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???
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?
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.
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
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
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.
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!
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
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
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?
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
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. :-)
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..
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.
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.
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.
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
My surgeon was Dr. Carlos Corvera. Yes, I would recommend him.
There were some issues I didnt like, and wasnt thrilled with the Hospital I was at (Since my surgery I believe he is at a different hospital). But he was a good surgeon.
It was a difficult surgery and recovery. But I am glad I had it done. If you have an specific questions, or would like a more in depth/detailed account feel free to email me.
Which surgery are you having to remove it? Laproscopic or Chevron Incision? Do you have any specific questions as there is so many aspects of my surgery experience I could tell you about.
It was the most difficult surgery Ive ever had, but worth it. I am glad I had it done...and glad its in my past now. My surgery was June 2011. I was in the hospital for 6 days after. I had 4 IV's to my surprise and horror when I came out of surgery(as Im a needle phobe). When I awoke from surgery I was in a lot of pain.
The first thing /change I remember noticing was, even though I hadnt brushed my teeth in a couple of days since the surgery, the bad taste in my mouth Id had for years was gone.
It was a long, slow but steady recovery. It took me over a year before I could run, move in a fast motion where my stomach didnt feel completely weird and awful. A completely indescribable feeling.
My stomach size reduced by probably at least 60% within the first month and a half after surgery. If you send me your email, I can email you the photos. It was a big, and pretty shocking difference.
I went into surgery as my last resort, and with my doctor telling me he couldnt promise the surgery would cure all of my symptoms. Though he said it would be a good chance it would fix some of then. I no longer have any of the crazy symptoms I had before. I can easily bend over, I could do exercise again, I no longer had heartburn, or the pain Id had previous to surgery.
One of my biggest complaints and problems was I was given oxycodone and oxycotin. I never felt "high" on it, it just simply controlled my pain. Ive had numerous other surgeries and pain medications and never had an issue with any of them. Just slowly tapered down until I no longer needed them. When I tried to stop the oxy, I went into horrible withdrawals which was quiet scary. Id never been addicted to anything in my life. It was a horrible process getting off that medication and I will NEVER take it again unless Im terminally ill. Id recommend not taking this medication and discuss prior to surgery if your doctor plans on giving it to you and other options for pain medication.
Any specific questions let me know and I will do my best to answer.
My husband will meet a specialist on monday about his hemangiomas. He has 5 lesions that are supposed to be benign but we are still mortafied. Reading this post gives me hope that a laparoscopy could be an option and even if there is a 6 days in hospital plus 2 months off work approx, we are ready. My husband has been suffering for too long. He no longer knows what to eat, he hurts everyday, and it reflects on us (wife and 6 yr old daughter)). I am crossing my finger for that doctor to be knowledgeable and help us for this incredible problem that has been burdening us for more than 2 years now. I will keep everyone posted next week. Keep us in your thoughts.
p.s. we live in Montréal, Québec, Canada
From what I was told and understand hemangiomas are always pretty easy to determine as such, and differ from cancerous tumors/lesions. They are always(almost always?) benign. So at least that is one plus for having them.
So your husband has 5 hemangiomas? In his liver? What size are they? What symptoms is he having?
I hope you find a liver specialist who is knowledgeable about them. As my experience is what very difficult to find a regular or even GI doctor that was truly knowledgeable about it. More than the standard basic definition of what a hemangioma is.
My experience was horrible in trying to even determine what was wrong with me. Then once they found it, they said it was safer to just leave it. The GI doctors in my area (Nevada/USA) were they sent me were not very knowledgeable at all and thought I was some kind of hypochondriac. Or just looking for some kind of excuse as to why my stomach enlarged/got "fat". It was truly a horrible experience. I am so glad I had the surgery though. It made a huge difference. The only bad thing is at my yearly MRI follow up I found they didnt remove the smaller hemangiomas (as they couldnt because they were removing so much of my liver as is). These little hemangiomas have grown in that year. I have to go back for my 2nd year MRI in June 2013 to check them again.
