Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Sam, You wrote, " I, too, had stones that were blocking my duct. After unsuccessful attempts to get rid of them via ERCP, they tried lithotripsy (ESWL) like they do on kidney stones. They blasted the stones and then cleaned out the fragments with ERCP. " That is interesting to hear that. I cannot recall anyone else that I knew who had had lithotripsy. I was curious how the outcomes of that procedure were. I will certainly add this to our database of treatments in the event anyone is ever interested in talking to someone who has had this treatment. I wonder why this is not used more often. It sure seems less invasive then lengthy stent placements. Now that I think about it, the main reason I was sent to surgery was because there were stones that could not be removed with ERCP or stenting. Hmm? I would not say that agreeing to have surgery was exactly making an informed healthcare decision. Karyn E. , RN, Exec. Director, Pancreatitis Association International 5th Annual Symposium on Pancreatitis: September 16 & 17, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Karyn, The doctors at the University of Michigan presented that option for me along with the surgical procedure. From what she told me, doing lithotripsy may work for some(short term with possibly up to 4 procedures is get the stones in fact if they can) and others it wont. They gave me a 30-40 success rate, but the major reason they like the Puestow is because long term it is more beneficial since is the duct is dialated they are looking to provide better drainage. The concern with the litho is that stones will again form in the future and you would be back again and again. They other option they presented me was to become a serial stenter, getting new ones every 2 months, but I have shown no relief from the first, so I don't want to hassle with that. I have decided that I will be having the Puestow April 26 at U of M and very confident that all the advice I recieved from U of M and other GI's is in my best interest. I know it is easy to second guess which is the best route to take but I have to trust everyone I have spoke too and evaluated me thus far. I guess any surgery is a tuff decison to make, but I have to pray I'm in good hands.Take care Greg Birmingham MI KarynWms@... wrote: Sam, You wrote, " I, too, had stones that were blocking my duct. After unsuccessful attempts to get rid of them via ERCP, they tried lithotripsy (ESWL) like they do on kidney stones. They blasted the stones and then cleaned out the fragments with ERCP. " That is interesting to hear that. I cannot recall anyone else that I knew who had had lithotripsy. I was curious how the outcomes of that procedure were. I will certainly add this to our database of treatments in the event anyone is ever interested in talking to someone who has had this treatment. I wonder why this is not used more often. It sure seems less invasive then lengthy stent placements. Now that I think about it, the main reason I was sent to surgery was because there were stones that could not be removed with ERCP or stenting. Hmm? I would not say that agreeing to have surgery was exactly making an informed healthcare decision. Karyn E. , RN, Exec. Director, Pancreatitis Association International 5th Annual Symposium on Pancreatitis: September 16 & 17, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2005 Report Share Posted April 12, 2005 Hello Greg, I want to wish you the best on your surgery at U of M. My son is treated there for his CP. He hasn't had the Pustow procedure, or any surgeries for that matter yet. They are waiting for genetic testing results to see if he has heretidary factors. He has been sick since August 2004 and has not improved. He has had many complications to deal with, two hemorrhoid surgeries because of his constipation, he had a drop in his blood count and low platelets which turned out to be related to mono, now his spleen is still enlarged and they say 10- 12 weeks before it will return to normal. He had kidney problems, infections which also kept him sicker. His pain was controlled until his spleen enlarged, then he had increased pain and higher doses of pain meds. For the last four days, he has been feeling well, minimal pain and he has dropped his dose of Oxycontin from 100 mg twice a day to 20 mg, which is wonderful. I hope you get good results at U of M. We are staying here until he decides it is time to consider the TP ICT, which will be his only surgery because he wants to have the best results. Who is your surgeon at U of M? How long have you been seeing the docs there? Again, best wishes for the surgery. Sincerely, > Sam, > > You wrote, " I, too, had stones that were blocking my duct. After > unsuccessful attempts to get rid of them via ERCP, they tried lithotripsy (ESWL) like > they do on kidney stones. They blasted the stones and then cleaned out the > fragments with ERCP. " > > That is interesting to hear that. I cannot recall anyone else that I knew > who had had lithotripsy. I was curious how the outcomes of that procedure were. > I will certainly add this to our database of treatments in the event anyone > is ever interested in talking to someone who has had this treatment. I > wonder why this is not used more often. It sure seems less invasive then lengthy > stent placements. Now that I think about it, the main reason I was sent to > surgery was because there were stones that could not be removed with ERCP or > stenting. Hmm? I would not say that agreeing to have surgery was exactly making > an informed healthcare decision. > > Karyn E. , RN, > Exec. Director, Pancreatitis Association International > 5th Annual Symposium on Pancreatitis: September 16 & 17, 2005 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 Good morning, Karyn. Yes, I had the ESWL lithotripsy done at the Mayo Clinic in Rochester, MN last summer. As said before, I had numerous stones in the main duct, one being about 4x the size of the duct. As I understand it, I was only the second person ever to have this done at Mayo. They used the same equipment that is used for kidney stone blasting, and I must say it was strange, because of the positioning they must do. They were trying to " re-engineer " the equipment that was produced for a different function. And you are submersed in a tub of water. Fortunately, it was done under general anesthesia. The first attempt was unsuccessful because the largest of the stones was hiding behind the shadow of my spine. So a week later they tried again after inserting a nasopancreatic drain so they could use the fluoroscope. They used the maximum blasts (I guess I don't know what the proper term is), and were successful in breaking all of them in the main duct up to the state of very fine particles. The treatment did set off a minor acute pancreatitis attack, and I had considerable bruising, both internally and externally, but all in all it wasn't bad. I was back to work in less than a week. Someone else wrote that this procedure doesn't keep the stones from re-forming, and that is true, but neither does the balloon cleaning of the ducts. This was my attempt to avert surgery (for now at least). Let me know if you want any additional information, I'm sure I can dig some links out of my files. Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2005 Report Share Posted April 13, 2005 , Hope your son is feeling better, I have only been seen at University of michigan for the last 2 months for idopathic CP. My original hospital that has been treating me the last 7 years was Beaumont Hospital in Troy, great place no compliants. My doctors there reffered me to U of M for the possiblity of surgerical interventions because of the constant problems I was having with moderate pain and frequent attacks. The surgeon that will be performing the operation is Dr. Simeone, she is one of the lead pancreatic surgeons on staff. Thanks for the support and wish a good road ahead for your son. Let me know if you have any more questions. Best of Luck Greg wrote: Hello Greg, I want to wish you the best on your surgery at U of M. My son is treated there for his CP. He hasn't had the Pustow procedure, or any surgeries for that matter yet. They are waiting for genetic testing results to see if he has heretidary factors. He has been sick since August 2004 and has not improved. He has had many complications to deal with, two hemorrhoid surgeries because of his constipation, he had a drop in his blood count and low platelets which turned out to be related to mono, now his spleen is still enlarged and they say 10- 12 weeks before it will return to normal. He had kidney problems, infections which also kept him sicker. His pain was controlled until his spleen enlarged, then he had increased pain and higher doses of pain meds. For the last four days, he has been feeling well, minimal pain and he has dropped his dose of Oxycontin from 100 mg twice a day to 20 mg, which is wonderful. I hope you get good results at U of M. We are staying here until he decides it is time to consider the TP ICT, which will be his only surgery because he wants to have the best results. Who is your surgeon at U of M? How long have you been seeing the docs there? Again, best wishes for the surgery. Sincerely, > Sam, > > You wrote, " I, too, had stones that were blocking my duct. After > unsuccessful attempts to get rid of them via ERCP, they tried lithotripsy (ESWL) like > they do on kidney stones. They blasted the stones and then cleaned out the > fragments with ERCP. " > > That is interesting to hear that. I cannot recall anyone else that I knew > who had had lithotripsy. I was curious how the outcomes of that procedure were. > I will certainly add this to our database of treatments in the event anyone > is ever interested in talking to someone who has had this treatment. I > wonder why this is not used more often. It sure seems less invasive then lengthy > stent placements. Now that I think about it, the main reason I was sent to > surgery was because there were stones that could not be removed with ERCP or > stenting. Hmm? I would not say that agreeing to have surgery was exactly making > an informed healthcare decision. > > Karyn E. , RN, > Exec. Director, Pancreatitis Association International > 5th Annual Symposium on Pancreatitis: September 16 & 17, 2005 > > > > > Quote Link to comment Share on other sites More sharing options...
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