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.

[kablue13]

I also found out I have a giant hemangioma on my liver and we have been monitoring it for almost 2 years.  It has grown a lot over the last 6 months and they want to do something about it.  It was first talked about doing what is called a radiofrequency ablation to remove it.  It would be to difficult because of it size and I would have to have 3-4 seperate procedures to do this, so now we have moved onto surgery to remove it.  Mine is measuring almost 10cm.  They are going to try and remove it laproscopically or if during surgery they need to completely open up they will.  I was told it would be a week in the hospital with 4 weeks off from work.  It is very scary and I am uncertain of what to expect.  What did you end up doing in the end.  Have you had surgery?  Is there anyone else out there that has had removal of a liver hemangioma?

[elimbuf]

I was diagnosed with a 9 cm hemangioma while pregnant. I went for another ultrasound 6 weeks after birth, and it is now 13 cm. They want me to do an MRI with contrast (I had one without contrast while pregnant), but then I cannot nurse my 8 week old for 48 hours. He is sending me to a liver doctor to discuss this all with, but he seemed to think that if it is still growing, we need to do something.
It is also causing pain on my right side, right under the ribcage.
I feel way to overwhelmed to even deal with this right now. Will post again after I meet with the hepatic specialist, and let you know what he says.

[Qaqo]

Hi is a 4cm liver hemangioma dangerous

[Qaqo]

Hi . Regards to all ! My father has recently diagnosised with 2 hemangiomas of liver measuring 4*4.2 and 1*1.5cm and asymptomatic in india and his doctor said u dont need treatment and can go home and we came to afghanistan ! Although we trust on his doctor but we are too worried and dont know what to do ? Now we dont have any trustable and exprienced doctors in afghanistan and we dont know if we have to go to india again !? And liver hemangioma is new thing 4 us ! Is it life threating  please reply me at . . RAHMAT.***@**** . .Tnx . . . Ahmadiar ghaznawi

[Qaqo]

Rahmat.***@****

[mayito79]

HI my name is Marjorie and i have a hemangioma size 8cm by 4cm in octuber they found this hemangioma but this year around march i went back to the imr and thay said is bigger but i have be so much paid for the past three months so i deside to do surgery an i'm to have surgery this friday 7 2010 please pray for me i'm so scarry..but i can put up with this pain my doctor is from yale new haven hospital and his name is Rom Salem with 28 years or experien...i hope everything come out ok...i would let you guys know how was the surgery on monday of next week

[Qaqo]

Hi dear mayito 79 plz tell in which country are you and plz say us about your result and how surgery do u do . . .thanks

[Cathie777]

I just got home from another Dr. appt. I just had a HIDA scan done of my gallbladder which showed it was functioning normal. But he said the pain I experienced during the second part, I forget what the second injection was toward the end?! Anyway I had severe pain, cold sweats and nasea with that. Which he said was not normal.

I was hoping the problems Ive been having were actually from my gallbladder and not my liver hemangioma. As the surgery is so much easier for a gallbladder.

Anyway, no I have not had any surgerys yet. I still feel awful and no definite answers.
I go in tomorrow for another MRI of my liver and a mass they found. Also more blood work for liver function as last time my levels were high.

So anyone who HAS had the surgery please let me know how it went and if you felt better for having the surgery. If it really made a difference in how you felt, etc.

[joefoster]

have you found anyone who has had a hemangioma removed successfully yet? Mine is the size of a softball in my sacrum and HURTS!!!

[riat]

I have had a giant liver hemangioma removed going on 3 years ago. It was done at University of Chicago hospital. I know that it was measuring in the 20 - 27cm's. After surgery I was told that it was 9 pounds (yes I looked pregnant). It was a painful recovery but so worth it!

[mayito79]

Riat my hemangioma is size 8 by 4  but i have burning pain  on and off , how was your pain and how long was the surgery my doctor tell me that i have to stay home for a month and take a easy for another month.....qapo a live in United States New Haven  Ct

[Qaqo]

Hi . Plz if be possible kindly explain (non-enhancing)liver hemangioma

[Qaqo]

Also plz tell me about focal non enhancing liver hemangioma . tnx

[Qaqo]

Hi . I pray 4 u mayito and i dont know how r u now bcz u had said that ur surgery is on 7 so i wish u tell abt ur health

[Islandgirl2011]

I have just been told I have several hemangioma's in my liver.  The thing is Kaiser permanente know about this and told me nothing at all.  I have several lesions and my thyroid is shot this started at the age of 40 and Kaiser never told me a thing about it.
Has anyone ever had this problem with Kaiser Permanante with holding proper treatment?  I am so upset my hemangiomas are measuring 35mm, x 3 lesions and other small ones.  Does anyone know if you can live with this? Please does anyone have experience with very large hemangiomas?
Thanks to all, Islandgirl

[janice233]

Hello Marjorie
I hope your surgery was a great success.  I have not seen any posts from you since May 2010 ones.  About 2 weeks ago I saw Dr Lagarde from Yale while she was in MS.  Upon her return to CT she reviewed my CTs, MRI and Nuclear scan tests with Dr Salem at Yale.  Their recommendation is for removal.  2 years ago Tulane Liver Research Center said it was too risky for surgery.  Tulane said hormone levels can feed the hemangioma - Yale said unlikely.

