Great success story Don. How about balance and fatigue.? Best to you.
[log in to unmask] 70/1
-----Original Message-----
From: Karen & Don Berns <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Thursday, December 10, 1998 9:13 AM
Subject: Don Berns 5 yr Pallidotomy Rpt.
5 YEAR POST-Pallidotomy REPORT
(Surgery date 12/1/93)
By Dr. Don Berns
UPDRS On Off
3 11
After having suffered through the ravages of Parkinson's Disease
for 12 1/2 years I was privileged to become Dr. Iacono's first simultaneous
Pallidotomy patient. NOW AT MY FIVE YEAR ANNIVERSARY I MUST SAY TO ALL THE
NAYSAYERS WHO SAID THAT A Pallidotomy WOULD ONLY LAST A YEAR OR TWO AT THE
MOST.
AT FIVE YEARS I AM STILL GOING STRONG AND CONSIDER THE results to
be nothing short of MIRACULOUS.
COLUMN CODES
1. SYMPTOM BEFORE SURGERY
2. 6 mos. AFTER SURGERY
3. 1 YR. POST-OPT
4. 1 1/2 YR. POST- OPT
5. 2 YR. POST-OPT
6. 3 YR. POST-OPT
7. 4 YR. POST-OPT
8. 5 YR. POST-OPT
SYMPTOM COLUMNS
1 2 3 4 6 7 8
TREMOR Severe GONE GONE GONE GONE GONE
GONE
DYSKINESIA Excessive GONE GONE GONE GONE GONE
GONE
SWEATING Excessive GONE GONE GONE GONE GONE
GONE
SLEEP
DISTURBANCE Definite GONE GONE GONE GONE GONE
GONE
EYELIDS Slightly
During Sleep Open Closed Closed Closed Closed Closed
CLOSED
SHUFFLE Definite GONE GONE GONE GONE GONE
GONE
GAIT FREEZE Definite GONE GONE GONE GONE GONE
GONE
SENSE SMELL GONE Back Back Back Back Back
BACK
ACHING
MUSCLES Definite NONE NONE NONE Rarely Rarely
Rarely
BACK PROBLEMS Definite GONE GONE GONE GONE GONE
GONE
AKINESIA Definite GONE GONE GONE GONE GONE
GONE
BRADYKINESIA Definite GONE GONE Slight Slight Slight
Slight
SEXUAL STAYING
POWER Lessened Enhancd Enhancd Enhancd Enhancd Enhancd
Enhanced
STRESS Severely No No No No No No
Affected Effect Effect Effect Effect Effect
Effect
DROOLING NONE Slight Slight Seldom Seldom Seldom
Seldom
URGENCY TO URINATE Yes No No Slight Slight
Slight
DYSTONIA NONE NONE NONE NONE NONE NONE
None
VOICE Weak Improved Improved Improved Varies Varies
Varies
SPEECH Affected Improved Improved Improved Varies Varies
Varies
SHORTNESS OF
BREATH Affected NONE NONE NONE NONE NONE
None
HANDWRITING Very Bad Normal Normal Normal Normal Normal
Normal
ON-OFF Definite GONE GONE GONE GONE GONE
GONE
APPETITE Very Poor Normal Normal Normal Normal Normal
Normal
MEDICINE SCHEDULE
1 2 3 4 5 6 7 8
___________________________________________________________________
Sinemet CR
50-200 3.5 3.5 3.5 4 4 4 5 5
Sinemet 25-100 1
Sinemet 10-100 .5 .5 .5 .5 2 1 6
Eldepryl 2 1 1 1 0 0 0 0
Amantadine 3 1 1 1 1 1 1 1
Permax 5mg 4 1.5 1.5 1.5 1.5 1.5 2 2
Zoloft 50 mg 1 1 1 1 1
Paxil 1 1 1
Hydergine 0 0 4 4 4 0 0 0
VITAMINS etc.
In addition to the above meds I take the following on a daily
basis: 800 I.U. of Vitamin E, 1000 mg of vitamin C, 750 mg of Chewable
Calcium, and two Ginkoba tablets. Since December 1995, I have been
using magnetic therapy in the form of insoles for my shoes, chair pads, and
sleeping on a magnetic sleep pad. All of which I believe have benefited me
in sleeping sounder and feeling more energized.
OTHER PATIENT RESULTS
Although I no longer go out to Loma Linda to work with Dr. Iacono since I
have moved to Pittsburgh. Over the years I have seen literally hundreds of
patients who have elected to have a unilateral Pallidotomy, a bilateral
Pallidotomy or a combination Pallidotomy/Thalamotomy.
Conservatively 85% of these patients have a good result ranging
from a C+ to an A+. 10-12% receive minimal help, but no harm is done, and
3-5% have some sort of complication usually a result of bleeding. NO ONE
has died as the result of this surgery or attendant complications. These
results are based on a very broad patient selection pool.
FURTHER REFLECTIONS ON PALLIDOTOMY.
In further reflecting on my Pallidotomy I believe that after five
years I can make the following statements:
The Pallidotomy intervened into my Parkinson's Disease and
re-balanced the brain taking into account the dopamine and seratonin
depletion that existed and given the medicine schedule I was on at the
time. This in a sense reset my Parkinson's Disease time clock back to
zero.
I now have the luxury of taking a little more medicine when needed
without facing those dreaded dyskinesias. The greatest deficits I face are
occasional drooling, getting sleepy mid-morning or mid-afternoon, some
slurred speech when I am tired or low on medicine, and being slightly
slowed down in the late evening. There has been some deterioration in
speech quality over the last year and a half. You will notice from the
chart above that I have increased my Sinemet intake which has presented no
problems. AT 4 1/2 YEARS I MADE A SUBSTANTIAL INCREASE IN MY SINEMET FROM
1200 TO 1600 mg/day of LEVADOPA WITH VERY GOOD RESULTS.
Concerning the stimulator implants, that may be a way to go if your
surgeon has not had much experience or very good results with
Pallidotomies.
I continue to feel my life was given back to me through the
Pallidotomy and tend to view every day as a bonus day, a gracious gift from
God.
FOR MORE INFO SEE WEB SITES
Website for Dr. Iacono and pallidotomies:
www.pallidotomy.com 909-792-8188
Website for Don Berns story:
www.parkinsonalliance.net/medical/palberns.htm
Dr. Don Berns
110 Delano Dr.
Pittsburgh, PA 15236
412-650-6812
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