Guest guest Posted December 26, 2008 Report Share Posted December 26, 2008 I am currently 59 years old. I was diagnosed with PSC in 1990. The symptoms started in 1987, but I was wrongly diagnosed with Hepatitis A. I also have Ulcerative Colitis. These two diseases can appear together in some patients since they are both auto immune diseases. I was diagnosed with an ERCP. When I needed checked again in 2005 they did an MRCP (MRI of the bile ducts) to determine the stage of the disease. I agree with a prior comment that an ERCP is the gold standard and the MRCP is a close second. I also understand not wanting to do an invasive procedure if it is not absolutely needed. My GI told me that an Ultra Sound of the abdomen/liver was recommended at least annually in PSC patients along with a CBC and Chem Panel every three to six months. My local Gastroenterologist had a special interest in diseases of the liver. He guided me well; however, in retrospect, I feel that a hepatologist would have been very helpful when it came time for my transplant. I was without acute symptoms from 1990 to the 2007. I did not have the secondary symptoms - fatigue and itching - until July 2007. In September 2007 I was refered to a transplantation center. My health rapidly deteriorated from that point and my MELD went to 29 within 30 days. I was transplanted in mid-October 2007. I feel great and take fewer medications now than I did prior to transplant. PSC is not fun, but it is not a dealth sentence. My advice is to become proactive about your husbands healthcare. Keep records of his exams, test, results, and medications. As your doctors questions. Joe Berry To: Sent: Friday, December 26, 2008 2:19:23 PMSubject: newly diagnosed 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 26, 2008 Report Share Posted December 26, 2008 I am currently 59 years old. I was diagnosed with PSC in 1990. The symptoms started in 1987, but I was wrongly diagnosed with Hepatitis A. I also have Ulcerative Colitis. These two diseases can appear together in some patients since they are both auto immune diseases. I was diagnosed with an ERCP. When I needed checked again in 2005 they did an MRCP (MRI of the bile ducts) to determine the stage of the disease. I agree with a prior comment that an ERCP is the gold standard and the MRCP is a close second. I also understand not wanting to do an invasive procedure if it is not absolutely needed. My GI told me that an Ultra Sound of the abdomen/liver was recommended at least annually in PSC patients along with a CBC and Chem Panel every three to six months. My local Gastroenterologist had a special interest in diseases of the liver. He guided me well; however, in retrospect, I feel that a hepatologist would have been very helpful when it came time for my transplant. I was without acute symptoms from 1990 to the 2007. I did not have the secondary symptoms - fatigue and itching - until July 2007. In September 2007 I was refered to a transplantation center. My health rapidly deteriorated from that point and my MELD went to 29 within 30 days. I was transplanted in mid-October 2007. I feel great and take fewer medications now than I did prior to transplant. PSC is not fun, but it is not a dealth sentence. My advice is to become proactive about your husbands healthcare. Keep records of his exams, test, results, and medications. As your doctors questions. Joe Berry To: Sent: Friday, December 26, 2008 2:19:23 PMSubject: newly diagnosed 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 26, 2008 Report Share Posted December 26, 2008 I am currently 59 years old. I was diagnosed with PSC in 1990. The symptoms started in 1987, but I was wrongly diagnosed with Hepatitis A. I also have Ulcerative Colitis. These two diseases can appear together in some patients since they are both auto immune diseases. I was diagnosed with an ERCP. When I needed checked again in 2005 they did an MRCP (MRI of the bile ducts) to determine the stage of the disease. I agree with a prior comment that an ERCP is the gold standard and the MRCP is a close second. I also understand not wanting to do an invasive procedure if it is not absolutely needed. My GI told me that an Ultra Sound of the abdomen/liver was recommended at least annually in PSC patients along with a CBC and Chem Panel every three to six months. My local Gastroenterologist had a special interest in diseases of the liver. He guided me well; however, in retrospect, I feel that a hepatologist would have been very helpful when it came time for my transplant. I was without acute symptoms from 1990 to the 2007. I did not have the secondary symptoms - fatigue and itching - until July 2007. In September 2007 I was refered to a transplantation center. My health rapidly deteriorated from that point and my MELD went to 29 within 30 days. I was transplanted in mid-October 2007. I feel great and take fewer medications now than I did prior to transplant. PSC is not fun, but it is not a dealth sentence. My advice