July 4, 2010 at 9:24 pm #36628betsyMember
I heard from the Mayo Clinic in Rochester and they said there was no surgical fix available and I should “stay the course” with the Cleveland Clinic. University Hospital was more aggressive and wanted to pursue surgery. I met with my doctors at the Clinic and have decided to stay with them and continue with their treatment plan. My surgeon said he would not perform surgery at this time but may have to in the future. He said surgery is if everything else fails….surgery carries so much risk, if it doesn’t go well, there is nothing else he can do for me except palliative care. I guess I don’t have any other options right now. I think the biggest problem will be developing resistant infections. On July 12th, I’m going to have a 3rd stent placed. Yuck.
Also, just an F.Y.I. my surgeon recommended Pittsburgh Medical Center and Northwestern as good hospitals for surgery and radiology.
BetsyJune 13, 2010 at 9:33 pm #36627marylloydMember
I’ve heard good things about University Hospital. I know of sevral people who left the Clinic to go there and were very happy. I’m glad you’re getting more input into your problem. I can’t help you with your question but I sure hope you get some help to heal your bile duct. I give my husband beet root extract. It is is the only supplement I have ever seen that lists bile duct health as a benefit. Maybe it wouldn’t hurt to try it. It may help with the healing process. My husband’s ducts were very badly damaged after all of his radiation in “06 and I really feel it helped. Best wishes, MaryJune 13, 2010 at 3:21 pm #36626betsyMember
I’ve been seeking more opinions re. my bile duct leak. The doctors at the Mayo Clinic in Rochester said they wouldn’t do anything different than what the Cleveland Clinic is doing…..stents. University Hospital suggested that I have a new MRI and MRV/MRA/MRCP taken as well as re-culturing the bile in the drainage bag. The U.H. doctor said sometimes bile ducts don’t heal due to ongoing infection, poor blood supply to the duct or recurrent disease. It turns out I have VRE (vancomycin-resistant enterococci) and am taking Zyvox for it. I didn’t even know I had an infection because I haven’t had a fever. I’ve been on Augmentin and Cipro for months. But this bacteria is resistant to Augumentin. The only one it responds to is Zyvox. Anyone had experience with this kind of bacteria and/or antibiotic?
I don’t know if this will make a difference with my leaky duct but I’ve learned more about this problem.
BetsyMay 30, 2010 at 5:30 pm #36625devoncatMember
Let us know how it goes. I am interested in that they are willing to try something different. It is good when doctors think outside the box.
Take care of yourself.
KrisMay 29, 2010 at 7:37 pm #36624elainewParticipant
My husband, Gary, had a bile leak for 16 months after his Whipple. His surgeon kept hoping it would heal itself as he had never had a patient before that didn’t heal on it’s own. He suffered through all the drain changes and infections too. They tried everything…no food or drink (he had a feeding tube) for weeks, huge doses of strong antibiotics administered through a PICC line, nothing worked. Finally the surgeon resorted to surgery to redirect the bile so that it drained internally into his intestine (and did a tummy tuck at the same time to correct the huge hernia he had as a result of the Whipple). That did the trick…unfortunately by then Gary was so malnurished and had had to wait so long for chemo and radiation that he never bounced back and the cancer spread. I believe he is one of the 40% of cancer patients that they say actually dies of malnutrition.
Good luck with whatever your doctor recommends…I know how difficult it is to suffer with that when you’ve been through so much already.
My prayers are with you, ElaineMay 29, 2010 at 1:03 pm #36623
Still dealing with leaky bile duct. The doctors are considering using a non-porous sheath to cover the hole. I guess this sheath is used for repairing arteries not bile ducts. I’ll let you know if they decide to go ahead….could be a good thing if it works. If it doesn’t work, its back to the drawing board. In the meantime, I’m still draining to 2 external bags, taking 2 antibiotics, trying to stay out of the hospital. The good news is I’m feeling pretty good, have put on some weight and can get out and about so something must be working
BetsyMay 9, 2010 at 7:14 pm #36622marionsModerator
Betsy…I have been told that a leakage such as the one you are experiencing can be difficult to treat. I would also search out another opinion from another center. You might also want to ask your physicians to contact other specialists on your behalf.
Hang in there.
