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PARKINSN  September 1996, Week 4

PARKINSN September 1996, Week 4

Subject:

Pallidotomy Timeline (Long)

From:

"Lewis G. Coggins, Sr." <[log in to unmask]>

Reply-To:

PARKINSN: Parkinson's Disease - Information Exchange Network

Date:

Wed, 25 Sep 1996 12:52:58 -0400

Content-Type:

text/plain

Parts/Attachments:

Parts/Attachments

text/plain (236 lines)

The following is a timeline of my father's pallidotomy procedure at Loma
Linda Medical Center.  We hope that this information might help others
considering having a pallidotomy.  Keep in mind as you read this that
almost all of the tests that Louie went through are not part of a
standard pallidotomy "schedule" but they are for research.  He decided
that he wanted this surgery badly enough to put up with lots of pokes
and prods to assure that he could get his pallidotomy as soon as
possible.  We have tried to be as accurate as possible while
constructing this timeline but it undoubtably has a few errors
(including name spelling!) and omissions, please check with appropriate
authorities/experts before acting on any of this information.  If you
would like to contact either of us about specific questions our e-mail
addresses are:

Lew Jr. and Jennifer Coggins -- [log in to unmask]

Louie Sr. and Shirley Coggins -- [log in to unmask]


January, 1996
An appointment was scheduled with Dr. Iacono at the Loma Linda Medical
Center for March.  March was the earliest date that could be scheduled.


March 19, 1996
First visit to Loma Linda to meet Robert Iacono at the Loma Linda
Medical Center. Dr. Iacono told Louie that he was a very good canidate
for a pallidotomy because he was a true parkinsonian type A.  Since this
is a teaching hosipital, Dr. Iacono has many visiting doctors who are
interested in learning more about the procedure.  They typically
accompany him when he sees patients.  The key players on the team in
addition to Dr. Iacono are Dr. Muhomed, Lead Surgery Nurse Betty.

They determined that he was an excellent canidate by conducting a number
of motor tests.  Dr. Iacono said that June was a possible surgery date.
 Louie, at that time was rated a "4 STAR" which made him higher on the
list.  This means that he is a Type A Parkinsonian of average age, 63,
average symptoms, and average on/off periods.

Helpful hints:
Ask to talk to Don Berns or Tony Shooenberg as they both work there on
Tuesday and are excellent consultants regarding the surgery.

March 19-July 3

Weekly phone calls were made by Shirley and Louie to Cathy at Dr.
Iacono's office to determine a surgery date.

Approx Mid May
A letter arrived from Dr. Iacono's office regarding a PET Scan study
being conducted to determine the effects of Pallidotomies.  Louie was
asked to volunteer in Iacono's study.  This letter stated that
volunteering in this study, to be conducted at the University of
California, Irvine, would enhance Louie's position on the waiting list.

July 3
Dr. Leo VerHagen of the National Institute of Health contacted Louie as
he had received Louie's name from Dr. Iacona as an excellent Pallidotomy
canidate and would Louie be willing to participate in a national study
on Pallidotomies and Sinemet.  Louie and Shirley were told that if they
participated in the study that it would put them higher on Iacono's
normally 3 year waiting list.  The participation would require 2 trips
to NIH in Bethesda, one 30 days prior to surgery and the other 30 days
after.  These tests would run for 5-7 days in which they would compare
the pallidotomy and the sinemet pre and post operative.  All expenses
for Louie would be paid and Shirley's airfare.  Any hotel and food
outside the hospital were not included.

July 30:
Marge Gillespie with NIH called to inform that the date of Surgery was
September 18.  With a preclinic visit begin September 17, 1996.

August 5:
Shirley called Cathy at Iacono's office to confirm the date.  She said a
letter would be forth coming in 2-3 weeks (August 15-21).

August 10-17
Testing at Bethesda Maryland at NIH.  Excellent staff and facilities!
Great treatment and very worthwhile to participate if you are able.

August 29:
Contacted Betty Owens at Iacono's office.  Left a message and she
returned the call promptly, giving the dates of the PET Scan in Irvine,
September 11-12.

September 6:
Recieved a pre-op packet from Iacono's office to confirm the surgery
date, the Irvine testing.  Received notice at that time that Louie was
to have 2 more tests:  the Evoke Potential with Dr. Kenneth Jordan in
San Bernadino and the neo-cognitive with Dr. Linda Nelson of San
Bernadino.

Packet stated that a physical needed to be completed by a local
physician 10 Days before surgery including chest x-ray, blood work, and
an EKG.

Same day, Shirley called Dr. Jordan and made an appointment for Sept. 16
for  the Evoke Potential, a test to evaluate medial nerve (in the arm)
function using electrical stimulation.  It was said it would take about
an hour.

