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Ida dear... I'm so pleased to "see" you here once again.. but sure empathize your disappointment and frustration at not finding immediate, positive, and lasting results from the surgery. I don't know if your neurosurgeon mentioned this to you, however it was stressed to me before and after I had my unilateral pall. in 1994 - "You might experience improvement/changes as much as a year post-surgery." The truth of the matter is more like "The surgery won't cure disease or stop it from "doing it's thing." What it DOES do is kind of move some of the worst symptoms from the foreground to the background." I believe at that point many who've had the surgery become aware of symptoms which have been there all along, but were barely noticed amongst the other, more disturbing symptoms. Post-surgery, those lesser symptoms take on a new prominence.. The best advice I received prior to my surgery, SO right, that even today I remind myself of it was from a lovely lady named Barbara Yacos (a former List member). Barb told me, "When I get frustrated with any post-pallidotomy PD symptoms, I remind myself what I felt like BEFORE the surgery. Then I ask myself would I rather feel THAT way again?" THAT has stood me in good stead, and no.... I sure DON'T want to feel now the way I did before the surgery!! And I bet YOU don't either.... given the alternative. Love to you, Ida.... Barb Mallut [log in to unmask] ---------- From: Parkinson's Information Exchange on behalf of Ida & Andre Kamphuis Sent: Monday, February 02, 1998 2:13 PM To: Multiple recipients of list PARKINSN Subject: I'm back <bigger>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 turned out to be much less positive than they seemed to be just after the surgery. 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 clearly when I tried to resume my work tanslating a book from English into Dutch. Making a good translation demands something of one's memory, that was beyond my capabilities of the moment. One has to "swallow " a certain amount of information freeing it from the concrete words and than put it into Dutch words. The translation I made was understandable for a Dutch speaking person, but was not the real Dutch, but English with Dutch words. I was not awfully worried about it because the doctors had predicted it. Symptoms, which are indicative of difuse damage are caused by a swelling of brain tissue which has been irritated by the needle passing through it. These effects are temporary, so they said. The second problem manifested itself about a week after the surgery,I could no longer talk clearly. My voice was soft and my articulation deteriorated. Before my speech had always been unaffected by Parkinson and I could 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 restricted to my untreated right side. The treated left side stayed remarkably 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 stimulation" could attack the new symptoms after some time. Besides, my symptoms as he saw them on the moment seemed to indicate that I was taking to much sinemet. This was confusing, because the aim of the surgery was, so 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 was unwise to reduce sinemet after the surgery. Doing so one made the effects 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 not 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 of 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 not put one foot before the other and trying hard would result in wild dyskinesia. Now we walk without a weelchair. To walk when off is not very easy, but always possible and being being on I walk better than I did in years. 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 again. A surprising thing was that those original symptoms also are clearly affected by the surgery. My parkinson has not been totally unilateral. My left side however was always most affected but now after the surgery the symptoms on the left are less and the symptoms of the right side are not 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 all is well. One symptom throws a spanner. I do fall more frequently. It happens 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 stand up by myself.=20 I'm hoping to write to the list frequently again and to hear from you, kind regards, Ida Kamphuis =20 </bigger> -------------------------------------------------------------- Vriendelijke Groeten / Kind regards, Ida Kamphuis mailto: [log in to unmask]