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Are You Out There? Hello again... I seem to have fallen of the list after a very brief stint (only one submission) at least two months ago. My how time flies... I have some news to share with all of you regarding my father, who has been diagnosed with PD for about six years now. I hope this will benefit those who are considering either Pallidotomy or Fetal Tissue Transplant or want more information about either procedure. About one month ago my father and I had a preliminary meeting with Deane B. Jacques, M.D., F.A.C.S., Medical Director of The Nuerosciences Institute at the Hospital of the Good Samaritain in Los Angeles. The purpose of this meeting was to discuss my father's options regarding either Pallidotomy or Fetal Tissue Transplantation procedures. My father is 57 years old and his Parkinson's has progressed considerably since his diagnosis 6 years ago. He has severe akinesia and dyskinetic movements and his response to Sinemet seems to be waning . Based on this information Dr. Jaques referred us to their visiting specialist Dr. Abraham Lieberman. After a half hour meeting with him during which he tested my father's muscular speed, agility and strength by asking him to perform various movements ( i.e. stand on one foot, turn in a circle to your right, to your left, push on my hands, pull on them, open and close your hands as fast as you can, etc.) he asked us to come back again for another such testing session during which he would be videotaped. He is to be "off" for at least sixteen hours prior to the test. This is for them to determine the extent of progression of PD. After testing him "off", Dr. Lieberman will administer a dose of medication he has mixed (that is his specialty after all) and they will videotape my father's response to the medication. Based on this session, Dr. Lieberman will let us know whether he reccommends either Fetal Tissue Transplant or Pallidotomy. This videotaping session is scheduled for next Friday and I will be present and taking notes, not only for my information but in order to share the knowledge I gain with all those who have so many questions about such procedures. Let me just take a minute to share with all of you what I have been told about both Pallidaotomy and Fetal Tissue Transplant by Dr. Jaques and Dr. Lieberman. Both had very similar things to say. I will try to be as accurate and true to their descriptions as I understand them. If I mislead in any way, those with more knowledge than I please put your two cents in and let me know. Pallidotomy is a procedure usually reccommended for older patients with PD because of the finite life/effectiveness of the procedure. A Pallidotomy lasts, on the average, five to six years and is very effective for that time period. The unfortunate part is that one will eventually return to the physical condition they were in when they had the procedure done. The good news is, that five or six years of a greatly increased standard of living is something to look forward to. Not to mention the effect is immediate. And for those who have severe dyskinesia's, this is a blessing. Because of my father's age (he is still quite young) the doctors at the The Neurosciences Institute are not sure whether this is the best procedure for him. And, to be frank, he is not crazy about the idea of having a hole in his pallidum, especially if later research shows that the pallidum is an essential part of another procedure even more effective than Pallidotomy. There is also one percent chance that he will bleed during the procedure causing a severe/fatal stroke. But then, there is risk with even relatively simple procedures. Pallidotomy is covered by most insurance companies. Fetal Tissue Transplant is still in its experimental stage and until the FDA approves it, it will not be covered by insurance. The cost is about $40,000. The procedure: Undifferentiated cells that will eventually become dopamine producing cells are taken from a fetus between six and eight weeks old. These cells are ground up and mixed togehter with neurotrophic factor (usually taken from a peice of nerve in the foot). The fetal cells need Brain Derived Nuerotrophic Factor to grow and since an adult no longer produces BDNF, a substitute needs to be made. The loss of the nerve area in the foot, usually about four or five inches long, causes a numbness in that area. But that particular area is chosen because numbness there is not such a noticeable thing. The ground up fetal tissue and neurotrophic factor are layered into a needle about five inches long and injected into several areas of the substantia nigra. The number of needle passes is determined (as I understand) by the percent of cell loss and the extent of Parkinson's progression. The average, I believe, is about four. The patient is then given a relatively small dose of immunosuppressive drugs (because the cells are undifferentiated the risk of rejection is not seen as a problem). As with Pallidotomy there is a one percent risk that the patient will bleed and suffer a severe/fatal stroke. Recovery: Unlike pallidotomy, the results and benefits of a fetal Tissue Transplant are not immediate. Just like it takes time for a fetus to mature, its transplanted cells take time to mature and begin producing dopamine in an adult. Dyskinesia's are likely to increase and become more violent for the first several months after the procedure (and depending on the individual). And there is a period of what looks like regression as well. Some transplant patients do not experience this, but most do. Usually the first signs of improvement show in the facial expressions of PDers. They become more animated and expressive and this can happen fairly soon after the procedure is done. Dr. Lieberman estimated that marked improvement is noticeable anywhere between six months and eighteen months. It can be a slow road back. The reward for waiting this long is that results of this procedure are very promising. In about one third of the procedures done by this institute, patients have no outward signs of Parkinsonism and dopamine is being produced. In another third, dopamine is produce and patients are markedly better while taking small doses of medication (which medication, I am not quite sure), and in the last third the procedure does not work at all (this, Dr. Lieberman believes is because those patients did not have Parkinson's but Parkinsonism caused by something else). As most of you know by now, how well you respond to Sinemet is the most effective litmus for whether or not you have Parkinson's Disease. Some of the factors that determine how well you will respond to a Fetal Tissue Transplant are: Age - Those under sixty are having the highest success rates. Percent of cell death - The higher percentage of living dopamine producing cells the more likely the procedure is to be successful. Excercise - The less that muscles atrophy before the procedure is done the quicker physical recovery will be. So excercise is important! I'm sure there are some things I am forgetting to say but hopefully this is enough information to be helpful for now. The reason I put this out here is that it took a very long time and alot of luck to finally find doctors that are aggressively treating PD. I hope to quell some of the frustration of others who feel as I did. Regards. Sonia Lukich [log in to unmask] Thank you for reading this extremely long message.