Searching Mayo Clinic

Scott Allen10, I really think we’re past the days when a surgeon would just toss a patient onto the table by the neck and start hacking away at their insides immediately. 😈
Getting thorough with pre-op workups and prep is everything. It lets us map out a procedure that actually helps the patient long-term, especially when dealing with hepatobiliary tumors. Like you were saying, the symptoms usually don't even show up until the disease has already spread, and by then, we're often looking at palliative care just to keep them comfortable. We might need to do a bile duct diversion to prevent cholestasis—you know, that jaundice that causes unbearable itching and bilirubin encephalopathy, not to mention how much it stresses out an already exhausted liver fighting metastases. Or we have to perform a gastrojejunostomy (GEA), because those inoperable tumors eventually grow large enough to block the stomach outlet, basically starving the patient. In those cases, we loop a bit of the small intestine to the stomach so food can bypass the duodenum.
So, if the common bile duct is still passable—meaning the tumor isn't right on top of it yet or hasn't squeezed it shut—we can just place a metal stent to keep things moving. That kind of procedure is quicker and requires less anesthesia time, which is huge for someone who’s already physically drained from being sick. Of course, sometimes we unfortunately have to go the route of a percutaneous bile duct drainage... basically threading a catheter into the common bile duct under X-ray guidance without full anesthesia...

Susan Martin24 said:Sorry, this might be a little too heavy for a forum discussion... but I'm pretty sure Casey Cook10 will get what I'm getting at... 😍

I guess we drifted a bit off-topic here. We actually started out talking about gallbladder cancer with liver infiltration/metastases...
It’s true that the prognosis changes things, but just looking at what was mentioned for this specific case, I think the whole reason for doing an ERCP is still kind of fuzzy—especially if they already know the tumor is in the gallbladder. And if it's primarily gallbladder cancer that's hitting the ducts or the pancreas... then we're looking at Stage IV, where you really just have to see what kind of resection or palliative care is even possible, which would make the ERCP necessary.
Anyway, I don't want to overwhelm everyone 🙂

The thing is, in our healthcare system, whenever you ask for more differential diagnostics just so you can map out a precise procedure—or even just a Plan B or a bailout option—everyone seems to act like it's weird. And while the patient is busy jumping from one hospital to another trying to get all those tests done, who knows how much their initial condition has changed in the meantime.

Susan Martin24 said:There's just so much to cover here, I feel like I could write about this for days...

Seriously, go for it—dive deep into this from your perspective... maybe even start a blog if you're feeling it. Or just keep posting here, we could honestly start a whole sub-thread dedicated to "treating the untreatable"...

If it helps at all, the mod is actually pretty chill about off-topic posts like this one🙂

I just haven't quite figured you out yet—are you a doctor too, Scott Allen10?

Jose Miller3 said:just so you guys know, our mod is actually pretty chill about all this off-topic stuff🙂

I'm still trying to wrap my head around it, though—are you a doctor too, Scott Allen10?

First off....🙂

And second....🙂 ....😈

Starting a new thread

I might need an ERCP because my thickening hit 10 mm, which is just over the 8 mm limit (PSA 0.4). I actually had gallstones removed via laparoscopy about three and a half years ago. Apparently, they perform ERCPs at the Mayo Clinic in New York City, specifically at locations like Ribera or in a Suburban neighborhood.

If anyone has experiences, info, or advice... I guess anything would be helpful.

Is anyone there?

Thomas Cooper said:Is anyone actually out there?

So, wiredfox34 actually showed up after all.

Well, I suppose there’s more than a little room for commentary here.

First, let me quote the post.

We’ve finally scheduled the ERCP. It’s happening in New York City next week.
On top of all that, we’ve got an angiography scheduled. Hopefully, that gives the doctors enough to work with before they decide on surgery.
ju.
I have to say, we’ve had a hell of a time getting to this point. It really feels like the system is just broken.
It’s totally self-contained. From the outside, sure, it looks like everything is running smoothly, but that’s just the surface level. It only actually starts to work when...
Once you get inside, you realize it's mostly just winging it and improvising on the fly.

Even when the system is completely broken, people like you give us reason to stay hopeful.
Let’s keep this momentum going. Seriously, a huge thank you to everyone for the support—it means the world. Stay strong out there.
Fingers.

It’s been five years since that post was written, and honestly? Things have only gone downhill from there.
People like you? You guys just got lost somewhere in the vast, empty wilderness of neoliberal capitalism. It’s all gone completely off the rails, leaving nothing behind—not even a single post.
So, I’ve been thinking... if someone—let’s call them a patient, to be polite—finds themselves in a position where they've already gone through two failed attempts to clear a stone from their bile duct, who exactly is the next person on the list to contact? Who do you actually turn to when things aren't working?

