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and thank YOU, Bernie, for re-posting this loooong post, which has been seen here in quite a number of days.- 4 I think. Just in case someone out there just awoke from a coma since last night & did not see Bernie's re-post - here it is yet again. Keep up the good work , Bernie !!! [The problem with these long re-posts and useless Thank You messages is you get no clue from the subject line, so you end up opening it. I mean it IS conceivable that even Berniie might be just forwarding back a key line and adding an interesting, helpful or inquiring comment. Stranger things have happened] -----Original Message----- From: bernard klainberg <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Monday, December 14, 1998 12:55 AM Subject: Re: Don Berns 5 yr Pallidotomy Rpt. >thanks for the info > >---------- >From: Karen & Don Berns <[log in to unmask]> >To: Multiple recipients of list PARKINSN <[log in to unmask]> >Subject: Don Berns 5 yr Pallidotomy Rpt. >Date: Thursday, December 10, 1998 12:07 PM > >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 ><[log in to unmask]> >----------