Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 Gail, .. You wrote, " I had a pancreatectomy in 1998 with The islet cell transplant, I also, had a Whipple procedure, in 1997, to remove the head of my pancreas before the pancreatectomy. " That is so fortunate that things turned out the way they did regarding your surgery. Those are two big time operations. It is a good thing that you had a Whipple instead of a Distal Pancreatectomy. The largest percentage of islet cells are located in the tail of the pancreas. Since you had the head of your pancreas removed in the Whipple you were able to preserve most of your islets. I had the tail of my pancreas removed when I had a Distal Pancreatectomy in 1999. I was insulin dependent within 2 months. You also said that you no longer have any pain. That is wonderful. How long had you had trouble with Pancreatitis before your surgery? How bad was the pain you were having? That is great that you apparently had no to little neurogenic pathway pain fiber involvement. Though the probability of complete pain relief is poor for my own situation, I have decided to have the Total Pancreatectomy, after the Symposium. I am going to try and get my name on the list for a cadaver pancreas / islet cell transplant. I can't have an autoislet cell transplant, of course, since I require a significant amount of insulin daily, I probably don't have many to transplant. I am so excited and am looking forward to having the panel of transplant patients to talk to and hear their story. Thanks for being part of that. Blessings, Karyn , RN Founder / Executive Director http://www.pancassociation.org 1- / KarynWms@... PAI Home Office: Indianapolis, Indiana, USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2003 Report Share Posted May 4, 2003 Dear Karyn, I am so excited that you are going to have your pancreas removed and be gone with all that pain. I realize that you may have some pain but it won't be near as bad as the pain you suffer from now. Oh, Karyn I am so happy for you. I hope that islet cells are available soon for you. Good luck to you and when the symposium is over and there is a little let down please keep me informed about your surgery. I will be here praying and rooting for you. Love, Shirley PS When I was searching for some help when I had cp I went from surgeon to surgeon and one wanted me to let him cut the tail off of my pancreas and I had divisim. Can you just imagine where I would be now if I had the surgery he wanted to do for me? UGH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Karyn, When I said I no longer had pain I mean the pancreatitis pain. Due the fact I had 3 major surgeries on my pancreas and stomach I ended up with gastoparesis. i have the referred pain from the stomach not emptying or that is what we think the pain is from that I ended up with. Or it could be disrupted pain pathways. Anyway it is veseral pain, not nearly as bad as pnacreatitis and controlled on my current pain management plan. I had pancreatitis that was finally diagnosed in 1996. I started with gall bladder problems in 1985 and went to sphincter of odi dysfunction to bile duct stenosis and stricture and the pancreas duct stricture and stenosis. It was a intermittent problem from 1985 through 1996. Then in 1996 when we finally found what the problem the process escalated and rapidly progressed. I was on TPN for 3 years intermittently and was unable to keep my amylase down once I started to eat again. Fortunately I had a great Internist Who said at the very beginning of this process, " We need to look into saving your islet cells if you need to have you pancreas removed. " He had great for sight and wanted the best outcome for me in this situation. I do consider myself very luck to have had him take sure Good Care of ME. Thank you for asking, gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2003 Report Share Posted May 7, 2003 Gail, Hi, I am fairly new to this group, but I found your post to Karyn interesting. I also started three years ago with gallbladder problems, then to Sphincter of Oddi, scarring of my pancreas, twisted pancreatic branches throughout my pancreas, a congenital looping of my pancreatic duct, and now CP. I had a 5 hour surgery last August for a spincteroplasty to " cure " my SOD. . .no such luck. The pain was back at three weeks post op. My problem is that no one follows me on a routine basis. I have seen the GI specialists in Indianapolis for ERCP's, but I don't see my GI doc here (ohio) on a regular basis. My Internist prescribes my pain medication, but that is all. Can you give me some advice. Should I have my liver functions checked, glucose, etc. I have very high triglycerides also. I was recommended by my GI doc in Indianapolis to have a EUS test to check for progression. Do you know anything about that. Thanks. @... Quote Link to comment Share on other sites More sharing options...
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