Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 My husband was just diagnosed with PSC. We are feeling quite shell shocked and don't know where to start. Any help with pointing us in the right direction will be greatly appreciated. The doctor has put him on Ursodiol 1200 mg daily and they have only done and MRI. He thinks a liver biopsy or an ERCP is unnecessary. We didn't get much direction with regards to nutrition needs or supplements.. We are thinking we need a second opinion. We just don't know where to start with all of this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 DawnThanks for the post. I hope you were not offended by my post. ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Tue, 30 Dec 2008 12:51:26 -0000To: < >Subject: Re: newly diagnosed Shaul, I thought I would share on this one. I cannot have ERCP's. I have so much scar tissue at the opening of the bile duct that they cannot get the scope to go in; therefore, I can only have MRCP's. I had one successful ERCP many years ago but since 2005 they have tried twice without success. Their only optiions are MRCP's and thePercutanious Cholangiograph, which I did have this year. The Percutanious Cholangiograph was actually less accurate then the MRCP since I have small duct PSC. My understanding is that the MRCP is about 1-5 % less accurate then the ERCP with a lot less side effects so in some cases it might be bettr for the patient. Each one of us is different though. If they are concerned about CCA then an ERCP could possibly be better. Any way that's how I view it. Dawn > > Joanne: > First off I think that your concerns are appropriate and I sympathize with them. At the same time as a fellow sufferer of PSC I would like to pose the following question. How do you make sure that there is no abnormal cell growth in the abscence of an ercp. > Make no mistake my hep would not let me go with less then two ERCPs annually and because of my levels I have them approx four times yearly, and I am frightened to heck to know what will happen when I awake from the procedure. > I know pancreatitis is a terrible thing. I recall the point of an older post here - the experience of the dr performing the ERCP greatly impacts side effect as pancreatitis. > By all means I respect your decision, and I am only curious to get your feedback. > Thanks > Shaul > PSC UC > Sent via BlackBerry by AT & T > > RE: newly diagnosed > > > Shaul - > I think there are different views on ERCP. Absolutely, they are appropriate > for intervention and treatment. Sometimes, they are necessary for > diagnosis, but often now with a good MRI, the diagnosis is made. In past, > there has been much discussion on this and many have noted the risks of > ERCP, such as pancreatitis. For my son , I would not want an ERCP > unless the physicians really felt it vital for treatment, as I would not > want to risk the potential complications. > > Joanne H > (, Ca., mom of , 18, UC/PSC 2-06) > > Kim > Welcome to the group. ... When I was first diagnosed it was explained to > me that the ERCP was not just for diagnosis rather a mechanism to rule out > various precancerous growths in the bile ducts, (I sincerely hope that this > is not too much info for right now despite your husbands rather new > diagnosis) as well as a means for therapy as they are able to enlarge the > ducts through balooning and stenting when and where necessary. > Shaul > PSC UC > Recent Activity > a.. 4New Members > b.. 1New Polls > Visit Your Group > Yahoo! Health > Healthy Aging > > Improve your > > quality of life. > > New business? > Get new customers. > > List your web site > > in Yahoo! Search. > > Special K Group > on Yahoo! Groups > > Join the challenge > > and lose weight. > . > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 DawnThanks for the post. I hope you were not offended by my post. ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Tue, 30 Dec 2008 12:51:26 -0000To: < >Subject: Re: newly diagnosed Shaul, I thought I would share on this one. I cannot have ERCP's. I have so much scar tissue at the opening of the bile duct that they cannot get the scope to go in; therefore, I can only have MRCP's. I had one successful ERCP many years ago but since 2005 they have tried twice without success. Their only optiions are MRCP's and thePercutanious Cholangiograph, which I did have this year. The Percutanious Cholangiograph was actually less accurate then the MRCP since I have small duct PSC. My understanding is that the MRCP is about 1-5 % less accurate then the ERCP with a lot less side effects so in some cases it might be bettr for the patient. Each one of us is different though. If they are concerned about CCA then an ERCP could possibly be better. Any way that's how I view it. Dawn > > Joanne: > First off I think that your concerns are appropriate and I sympathize with them. At the same time as a fellow sufferer of PSC I would like to pose the following question. How do you make sure that there is no abnormal cell growth in the abscence of an ercp. > Make no mistake my hep would not let me go with less then two ERCPs annually and because of my levels I have them approx four times yearly, and I am frightened to heck to know what will happen when I awake from the procedure. > I know pancreatitis is a terrible thing. I recall the point of an older post here - the experience of the dr performing the ERCP greatly impacts side effect as pancreatitis. > By all means I respect your decision, and I am only curious to get your feedback. > Thanks > Shaul > PSC UC > Sent via BlackBerry by AT & T > > RE: newly diagnosed > > > Shaul - > I think there are different views on ERCP. Absolutely, they are appropriate > for intervention and treatment. Sometimes, they are necessary for > diagnosis, but often now with a good MRI, the diagnosis is made. In past, > there has been much discussion on this and many have noted the risks of > ERCP, such as pancreatitis. For my son , I would not want an ERCP > unless the physicians really felt it vital for treatment, as I would not > want to risk the potential complications. > > Joanne H > (, Ca., mom of , 18, UC/PSC 2-06) > > Kim > Welcome to the group. ... When I was first diagnosed it was explained to > me that the ERCP was not just for diagnosis rather a mechanism to rule out > various precancerous growths in the bile ducts, (I sincerely hope that this > is not too much info for right now despite your husbands rather new > diagnosis) as well as a means for therapy as they are able to enlarge the > ducts through balooning and stenting when and where necessary. > Shaul > PSC UC > Recent Activity > a.. 4New Members > b.. 1New Polls > Visit Your Group > Yahoo! Health > Healthy Aging > > Improve your > > quality of life. > > New business? > Get new customers. > > List your web site > > in Yahoo! Search. > > Special K Group > on Yahoo! Groups > > Join the challenge > > and lose weight. > . > Quote Link to comment Share on other sites More sharing options...
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