The bottom line? All in all.
Hey, Adam Smith, why don't you just tell us what's actually going on? If I'm supposed to know how you feel, you'll have to speak up first.
I'm happy to jump in.
Just taking some notes while I work.😍

I’m feeling a bit torn about whether I should go through with the ERCP or not.
Some doctors seem to recommend it, while others are a bit hesitant because of some patients' bad experiences with the procedure. I'm just looking for any experiences, recommendations, or thoughts... I guess I just don't know what to do. I don't really have any symptoms or issues right now, but still...

Thomas Cooper said:I'm stuck in a bit of a bind regarding whether or not to go through with an ERCP.
Some doctors are pushing for it, while others are telling patients to steer clear because of some bad outcomes they've seen. I’m looking for actual experiences, recommendations, or just general thoughts... I honestly don't know what the right move is. I'm not even feeling any symptoms or issues right now, but still...

Look, every medical procedure has its pros and cons.
There’s always going to be some level of risk involved with anything you do.
That's why
it's usually best to follow a specialist's lead—even if they aren't perfect.
The thing is,
they have a much lower chance of messing up than we do, considering we don't really have the training.
And honestly?
The biggest risk of making a mistake is
if you end up following advice you found on an internet forum.
Why? Because
there are two main issues here (at the very least):😁
First, we know virtually nothing about you or your specific situation (which, in your case, involves having no symptoms at all) 😂 and
second, you know almost nothing about us people offering advice.🙏
☕

I also wanted to pick your brains regarding this procedure. We have a patient who was admitted to the local hospital three days ago because she was dealing with some intense upper abdominal pain. After running an ultrasound on her gallbladder and following up with an MRI, the doctors suggested an ERCP. Since being admitted, she hasn't eaten anything at all—just sipping tea and staying on IV fluids. Given that she’s nearly 80 years old and has a complicated medical history involving heart issues, thyroid problems, and whatnot, I’m curious to get your take on whether the procedure is actually worth the risk for someone in her condition.

My wife had her gallbladder removed about twenty years ago, and since then, she’s been dealing with these intense, sudden bouts of pain that have sent her to the ER countless times. She could never quite figure out which foods trigger it—one thing is fine one day, then the next, everything is a nightmare and she's back in the emergency room. This year, things just took a turn for the worse; the pain became so constant that she ended up in the hospital after visiting the ER about twenty times. While she was there, they were also treating her for H. pylori. Between the IV fluids, medications, ultrasounds, MRIs, and endoscopies—not to mention her battling gastritis, psoriasis, and CLL—they finally discovered that the original gallbladder surgery hadn't gone perfectly, as if something was still left behind inside... one doctor called it a follicle, another called it a tiny stone or something like that...

Finally, when she was eight months along with this ordeal, she underwent an ERCP at Mayo Clinic, where they managed to pull four stones out of her bile duct. Apparently, one was unreachable, so it stayed put. To make matters worse, the procedure triggered pancreatitis. She was on IV drips, couldn't eat anything for a week, and ended up losing 14 pounds. Once we got home, the cycle just repeated: the pain, the nausea, the vomiting, more trips to the ER and the hospital... it was just endless. It felt like we were just swallowing lemons and waiting, waiting, while doctors kept getting pulled away by other "emergencies."

After being hospitalized four times in just six months, she’s scheduled to go back this Monday, December 29th, for a full battery of tests and another ERCP to clear out four more stones, with the hope that they can finally say everything is gone. She handled this procedure better than the first one, but still...

...between the massive weight loss of 20 pounds and all the sheer terror and stress, she ended up breaking out in Herpes zoster. Honestly, it’s been horrific. It is incredibly difficult to actually get scheduled for an ERCP unless you are already admitted to the hospital; eventually, we had to pull some strings through an acquaintance who knows a doctor there, blah, blah, blah. I was genuinely terrified she wouldn't make it, and even now, I'm not entirely sure she’s out of the woods. In our healthcare system, you're nothing more than a number or a statistic; they just process you routinely with such a sense of complacency that it drives you crazy, and you're just left to whatever happens...

It’s been about 50 days since my wife’s second ERCP at the Mayo Clinic and she’s actually doing much better... she’s managed to gain back about 10 pounds and is starting to play around with different foods again. She did have one episode of pain—it was intense, almost unbearable—but it only lasted about five minutes right after she ate a slice of orange! It came on so fast and vanished just as quickly that we didn't even have time to get to the ER... She’s currently taking olive oil mixed with honey and lemon twice a day because she really feels like it’s helping her recovery... At her follow-up, the surgeon mentioned there are still quite a few tiny stones left in there.
One thing that strikes me as odd, though... they actually gave her the stone removed from her gallbladder in a little container, and she still keeps it... But after that first ERCP where they supposedly "removed 4 stones," nobody showed us anything or even gave us a stone, and the same thing happened after the second one where they said they "removed 5"... although after the first procedure, they did claim "one more remained" but it just wasn't accessible. It almost feels like they’re always leaving themselves an alibi...