Called Dr. Nelson about the Neo-cognitive test and was told couldn't do
the test  until Sept 24, after the surgery.  Shirley called Cathy Miller
at Dr. Iacono's office and she said to cancel the test due to scheduling
conflicts.

September 7
Appointment with a local Doctor for a physical.

September 9
Found out that Blue Cross Insurance had given their approval of the
surgery on August 16 from Cathy Miller.

September 10
Arrive in Irvine.

September 11
First day of PET Scan F-Dopa for dopomine levels in the brain at UC
Irvine.  This is a 3 - 4 hour procedure in which 2 IVs are inserted,
blood is drawn, radioactive isotopes are injected.  You are required to
lay perfectly still for 3-3 1/2 hours with your head in a tube.  It is a
long and fairly uncomfortable procedure.  Family is allowed to sit with
the patient the entire time with the exception of the radioactive
injection time.  I would encourage you to bring a book to read to the
patient or foot massager and to tell the patient periodically what time
it so as to help the participant.

September 12
Second PET Scan:  FTG Scan to see brain activity.  During the test of
this activity, the machinery had a failure.  This, we were told, happens
periodically and participants must wait a day to finish the PET Scan.
After some time preparing for the scan, we were told that due to
machinery failure, we would need to return the following day.  Be
prepared for changes in schedules.  Very nice people and treated Louie
very well.

September 13
Third day of PET Scan.  The FTG Scan was completed with another set of
IVs in each arm.  During this day, Louie was in the tube for 40 minutes
and participated in a cognitive test, like a video game, for about 30
minutes.  This is also a time when a family member can be with the
patient to help pass the time during the PET Scan once the radioactive
material is no longer harmful.

September 16
Evoke Potential test at Dr. Kenneth Joran's office in San Bernadino.
This test is approximately 1 hour.  Very easy and painless.

September 17
Pre-op visit to Dr. Iacono at 8:30 am.  Louie was given another
examination to test his motor skills.  During this visit met Tony
Schooenburg and Don Berns, both Parkinsons patients who have received
Pallidotomies.  Discussed their results and received many words of
encouragement to ease everyone's mind.  Lasted about 2 hours.  Dr.
Iacono and Muhomed and visiting surgeons conducted standard parkinsons
evaluation tests.  This was when the decision was made to do a bilateral
pallidotomy.

Then came P.A.T.S. :  Pre Admission Testing Services.  Here Louie was
given a chest X-ray, EKG and had blood work done.

3 pm went to hotel.  Stayed at the Hilton with a special rate for Loma
Linda Hospital patients.  Ask about their rate, about $65/night for a
double.  Get it early because their rooms fill up fast.

Called Iacono's office to get surgery time (see where we were in the
order of 3 surgeries to be performed the following day -- they schedule
surgeries for the day based on age and illness.)

September 18
Date of surgery.

6am arrive for pre-op prep.  Still don't know whether Louie is 2nd or
3rd.  Ended up being the first in line because the first patient was
rescheduled.

6:30am insert IV and give a sedative.

Dr. Muhamed and visiting surgeon put on halo, about 15 minutes
procedure.  Family still with Louie.  Tough for family to watch but
being there for dad was important.

7am Louie has an MRI and then goes directly to surgery.

9-11 family waits in waiting area and surgery host informs family on
progress.  Loma Linda is an excellent hospital and the service that the
surgery host provides is invaluable.

11 family is informed surgery is over, successful and went as well as it
could have.  Family gets to talk to Dr. Iacono on the phone.

11:30 Louie is back in recovery, wounds stiched, and comfortable in a
double occupancy room. Doing great, awake.  Voice a little slurred and
very sleepy.

Sleeps most of the afternoon and evening.  Walked and ran a little for
Iacono.  A little nauseous.  Rigidity gone.  Tremor almost gone.  Smell
back after 18 years!

Dr. Iacono, Dr. Muhomed, nursing staff and hospital staff were all
outstanding in Louie's care!  Very prompt service and individualized
attention.

September 19
Feeling good but very sleepy. Post surgical care meeting with Nurse Andy
Alsip.  Andy is very experienced with post pallidotomy care -- she was
great.

Check out at noon.  Sleeps rest of the day except for meals and meds.

Sept 20
Sleeps most of the day except for meals and meds.  Almost all symptoms
of parkinsons gone except slight resting and action tremors.

Sept 21
Awake and lively.  Eager to try out new legs. Went for a 20 minute walk
and then slept most of the rest of the day.

Sept 22
In the morning says, I don't just feel good...I feel great!  Went on a 4
mile hike and then sleeps the rest of the day.

Sept 23
Sleep most of the day. Worn out with sore leg muscles from yesterday.

