Giant Liver Hemangiomas 12+cm Surgery or Not?

[Cathie777]

I was diagnoised (FINALLY!!!) with a giant liver hemangioma after 5yrs of going to the doctor. My GI doctor said to just continue monitoring it and it continued to grow just in the first 6 months from size of baseball to size of a melon. He said it was more dangerous to remove it, and to just leave it in. I looked at him kind of puzzled and asked, "Am I then just to live with these symptoms?" So he then said well maybe we should send you to a specialist who said the exact opposite. That it needs to be surgerically removed as obviously its growing and the longer I wait the more complicated the surgery will be. I could go into heart failure, and if I just let it go I might eventually need a liver transplant. Surgery- Chevron Incision 24"-30" straight down entire stomach and then all the way off to my right hip. Very invasive (and scary). Was told USC could do it less invasively.
Trying to find info from people who've had this surgery and what it was like and if it really did help?
Also interested in comparing others symptoms.
But I am confused, still being told different things.....that I should have the surgery, and that I should not, that its more dangerous. So when should someone have surgery for these giant hemangiomas???



This discussion is related to liver hemangiomas.

[ginapoet]

Hello. My sister has a giant liver hemangioma 14 cm that the doctor wants to do surgery on; he said she might only retain 30 percent of her liver, is your experience similar?

Thank you,
worried sister, Gina

[cozthegrov]

Mine was over 20cmx18cmx14cm and it was causing heartburn and compressing my pancreas and causing daily pain with sitting. After a final MRI they basically said there's no more room in my abdomen.  My docs said the same thing that the pain is not FROM the hemangioma itself, but caused by how my other systems were changing because of its growth.

[WendyMB]

I've been reading a lot of the posts and was just wondering, for those of you who had surgery for hemangiomas, how large did your hemangioma get for your doctor say you should have surgery?  Also, in what ways do you feel better?  I guess, I'm just not really sure if my symptoms are related to the hemangioma or not.  I've read weight loss for some, but I've had trouble losing weight even with working out and eating healthier.  I have heart burn and feel full quicker, and am extremely sleepy after  meal but that's really about it.  Last year after severe pain in my right side, they found a 9cmx9cmx8cm hemangioma but my doctor said it wasn't really an issue and it's a surgery they don't like to do if they don't have to.  He thought my pain had nothing to do with the hemangioma, and I haven't had it since.  He said they would monitor me so I had an MRI last week.  I meet with him again next week so I'm just wondering, how big does this thing have to get before he'll remove it and can I expect to continue gaining more weight?  

[HippieChic50]

Hi,

I am new to this forum.  I was told 6 years ago that I have multiple hemangiomas in my liver. After a TON of doctors I found one at Johns Hopkins who I felt was knowledgeable and since that time has been monitoring the "Goblins" as Iike to call them.  However, about 2 years ago they started growing and causing a lot more pain.    Dr at Hopkins said let's just continue to monitor them.  Largest one was about 6 c.m.  Pain seemed to just come and go.  Then last year, my gallbladder was removed.  But still having pain and now it is more frequent.  Went to see another doctor for another opinion.  He says they have to come out.  The largest one is almost 8 cm.  the other one is about the size of a golf ball and there are still others throughout the liver that are smaller.   The surgery has to be open surgery with that huge nasty scar since I have so many and the one is now 8 cm.   SO,  I am facing surgery in a couple of weeks and I am SCARED TO DEATH.

I sure would like to hear anyone's story about their hemangiomas and if surgery made a difference for them.

Thanks.....

[Cathie777]

wow, awesome to hear from someone else whos been thru this. So they were not able to resect laproscopically??
What will they do with the one in the right lobe that they left?
What were your symptoms prior to surgery...and for how long?

Thanks :)
Glad you are feeling better!

[cozthegrov]

I too have stalked this forum for a little over 18 months now.  I had a giant hemangioma, size of a basketball, that consumed my left lobe.   I spent time with the Drs at USC and UCLA and it was clear to me that the team at UCLA had more experience with hemangiomas.  Their approaches were identical, in that they were going to preserve as much healthy liver tissue as possible but I would lose a lot of liver tissue because, for me, the hemangioma was entirely intertwined with the liver therefore they ended up resecting about 60% of my liver through the chevron type incision with a additional vertical incision from the bottom of my sternum to the apex of the chevron.  62 staples.  I am so happy to have that thing out of me...and I still have a 14cm one on the right lobe that they couldn't remove.  The recovery was not bad, but I think for a number of reasons:
- I'm in my late 30s (fairly young, and no other health issues)
- I asked my doc what I should do to prepare for the surgery and they said the more fit you are the better recovery will be so I trained hard doing Crossfit for the 6 weeks leading up the surgery to be as fit as possible to make the recovery as quick and easy as possible and it worked.
- I followed the dr's orders precisely in terms of activity, lifting, wound care, pain management etc.  

I am now 12 months post-op and have never been in better shape.  I still have a nice big scar in varying shades of pink but I'm not battling the pain after every meal or just after sitting like I was before the surgery.  

I'm happy to try and answer any questions here, or privately if someone prefers.  Just let me know here and we can arrange to connect in private.