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.

[luckyfriend]

Dear Cathie,
Unlucky that my friend was found a hemangiosmas in the liver of  5cm  when she was pregnant in 2009, in the past 9 years, it grown to  10.2  cm.
According to some doctor, she should wait;
according to some doctor, she should do the surgery asap to avoid organ failer and liver transplant.
We really need your help, so that we will decide at the right time, not to miss the best chance to the correct treatment.
thank you very much
at the same time,
I emailed you,from China.

[Sschai]

My husband was just diagnosed with a giant hemangioma, 20x22x21cm. We are in Denver and they said they won't resect bc it is too dangerous. They want to try a transarterial embolization to shrink it if the interventional radiologist will do it. If not, he will need a transplant. He's 36 and healthy. Where are the best doctors to treat this? I just want to make sure we are doing the right thing. Thanks!

[JRA2016]

I had my large hemangioma removed on June 30th, 2016. I was first diagnosed 4 years ago and was in cardiac arrest. I was sent to a surgeon in Austin, Tx at that time. I had 100% faith a trust in him. I am 9 weeks post surgery and doing very well.

[tjsummertime]

Hello JRA2016, can you please provide an update on your current status? My Giant Hemangioma is so large now that it can't be ignored and I'm having trouble locating people with same issues as myself.  We are few and far between.

[bobbyveee]

Hi , My daughter Claire , who is English and 43yo was diagnosed 4 yrs ago with a giant hermangioma on her liver and I mean GIANT , she has 22 of them , her liver weighs over 27 lbs.  A leading British liver surgeon remover 60% of the growth about 30 months ago, its since regrown even larger and is causing great pain as it presses against other vital organs. She has been told by the same surgeon he cannot remove any more and will not operate unless she has a bleed, by then she will be dead. She has always had a weight problem , but her thyroid is OK .  Ive read of great advances in the US using certain drugs to shrink the growth by upto 50% . Have any of you tried this or know anything else other than the surgical way .
Desperate Dad

[Jasun]

You had Chevron incision? i do not see much of a scar

[Cathie777]

Just a FYI to anyone interested. I just posted the photos under my profile of what my stomach looked like the night before surgery to remove my giant liver hemangioma....and the after...though the pic was about 45 days after, this is pretty much what my stomach did look like right after surgery

[Mymyi]

How big was your incision? How bad was your pain? How long were you out from work?

[Cathie777]

This is a follow up to my original post from 5yrs ago!! (Cant believe Im still dealing with this)...AnywayI thought it could be of help to others out there. During the time I had my undiagnoised, and when it was diagnoised....liver hemangioma I had thyroid problems but the T4 medication seemed to make me sicker. I felt a lot better after liver resection surgery but still never back to fully normal and my weight dispite dieting, daily gym/exercising
, and numerous different prescription diet medications....I was not able to go below 165lbs (my normal weight was always 130lbs and height o my liver hemangomia i was 214lbs).
I continued to have symptoms of hypothyroidism and just reently went to a endocrinologist who thinks I might have a very rare condition called consumptive hypothyroidism, which I guess is usually only found in infants.I dont know that much about it.
But from the research and reading Ive done so far I am solidly convinced there most definitly is a link between my giant liver hemangomia and my thyroid problems and symptoms. In the past T4 medications made me feel worse though. Dr. is ordering a reverse T3 on me and some other things....Im make in a confusing mess trying to figure all of this out. One Dr. started me on T3 medication only....and it made me feel significantly better...but my other Dr wants me OFF of it! (I have to confess I also took my friends T4 med with it for a couple of days and felt even better though my Dr said thats impossible as it takes at least a week to notice any changes...but i think they dont realize then how crappy i feel that I notice any good change). That Dr doesnt want me to take any meds, but gives me no solution for all of my symptoms. So I have an appointment next week for a 3rd opinion....
But anyone with a giant liver hemangioma....check your thyroid...mine was in "normal" ranges for awhile even with symptoms....and then finally went out of "normal" range....convinced the two are linked