Sept 24
Post op evaluation with Iacono, about 1 hour. Dr. Iacono was very
pleased with the outcome and showed him off to the patients scheduled
for surger the next day.  Evoke Potential with Dr. Jordan.  Back to
Flagstaff Arizona in the evening.

Sept 25
Back in flagstaff finishing up this post.  We feel that we have been
part of a miracle.  Everyone pray for us that this will continue to
improve.  Loma Linda was a very impressive facility from top to bottom.
 Very caring staff.

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April 2006, Week 4
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April 2006, Week 2
April 2006, Week 1
March 2006, Week 5
March 2006, Week 4
March 2006, Week 3
March 2006, Week 2
March 2006, Week 1
February 2006, Week 4
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February 2006, Week 1
January 2006, Week 5
January 2006, Week 4
January 2006, Week 3
January 2006, Week 2
January 2006, Week 1
December 2005, Week 5
December 2005, Week 4
December 2005, Week 3
December 2005, Week 2
December 2005, Week 1
November 2005, Week 5
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November 2005, Week 3
November 2005, Week 2
November 2005, Week 1
October 2005, Week 5
October 2005, Week 4
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October 2005, Week 1
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March 2005, Week 1
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January 2005, Week 4
January 2005, Week 3
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January 2005, Week 1
December 2004, Week 5
December 2004, Week 4
December 2004, Week 3
December 2004, Week 2
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November 2004, Week 5
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November 2004, Week 1
October 2004, Week 5
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August 2004, Week 5
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July 2004, Week 5
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May 2004, Week 3
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April 2004, Week 5
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April 2004, Week 3
April 2004, Week 2
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February 2004, Week 5
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February 2004, Week 1
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December 2003, Week 5
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December 2003, Week 3
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November 2003, Week 3
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November 2003, Week 1
October 2003, Week 5
October 2003, Week 4
October 2003, Week 3
October 2003, Week 2
October 2003, Week 1
September 2003, Week 5
September 2003, Week 4
September 2003, Week 3
September 2003, Week 2
September 2003, Week 1
August 2003, Week 5
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August 2003, Week 1
July 2003, Week 5
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July 2003, Week 1
June 2003, Week 5
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June 2003, Week 1
May 2003, Week 5
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April 2003, Week 5
April 2003, Week 4
April 2003, Week 3
April 2003, Week 2
April 2003, Week 1
March 2003, Week 5
March 2003, Week 4
March 2003, Week 3
March 2003, Week 2
March 2003, Week 1
February 2003, Week 4
February 2003, Week 3
February 2003, Week 2
February 2003, Week 1
January 2003, Week 5
January 2003, Week 4
January 2003, Week 3
January 2003, Week 2
January 2003, Week 1
December 2002, Week 5
December 2002, Week 4
December 2002, Week 3
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December 2002, Week 1
November 2002, Week 5
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November 2002, Week 3
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November 2002, Week 1
October 2002, Week 5
October 2002, Week 4
October 2002, Week 3
October 2002, Week 2
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September 2002, Week 2
September 2002, Week 1
August 2002, Week 5
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July 2002, Week 2
July 2002, Week 1
June 2002, Week 5
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June 2002, Week 1
May 2002, Week 5
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April 2002, Week 5
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April 2002, Week 3
April 2002, Week 2
April 2002, Week 1
March 2002, Week 5
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March 2002, Week 3
March 2002, Week 2
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February 2002, Week 2
February 2002, Week 1
January 2002, Week 5
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January 2002, Week 1
December 2001, Week 5
December 2001, Week 4
December 2001, Week 3
December 2001, Week 2
December 2001, Week 1
November 2001, Week 5
November 2001, Week 4
November 2001, Week 3
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November 2001, Week 1
October 2001, Week 5
October 2001, Week 4
October 2001, Week 3
October 2001, Week 2
October 2001, Week 1
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August 2001, Week 3
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July 2001, Week 1
June 2001, Week 5
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April 2001, Week 3
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April 2001, Week 1
March 2001, Week 5
March 2001, Week 4
March 2001, Week 3
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March 2001, Week 1
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February 2001, Week 3
February 2001, Week 2
February 2001, Week 1
January 2001, Week 5
January 2001, Week 4
January 2001, Week 3
January 2001, Week 2
January 2001, Week 1
December 2000, Week 5
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December 2000, Week 3
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November 2000, Week 5
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September 2000, Week 2
September 2000, Week 1
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August 2000, Week 3
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June 2000, Week 5
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February 2000, Week 1
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December 1999, Week 5
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April 1999, Week 1
March 1999, Week 5
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December 1998, Week 5
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January 1998, Week 3
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January 1998, Week 1
December 1997, Week 5
December 1997, Week 4
December 1997, Week 3
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December 1997, Week 1
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December 1996, Week 5
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February 1996, Week 1
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December 1995, Week 5
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