Hi LizC
I found a dr. at the University of Wisconsin (Dr. Fred Lee) who has sucessfully treated these with ultrasonic radio frequency abalation. I sent them a copy of my MRI and US and am waiting to hear back. I will have a repeat MRI in 6 months to see if they are growing. My GI dr. has ordered me the following tests to rule out cancer (he said he is 95% certain it is NOT but he doesn't want to do a biopsy because of the risk of bleeding. The tests are CEA, AFP and CA-19-9. The US I had prior to the MRI showed my masses were NOT characteristic of hemangiomas. . .but the MRI which was done with and without contrast said that they were hemangiomas. When I questioned by dr. about the conflicting reports he said that the MRI was way more accurate and detecting hemangiomas which are benign and never turn into cancer. .. hope that helps put your mind at ease. The radio frequency ablation procedure is minimally invasive compared to surgical removal. I freaked out at first thinking I had cancer. . .then worrying about them rupturing. After doing some research and speaking to the nurse coorinator at Dr. Lee's office I feel much less stressed. . .and that there is an option available out there BESIDES surgery should they get large enough to for me to require treatment. Please keep me posted on your MRI and if you want the contact information for Dr. Lee's office, let me know.
I found a dr. at the University of Wisconsin (Dr. Fred Lee) who has sucessfully treated these with ultrasonic radio frequency abalation. I sent them a copy of my MRI and US and am waiting to hear back. I will have a repeat MRI in 6 months to see if they are growing. My GI dr. has ordered me the following tests to rule out cancer (he said he is 95% certain it is NOT but he doesn't want to do a biopsy because of the risk of bleeding. The tests are CEA, AFP and CA-19-9. The US I had prior to the MRI showed my masses were NOT characteristic of hemangiomas. . .but the MRI which was done with and without contrast said that they were hemangiomas. When I questioned by dr. about the conflicting reports he said that the MRI was way more accurate and detecting hemangiomas which are benign and never turn into cancer. .. hope that helps put your mind at ease. The radio frequency ablation procedure is minimally invasive compared to surgical removal. I freaked out at first thinking I had cancer. . .then worrying about them rupturing. After doing some research and speaking to the nurse coorinator at Dr. Lee's office I feel much less stressed. . .and that there is an option available out there BESIDES surgery should they get large enough to for me to require treatment. Please keep me posted on your MRI and if you want the contact information for Dr. Lee's office, let me know.
Hello DebbieW, Thanks very much for your quick response. You have indeed put my mind at rest. I've just had a phone call from my doctor and I should get a date for my MRI in a day or two. I live in Scotland and do not know if they do ultransonic radio frequency ablation here but I'll be asking ! I'll be in touch again and would be happy to hear how you are getting on. Thanks.
hemagioma, has caused a poor quality of life. I had appriox. 21 cm x 19 cm hemangeoma & most people would invariable assume that I was due for delivery! I also went through many of the symptoms like bile vomiting, naussea, never having a feeling of goodness, feeling tired, v.poor bowel movement, ...
I also have a heavy bleeding menses for which I'm on medication.
Doctors suggested right hepatectomy - a gruelling 10 hour major surgery. I was v.v. scared. Thought I would die or be bedridden. But thank god, thanks to the surgoen who did my surgery, & thanks to my family. my condition is good, to the extent that I'm able to do my house hold activities. I've stopped going out for job.
But definitely I thank god that today I'm still living & carrying out my daily activities w/o external help.
I also have a heavy bleeding menses for which I'm on medication.
Doctors suggested right hepatectomy - a gruelling 10 hour major surgery. I was v.v. scared. Thought I would die or be bedridden. But thank god, thanks to the surgoen who did my surgery, & thanks to my family. my condition is good, to the extent that I'm able to do my house hold activities. I've stopped going out for job.
