Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Hi all, re: pancreatic burnout .... as has been mentioned, this is a pretty controversial subject. The pain management specialist who Karyn had speak at the first 2 Pancreatitis Symposiums here in Indianapolis had some interesting things to say about this. He mentioned that even when patients reach that " end stage " when the pancreas completely stops producing any/all digestive enzymes (amylase, lipase, etc), patients often STILL experience constant levels of pain. He explained that they believe this is due to the fact that the pain nerve fibers around the pancreas have been so conditioned to constantly firing, that they become permanently " excited " , so that even when the original source of the pain is removed (either through " burnout " or surgical intervention), the base-level sensation of pain may never totally go away. Those who have had various surgical interventions done may continue to experience some pain due to the internal scar tissue as a result of those procedures. He also made the analogy of " phantom pain " that many amputee patients continue to experience. The pain is real, because the remaining nerve fibers continue to fire and send signals to the brain, which interprets them as the sensation of pain. The hope is, however, that there should be few/no episodes of " break- through " pain at that point - i.e., no more " accute " attacks, and the base-level pain is easier to manage with the right combination of pain meds. The various nerve block techniques may be more effective at that point, but as many on this board have stated, those effects are generally short-term, and must be repeated as the nervous system re-generates itself. Several patients who have had the total pancreatectomy performed (after years of chronic pancreatitis, and/or one of more various surgical interventions) still report a continuous (usually much lower) base-level pain. It's just much easier to manage, and they aren't left with the rest of the " unpredictableness " of the disease. Of course, many patients who have had the pancreatectomy, which would be equivalent to " burnout " , since in both cases, none of the enzymes are being produced, experience absolutely NO pain (once they recover from the surgery). As is true of everything else with this disease, everyone's body responds differently, and it also seems to be related to how long they had pancreatitis, and how severe the accute episodes were, etc, before the surgery. --Tull Assistant Moderator Pancreatitis Association, Int'l > , > > It sounds like you are at the same mental point as I am. I have begun to > believe that pancreatic burnout is the medical equivalent on an Urban > Myth. So far no one that I ask can name a single person that has reached > that point. I think it is a carrot the docs hang out in front of us > end-stagers so that we don't completely lose hope. > > Sounds like you might agree. > > Chuck > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Thank you! Now could you get me a name of one of the experts? Email will do and you can even email it to me! I am not asking for that much, the timing is critical during this. If they are there, they will help me. I have sent out to the powers to be for help. Just guiding advice through this. Thanks, > > , > > > > It sounds like you are at the same mental point as I am. I have > begun to > > believe that pancreatic burnout is the medical equivalent on an > Urban > > Myth. So far no one that I ask can name a single person that has > reached > > that point. I think it is a carrot the docs hang out in front of > us > > end-stagers so that we don't completely lose hope. > > > > Sounds like you might agree. > > > > Chuck > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Thank you! Now could you get me a name of one of the experts? Email will do and you can even email it to me! I am not asking for that much, the timing is critical during this. If they are there, they will help me. I have sent out to the powers to be for help. Just guiding advice through this. Thanks, > > , > > > > It sounds like you are at the same mental point as I am. I have > begun to > > believe that pancreatic burnout is the medical equivalent on an > Urban > > Myth. So far no one that I ask can name a single person that has > reached > > that point. I think it is a carrot the docs hang out in front of > us > > end-stagers so that we don't completely lose hope. > > > > Sounds like you might agree. > > > > Chuck > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 29, 2002 Report Share Posted August 29, 2002 Thank you! Now could you get me a name of one of the experts? Email will do and you can even email it to me! I am not asking for that much, the timing is critical during this. If they are there, they will help me. I have sent out to the powers to be for help. Just guiding advice through this. Thanks, > > , > > > > It sounds like you are at the same mental point as I am. I have > begun to > > believe that pancreatic burnout is the medical equivalent on an > Urban > > Myth. So far no one that I ask can name a single person that has > reached > > that point. I think it is a carrot the docs hang out in front of > us > > end-stagers so that we don't completely lose hope. > > > > Sounds like you might agree. > > > > Chuck > > Quote Link to comment Share on other sites More sharing options...
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