I am sorry all of this is happening to you! Please keep us updated and let me know things go next week, I will keep you in my prayers!

are they thinking PSC ?

What is PCS

Sharon, hopefully this is just a a small stone or cyst blocking a duct. You have had enough weird stuff going on with you.

PSC is primary sclerosing cholangitis, a liver disease that advances to cancer. It is associated with UC.

I had not heard of this ultrasound procedure (EUS), but it appears to be similar to ERCP which uses x-ray. When my liver enzymes were elevated they used MRCP for diagnosis. It was completely noninvasive.

https://www.pancan.org/facing-...opic-ultrasound-eus/

Jan

Thanks Jan, I saw the anesthesiologist yesterday and I am bit reassured.

He did not answer the question...if they find something while they are in there, are they going to do anything about it??? Or just take a picture of it?

I am not a huge fan of general anesthetic and even less of I.V.s so if they have to put me under, at least do the work while you are in there...hoping that they do or can clear the duct....

Jan, what did they do for you when your liver enzymes rose??? Did they find the cause and did they find a treatment?

Thanks and take care

Sharon

Gee, I can’t imagine what they could do Sharon. Also, I did not think they use general anesthesia for this, just sedation.

When I had my MRCP it ruled out bile duct enlargement, so PSC was not an issue. I was then diagnosed with non-alcoholic fatty liver disease. At that point I had to stop taking NSAIDs and was started on biologics for my enteropathic arthritis. My liver enzymes gradually came down to normal levels and that was that. So, I was lucky.

Hope you are lucky too and nothing serious is found!

Jan

Thanks Jan,

I had a specialized MRI done in Dec that showed that the liver was 50% larger than normal and that coupled with the enzymes that were 3xs what they should be they sent me to the hepatologist who did the 3D eco...Nothing other than a 16mm cyst showed and enlarged ducts that lead him to believe that something is in there...also there is an artifact that looks like an uninflated balloon...

Wish me luck...

Sharon

@skn69 posted:

Thanks Jan,

I had a specialized MRI done in Dec that showed that the liver was 50% larger than normal and that coupled with the enzymes that were 3xs what they should be they sent me to the hepatologist who did the 3D eco...Nothing other than a 16mm cyst showed and enlarged ducts that lead him to believe that something is in there...also there is an artifact that looks like an uninflated balloon...

Wish me luck...

Sharon

What is the plan now?

@Jan Dollar posted:

Sharon, hopefully this is just a a small stone or cyst blocking a duct. You have had enough weird stuff going on with you.

PSC is primary sclerosing cholangitis, a liver disease that advances to cancer. It is associated with UC.

I had not heard of this ultrasound procedure (EUS), but it appears to be similar to ERCP which uses x-ray. When my liver enzymes were elevated they used MRCP for diagnosis. It was completely noninvasive.

https://www.pancan.org/facing-...opic-ultrasound-eus/

Jan

PSC doesn't always turn into cancer., but it does increase chances of needing a liver transplant

Good point Poucho! Thanks for pointing that out. Yes, cancer is just a possibility, but progressive liver damage leading to failure is the primary concern.

Jan

So the test was last Friday and as always I overdid it within hours of getting home...I had no pain and no discomfort so of course the next day I cleaned my house, worked, ate etc...Sat night I felt like a freight train had hit me. Horrific night of pain, gas, discomfort, punching in my guts...you name it...at one point I thought that someone had kicked me in the liver and lungs with Jack-boots.

I was exhausted and worn out...it took 2 more days to recover. I should know better. Even when there is no pain, do not overdo it after a procedure.

The results were 100% non-conclusive.

Nothing to see. Nothing to note. Nothing to write home about. A big nothing.

My liver is still huge. My enzymes are still extremely elevated. No explanation for the moment.

Back to the hepatologist with the results.

After a week of eating just about anything that was not nailed down (frustration?) I am back on artichokes, asparagus, and their 'tea' (cooking water) as well as carrot juice...it helps a bit.

So the saga continues...

Hoping for a reason or a diagnosis at some point and that whatever is wrong can get fixed.

S

Sharon, No news is good news, right? Well, not so much when you are looking for answers. I have to ask. Didn’t they do a liver biopsy, or is that going to be the last resort after this procedure? Ages ago they would do a liver biospy practically on a whim. But, it is not risk free, even with using the fine needle to reduce the risk of hemorrhage. In the end though, sometimes it is the only real way to determine what is causing the inflammation. Of course, even with the biopsy you can wind up with the all too common “ideopathic” label!

I am sure you are getting weary of being a “special case” or medical oddity. Nothing ever seems simple for you. Lucky for you, you seem to have an overabundance of resilience and optimism. I just hope they don’t take the long way around to get this sorted out!

Jan

Thank you Jan,

You are absolutely right, my 'special' status or condition as medical abnormally is rather trying. I feel like an idiot when I have to recite my medical history to a new doctor.

I will keep up the good fight and go back to my specialist for the 'next step'...yes, I also thought that while they were in there that they should have done a liver biopsy but there was no mention of it in the report...

Maybe I should just lay down arms and accept that this thing is part of me...and I have no way of controlling or fixing it.

For now, my liver has not suddenly decided to behave itself so I will need to continue.

Sharon