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.

[Cathie777]

My doctor was Dr. Carlos Covera in San Francisco, CA

[Cathie777]

Awesome. Sorry for replying almost a year later!? lol. How are you doing now?

[Cathie777]

Feel free to email me directly if you have any questions.As I know I was full of them going through this!!  TheVintageLife At GeeMail
Mine only got worse, slowly over time. I wish I had my surgery to remove mine before it got to the point I was at. My Doctors "monitored" mine for 2yrs...while I got slowly, but progressively worse. They would have continued to do so if I didnt say something. My doctor couldnt say for sure the surgery would cure my symptoms/problems. But it did by about 90%.
It makes me sad and frustrated I lived how I did for so long. I had mine at least 6yrs before I was diagnoised, and then monitored another 2 1/2yrs before surgery. My quality of life was horrible. I wish I could post my night before surgery stomach pix, and my 4 weeks after surgery pixs. The difference is really amazing.
Good luck with whatever you decide!

[Mymyi]

How did the surgery go? How painful was it?

[Cathie777]

You can email me directly at ***@**** for any specific questions. If this lets my email show up in the post.

Yes, I had the surgery to have mine removed and it was a very difficult surgery and recovery. That being said, I would do it again. I still have 2 remaining in my liver (as they couldnt remove my entire liver of course). They are small but have continued to grown. I monitor every year with MRI.

[CherylB111]

I have been reading your comments for a couple of years now off and on. I have a 9.4 cm hemangioma on my liver with another smaller one which seems to be almost on top of or underneath the other one.  They have been growing for years, about 3 cm over the last few.  My doctor is a liver specialist and he is the best in the area and in all of California. He is watching it, but doesn't think I should have surgery.  It doesn't hurt, but I can feel it when I wear a jacket with a tight belt in the area. I try not to wear anything that will be tight in that area. I have an ultrasound every year and I have had an MRI. Now the dr. wants to check me in 6 months. I don't want to have surgery and he doesn't think I need it. Luckilly I don't have trouble with my gallbladder. I do have the nausea symptom sometimes and sometimes I don't feel like eating, but for the most part I feel good. I think I will only have surgery if my dr. insists.  Thank you for listening.

[Karounio]

Hi Janice. I am Karen who became Hep C positive after a transfusion in '76', asymptomatic until 3 years ago, when I began feeling generally 'unwell' lethargic with 53 lb weight loss for lack of appetite. Well, I began begging new doctors in a new town, (we moved), immediatley, complaining of weight loss, lack of appetite as I feel full 24 hours a day, with severe bloat and digestion taking a complete 360!  NO ONE LISTENED. I was accuses of all from "womanly stress", to "depression" to purposely not eating - only because the so-called country GP's did not understand and had no idea of what liver disease can do or includes. In past 2 years I began having episodes of 'syncope' every darn time I eat.  I simply black out moments after, very often awakening minutes to an hour later, depending how tired I was to begin with, WITH FACE IN MY PLATE!  Face and hair covered with my dinner. I began to think I was nuts. No other recourse I began driving 4 hours away to Toronto where I knew and trusted my former doctors and with conficence in hospitals there. Long story short as possible, after months of tests, of course the final one, found I have several hemangiomas (not only one), the largest 10mm with many 5mm. That is not all. I have dilated common bile duct of 11mm with a dysfuntion of the sphincter of odie.  HAD THE LISTENED, I could have begun whatever treatment. Now, my liver is enlarged, for 3 years I have not been able to eat barely at all, so have been drinking tons of instanct breakfasts, and I have spleen enlargment upon eating too much with a raft of symptoms.  I finally, am being referred to my gastroenterologist.  I could have very well had heart failure at any time with these synopal episodes. It turns out two of my so-called GP's here, who I faxed an ultra sound result to way back in July 2012; never read it. The test revealed ALL by bile ducts were dilated and liver slightly enlarged. THEY NEVER TOLD ME NOR MY SPECIALIST!  Well, live and learn. At least I know now and hopefully they will do something so I can eat properly and without pain, which has also begun in recent days.  Can't always trust our GP's.  Sorry to say.  My best to you and thanks for listening.