Focal Nodular Surgery - anyone have this?

It's a huge one. 3 inches. They are worried it would rupture if I ever experienced trauma (car accident, etc). I can also feel it and it causes pain. I just had my non functioning gallbladder removed last month. It's possible it was pressing on it and caused it to fail. Thankfully I don't need liver resectioning as it actually hangs off like a berry, a baseball size berry. I have to have it embolized first. It sounds like an easy procedure and having had laparoscopic surgery last month I know somewhat what I'm in for. I guess I'm just nervous as it's my liver.

Sorry for the errors in my previous post that makes some of it unreadable LOL. I was using the microphone on my phone and I forgot to check to see if it misinterpreted my words before I posted.

Don't do surgery just yet!! First mine was confirmed fnh through biopsy. It was a tiny 18mm needle (like a long needle but the size they use to pierce your ears) and they used imaging to guide the needle. I had to stay in the hospital I think 4 hours after to make sure there wasn't any internal bleeding. Took the bandage off and could barely see it, that's how small the biopsy was! Okay so FNH confirmed and surgeon wanted to cut out! DO NOT DO THIS! Your liver can easily bleed out, it's dangerous, and you'll be in the hospital for at least a week due to the high risk factor of bleeding and infection. Anyways, my surgeon wanted me to get it embolized before surgery to minimize risk of bleeding. This is where they basically thread this tiny instrument up your artery from your groin area to your liver (image scan guided) and release a material that blocks the artery to the tumor. Search Heptic Embolization. I did a lot of research and found that they actually just use embolization as a way of treatment WITHOUT surgery. I had three arteries going into my tumor! I had another MRI done after 11 weeks and it shrunk 80%! This is a perfectly normal size as they usually do not even operate on FNH unless you are symptomatic and mine was hurting as it was the size of a baseball. So basically your surgeon should require (if competent) embolization before surgery, but embolization alone can be a means of reduction. There are serious risks with surgery. Hospitalized for a week and high risk of bleeding out and infection. The embolization had drawbacks too. Basically your starving the tumor to death and when they are large tumors that is a lot of toxins! Wow! I felt a stabbing pain, was vomiting, and running a fever for nearly a week. I just kept taking my pain pills, drank liver detox tea, and took epsom salt baths to help flush toxins. PLEASE get a biopsy, it's such a small procedure! If it's FNH research heptic embolization and also liver resection (surgery). The embolization was horrible but risk was low and recovery faster, and if you have surgery you'll have embolization anyways unless your doctor wants you to bleed out! Hope I'm making sense, so tired but passionate against surgery unless absolutely needed!

Also my surgeon made surgery sound like such a simple procedure! After reading about it I went and got 2 more opinions and the other two doctors agreed embolization was all that was needed and said the surgery was so dangerous that they would have to send me to a special surgeon two hours away and the surgeon scheduled for my surgery did not have the experience with this surgery! Only one hospital in the state could do it (and we have many).

Thanks for the info!  The problem with mine is that it is so atypical of everything that they can't tell if it truly is FNH or an adenoma.  They are leaning more towards an adenoma.  And an adenoma has a high risk of rupturing, especially larger than 5 cm, which mine is.  So they want to take it out before I get into a car accident or something and have abdominal bleeding which the ER wont know why I'm bleeding and it could cause a big problem (also, they are not 100% sure that it is not malignant, as again, it is atypical of everything).  Also, if you dont remove an adenoma and you try to shrink it, then you apparently have a chance of it becoming malignant later vs removing it and having no chance of that.  So I dont know.  Regarding my surgeon, I live just outside of Atlanta, Georgia and there is a liver transplant center in Atlanta that my surgeon works out of.  He is a liver specialist and does these types of surgeries often; he says he is only going to take out a 1/2 inch section of the liver where the stem is attached and is going to do it laparoscopically so I should only be in the hospital one to two days at most.  I dont really know what to think, as I did read somewhere that a biopsy is supposedly not a good idea for an adenoma as it can cause bleeding but again we dont really know what it is yet.  Also, I haven't read about embolization; I will have to read about that.  Thanks again for the info!

