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.
I live in Boston and am seeing someone at Beth Israel about two 12 cm hemangiomas. I'm trying to decide if i should have surgery now or wait. I'm experiencing pressure and sometime dull pain and my liver is enlarged and protruding. I'm leaving to work overseas at the end of next month so would have to do it right away as i wont have an opportunity for a long while once I leave. It's a tough call.
I will probably want to go to Brigham and womens or Mass General as they are the two best hospitals around (both part of the Harvard system). You may have already had the procedure, and if so, i'd like to know how it went.
I noticed that you had not responded to some of the later queries about your pending surgery at the time (7 May 2010), I am also not sure if you still visit this site and if you do or if someone else had a similar experience and had survived the same surgery please tell as your story and experience as it s a meaningful experience to some of us that it will inspire and be a needed much needed moral booster to go through such a major life decision.
I'm recently diagnosed with two hemangiomas, one is large (but fortunately 6 cm - I know it could be worse), the other is 4 cm. I've been doing a lot of research, as I feel a sense of urgency from my gen. practitioner to see a general surgeon and discuss my options. No push to see a Hepatic specialist or someone specifically skilled in this are. So I'm doing my research to that I will know what questions to ask. Here is one option I haven't seen mentioned here - and was wondering if anyone went this route? If so - what were your results? If this link isn't clickable - google: [Personal experience in embolization of liver hemangiomas] -- it's on the NCBI website.
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.
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.
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.
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!
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.
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?
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.
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?
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.
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?
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?
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??
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.
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!
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".
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?
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.
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
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
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 .
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!
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.
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