Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Do you mind if I ask - What did they see? How are you? With love, Barb in Texas - Together in the Fight, Whatever it Takes! Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas Hi Barb, I don't mind at all, but you might be sorry you asked! LOL I've been following Ken's setbacks and progress...you guys have had such a very long haul! I admire your tenacity and support of him and everyone else with PSC. As far as what they saw on my MRCP... "There is marked dilatation of the intrahepatic bile ducts as far as the hepatic hilum. The central portions of the left and right hepatic ducts and the common duct are not dilated. There is ductal wall thickening and enhancement at the hepatic hilum, but no definite mass is seen. Appearances are consistent with a hilar stricture which could be benign or malignant. There is mild irregularity of caliber of the dilated intrahepatic bile ducts consistent with PSC. The liver has a cirrhotic configuration with large regenerative nodules." If anyone would like to translate all that for me, by all means! But as Dr. Gores explained to me, I have a "hilar stricture" that is quite complex. It is located at the crux of where three primary ducts come together. He thinks this is the primary culprit behind my frequent bacterial cholangitis attacks. For the last couple of years I've been able to mostly manage the attacks with preemptive antibiotics (didn't work in March and I ended up in the hospital for 3 days). In other words, with the least hint of trouble I start taking antibiotics for a minimum of 5 days (Levaquin) and if I feel better after that, I stop. He has offered two other approaches: - One would be to go on antibiotics long-term, rotating them if and when they become ineffective. I'm not crazy about that idea...yet. -The other approach he suggested is ERCP with dilitation and stenting of the strictures. (Nevermind that 2 years ago during my last ERCP, Dr. Barkin at Mt. Sanai in Miami said there was no way to get up there and do any dilitation or brushings, much less stenting!). Dr. Gores further explained the hilar sticture would likely require three (metal) stents and would most likely need to be replaced every 6-8 weeks over a 6 month period. He said I would need to count on being at Mayo for a week each time as I would most likely get sick from the procedure and have to be hospitalized. A minimum of three 1-week stays at Mayo seems like a huge commitment at the moment. He emphasized that future management would most certainly have to be performed at Mayo given their experience with this. I trust that. He said they would also perform brushings for cancer, but he thought it unlikely there would be any malignancy given I am not jaundiced, CA 19-9 and C-reactive protein are normal. So, anyway, I told him I needed some time to mull all this over and decide if I want to just keep doing what I'm doing (antibiotics) or go for the stenting. Naturally, I've read lots of not so pleasant things about hilar strictures and cancer and taking that into consideration, but I'm not sure my quality of life is low enough to justify the whole stenting ordeal...read some not so good outcomes of that on here too!! He doesn't seem to be pulling me one way or the other, which was a little surprising. I am not a candidate for transplant, by the way. He said that my MELD would not be much different that a normal healthy person. I do have varices of the abdomen and he has recommended that I get screened for esophageal varices even if I don't move forward with the stenting. I'm sorry this is so long. But maybe you or someone else can give me their two cents worth! I appreciate your asking and any input. I hope Ken continues to improve and hopefully I can meet you guys in ville in the spring. Jeff PSC 1989 PS. For anyone considering treatment or consultation at Mayo (Rochester), it was a very good experience. I'm glad I went. See what's new at AOL.com and Make AOL Your Homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 -----Original Message----- For the last couple of years I've been able to mostly manage the attacks with preemptive antibiotics This certainly sounds like the easiest route to take and it seems like it’s working well for you. (Never mind that 2 years ago during my last ERCP, Dr. Barkin at Mt. Sanai in Miami said there was no way to get up there and do any dilitation or brushings, much less stenting!). It has been our experience (and only our experience) that when a doctor says “no way” it usually means - “I can’t”. He doesn't seem to be pulling me one way or the other, which was a little surprising. This sounds good to me. He must feel there is no urgency and no demanding reason for the stinting – right now - or he would have told you so. From what I hear, he doesn’t sound like the shy type, so if he was adamant about which route to take, he would have told you. Which just makes your decision harder (sorry.) One thing to think about (making your decision harder again – sorry!) There was a man named Phil in our group, he was having attacks all the time – for several years. He was pretty sick, went through evaluation and was listed. It was really hard on him and his wife was always worried. All at once his attacks stopped – no reason – they just stopped. It has been several years now and he is still doing well, attack free and in good health, in fact they took him off the list a couple of years ago. We can all hope huh? Sorry I couldn’t be any help Barb in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Hhhm is it just me? or does anyone else feel that just when you think you have a really good understanding of this disease and have given yourself a well deserved pat on the back, that you read another complicated/unusual report from a dr (as provided by below, hello Chris!) & your understanding disappears into the distance with no intention of coming back! Seriously do they send out a global smoke signal that informs them that there are patients out there who might actually know just as much as them about PSC & therefore everyone should immediately try their upmost to disprove this and therefore restore the balance of power (just joking ) On a serious note Chris/Barb I have no idea what this report means & I have spent hundreds of hours researching recently. I can't even say I get the general gist with any certainty. I am interested to see what the others on here make of it. Best wishes (in the UK) > > -----Original Message----- > For the last couple of years I've been able to mostly manage the attacks > with preemptive antibiotics > This certainly sounds like the easiest route to take and it seems like > it's working well for you. > > (Never mind that 2 years ago during my last ERCP, Dr. Barkin at Mt. > Sanai in Miami said there was no way to get up there and do any > dilitation or brushings, much less stenting!). > It has been our experience (and only our experience) that when a doctor > says " no way " it usually means - " I can't " . > > He doesn't seem to be pulling me one way or the other, which was a > little surprising. > This sounds good to me. He must feel there is no urgency and no > demanding reason for the stinting - right now - or he would have told > you so. From what I hear, he doesn't sound like the shy type, so if he > was adamant about which route to take, he would have told you. Which > just makes your decision harder (sorry.) > > One thing to think about (making your decision harder again - sorry!) > There was a man named Phil in our group, he was having attacks all the > time - for several years. He was pretty sick, went through evaluation > and was listed. It was really hard on him and his wife was always > worried. All at once his attacks stopped - no reason - they just > stopped. It has been several years now and he is still doing well, > attack free and in good health, in fact they took him off the list a > couple of years ago. We can all hope huh? > > Sorry I couldn't be any help > Barb in Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2007 Report Share Posted October 16, 2007 Sorry, please replace with Jeff below (apologies Chris/Jeff) Perhaps I have just proved why I don't understand anything, apparently I don't check it thru properly! > > Hhhm is it just me? or does anyone else feel that just when you think > you have a really good understanding of this disease and have given > yourself a well deserved pat on the back, that you read another > complicated/unusual report from a dr (as provided by below, > hello Chris!) & your understanding disappears into the distance with > no intention of coming back! > > Seriously do they send out a global smoke signal that informs them > that there are patients out there who might actually know just as > much as them about PSC & therefore everyone should immediately try > their upmost to disprove this and therefore restore the balance of > power (just joking ) > > On a serious note Chris/Barb I have no idea what this report means & > I have spent hundreds of hours researching recently. I can't even > say I get the general gist with any certainty. > > I am interested to see what the others on here make of it. > > Best wishes > (in the UK) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2007 Report Share Posted October 19, 2007 One would be to go on antibiotics long-term, rotating them if and when they become ineffective. I'm not crazy about that idea...yet. -The other approach he suggested is ERCP with dilitation and stenting of the strictures. >>>> Jeff, I've basically gone both routes but at different times. My hep doesn't like stents (feels they get clogged up too quickly) so he would perform 2 ERCP's about 6 weeks apart for the purpose of dilating the strictures. My PSC was managaed this way for 5 years until this past June when he said it just wasn't possible anymore to keep the ducts open. Now I"m on the tx waiting list. Currently I am on a maintenance dose of antibiotics to prevent cholangitis. I've had many bouts of cholangitis in the past 3 years which has been my main symptom of PSC. It might be that Dr. Gores would be able to get into your ducts even though your last doc couldn't. It is a tough decision and not a fun one to make. Hope some of this helps. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, listed 9/18/07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter born 6/06 and 2 golden retrievers Quote Link to comment Share on other sites More sharing options...
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