If it's Adenoma then you probably want surgery. I'm glad you have a good surgeon who knows what he's doing and specializes in liver. I had a CT scan, MRI, and biopsy to confirm FNH. There is risk with anything you do whether biopsy or surgery. Do some research and trust your gut what is best for you.

I had a CT scan for something else which found the mass, then an ultrasound which couldn't determine what it was, then an MRI which led to the either or scenario. I guess he didn't want to do a biopsy in case it really was an adenoma, so he just went for surgery. I am extremely lucky to have a liver transplant center nearby. I think from all I have read that if I did not have a specialist like him to do it, I would definitely not have the surgery due to the risk. Thank you so much for sharing your info with me.

Just wanted to update this thread in case someone came across it and needed the info. I had the laparoscopic surgery and it was actually a lot easier than expected. My tumor was pedunculated, which means it was hanging off of the liver. So they only had to take a half inch of the liver off in order to remove it. It was in a good spot apparently, so they also ended up only having to make 2 small incisions instead of 3, which made 3 total when you count the larger one that they removed the tumor through. I stayed One Night in the hospital, and was released midday the next day. I only had pain for the first few days, and was able to get off of the Oxycodone after that. The gas that they used during the surgery was annoying when it was trying to come out, though. It would make you burp and next pass gas, then as it worked its way up and out it would sometimes restrict you a little in your chest cavity and would sometimes even cause a weird shoulder pain. The rest of the first week, I took extra strength Tylenol per my doctor for the inflammation and any possible remaining pain. The second week I only took it when I thought I might have overdone it a little and anticipated some inflammation. But really, it was fine after the first week. Anyway, it actually ended up that the tumor was fnh rather than adenoma, but I don't regret having the surgery because they could not tell anything from the tests due to where it was and so they weren't even sure if it was non-cancerous. At least this way now we know it's not cancer, and there isn't something in my body that I'm constantly worried will burst or turn cancerous. I had a great liver specialist and so the whole experience was a good one considering.

So glad to hear it went well! I'm glad you had a great liver surgeon!

Sorry, meant to reply to this comment! Thank you for posting an update! I have a large FNH (8x10cm) that was found during an MRI looking for the source of abdominal pain I've had for a year and a half. I know Doctors are reluctant to remove FNHs, but they've ruled out any other possible cause of my abdominal pain through extensive testing, and I can't imagine this huge mass isn't the the cause. Just met with a surgeon Monday and he said he doesn't do laparoscopic surgery, so the recovery would be tremendous with an open surgery - in addition to greater risk of infection. Plus, I have a young toddler I need to look after, so laparoscopy sounds much better! I'm wondering if you had any pain/symptoms before from the FNH and if they've subsided since the surgery? I have daily abdominal pain, so I'm really motivated to find a solution, though not keen on open surgery.

I did not have any abdominal pain or other symptoms either before or after. I'm guessing it all depends on where it's at in your body.

Forgot to say in my post that if you can do it laparoscopically, definitely do. From what I hear the open is much much more difficult. I would try to find a surgeon/specialist who does laparoscopic.

You can have open surgery to remove, or you can have it embolized. Mine was large and felt like a baseball stuck in my side. With embolization they thread a line up your artery and block the arteries supplying blood causing the tumor to die off. I had 3 arteries feeding mine. A Radiologist would preform this procedure. BUT, just a warning, since most doctors don’t normally operate on FNH they don’t know the after affects. I was terribly sick for a month from all the toxins being released into my body as it died. Ran a fever for weeks even though I took detox baths and drank detox tea and everything to help rid toxins. In the end, mine shrank 75% and pain free. It definitely was better than open surgery, but realize the toxins of it dying will make you sick if you just do embolization. Get a few opinions from different doctors.