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Ida, Thank you for sharing your results with the list. What a roller coaster = ride you have been on! From joy to discouragement and back again several= times. I know you are grateful for the benefits you did achieve. Know = that many on the list including me will keep good thoughts for you tucked= gently in our hearts. Best wishes, Claudia Goldberg, A Learning Newbie Ida & Andre Kamphuis wrote: > Dear listmembers, > > I have been silent for about 4 months following a very positive result = of a pallidotomy. The reason was that the results of that pallidotomy tur= ned out to be much less positive than they seemed to be just after the su= rgery. I had a very tough time to learn to accept that and felt a need to= cut myself off from thinking and reading about Parkinson. Now I am over = the worst and ready to tell the "post surgery story". The first days were= a revelation about how life can be, being able to relax. The first blow = came soon as a disturbance in concentration, that manifested itself clear= ly when I tried to resume my work tanslating a book from English into Dut= ch. Making a good translation demands something of one's memory, that was= beyond my capabilities of the moment. One has to "swallow " a certain am= ount of information freeing it from the concrete words and than put it in= to Dutch words. The translation I made was understandable for a Dutch spe= aking person, but was not the real Dutch, but > English with Dutch words. I was not awfully worried about it because th= e doctors had predicted it. Symptoms, which are indicative of difuse dama= ge are caused by a swelling of brain tissue which has been irritated by t= he needle passing through it. These effects are temporary, so they said. > The second problem manifested itself about a week after the surgery,I c= ould no longer talk clearly. My voice was soft and my articulation deteri= orated. Before my speech had always been unaffected by Parkinson and I co= uld not totally trust the prediction it would be temporary. It was rather= scary. Now it has turned out that it was temporary indeed. > This all was not enough to put me out of countenance. The next blow did= that. The symptoms of dyskinesia and dystonia came back not as severe as= they used to be but severe enough to be very disturbing. They were now r= estricted to my untreated right side. The treated left side stayed remark= ably quiet. The symptoms on the right were heavier than they were before = surgery and seemed to grow every day. I had a consult with my own neuro. = He said that, if other measures had been proved to fail, a "deep brain st= imulation" could attack the new symptoms after some time. Besides, my sym= ptoms as he saw them on the moment seemed to indicate that I was taking t= o much sinemet. This was confusing, because the aim of the surgery was, s= o I thought to lessen the side effects of sinemet, making it possible to = tolerate a higher dosis. One of the doctors in the hospital told me it wa= s unwise to reduce sinemet after the surgery. Doing so one made the effec= ts of the surgery indiscernable. But I was eager to > believe my neuro, I guess because it did gave a tool to do something. I= felt very lousy and did not take half measures. During two days I did no= t take sinemet at all and build it slowly after that. The result is I do = take now 300 mg sinemet each day, besides I have reduced my permax intake= to 60% of what it used to be. In the future it will be replaced by one o= f the new agonists. This has resulted in a condition that is better than = it was before the surgery. Especially walking is much better. Going for a= walk we used to take a wheelchair. Going off meant litterally I could no= t put one foot before the other and trying hard would result in wild dysk= inesia. Now we walk without a weelchair. To walk when off is not very eas= y, but always possible and being being on I walk better than I did in yea= rs. Reading the list it struck me that Dennis Green also told his ability= to walk ameliorated as a result of pallidotomy. > During the days without sinemet the old Parkinson symptoms showed up ag= ain. A surprising thing was that those original symptoms also are clearly= affected by the surgery. My parkinson has not been totally unilateral. M= y left side however was always most affected but now after the surgery th= e symptoms on the left are less and the symptoms of the right side are no= t more. So the net result seems to be that my Parkinson has ameliorated! = But sadly I can not end this story as a fairy-tale in which in the end al= l is well. One symptom throws a spanner. I do fall more frequently. It ha= ppens without any warning and the reflex, to protect the face with one's = hands is not functioning. What makes it worse is that I'm not able to sta= nd up by myself. > I'm hoping to write to the list frequently again and to hear from you, > kind regards, > Ida Kamphuis > > -------------------------------------------------------------- > Vriendelijke Groeten / Kind regards, > > Ida Kamphuis mailto: [log in to unmask]