MarionMay 9, 2010 at 4:48 pm #36621gavinModerator
Sorry to hear that you are still having troubles over this and that you are not getting answers to your questions from your doctor. You are right in that maybe another set of eyes will help so I am glad to hear that you are going to speak with the Mayo clinic. Hopefully they will be able to come up the answer and what to do about this.
My best wishes to you,
GavinMay 9, 2010 at 3:45 pm #36620lainyMember
I agree with you whole heartedly! We just went through that with Teddy’s Radman and I am changing Radiologists. The ONC in a nod agreed. In 9 months and 3 PET Scans, according to this Radman, who is tops here, the 2 tumors changed location, changed growth pattern, and first appeared at 2 different times now. Every question I asked he looked me in the eye and said nothing! I mean his mouth did not open. Time for change. Good idea and let us know what Mayo says.May 9, 2010 at 3:18 pm #36619
I feel like I’m losing my mind. Every time I see my doctors I get different versions of the same story! First, they can’t find the leak, then they can find the leak, then its a new leak, then its a stricture…its making me nuts! I really pressed my surgeon for some sort of plan other than see you in 3 weeks and he said he didn’t know…the leak should have healed by now and since it hasn’t maybe I can qualify for a liver tansplant if I make it to 2 years w/o a reccurence…..but at this point, a surgical fix doesn’t seem to be an option. So I asked, “What am I supposed to do until then?”…no answer. So then my radiologist said he could see the leak and it should heal and if not, it can be surgically corrected. I don’t know what to think anymore. Sometimes, I think this is just too complicated for me to understand but then I think, I’m no Albert Einstein but I’m no dummy either. I’ve decided its time to seek another opinion. Maybe another set of eyes can clarify things for me. I’m talking to the Mayo Clinic in Rochester.
BetsyApril 28, 2010 at 8:34 pm #36618
Well, not much news regarding my recent tube change and cholangiogram. The doctor said the abcess cavity is smaller (good news) but the bile duct is still leaking. My next appointment is in about 2 weeks.
BetsyApril 24, 2010 at 9:41 am #36617marylloydMember
I really need you and Tom to correspond. You sound exactly alike. I can’t imagine what you guys have to go through! Last Monday AM he was waiting in his hospital room (after hanging out there all weekend for them to decide what to do) and the team of residents came in, he asked if they knew when he was going to have his ERCP, they kind of looked at him blankly and he told them to get out if they didn’t know anything. He said they just looked at him shocked and he said, I mean it, just leave, all of you! Ha! He said the nurses were eating it all up. I guess they enjoy seeing the patients get angry at the Docs instead of them all of the time. Anyway he gets tired of the constant poking and prodding too and last weekend was kind of the last straw. I think the Docs got the message loud and clear. Sometimes you just have to get forceful for them to tell you what is happening. At least the abcess cavity is geting smaller. Hopefully it will continue to shrink and they can take the drains out. Your situation sounds very confusing. You need to have the Docs sit down and literally draw you a picture of what’s going on. We’ve had them do that quite often. Take care and vent whenever you feel the need. We all understand believe me! MaryApril 24, 2010 at 2:41 am #36616lainyMember
Hi Betsey and I know for sure you are not alone. Whether you are the patient or the care giver we all hit our highs and lows. Sometimes a little pity party is just what is needed and then we get back on the track again. So, please feel free to vent away, we have broad shoulders and sometimes it does a body good to just let it all out and then with a renewed spirit look at a brighter outcome. Sending you some cyber hugs!!!April 24, 2010 at 1:48 am #36615
I ran into problems yesterday when one the bags stopped draining for about 8 hours. So, I had to go in today for a tube change rather than wait until Monday….didn’t want to run the risk of becoming septic again. The only information I was given after today’s procedure was that the cavity formed by the abcess is smaller. I’m going back in 2 weeks for another look. I get so annoyed because the more I try to pin my docs down for information, the more confused I become. I really need to whine tonight. I’m so sick of being stuck with needles, poked with holes, having dye pumped through my liver, being sedated, taking antibiotics !!!! Anybody else out there feeling the same way today?
BetsyApril 21, 2010 at 6:39 pm #36614devoncatMember
Want to add my best wishes for monday too!
Hope you come back and post some great news.
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