Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 I am thinking of going up to see Dr. Lindor at Mayo to get a second opinion on the PSC. I haven't had the MRCP or ERCP. To those who go there is it usually a day trip if you fly or do you need to stay overnight for testing? HAs anone seen Dr Lindor and or had there testing there? Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 , I did just as you are contemplating earlier this year just to see if my treatment regiment was as it should be and to possibly see if they could perform an ERCP to open blockages. Well they did not perform the ERCP since I was not having alot of problems at the time. Dr Lindor explained fatigue was the biggest complaint he has yet offered nothing to combat it. Their efficiency was second to none. Sadly I came away with the cold realization, the disease marches on; your left to deal with the quality of life however; and they do what little they can when the disease hits serious stages. Phil --- nikki0294 wrote: > I am thinking of going up to see Dr. Lindor at Mayo > to get a second > opinion on the PSC. I haven't had the MRCP or ERCP. > To those who go > there is it usually a day trip if you fly or do you > need to stay > overnight for testing? HAs anone seen Dr Lindor and > or had there > testing there? > > Thanks > > > ________________________________________________________________________________\ ____ Looking for a deal? Find great prices on flights and hotels with Yahoo! FareChase. http://farechase.yahoo.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Wow. Good luck with the appointment. I have been thinking of going to Mayo but I don't know if it would be a waste right now. I'm still in early stages so I guess I'm okay with the doc I have. I just wanted to add....Dr Lindor has spoke at PBC conventions before so I think he would probably speak for PSC as well. PSC 8/07 PBC 10/06 > H. > > PS: I wonder if any of these Mayo Dr's would consider being a speaker. > Anybody know one well enough ? > > > ------------------------------------------------------------------- ----- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2007 Report Share Posted October 1, 2007 Phil Thanks for your reply re: Dr. Lindor. Is there someone there who has more to offer from Mayo? I have been diagnosed from at cat scan enterography. I have so many questions as to how they can conclude I have PSC...and yes they mild intrahepatic bilary dilation? could it be gallstones doing this? How about small bowel overgrowth mimicing PSC following a year of vancomycin? This is a very serious disease I want to confirm the diagnosis. Do you think it is necessary to go all the way there to do that? I have no other symptoms but the occasional stabbing pain undr my right rib. Statistically I don't fit the male predominance and the ulcerative colitis eithr. Perhaps I am just in denial state who knows...I just want answers. thanks a million! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 There are two main types of PSC - large duct and small duct. Typically, those with small duct PSC (primarily involves intrahepatic bile ducts) go much longer before transplant. A stabbing URQ (upper right quadrant) pain is very typical of intermittent bile duct blockage (sludgy bile flow) and PSC. I wouldn't rely on the statistics too much, as they are indeed statistics. For our group here, of those that have stated, there are 360 of 900 that are women, and 26 of those women have Crohn's (vs. 100 UC). The numbers don't add up because we have no formal way of getting that information - just what people volunteer. But, there ARE women with PSC and Crohn's here. ERCP is still the gold standard of diagnosis. As states, MRCP is less invasive and has quite good results now. The downside is that there is no possible way to do something therapeutic (as in bile duct balloon dilatation and stenting) with MRCP, only ERCP. As far as I know, there aren't very many things that can mimic PSC. There are a few here with AIH-PSC overlap, and more than a few with inconclusive diagnoses. I have been totally asymptomatic since balloon dilatation of my common bile duct in 2001 (at Mayo, Rochester), followed by gallbladder removal 3 months later. I don't know if gallbladder disease is related to PSC, but my cholecystectomy surgeon was not surprised. There is a poll on this if you're interested. Hope that helps Arne 56 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of nikki0294 ....I have no other symptoms but the occasional stabbing pain undr my right rib. Statistically I don't fit the male predominance and the ulcerative colitis eithr. Perhaps I am just in denial state who knows...I just want answers. thanks a million! Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 Dear ,When you call Mayo they can tell you what test they want to do and how many days you should allow. There are places to stay nearby.If you go for a second opinion , get all the test done in one visit so that you come away with a treatment plan your local Dr. can follow up with.By the way, Dr. Lindor has already been a speaker at out PSC conferences.LeeI am thinking of going up to see Dr. Lindor at Mayo to get a second opinion on the PSC. I haven't had the MRCP or ERCP. To those who go there is it usually a day trip if you fly or do you need to stay overnight for testing? HAs anone seen Dr Lindor and or had there testing there?Thanks__._,_._ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 I had my first visit to Mayo about six months ago. I was going through the transplant listing process with town Hospital in DC at the time. There were some suspicious growths on the MRCP, and they wanted to make sure that there wasn't any cholangiocarcinoma before listing me. So, off I went to Mayo for two weeks of poking, sticking, prodding, and consultations with Dr. Gores, who is another PSC/Cholangiocarcinoma expert there. The people at Mayo will tell you how long you need to stay in advance of your visit. Usually, you will be there several days as they are extremely thorough. It's exhausting, but well worth it. In my case, it was a lengthy process because they needed to do a workup for cancer in addition to the normal PSC workup. I imagine that a plain vanilla PSC evaluation wouldn't take that long. Fortunately, despite some abnormal tissue growth in the bile ducts, Dr. Gores concluded that there was no evidence of cancer. He instructed me to go and sin no more and return in six months. I am scheduled to go back out to Rochester in early November for follow-up, but this time I only need to stay for two days...the hard stuff is done. Overall, the trip was well worth the travel hassles and time spent away from home, if for nothing else than peace of mind. Tom PSC 1999 > > I am thinking of going up to see Dr. Lindor at Mayo to get a second > opinion on the PSC. I haven't had the MRCP or ERCP. To those who go > there is it usually a day trip if you fly or do you need to stay > overnight for testing? HAs anone seen Dr Lindor and or had there > testing there? > > Thanks > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2007 Report Share Posted October 2, 2007 , I have met with Dr. Lindor on a couple of occasions at the Mayo clinic. I had my first biopsy, bone scan, an upper endoscopy and a whole lot of blood work done up there. If you make an appointment to see the good doctor, they may advise you to expect a couple of days for testing. They like to have an additional day or two for added procedures Lindor may request after seeing results from already planned tests. I am going up to see him in early December to have an MRCP and Biopsy done as part of the High Dose Urso Study 5th year exam. They told me to plan some extra time in the event he wants additional tests done. By the way, he is a great doctor. His staff is fantastic and all the ancillary departments have been terrific. Good Luck! Tarheel Tim Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.