I have just been reading all the messages regarding hemangioma on the liver. I too have a large hemangioma diagnosed maybe 10yrs ago, I have since had twin girls now aged 3yrs. My specialist 5 years ago told me that getting pregnant could be dangerous for my health and that he did not recommend this. He told me that the hormones during pregnancy could cause my hemangioma to grow which would put pressure on my liver. So when I did fall pregnant about 5yrs ago I sadly aborted my baby due to the information that the specialist had told me, what aload of c**p he was as I mention my girls are 3yrs now, so I killed my baby for nothing. Here in New Zealand suing a doctor just doesnt happen and trying to fight with my specialist was a big waste of time, I still have to live with this and when I look at my twins i often think of the baby that I was told I shouldnt have. My symptons are very similar to everyone elses, but have worsen over the last year Im due for blood tests this week. We are all guinea pigs to the medical world because they really dont know what they are doing.
i am a doctor and worse i am a pathologist and was recently diagnosed to have a huge liver hemangioma...please hold on to this message board because i am going to write the very details of what i have experienced and continue to experience until now after the emobilization procedure.
it all started in march of this year when i presented with acid reflux. i was brought at the ER and was treated accordingly with medications for acid reflux. i thought initially of a heart attack due to the pain radiating to the chest and upto the neck area. anyhow, my EKG and cardiac enzymes were all normal except for a highly elevated D-dimer, a test for blood clot (or thrombosis) usually performed for suspected pulmonary embolism which i didnt have coz patients with this will look so ill...(initially i thought that this elevated d dimer is just a machine error..but later thought of it as a true positive test result and i attributed it to the thrombosis within the hemangioma which occurs fairly often causing mild to moderate pain).
i was discharged from the ER against their advise to pursue that abnormal d-dimer result...i took the medications for acid reflux for more than a month providing relief but what surfaced in May is the bloatedness..i was not experiencing a right upper quadrant fullness not until maybe early in August...here, aside from the fullness and bloatedness from gas, i also experience a low grade fever, feeling of not being 100% (i estimated my physical strength to be around 70-80 percent) and i easily tire...there is no easy bruisability (this happens in patients who developed the Meritt-Kassabach syndrome of trapping platelets within the hemangioma which means less platelets are in the general blood circulation), apart from these symptoms, there is an occasional momentary pricking pain within the liver area, the right upper quadrant and sometimes i felt this at the back at the same region of the liver..i waited till three weeks till i consulted a gastro who told me to have an ultrasound of the abdomen..later to reveal a "enlarged liver with multiple masses suspicious for metastatic tumors" as the report says..of course, i am a doctor and with that report, i am scared to death that if that is the case then i have already a stage 4 cancer! (most cancers go to the liver due to the liver's plenty blood supply...and they are found as multiple nodules..not unlike the primary liver cancers that are usually solitary)..of course, i will have to undergo blood tests for tumor markers...pancreas, colon, prostate and liver as well and thankfully they all turned negative..
the next to follow is the ct scan, i underwent a triple contrast scan of my abdomen and showed multiple giant cavernous hemangiomas, the largest being 17cm! to cut the story short, my surgeon opted for the second option of treatment and that is embolization...this is done by an interventional radiologist who makes use of a long catheter aided by fluoroscopy and injecting a substance usually polyvinyl alcohol particles into the hepatic artery branches.
so i underwent that procedure..took them 2 hours to do it...my right groin is sore right after the procedure...its my 7th day now post embolization and there is still a mild pain/tenderness over the area where they inserted the catheter...as expected, the procedure will cut off the blood supply to the tumor until it undergo necrosis (death) and eventually atrophy (shrink)..what i experience now is more bloatedness, 2-3/10 pain and tenderness over the area of the liver (this is expected while the tumor is undergoing necrosis because there is inflammation during this necrosis stage) and i may have to experience this for days to come God knows until when..but perhaps within 2-3 weeks...
what i feel now aside from the pain? well, the same weakness i estimated at 70-80%, lightheadedness (my bp at 110/70), bloatedness...the weakness is felt mostly on my legs and arms especially the joints..muscle power is reduced...and all i want is to lie down..but i know i must at least walk or do something to keep me going.
there is no fever at all but there is feeling of having a low grade fever..my appetite hasnt changed but i cant eat to the fullest since i will have reflux (the hemangioma is pressing my stomach limiting its capacity so it produces acid reflux.).
in two months, i will have a follow up scan to asses the size of the tumor...but i am so worried of these symptoms i needed to see my doctor soon.
i hope and pray the tumor will shrink and forget about the 1st option, i.e. surgery.
i was discharged from the ER against their advise to pursue that abnormal d-dimer result...i took the medications for acid reflux for more than a month providing relief but what surfaced in May is the bloatedness..i was not experiencing a right upper quadrant fullness not until maybe early in August...here, aside from the fullness and bloatedness from gas, i also experience a low grade fever, feeling of not being 100% (i estimated my physical strength to be around 70-80 percent) and i easily tire...there is no easy bruisability (this happens in patients who developed the Meritt-Kassabach syndrome of trapping platelets within the hemangioma which means less platelets are in the general blood circulation), apart from these symptoms, there is an occasional momentary pricking pain within the liver area, the right upper quadrant and sometimes i felt this at the back at the same region of the liver..i waited till three weeks till i consulted a gastro who told me to have an ultrasound of the abdomen..later to reveal a "enlarged liver with multiple masses suspicious for metastatic tumors" as the report says..of course, i am a doctor and with that report, i am scared to death that if that is the case then i have already a stage 4 cancer! (most cancers go to the liver due to the liver's plenty blood supply...and they are found as multiple nodules..not unlike the primary liver cancers that are usually solitary)..of course, i will have to undergo blood tests for tumor markers...pancreas, colon, prostate and liver as well and thankfully they all turned negative..