Keep us updated and Best Wishes to you and your family
Thanks Cathie777 for your reply. I appreciate the fact I can talk about this (or write actually! ) My husband just called after his visit to the specialist. He says a Biopsy is required but he wants another blood test first. Also, my husband needs to lower his Iron significantly, as well as fat (lose weight) and exercise is necessary also. I will know more in a few days after we get the blood test results and once the liver biopsy is done. Sooooo scared right now. For the past few days, my husband does not know what to eat. He feels better not eating at all...so as you can imagine, I am almost fasting myself as I don't have the energy to cook anything. It's a total nightmare. Anyways, thank you for letting me express myself. I will get back to you soon.
So I am assuming he has not been diagnosed with liver hemangioma's then?
As...In general, a biopsy of suspected hemangiomas is avoided because of their benign nature and the potential risk of bleeding from the biopsy.
Cathie777 No final diagnostic was given to him other than the specifics of what the blood test shows. Also the specialist Dr Jaimes A Benhamron asked for more blood tests which we will do on sunday and we are still waiting for our date on the Biopsy. Apparently HFE is very important for the remaining steps of diagnostics. Also, he hasn't given any info on what to eat and it's driving my husband nuts. He came home yesterday, stressed out and hungry. Dr also mentioned that he must lose weight and exercise. I will keep you posted.
Thanks for your reply. I've been so preoccupied that I forgot I posted on here! My surgery was supposed to be scheduled for tomorrow but they changed it to Monday. It worked out well because I'm a teacher and it gave me the full week with my kids. He's 99.9% sure he can do it laparoscopically so hoping that's what I wake up to after the surgery. My mass is 10 cm and on the tip of my right lobe. The dr. says it's the best case scenario because he only has to remove 5% of my liver. I'm also having my gall bladder removed while they're in there. :) He says I'll probably be in the hospital for 2 days and recovery will be 2-4 weeks. It sounds like your surgery was more extensive? Was your surgery laparoscopic? How much liver did they take? I actually have 5 of these but the other 4 are small and not growing. Take care
Marleigh your message is good to read this morning. We are still waiting for the hospital to call us regarding a biopsy for my husband. Then the doctor will know more. Did you have to do a biopsy and how did it go? I am scared as I read that sometimes they cannot stop the bleeding. Anyway, things don't go fast enough here, I was thinking of going to Cuba for treatment. Here in Quebec, we lack doctors and we wait eternally for treatment. It's so frustrating. As I posted earlier, my husband's live has 5 lesions called hemangiomas. Since june they haven't grown so the doctor was not too worried but WE ARE!!! Can I ask you and the rest of the community here, what do you guys eat in the mean time? we are in the midst of changing everything in our plate, more veggies, very low fat protein, fruits, etc...my husband feels full and bloated if he eats too much. So far, sushi is good in moderation, small meals and we are crossing our fingers that these hemangiomas are caught in time.
I'm sorry you're going through so much stress. Hemangiomas are non-cancerous and rarely to never turn into cancer. I have an excellent liver dr in Michigan. I initially had a MRI, CT scan, blood tests, and an ultrasound to determine diagnose and size. We've been monitoring for 2 years through ultrasound to check growth. These are harmless when they are small but pose a rupture risk as they grow. I only need the 10 cm one removed because the other 4 are small and have not grown. If they are sure they are hemangiomas DO NOT get them biopsied! What you are reading is true...bleeding risk since all they are is a mass of blood vessels. I haven't had to change my diet and it does not interfere with liver function. It may be the location of his? Good luck and I would definitely get a second opinion if they are willing to biopsy what they are calling a hemangioma. Keep in touch and feel free to email me. Marianne
Oh I hate to say this, but I do not like that your doctor told you he will "try" and do it laproscopically. As that means he hasnt really had the training to do it that way, as its very different procedure, not just "trying" to make smaller incisions.
You want to go to someone who specializes in... and ONLY removes them laparoscopically. As its different procedure all together. They make smaller incisions, and go in and clamp off the blood supply to the hemangioma, drain all the blood out of it, which makes them able to remove them through smaller incisions.
I had a liver surgeon tell me he could "try" also to do it laproscopically also, but he was just going to try and make smaller incisions to remove them AS THEY WERE.
Im sorry but I would not take the random undetermined chance to wake up with a chevron incision which goes from your breast bone to your pelvic bone and then over to your right hip. Not to mention the recovery time is a lot more. I was told 6 months to a year to really get back to any kind of "normal" state....and with going through the less invasive surgery I can believe that even more. As its was a long slow hard recovery process for me. I had 3/4s of my liver removed, by a specialist laproscopically. Its was a hardest surgery and recovery Ive ever had to go through ...and I have been through a lot. With that, I would do it again in a heart beat though which how much better I feel.