is to become proactive about your husbands healthcare. Keep records of his exams, test, results, and medications. As your doctors questions. Joe Berry To: Sent: Friday, December 26, 2008 2:19:23 PMSubject: newly diagnosed 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 27, 2008 Report Share Posted December 27, 2008 Hi Kim, After much searching, we found Dr. Bass (Hepatologist) and Dr. Terdiman (GI) who are at UCSF. Dr. Terdiman is a Godsend. We email him questions, and usually we have a response within the hour. I can check, but I believe Kaiser is my son’s insurance. Dr. Bass is older and has worked with Dr. Chapman in Oxford, England. (Dr. Chapman is one of the most experienced and knowledgeable physicians in PSC and has been very involved in PSC research through the years.) You can write to me directly at marscow@... if you need more information regarding these two doctors. Good luck to you. All will be well. Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > 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. > > > > > > > > > > -- > Ian Cribb P.Eng. > > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Hi Kim, After much searching, we found Dr. Bass (Hepatologist) and Dr. Terdiman (GI) who are at UCSF. Dr. Terdiman is a Godsend. We email him questions, and usually we have a response within the hour. I can check, but I believe Kaiser is my son’s insurance. Dr. Bass is older and has worked with Dr. Chapman in Oxford, England. (Dr. Chapman is one of the most experienced and knowledgeable physicians in PSC and has been very involved in PSC research through the years.) You can write to me directly at marscow@... if you need more information regarding these two doctors. Good luck to you. All will be well. Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > 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. > > > > > > > > > > -- > Ian Cribb P.Eng. > > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Hi Kim, After much searching, we found Dr. Bass (Hepatologist) and Dr. Terdiman (GI) who are at UCSF. Dr. Terdiman is a Godsend. We email him questions, and usually we have a response within the hour. I can check, but I believe Kaiser is my son’s insurance. Dr. Bass is older and has worked with Dr. Chapman in Oxford, England. (Dr. Chapman is one of the most experienced and knowledgeable physicians in PSC and has been very involved in PSC research through the years.) You can write to me directly at marscow@... if you need more information regarding these two doctors. Good luck to you. All will be well. Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > 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. > > > > > > > > > > -- > Ian Cribb P.Eng. > > ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2008 Report Share Posted December 27, 2008 Intersting originally my gastro told me all about PSC, however he said iin order to stay on the cutting edge of tx and meds he felt I would be under better care with a hep. ShaulPSC UCSent via BlackBerry by AT&TFrom: "kim_reilly160" Date: Fri, 26 Dec 2008 22:51:03 -0000To: < >Subject: Re: newly diagnosed Thank you for your quick responses. Its good to know there are people out there LIVING! with the disease. My husband is 53 and we suspect he has had it for at least 3 years undiagnosed, so we have no idea how progressed it is. We live in the San Francisco Bay area. We have fairly close access to Stanford and UCSF Medical centers. Any information on additional health professional contacts would be great. I think we are going to try to get a second opinion. We are Kaiser members so a second opinion out of the group is our cost... We don't even know if Kaiser has a specialist in this disease. I feel like we have a long way to go just to know the basics. Kim > > > > 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. > > > > > > > > > > -- > Ian Cribb P.Eng. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2008 Report Share Posted December 28, 2008 KimWelcome to the group. The group was and continues to be a great source of information for us members and loved ones with PSC.I remember first being diagnosed with PSC- shell shock would have been an understatement. I hope your husband is seeing or will see a hepatologist. As opposed to a gastroenterologist w/o continued specialty in liver diseases. 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. ShaulPSC UCSent via BlackBerry by AT&TFrom: "kim_reilly160" Date: Fri, 26 Dec 2008 20:19:23 -0000To: < >Subject: newly diagnosed 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 28, 2008 Report Share Posted December 28, 2008 KimWelcome to the group. The group was and continues to be a great source of information for us members and loved ones with PSC.I remember first being diagnosed with PSC- shell shock would have been an understatement. I hope your husband is seeing or will see a hepatologist. As opposed to a gastroenterologist w/o continued specialty in liver diseases. 