But definitely I thank god that today I'm still living & carrying out my daily activities w/o external help.
life is not easy living with a liver hemangioma. I have had one all my life. I am 65 years old and have went through hell. Sharp back pains off and on. Digestive problems. Gall Bladder taken out. All I can tell you is watch what you eat and drink. Coffee is my number one enemy. I love it but I can not drink it. Take Zantac once in awhile it might help. Do not take it always because I start having problems with taking it after awhile. Also medicine when I was sick would always cause me more problems. I would have to take a anti-biotic for a sore throat but always had major problems with taking medicine. Good Luck. I feel your pain and frustration.
Gloluther wrote:
hi ! curiosity, what seizure meds do they give you ?
i have brain tumors .. meningiomas, kinda fun .. NOT. i have had them surgerically removed when size of a peach, 5 years later grew back same size, back to surgery again, then now i still have 6 little ones up there ugh. ANYWAY .... i went to the ER one stupid day as my left side was tingly & numb & my neuro had told me i had a small stroke. the neuro in the hospital thought it was migraines (even tho i didn't have a headache) & pumped by IV a gram of depakote. i had taken depakote many years earlier for seizures so i wasn't worried about it, but i really wanted to go home LOL as i walked out of the hospital my head about split with NOW i have a headache. nice guy. came home, took a nap & when i woke up my stomache was bloated & sick to my stomach. didn't think much, figuring it was either the headache or meds. after over a month of my stomache bloating, right side hurting i went to my GP, did an ultra sound & found this fun liver hemangioma. i go to the dr this afternoon. i have no clue if the depakote started this fun filled ride or just coinsidence ??? i am miserable & hate it.
debutante wrote:
I have been having weird symptoms since Aug 2007 and after every test (heart, blood, ultrasounds, CT scans, MRI) and removal of my gall bladder, I am still feeling the same lightheaded, nauseous, blood pressure elevated and generally just not feeling great. I exercise and run on a regular basis eat well and try to keep this up hoping that I will start feeling better physically, but now they have found this thing on my liver (after my last CT scan with contrast and have to go for a RBC scan now), and they tell me that there are usually no symptoms. I would like to know if anyone else has had a liver hemangioma and if they have had these or any types of symptoms also.
I also have diagnosed with a liver hemangioma (found when doing MRI for my bad back/hip). I have been having dizzy spells, very itchy skin, nauseous, high BP, very tired, tar-like stool (usually black in color but sometimes very white). They removed my gallbladder 2 yrs ago but still have pain under right rib (80% of time), also tea-colored urine, and just plain feel bad most of the time. I also have been having seizures for last 10 yrs. Before then I didn't have any & have had NO trauma which would result in late onset seizures. I am 57 yrs old (female).
hi ! curiosity, what seizure meds do they give you ?
i have brain tumors .. meningiomas, kinda fun .. NOT. i have had them surgerically removed when size of a peach, 5 years later grew back same size, back to surgery again, then now i still have 6 little ones up there ugh. ANYWAY .... i went to the ER one stupid day as my left side was tingly & numb & my neuro had told me i had a small stroke. the neuro in the hospital thought it was migraines (even tho i didn't have a headache) & pumped by IV a gram of depakote. i had taken depakote many years earlier for seizures so i wasn't worried about it, but i really wanted to go home LOL as i walked out of the hospital my head about split with NOW i have a headache. nice guy. came home, took a nap & when i woke up my stomache was bloated & sick to my stomach. didn't think much, figuring it was either the headache or meds. after over a month of my stomache bloating, right side hurting i went to my GP, did an ultra sound & found this fun liver hemangioma. i go to the dr this afternoon. i have no clue if the depakote started this fun filled ride or just coinsidence ??? i am miserable & hate it.
well I was dx about 6 months ago and had insurance at the time but have since lost my insurance and now trying to obtain health insurance and have been denied initially and after requesting review I was accepted at at an increased rate of 75%. I to have light headedness, fainting and bloating feeling. Also when I was pregnant 20 years ago I vomited excessively for the whole 9 months wondering if this had anything to do with the hemangioma
I have the same thing with the same rresults from my Dr. I'm going for a second opinion.
