 |
 |
At 01:55 20-3-98 -0500, Jon Chodak wrote: I am looking for anyone who has undergone a pallidotomy in order to exchange information. My husband has recently had one and we wish to communicate with others to compare results. Thank you. > Jon, <bigger> On September 23 1997, I had a pallidotomy.=20 Answering your question I send you a mail that I wrote some months ago and add a follow up. My story, though not killing all hope, is less positive than most stories about palidotomythat I have read on the list. But, after all I don't regret I had the surgery. During the weeks I was waiting for the surgery I tried to protect myself against disillusion by not having too high hopes about the outcome. But we don't have our own expectations completely under control. The first days after the surgery the results turned out so positive =20 that I could not inhibit my expectations to grow. It was such an euphoric experience for me to feel not tired and to realize I had almost lost the memory of life without PD and having found it again. And so the blow of returning symptoms hit me hard.=20 I feld the way Tantalus is expected to feel. This man from Greek mythology was punished in the Hades, the realm of the dead. He always feels very hungry and thirsty, having drinks and food very near, but always withdrawing as soon as he tries to get hold of it. =20 Something like that I experienced before, with my reaction on the nicotine patches. Other people said it seemed to them to be reassuring to know all capacities are yet intact. But I said it too feels like having=20 failed an examination because of having missed just one item more than is permitted.=20 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. I'm hoping to write to the list frequently again and to hear from you, kind regards,Ida Kamphuis =20 Follow up: My poblems with articuation and with falling have nearly completely disapeared. The reaction of my left, treated, side on sinemet has dramatically changed, but my right side has taken over the wearing off dyskinesia. I do have now a better control over it by reducing sinemet intake. I start in the morning without sinemet. I always was relatively well in the morning just after getting up. After four hours I have a sinemet CR 100/25 and after another four hours again. In the evening I use one or two (dependent on how I feel) halves of sinemet regular 100/25 That makes a total of 250 til 300 daily. (+ o.375mg. permax, 250 mg orphenadrine and 10 mg eldepryl) So the position that the most important effect of pallidotomy is that one can heighten the dopamine dosis does not hold in my case. Most days I have no serious dykinesia, but in the evening about three hours after the last dose the wearing off dyskinesia comes again, much less strong than it was before surgery, but with the same symptoms: dystonia in combination with dyskinesia, but now affecting only my right side.=20 About the solution to have the other side being done the neuro's don't agree. One of them in Amsterdam said that the length of time of my articulation problems indicates that the other side of my brain has taken over this job so it is not safe for my capacity to speak to repeat the surgery now on the other side. Another one also in Amsterdam said that my articulation problems indicate that in my brain the function of articulation is settled in the right side and can't be harmed by surgery of the left side. =20 And my own neuro was definite in saying I should not run that risk.=20 If the other side must be done he would prefer in this case a deep brain stimulation. But I don't have to decide now. BTW another important positive result of the surgery is that I gained weight from 42 to 47 kg. The symptom of ongoing weight loss is not attended much on this list.It is very reassuring that for me this is now reversed. </bigger> Ida Kamphuis, Holland -------------------------------------------------------------- Vriendelijke Groeten / Kind regards, Ida Kamphuis mailto: [log in to unmask]