re: F-DOPA PET SCAN

> From: " Anonymous "

> Date: Sat, 31 Aug 2002 15:18:28 -0700

> X-Message-Number: 30

>

>

> Could you please elaborate on your statement in the attached e-

mail...

>

>

> " ...pet scans a limited usefulness in pd "

>

>

> How reliable and accurate are they? Does additional testing need to

occur?

> Do they do a special " injection " of some sort which defines the

diagnosis?

> Thank you in advance for your expertise and assistance!

>

>

> answer

> if a specialist trained in pd cannot be certain of the diagnosis

> a pet scan may help aside from this i see no role for them

> certainly no role to justify their cost

> abe lieberman

>

>

>

> Sennewald Charlottesville, Virginia