u/Frost_Bytes

Hey again everyone, I need to vent because only you all could understand what I'm going through. I posted a few days ago for advice, but now I just need to vent.

84% HIDA, chronic cholecystitis with possible (suspected) adhesions near duodenum AND liver after talking to my GI doctor and someone here in the forum.

I have a neurological disease that is undefined that has caused ongoing muscle weakness on the left side of my body. I am under no circumstances supposed to get paralytics in general anesthesia. Unfortunately, cholecystectomies require paralytics apparently! No surgeon will operate on me without giving me paralytics.

But what if the general anesthesia will kill me? What if my inflamed gallbladder will kill me? Are they just going to let me die because they are unwilling to try the surgery without paralytics? I am allowed to get TIVA anesthesia with propofol as the primary anesthetic, but my surgeon says that is not enough.

Now, I've done extensive research from around the world finding examples where people managed without paralytics. Most of them involved Regional anesthesia in the spine. Guess what? I'm not allowed to do that either. Why? Because I have tethered spinal cord and a chronic CSF leak. Any anesthetic that goes into my epidural space can pass through the leak and accumulate at concentrations 10 times higher than a human can handle. So that option is out.

I only found one example, I believe in bulgaria, where they injected some nerve blocks around his abdominal wall and successfully kept the muscles relaxed enough to remove his gallbladder. I am going to bring the study to my surgeon, but I highly doubt she's going to go for it.

Right now, it feels like everyone is Keen on just letting me deteriorate and die rather than help me and I am having some very dark thoughts. I am madly in love with my husband who keeps me going in so many ways, but at this point I feel I am just an immense burden with no way out. I am near giving up and I guess I just wanted to vent to the only other humans who understand what it's like.

Side note about how unfair this is: I used to consider myself lucky to be naturally thin with very few cravings and eat super healthy, just because I was raised that way. In December I ate richly due to the holiday season and my husband and I got really into wine and cheese. That was when this all went down :appendicits and cholecystitis simultaneously. Meaning, I stopped eating healthy for 1 entire month and this is what I get. (Appendicits was cured with IV antibiotics.)

Thanks for letting me get this out. I just want to say I love all of you because you help me feel less alone. Thanks for always posting and helping each other out.

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TLDR: moving to Europe in 6 weeks, doctor not recommending surgery because I have serious neurological condition that makes general anesthesia significantly more dangerous. HIDA 84%, mild chronic cholecystitis, mostly normal ultrasound. Doing capsule endoscopy and UA ultrasound this week inncase ulcers. Worst symptoms is serious upper abdominal pain that makes it hard to breathe while standing up. Question: How to survive for a year in Europe and what do other people do to manage without surgery?

Full post:

Hey everyone, I am still learning here so please forgive me if I say anything stupid. My gallbladder has been giving me some grief for a few years now, but it always looks normal on ultrasound until January, it thickened to 3mm and i had VERY positive Murphy's Sign for 2 months starting in December.

I also had appendicitis in January at the exact same time, so they seemed to think the bacteria causing that may be somehow be causing the cholecystitis. It's true that the IV antibiotic that was used to cure my appendicitis did also significantly help the cholecystitis.

Now here we are 3 months later, I finally got my HIDA scan, and it came back 84%. Since my doctors assumed I had biliary dyskinesia, they were all really excited about this number. However, I just started looking it up and now I'm realizing that anything this high can indicate overactive gallbladder. Why did no one tell me this?! What does this result even mean to you guys?

My GI doctor has me on TUDCA since february, which he said is like a slightly more mild version of UDCA or Ursodiol. Since I'm on enough drugs, I'm happy to try this more natural version first.

But here's the issue: my husband is originally from Europe and I'm moving there from California for an entire year, leaving on June 3rd. My symptoms are pretty bad, and I don't really see how it's safe to leave without dealing with this first. I still have ongoing upper right quadrant pain although it's much more mild than before. I also have just this constant pressure where it feels like I can't breathe standing up. When I try to breathe my whole upper abdomen hurts.

My GI doctor is having me do a capsule endoscopy in case I have ulcers since a lot of my symptoms are similar to a duodenum ulcers, and I just got another ultrasound 2 days ago so we can see how that goes, but with 6 weeks left, Is it wise to remove this thing or is my doctor right that I shouldn't do it yet? Has anyone else thought it was the gallbladder and found out it was really stomach ulcers and had symptoms improve? And more importantly, has anyone else here had similar issues as me and been able to manage them for a year abroad?