[hurricanedani]

I found out less than a week ago that I had a liver hemangioma that is almost 10cm. I went to a gastroenterologist who couldn't help, but referred me to a liver transplant surgeon. I called them today to schedule an appointment and they sound like they know what they are doing. The medical assistant was telling me that they do a few of these a week. Next Wednesday, the doctors will be reviewing my CT/MRI do decide what route (surgery or not) is best for me.
I discovered my hemangiomas because I was having trouble laying on my sides and back. I went to my PCP and he suggest that I get a CT. My diaphragm hurts when I breathe in deeply, sneeze, cough and hiccup. I know I'm rambling, but this thing is nerve wrecking. I had the Gastroenterologist take blood just to be sure that they are benign.

Cathie777- was it easy to find a doctor that would do them laproscopically? I really don't want a chevron cut.

[Dillly]

Dr Arthur Fusco is the one I will recommend to whoever is from Las Vegas , Nevada.... He did my surgery on February . My hemangioma was about 13mm.  He is amazing...Good luck 2 you all...

[JJJJ12]

I had my hemangioma remove June of last year.  I recently started having the same symptoms.  Does anyone know if they can regrow?

[tamiesue2]

I was just recently diagnosed with multiple hepatic hemangiomas, the largest being 16.8cm on the right lobe of my liver. I do have one inside the left lobe. The tumor is centrally located and will require the removal of most of my liver. I live in Central Illinois and my problem seems to be finding a surgeon skilled in this type of surgery. Any recommendations from the group?

Tamie

[BeeShell]

Thank you for writing and responding to these posts. You will never know how much it means to me to read someone else having the same experiences as myself.

[BeeShell]

I am good thanks. This is the first time I have found ANYONE who has what I have and I will take my chances that the people who were talking two months ago as I was first showing symptoms might just see this. If you don't like the long thread, don't read it. I don't care for your "flavor of issue".

[fntn]

Please start a new thread, yours is likely to get lost in this older, very large one, and since transplant is an option in your case, different flavor ofissue of importance as well.

[BeeShell]

I am so relieved to find all of you. I was diagnosed over a month ago with 1.5, 7 & 11.5 cm hemangiomas in my liver. I am in pain ALL the time. A great feeling of pushing in my abdomen as well as side & back pains.They are growing inside instead of on my liver and I was told I have the options of surgery to remove 2/3 of my liver if that isn't possible transplant is my only option. I'm so scared. Should I get a second opinion? Where do I go for that? I'm in Indianapolis & told the liver Drs here are among the best. Any advice and encouragement is welcome!

[Dillly]

Hi Everybody
I do have hemangiomas on my liver. One is 12 on 8 , 7 on 8 and two small ones 1.5 on 1.5 and 1.1 on 1.1 . My doctor told me that at that point i need to have surgery  which cannot be done here ( Las Vegas) because  no one is qualify to do so and It needs to be done at UCLA . I'm freaking out...Seriously I am sooo scare...Thank you to all of you taking the time 2 share your experience. It's a huge help understanding the whole process..Please share if you have any advice.

[krys7963]

Wow, I was recently diagnosed with a giant hemangioma as well. They sent me to a liver surgeon who wants to perform a left hepatectomy.
Any ideas why it is more common on the right lobe than the left?
Are left lobe hemangiomas any more dangerous than right lobe ones??

[Cathie777]

Hi, Yes it was the same for me. Your liver grows back, the only organ that does so. It was a difficult surgery for me to get through, but Im glad it was done. I still have to monitor the little hemangiomas there were in the section of liver that wasn't removed during my surgery. They are small and continue to grow...very slowly thank god.
How is he going to perform the surgery? Laproscopically or through large Chevron Incision? Is this a liver specialist, that specializes in this kind of surgery?

[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? The doctor said that it is an extremely dangerous surgery more dangerous than open heart surgery, and that liver failure after surgery would cause death. I'm scared. Is there anything you can tell information wise to help me with my concerns?

Thank you,
worried sister, Gina

[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.