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David thank you for your response. Could you please tell me your progression of Sinemet pre operation was and what you considered too high dosage. Thank you ----- Original Message ----- From: David Moreland <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, May 28, 2000 2:34 PM Subject: Re: Fifth birthday > At 02:39 PM 5/28/00 -0700, Ervin McCarthy wrote: > >David, always great to hear an optimistic story. Good for you and God > >bless. > >Give us the rest of the story with details of operation and drugs, with > >details of preoperation symptoms and results, and age. Also who did the > >operation and where? > > > > I was diagnosed with PD in 1988 at the age of 45. right of the bat an > incompetent neuro prescribed too much sinemet. I wasn't complaining because > everything seemed great in those first two years. i did not at that time > know any better so i kept taking much too much Sinemet. By the time i was > seeing a Competent neurologist I was already experiencing dyskinesia. The > new Neuro greatly cut back the amount of Sinemet I was taking. I was also > taking selegoline. All the while my Dyskesias kept geting more intense. > Finally by about 1994 I would have Dyskinesias that would have me on the > floor flailing about for up to three hours. By this time i was hearing > about Dr. Iacoca an the successes that he was having with pallidotomies. > Then at a Parkinson's symposeum I heard Dr Steven Gancher say that a > pallidotomy would relieve Dyskinesia. > > Wait, here is somthing I wrote about the experience a ew years ago. in > fact this was shortly after my Pallidotomy. > > First I am 52 years old and was diagnosed with Parkinson's Disease (PD)i > n early 1988. It was devastating to me than as I was 45 years of age. I > was in denial for the first year after my diagnosis. I was from the first > over medicated partly due to my ignorance and partly due to an incompetent > neurologist. So from about the second year I was troubled with > involuntary movements caused as a side effect from the main PD drug > Levodopa . This movement is called dyskinesia. After several years > parkinsonians develop distinct on-off effects. That is when the medication > is working for the person, he/she is said to be on. When the medication is > worn off they are said to be off. Sometimes this line between off and on > is very narrow. Going from on to off can happen very quickly like a light > switch. I finally got to where I was either off or dyskinetic. There was > little middle ground. I was to the point that I was going to go on > disability. > > But, thank God for Dr. Kim Burchiel. I now have an excellent neurologist, > Dr. Sheila Sund. She referred me to the movement disorders clinic at Oregon > Health Sciences University (OHSU) in Portland for evaluation. The Dr. > there, Dr. Stephen Gancher, agreed that I was a good candidate for a PVP. > He referred me to see Dr. Burchiel on July 18, 1995. This was the middle of > May. I could hardly wait. When the day finally came Dr. Burchiel discussed > the procedure with me and agreed that I was a good subject. The scheduled > time was > August 21, 1995. > > I anticipated that date like a little kid anticipates Christmas. Time > wouldn't pass fast enough. > When the surgery date came I was first fitted with a steriotactic frame on > my head. It was fitted with an MRI localizer and sent to MRI (should I > tell about the insurance screw-up and the almost postponement of my surgery? > > > Then after some waiting the surgery began (it was about 9:30 am). I felt > just a little pressure when the Dr. drilled the insertion holes, but no > more that that. During the procedure they kept asking me questions like > what was my name, where did I think that I was at, count to ten. Then when > the first lesion was placed the Dr., told me to raise my leg and to raise > my hand and hold them steady. I was able to do it with out any trouble. > Then in less than 30 minutes the other lesion was placed. The frame was > removed and I was wheeled back to my room. I slept soundly for about four > hours. I had hardly slept the night before. > > After the PVP I have had no dyskinesia, my medication works for me > (5-25/100, 6- 25mg Permax per day) > I have full use of my hands and legs with very little. Stiffness. I just > feel like I've been given back my life. The one down side is that my speech > is affected to a small extent. I will take that. In the morning prior to > taking any meds I still shuffle when I walk. Would I recommend it. YES!, > for anyone as plagued with dyskinesia as I was. > This was some of my experience. > David Moreland >