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. ShaulPSC UCSent via BlackBerry by AT&TFrom: "kim_reilly160" Date: Fri, 26 Dec 2008 20:19:23 -0000To: < >Subject: newly diagnosed 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 28, 2008 Report Share Posted December 28, 2008 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) KimWelcome 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. ShaulPSC UC .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Kim, Like ee i am also seeing a gastro who specializes in Liver Disorders. And also - my orginal Gastro who i was seeing for UC never even mentioned or tested for PSC. My current Gastro said it is hard to determine which came first - the PSC or UC. But Probably the PSC. Hang in there - this is not a death sentence by any means. Keep asking questions to your doc and here. Good Luck, Jeff > > > > Hi ee, > > Thanks for your response. My husband is currently seeing a gastro. > I hadn't heard of a > > hepatologist. Which one is best for this disease? > > > > Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Kim, Like ee i am also seeing a gastro who specializes in Liver Disorders. And also - my orginal Gastro who i was seeing for UC never even mentioned or tested for PSC. My current Gastro said it is hard to determine which came first - the PSC or UC. But Probably the PSC. Hang in there - this is not a death sentence by any means. Keep asking questions to your doc and here. Good Luck, Jeff > > > > Hi ee, > > Thanks for your response. My husband is currently seeing a gastro. > I hadn't heard of a > > hepatologist. Which one is best for this disease? > > > > Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2008 Report Share Posted December 29, 2008 Kim, Like ee i am also seeing a gastro who specializes in Liver Disorders. And also - my orginal Gastro who i was seeing for UC never even mentioned or tested for PSC. My current Gastro said it is hard to determine which came first - the PSC or UC. But Probably the PSC. Hang in there - this is not a death sentence by any means. Keep asking questions to your doc and here. Good Luck, Jeff > > > > Hi ee, > > Thanks for your response. My husband is currently seeing a gastro. > I hadn't heard of a > > hepatologist. Which one is best for this disease? > > > > Kim > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 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. ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: "Copper" Date: Sun, 28 Dec 2008 10:46:51 -0800To: < >Subject: 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) KimWelcome 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. ShaulPSC UC . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 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. ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: "Copper" Date: Sun, 28 Dec 2008 10:46:51 -0800To: < >Subject: 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) KimWelcome 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. ShaulPSC UC . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 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. ThanksShaulPSC UCSent via BlackBerry by AT&TFrom: "Copper" Date: Sun, 28 Dec 2008 10:46:51 -0800To: < >Subject: 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) KimWelcome 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. ShaulPSC UC . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2008 Report Share Posted December 30, 2008 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 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 No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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 No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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 No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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 31, 2008 Report Share Posted December 31, 2008 That is very trueShaulSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Wed, 31 Dec 2008 03:06:50 -0000To: < >Subject: Re: newly diagnosed No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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 31, 2008 Report Share Posted December 31, 2008 That is very trueShaulSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Wed, 31 Dec 2008 03:06:50 -0000To: < >Subject: Re: newly diagnosed No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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 31, 2008 Report Share Posted December 31, 2008 That is very trueShaulSent via BlackBerry by AT&TFrom: "mdwblaze" Date: Wed, 31 Dec 2008 03:06:50 -0000To: < >Subject: Re: newly diagnosed No not offended at all - We all have our own experiences and every doctor seems to have their own beliefs on what protocols work best. I hope you weren't offended by mine. I just wanted to share my experience and Why I cannot have ERCP's. > > > > 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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