Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 ,It's a big yes from us. We took our son there for a second opinionand it was well worth the trip. We had his ERCP done there and thediagnosis confirmed. When you have something rare you want to go where they see a lot of it.LeeI was wondering how many of you have been to Mayo for an opinion on your PSC. We are considering going to Mayo Rochester to get a second opinion for my husband. His doctor is not giving us the info that we are looking for or the answers that we deserve. We are just wanting to know if it is going to be worth it to go all the way to Minnesota for a second opinion. Hopefully there are many of you that can give me some advice. Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I've been there twice, but not for an opinion. I was referred to Mayo from my GI practice right out of the ER (midnight ambulance ride). I was very impressed by the clinic, personnel, organization (and followup!). Arne ---- megasam2 megasam2@...> wrote: ============= I was wondering how many of you have been to Mayo for an opinion on your PSC... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I've been to Mayo Rochester as well and can echo the positive reviews listed elsewhere. That said, be aware of a couple things: First, be flexible with your travel arrangements. At both of my visits to Mayo, there were additional tests that they wanted to run, but I had firm return reservations that could not be moved (my mistake). It was a hassle to get them to squeeze me into the various areas for those tests. They may tell you to plan on a four day stay. I would schedule at least six or seven. If you don't have to stay longer, you can always try to get earlier flights out, or just be tourists for a while. (The Hormel Spam museum is about 45 minutes away, and it's lots of fun.) Second, it's very inconvenient to travel to Rochester, given the current state of the airline industry. Make sure that both of you have the physical stamina to make the trip, and don't underestimate the stress of travel. Third, Mayo is extremely parochial. They insist on doing all testing and procedures themselves, even if the same tests could be done quite competently and efficiently by your local doctors or a more convenient facility. You don't necessarily get better results by having everything done at Mayo, either. In my case, the recurring throat problems I was having were dismissed by multiple doctors at Mayo with nothing more than a shoulder shrug. Furthermore, in my experience the Mayo doctors have tunnel vision. They are highly specialized in their areas of expertise, but they don't necessarily consider all factors when making an evaluation. According to Mayo and the MELD model, I'm not nearly sick enough to be listed for transplant. Yet, when you put all of my other factors together...severe anemia, diminishing platelets and vanishing white cells, hypersplenomegalomy, severe pruritis, et al, not only is a transplant appropriate, but there is some urgency to it. I'm still glad I had the evaluations at Mayo, but I don't consider them infallible. You may find, as I did, that there are high quality physicians that are much closer and convenient to you. Tom PSC 1999 Crohns 2005 Xplant June 17, 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 I've been to Mayo Rochester as well and can echo the positive reviews listed elsewhere. That said, be aware of a couple things: First, be flexible with your travel arrangements. At both of my visits to Mayo, there were additional tests that they wanted to run, but I had firm return reservations that could not be moved (my mistake). It was a hassle to get them to squeeze me into the various areas for those tests. They may tell you to plan on a four day stay. I would schedule at least six or seven. If you don't have to stay longer, you can always try to get earlier flights out, or just be tourists for a while. (The Hormel Spam museum is about 45 minutes away, and it's lots of fun.) Second, it's very inconvenient to travel to Rochester, given the current state of the airline industry. Make sure that both of you have the physical stamina to make the trip, and don't underestimate the stress of travel. Third, Mayo is extremely parochial. They insist on doing all testing and procedures themselves, even if the same tests could be done quite competently and efficiently by your local doctors or a more convenient facility. You don't necessarily get better results by having everything done at Mayo, either. In my case, the recurring throat problems I was having were dismissed by multiple doctors at Mayo with nothing more than a shoulder shrug. Furthermore, in my experience the Mayo doctors have tunnel vision. They are highly specialized in their areas of expertise, but they don't necessarily consider all factors when making an evaluation. According to Mayo and the MELD model, I'm not nearly sick enough to be listed for transplant. Yet, when you put all of my other factors together...severe anemia, diminishing platelets and vanishing white cells, hypersplenomegalomy, severe pruritis, et al, not only is a transplant appropriate, but there is some urgency to it. I'm still glad I had the evaluations at Mayo, but I don't consider them infallible. You may find, as I did, that there are high quality physicians that are much closer and convenient to you. Tom PSC 1999 Crohns 2005 Xplant June 17, 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 Where is your transplant being done? > > I've been to Mayo Rochester as well and can echo the positive reviews listed elsewhere. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 My transplant will be done at town University Hospital in DC. I had my pre-surgical testing and consultation yesterday. There's nothing stopping us now. I am scheduled for surgery this coming Tuesday at 7:30 am. Dr. Lynt will be leading the surgical team for the donor, and Dr. Fishbein will be the lead on my team. Assisting them will be Dr. Kirti Shetty, who has been my hepatologist for the last four years. Between the two surgeons, they have nearly 1,000 liver transplants, so I'm in good hands. Tom PSC 1999 Crohns 2005 Xplant in Five Days Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Tom, Best wishes for a *routine* transplant and a speedy recovery! We'll be thinking of you and anxious to hear of your progress. - Severin ********** Father of 4 (8,6,2,0.5) UC/PSC 11/07 > > My transplant will be done at town University Hospital in DC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2008 Report Share Posted June 12, 2008 Good luck to you Tom and I will keep you in my prayers........ CJ Quote Link to comment Share on other sites More sharing options...
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