My "stats" - 18cm x 12.5cm x 8.5cm hemangioma on left liver lobe. Unchanged in size over past 2 1/2 years.  It is largely outside the liver which is their concern for vunerability in rupturing.  Symptoms: syncope(blackouts) when seated or bent over, shortness of breath while walking & talking, bloating, burping for hours after eating, fatigue, balloon-like pressure on stomach, ribs, etc under bra line, weight gain of 40lbs, etc.  

My hopes were to avoid surgery.  Did you try anything to reduce it first?  

[Lillkev]

I have 2 large  hemangioma's one is about the size of a tennis ball the other is the size of a golf ball, I was told I couldn't have a biopsy done cause I would bleed to death so there going to moniter it. Recently my breathing has got realy bad and I still have pains in my right side and I sleep to much as I'm always tierd. I've also been told that I can never drink alcohol again or I will develop cirrohsis. I'm a recovering alcoholic and have been sober for nearly 5 months. I don't know what to do next I'm worried that my hemangioma's are still growing

[janice233]

With the reading i've done, hemangiomas are common on the liver esp with women.  It can be scary anyway, since doctors don't seem to give you much info.  Docs seem to discount many of the symptoms crediting them to other "more logical" causes, but i do believe many of the symptoms are by-products of the hemangioma displacing other organs.   Only you know what you are feeling., but don't credit all symptoms to the hemangioma, try to consider other causes as well and address them.  If it's too bothersome to live with, removal may be the best choice.  remember it's most likely benign, so immediate action is not mandatory and most people never have them removed.  As for the alcohol,  guess it's best to avoid that anyway. :-)    

[Cathie777]

m the original poster of this thread. Its been over a year since my first post, and Ive had my melon size hemangioma for 2yrs now, back & forth with doctors dismissing my symptoms which are the same as yours and more.

I also wanted to avoid surgery, look at other options.  I explored every possible other reason for my symptoms ...but no other cause was ever found. Now I just wish Id had the surgery 2yrs ago. As my symptoms havent gone away and have actually progressively gotten worse.

I just got back from an appt in San Francisco with another liver surgeon /specialist and I am going to have the surgery to remove it. I cant wait! I wish I could go tomorrow. Unfortunately I have to get some complications from another surgery I just had resolved first...and my insurance authorization...but as soon as I can, Im there.

The SF liver surgeon was the best Ive encountered over the 4 Ive been to. He can do the surgery less invasively, clamping the blood supply to the hemangioma, draining the blood from it like a big sponge, therefor reducing its size and then removing it thru a smaller incision. Ill be in SF 5-7 days and recovery of about 3/4 weeks total...less if I was already in better health which Im not at this point.

I will try and post again after I have surgery...I wish someone would had the surgery would post in detail what it was like for them and how they felt after...if their symptoms went away , what recovery was like and how it took..

[neens79]

I had surgery to resect the right lobe of my liver due to a 7cm hemangioma.  It began to press on my diaphragm and hurt to breath. I also had referred pain to the shoulder.   Otherwise, they would have left it alone.  My surgery took 3hrs and I had no complications.  I was told it was supposed to take 6hrs.  When I came out, I had a central line in my neck, an NG tube through my nose to drain the contents of my stomach, and a medicine ball with little spindles that administered pain med directly to the incision site (this was the best thing ever!)  I was very nauseated for the first couple of days due to anesthesia, but not a ton of pain.  My incision ran from my sternum down to the middle of my stomach and hooked around.  They glued it shut so I had no stitches or staples.  I was in the hospital for 6 days and was finally able to go home.  I still had to battle nausea for a couple of more days.  I was 29 when I had the surgery and pretty fit...but it knocked my on my ***.  I was soo tired.  I returned half days to work 10 weeks after surgery to build up my stamina.  I returned full time after 12...which actually was probably too soon....I regret not taking more time to heal.  I still have some nerve damage on my incision...I have no feeling in one little spot.  I also have some nerve damage that refers to my shoulder...but nothing like the pain I had prior to surgery.  Three years after the resection, I became pregnant and had a baby.  There were no complications and my liver functions were fine.  However, I still have a hemangioma on my remaining left lobe and it has grown with the pregnancy..it went from 2.5 to 4.5cm.  So now I have to follow it.  Other than that, the pregnancy was totally worth it.  

Good luck to you all!

[Cathie777]

Hi Janice

I had the same symptoms as you, as well as additional ones.
I tried for 2yrs to avoid surgery, look for other causes, etc. I finally went in to surgery this last month, about 2 1/2 weeks ago. Still recooperating, and on pain medication so its a bit too soon to notice any changes/differences. But If you have any questions feel free to email me.
I was able to do the surgery laproscopically. Which is MUCH less invasive than the standard Chevron Incision/traditional surgery to remove them.


<>

[ItisNOTheartburn]

Hi, I just came back from an ultrasound for severe RUQ pain and the ultrasound tech was like, OH!  no one ever told you that you have a hepatic hemangioma????  They have known for almost 3 years and I have been having extreme pain for almost two have been to specialist after specialist and NO ONE bothered to tell me!  Unbelievable.  

[J5555]

How's your recover? would you recommend your doctor?

[queenbee44346]

please let me know what type of systom everyone having they said they missed mine two years ago now everything moving fast i have had 3 surgery so far just 46 2 csection and uterus removed i pray but still scaredplease somone reply queenbee

[korbensgram]

Did you ever get a reply from Cathie777 about the Dr.?