He's actually an advanced laparoscopic doctor and teaches others in India and China. He's one of the top docs that removes these Hamangiomaa laparoscopically. I even watched on of his videos...yuck! It will be done that way. :) I believe I would be opened up if they found cancer or something due to not disturbing the cells. I do not have it so it should all be good. Wow! Glad you're doing okay with that much of our liver removed. How long until you were up and able to function?
February 8th is our appointment for the Liver Biopsy. Still waiting for HFE test to come back but reply is expected feb 18th only...I am thinking of posting in the Professional Forum with complete tests results. Have you tried that and is it worth it?
Quite shocking to read that so many people actually have hemangioma in their liver. My mom went for ultrasound and eventually ct scan 1.5 yrs ago to monitor her hep b status. My aunt had just passed away from liver cancer then. Was scared stiff when we discovered she has a lesionin her liver. But that turned out to be a hemangioma.
Few weeks ago she did a follow- up ultrasound and they discovered one more lesion this time. She has elevated ALT too. Will be going for a MRI tomorrow, I am really really worried seeing how my aunt suffered from liver cancer. Can someone tell me if it is possible to develop hemangioma within a year? The ultrasound says this lesion has no internal vascularity. I googled this and it says 75% of benign tumors have no vascularity. I am praying that it is the same diagnosis this time hemangioma and not something else.....
I'm 10 days post-op and doing well. He removed a 10 cm hemangioma from my right lobe and a 3 cm from my left lobe. He had only planned to take the 10 cm one but thought the left one would be bothersome. The other 3 are tiny and he said I wouldn't have to worry about them. He ended up removing 30% of my liver and removing my inflamed gall bladder. He did it laparoscopically with minimal incisions. This doctor is awesome! I still have the drain tube and hoping to get rid of it soon. I measure the drainage and it is becoming less and less each day. The surgery wasn't a walk in the park as you know, but I'm doing what I need to do and getting stronger each day.
I hope you are doing well! Keep us posted on how you are doing and how your recovery goes. I didnt have drainage tubes...that I remember anyway, lol. I had my gall bladder removed also.
What kind of pain medication did they give you? If they gave you Oxycontine be really careful with that stuff.
Do you notice any differences?
My recovery is going really well. The laparoscopic surgery is the way to go! I was first given morphine while in ICU but it wasn't working so they switched me to Dilaudid. Powerful stuff so I got off it very quickly. They were giving me Tordel (sp?), an anti-inflammatory, and an Elixar form of Loratab. I did have problems with pain control and it seemed like I was always an hour to 1 1/2 hours behind on meds with the pain. I hated the 6 hour schedule they had with the loratab. They eventually put me on a fentynal patch and loratab pills the last day and that is what I went home with. I had a dr. Appt on Wednesday and they switched me to Percocet, which is 7.5 oxycodone and 325 acetaminophen. The loratab had 7.5 hydro codon and 500 acetaminophen. We switched to lower the acetaminophen. I didn't get my patch refilled because I'm weaning myself off. I saw your post about your meds so I'm trying to go longer and longer between meds. I'm an elementary school teacher and had to take a medical leave. I'm planning on going back in 2 weeks so can't be on pain meds. Overall I'm just tired but healing up quickly.
Liver Biopsy last friday was a success. Doctor took two samples and the whole thing lasted a few minutes only. We are now waiting for the results. I suppose we should be expecting a score on the Metavir scale, is that it guys ?
Finally met the gastroenterologist yesterday with the results from the numerous blood test and liver biopsy. My husband has Nonalcoholic Steatohepatitis or commonly known as NASH or the silent liver disease. Doc gave him antioxidants pills and asked him to drop his weight. We will return in 3 months time for a follow up. We'll have to do another blood run and hope for the best for now.
I have a 7 cm hemangioma on my right lobe, which I must have removed. I cannot take it anymore. I am tettering on the brink, the precipice, Could you please tell me where to find the best laproscopic surgeon in my area...New England? Specifically what type of sugeon does this work? I live in a semi-remote area in western Massachusetts so I assume I will have to travel someplace, like to Boston or New Haven, to be able to get the best treatment? Any help that you or anyone else can provide to me would be so greatly appreciated.
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