Thanks so much for the information. My dr said he would repeat the MRI in one yr to see if it is growing. If so, then we will talk about further treatment. I have had several different forms of cancer so it is a big concern for me also. From what I have read if it is smaller than 4 cm they are usually of little concern. Now to get my dr to tell me the size of mine! I have asked several times & he changes the subject each time which leads me to think it is larger than the 4cm. Hmmm I will get a straight answer out of him or switch docs. Thanks for your information. I am in North Idaho so a long way from Wisconsin.
Hello,
Over a year ago, I began waking up in the morning with what felt like an ice pick stuck in my right upper back under my rib cage directly behind my liver. (I sleep on my right side also.) I have to get out of bed because the pain will not go away as long as I am lying down. Gradually the pain became stronger and more frequent and did not always go away with me getting up. Then it began to hurt during the day depending to my activities, like holding my arms up washing the dishes. Now over a year later it hurts whenever, no specific time or activity required. I have also noticed some slight loss of appetite and getting full quicker. No nausea. My upper abdomen definitely feels fuller, more bloated and uncomfortable feeling. I went to the doc and he felt it was a pulled muscle, especially since I sleep on my right side also. Well, a year and a half later, it is still here and getting progressively worse.
I had a CT trying to determine why I am having lower abdominal pain and was told I have a 1.2 cm indeterminate lesion on my liver, so I am scheduled for an MRI of my liver to confirm what this lesion is. I am hopeful that this a only a hemangioma but my concern is, whatever it is, I need to get rid of the pain either way. This is a very specific pinpoint pain in my right upper back under the ribs and it does not move or radiate. Also, I found this most interesting... while undergoing the CT and soon after the dye was injected, I had the exact sharp pain in my back that started slowly and then got severe and then went away, that fast.
I am interested to know if anyone else has had the same pain profile that I am having, a sharp pinpoint pain in your upper back and what brings it on. Also, has anyone else had pain when contrast dye was injected on CT and why this might have happened?????
I would be thrilled and thankful to hear your comments and experiences. I am desperate to get rid of this back pain.
Best wishes to all of you with your health and healing. My heart goes out to you.
Over a year ago, I began waking up in the morning with what felt like an ice pick stuck in my right upper back under my rib cage directly behind my liver. (I sleep on my right side also.) I have to get out of bed because the pain will not go away as long as I am lying down. Gradually the pain became stronger and more frequent and did not always go away with me getting up. Then it began to hurt during the day depending to my activities, like holding my arms up washing the dishes. Now over a year later it hurts whenever, no specific time or activity required. I have also noticed some slight loss of appetite and getting full quicker. No nausea. My upper abdomen definitely feels fuller, more bloated and uncomfortable feeling. I went to the doc and he felt it was a pulled muscle, especially since I sleep on my right side also. Well, a year and a half later, it is still here and getting progressively worse.
I had a CT trying to determine why I am having lower abdominal pain and was told I have a 1.2 cm indeterminate lesion on my liver, so I am scheduled for an MRI of my liver to confirm what this lesion is. I am hopeful that this a only a hemangioma but my concern is, whatever it is, I need to get rid of the pain either way. This is a very specific pinpoint pain in my right upper back under the ribs and it does not move or radiate. Also, I found this most interesting... while undergoing the CT and soon after the dye was injected, I had the exact sharp pain in my back that started slowly and then got severe and then went away, that fast.
I am interested to know if anyone else has had the same pain profile that I am having, a sharp pinpoint pain in your upper back and what brings it on. Also, has anyone else had pain when contrast dye was injected on CT and why this might have happened?????
I would be thrilled and thankful to hear your comments and experiences. I am desperate to get rid of this back pain.
Best wishes to all of you with your health and healing. My heart goes out to you.
I am 36 and was just diagnosed with a 9.2x3.6 cm hemangiom aof the liver . I got no info. Do all gi drstreat ones this big? I am so anxious and scared considering i dont know prognosis.
