7 1/2 yEAR POST-Pallidotomy REPORT (Surgery date 12/1/93) By Dr. Don Berns United Parkinson's Disease Rating Scale (UPDRS) On Off Prior to Surgery 12/1/93 -46 -51 Six Years Post-surgery 12/1/99 -4 -12 Seven and one half Years Post-surgery -2 -12 How can I say thanks for the radical transformation that took place in my life 7 1/2 yers ago. When I reflect on all that I have been able to do as the result of this operation I am overwhelmed and oh, so grateful. For those of you who are not familiar with my story. Let me say that I had a adrenal graft implant at Vanderbilt in 1987 with minimal benefits. On December 1, 1993 I had a simultaneous bi-lateral pallidotomy. This life changing operation was performed by Dr. Bob Iacono after others had told me I would not be a good candidate since my brain was already compromised by the surgery at Vanderbilt. As has been my commitment to the larger Parkinson's community I have posted updates on my condition every year since surgery. My last update was a 6 year post pallidotomy report. As I head into my eighth year post-surgery I continue to benefit greatly from the pallidotomy COLUMN CODES -1 - SYMPTOM BEFORE SURGERY 0 - 6 mos. AFTER SURGERY 1 - 1 YR. POST-OPT 2 - 2 YR. POST-OPT 3 - 3 YR. POST-OPT 4 - 4 YR. POST-OPT 5 - 5 YR. POST-OPT 6 - 6 YR. POST-OPT 71/2-7.5 YR. POST-OPT SYMPTOMS BEFORE SURGERY & YEARS POST SURGERY SYMPTOMS -1 0 1 2 3 Tremor Severe Gone Gone Gone Gone Dyskinesia Severe Gone Gone Gone Gone Sweating A Lot Gone Gone Gone Gone Sleep Disturbed Severe Gone Gone Gone Gone Eyelids Open-Sleep Yes Closed Closed Closed Closed Shuffle Yes Gone Gone Gone Gone GaitFreeze Yes Gone Gone Gone Gone SenseSmell Gone Better Better Better Better MuscleAche Yes Gone Gone Gone Gone BackProblm Yes Gone Gone Gone Gone Akinesia Yes Gone Gone Gone Gone Bradykinsa Yes Gone Gone Gone Gone SexPerfmce Poor Great Great Great Great Stress Affect NoEfct NoEfct NoEfct NoEfct Drooling Rare Slight Slight Slight Slight Urgency Urinate Yes No No Slight Slight Dystonia None None None None None Shortness Of Breath Yes None None None None Voice Weak Better Better Varies Varies Speech Affect Better Better Better Better Handwritng Bad Normal Normal Normal Normal On-Off Yes Gone Gone Gone Gone Appetite Poor Normal Normal Normal Normal Weight Loss Gain Normal Normal Normal Sense of Well Being Poor Exclnt Exclnt Exclnt Exclnt SYMPTOMS YEARS POST SURGERY SYMPTOMS 4 5 6 7 1/2 Tremor Gone Gone Gone Gone Dyskinesia Gone Gone Gone Gone Sweating Gone Gone Little Gone Sleep Disturbed Gone Gone Slight Slight Eyelids Open-Sleep Closed Closed Closed Closed Shuffle Gone Rarely Rarely Rarely GaitFreeze Gone Gone Rarely Rarely SenseSmell Better Better Better Better MuscleAche Gone Gone Gone Gone BackProblms Gone Gone Gone Gone Akinesia Gone Gone Gone Gone Bradykinesia Gone Gone Gone Gone SexPerfmce Great Great Great Great Stress NoEfct NoEfct NoEfct NoEfct Drooling Slight Slight Slight Slight Urgency Urinate Slight Slight Slight Slight Dystonia None None None None Shortness Of Breath None None None None Voice Varies Varies Varies Varies Speech Varies Varies Varies Varies Handwritng Affect Affect Affect Affect On-Off Gone Slight Slight Slight Appetite Normal Normal Normal Normal Weight Normal Normal Normal Normal Sense of Well Being Exclnt Exclnt Exclnt Exclnt MEDICINE SCHEDULE MEDICINE BEFORE SURGERY & YEARS POST SURGERY -1 0 1 2 3 Sinmt C.R. 50/200 3.5 3.5 3.5 4 4 Snmt25/100 1 Snmt10/100 .5 .5 .5 2 TOTAL Snmt 800 mg 750 mg 750 mg 900 mg 1000mg Amantadine 3 1 1 1 1 Eldepryl 2 1 1 0 0 Permax .25 4 1.5 1.5 1.5 1.5 Paxil 40mg 1 1 1 1 1 NADH MEDICINE SCHEDULE MEDICINE YEARS POST SURGERY 4 5 6 71/2 Sinmt C.R. 50/200 5 5 5 5 Snmt25/250 3 Snmt10/100 1 6 7 1 TOTAL Snmt 1100mg 1600mg 1700mg 1850mg Amantadine 1 2 2 2 Eldepryl 0 0 0 0 Permax .25 2 2 3 3 Paxil 40mg 1 1 1 1 NADH 10 mg 0 VITAMINS etc. In addition to the above meds I take the following on a daily basis: 100 mg of CoEnz.Q10, 1000 I.U. of Vitamin E, 1000 mg of Omega 3 fatty acids (Fish Oil), 500 mg of vitamin C, 1500 mg of Chewable Calcium, and one B-100 Complex at night. 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 Since moving to Pittsburgh from La Canada, CA, I no longer go out to Loma Linda to work with Dr. Iacono on a weekly basis. Yet over a four year (1993-1997) period I saw literally hundreds of patients have a unilateral Pallidotomy, bilateral Pallidotomies 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 2-3% have some sort of complication usually as a result of bleeding. These results are based on a very broad patient pool. With over 2000 surgeries for the treatment of Parkinson's Disease to his credit there is no other surgeon in the world who has done as many or is getting the results that Dr. Iacono is achieving day in and day out. Exercise Exercise continues play a big part in my health program. I work out 3-4 times a week for an hour or so. Faith & Prayer It is only by the grace of God that I can face each day with an assurance of God's provision. The power of prayer sustains me and the joy of the Lord is my strength. FURTHER REFLECTIONS ON PALLIDOTOMY. In further reflecting on my Pallidotomy I believe that after six 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 serotonin 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. Yet the disease continues to progress as cells in the substantia nigra continue to die off. But the progression following the Pallidotomy is infinitely slower than before. 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 two years. You will notice from the chart above that at 5 years I made a substantial increase in my sinemet from 1100 to 1600 mg/day of levodopa with very good results. I continue to feel my life was given back to me through the Pallidotomy and view each day as a bonus, a gracious gift from God. More Info Web Sites: Dr. Iacono and pallidotomies: www.pallidotomy.com 909-792-8188 Don Berns story: http://www.geocities.com/SoHo/Village/6263/pienet/berns/index.html