I'm a 34 year old female. Last year (June 9th to be exact) I started having major dizziness. I went to the er and found out I was pregnant. That whole week I was in great pain on my left side. I went back into the ER June 16th and found out I was having a miscarraige. They told me this is what the pain was from. However, the left side pain did not subside. It was right under my ribs. Then it started on my right side. After months and months of pain I was told I had sludge in the gallbladder. I started acupuncture and the pain went away in literally 2 sessions. Fast forward to July 2nd 2012. I started getting the pain on my left side again. Mainly a dull pain a little less than a runners cramp. Then it got worse and worse and finally by July 12, it was stabbing pain in my left side. I also was vomitting here and there, dizzy, felt like I was full of air and also could hardly eat withouth getting full right away. I went to the ER and they ran a bunch of blood tests which came back normal as well as my urine. They did do a CT scan and found a lesion on the left lobe of my liver. This shocked me because I had a CT scan last year and they didn't see anything.
I go for an ultrasound later this week. I really don't know what to make of this. When I look up liver hemangioma's, the symptoms seem pretty spot on,yet, the docs act like this isn't a big deal. It's beyond frustrating.
For over a decade I have had the "purple hands," diarrhea (EVERYDAY), migraines
I'm wondering if any of you tried acupuncture for this?
Forgot to mention I am now on cipro and flagyl in case it was diverticulosis. I have been on these antibiotics a few days now and do not feel any better.
I am a 45 year old woman who started battling URQ pain over a year ago. Initially doctors thought it was my gallbladder, but all tests (HIDA scan, US, etc) were negative. Surgeon insisted it was my gallbladder although I had had my two hemangiomas discovered a few months before (I have two hemangiomas on my liver (the largest being 3 cm, and, recently discovered, one on my spine). So we proceeded with the gallbladder removal surgery. The day after the surgery, I had to call the squad because I thought I was having a heart attack. Severe epigastric/chest pain, woozy feeling in my head (almost to passing out), and blood pressure that dramatically and quickly dropped to 70/palp taken by the medics. This "attack" happened two more times within the week, the second time inducing horribly violent bouts of vomiting. I returned to the hospital via ER and was admitted, but to no avail. After countless doctors (actually, I can count them, 12), numerous tests and scans, and even several different hospitals, including Cleveland Clinic and Ohio State University, I still have NO diagnosis. All the symptoms are the same as the posts before me. Dizziness, fatigue, severe bouts with epigastric pain (daily and nightly) usually relieved with some form of sodium (IV, saltines), the pain radiates through to my back, up into my right shoulder, usually in a band-like fashion (where my bra lies), nausea, vomiting (or heaving due to nothing in my stomach), I have neurological symptoms as well with mottling, Raynauds type symptoms, involuntary eye crossing, vertigo, bouts with elevated blood pressure,etc. Most of my blood tests are good to though I have a continual higher white blood count and higher red platelet count. Most of the doctors I have encountered only want to treat the symptom, not find the problem. No doctor, NP, RN, or any specialist has yet to determine what my issue is, but along with most of the people on here, they refuse to assume it is due to the hemangiomas, and maybe it's not, but I just spent the last hour ready 4 pages of posts from people that would disagree. I don't know what my issue is, but as I have told many doctors, I find it hard to believe that I have so many issues, but would not find it difficult to believe that these are all symptoms of one disease/disorder. I have "pain attacks" every day. It has become a burden for me as I feel I cannot live my life properly because I'm always waiting for the next "attack". I feel for all of you on here as I know what it is like to have an undiagnosed condition that truly interferes with life and the frustration felt is sometimes overwhelming. I have been lucky to have some great support from my family, but I wish I could say the same about the medical community.
Unfortunately all I know is what I have read. My follow up with the doc is not until next week after another MRI of the liver. It seems from what I have read that hemangiomas are not treated so much as watched and maybe surgery when it is really large. Most liver lesions appear to be benign and a large portion of the population has them without even knowing it. Does your cause pain?
Hi! YES YES YES... so frustrating - I feel your pain as I have been symptomatic since April... high abdominal pressure, low back pain, dizziness, loss of appetite, can't eat as much - feel full really fast and last week it was discovered after numerous tests that I have an hemangioma on my liver and one in my liver. Being tested now to see if it's grown since May when I had an ultrasound. Where are you at?