the next to follow is the ct scan, i underwent a triple contrast scan of my abdomen and showed multiple giant cavernous hemangiomas, the largest being 17cm! to cut the story short, my surgeon opted for the second option of treatment and that is embolization...this is done by an interventional radiologist who makes use of a long catheter aided by fluoroscopy and injecting a substance usually polyvinyl alcohol particles into the hepatic artery branches.
so i underwent that procedure..took them 2 hours to do it...my right groin is sore right after the procedure...its my 7th day now post embolization and there is still a mild pain/tenderness over the area where they inserted the catheter...as expected, the procedure will cut off the blood supply to the tumor until it undergo necrosis (death) and eventually atrophy (shrink)..what i experience now is more bloatedness, 2-3/10 pain and tenderness over the area of the liver (this is expected while the tumor is undergoing necrosis because there is inflammation during this necrosis stage) and i may have to experience this for days to come God knows until when..but perhaps within 2-3 weeks...
what i feel now aside from the pain? well, the same weakness i estimated at 70-80%, lightheadedness (my bp at 110/70), bloatedness...the weakness is felt mostly on my legs and arms especially the joints..muscle power is reduced...and all i want is to lie down..but i know i must at least walk or do something to keep me going.
there is no fever at all but there is feeling of having a low grade fever..my appetite hasnt changed but i cant eat to the fullest since i will have reflux (the hemangioma is pressing my stomach limiting its capacity so it produces acid reflux.).
in two months, i will have a follow up scan to asses the size of the tumor...but i am so worried of these symptoms i needed to see my doctor soon.
i hope and pray the tumor will shrink and forget about the 1st option, i.e. surgery.
I have pain that comes and goes every day below my right ribs. The doctor thought it was my gall bladder, turned out to be a liver hemangioma. I also have the nausea, bloating, fatigue and I'm low in vitamin D. I read on here that someone had circulation problems with cold hands and feet. My feet turn purple when I'm not moving, I don't think that has anything to do with this, but not even a vascular surgeon can tell me why that happens. I have been reading so much online, some say they cause symptoms, some say they do not. Obviously they do. My doctor did not order a liver function test and I'm thinking I should have one done. In fact, I did not receive any information at all! Just a phone call from one of the office staff giving me the diagnosis which she couldn't even pronounce! I would think they would give me some diet info, follow up info, something! Has everyone had a liver function test ordered, but me? Time for a new doctor??
I have have been suffering from abdominal pain and pressure for over two years now. They did a CT scan and found a hemangioma, the doctor said it was nothing to worry about but we'd keep an eye on it to make sure that it doesn't change in size. Six months later we did another CT scan, good news it didn't get larger, but it made a friend. Seven months after that I had yet another CT scan and now have 3 hemangiomas and a cyst ( they aren't sure but one of the hemangiomas might be another cyst) Personally I am afraid to have another scan. My symptoms started out small, mild pressure on my right side. It was only there on occassion then over a period of three months it gradually got worse, making eating impossible. Then it started to become painful. I also have had my gallbladder removed, hoping that was the problem. I also had a hysterectomy. Neither of these have helped. Vicodin helps for a limited time as far as the sharper pain but does not help with the pressure. I have gone to a pain clinic and he put me on the lidocaine patches which like the pills helps a bit but it limits the area (what the patch covers) and only lasts for about 6-8 hours. Unsure if the other symptoms that I suffer from have any relation but I also have the extreme fatigue, shortness of breath, dizziness occassionally. The pain increases when my bladder is full, and eating or drinking makes it worse. They are suppose to set me up with a specialist to see about having them removed but it has not happened yet. The doctor at the pain clinic thinks that the side pain is caused by shingles even though I do not have nor have I ever had a rash that is the primary symptom of shingles. It is always nice to know that I am not the only insane person who is having these problems.
Several have mentioned the poor circulation issues in the hands and feet to include discoloration. This could be caused by Reynards (not positive on spelling) It matches the symptoms, my mother suffers from this and I am sure that I am also getting this, I have very poor circulation my hands and feet are always cold. My mother gets the discoloration a lot. There is nothing you can really do about it, other than make sure that you wear socks and during really cold weather gloves. But if you go to a foot specialist they can formally diagnose you and be sure that this is what it is.
That is funny strange. I was diagnosed with a hepatic hemangioma 2 years ago as well after pursuing diagnosis for upper right quadrant abdominal pain. I also have Reynauds Syndrome. I think MDs are full of it when they say it doesn't cause pain.
I am having a repeat MRI soon because an cat scan has shown it has grown. I only have one though. I think I will ask for liver tests as well.
FYI-These are recommended in ruling out metastasis- AFP (alpha fetoprotein *sp) CA19-9, and CEA levels
I am having a repeat MRI soon because an cat scan has shown it has grown. I only have one though. I think I will ask for liver tests as well.
FYI-These are recommended in ruling out metastasis- AFP (alpha fetoprotein *sp) CA19-9, and CEA levels
I have two large liver hemangiomas 5.5cm and another at 8.5cm. I had a 15.5 cm removed about 2 years ago. Recently working out with weights has made my neck hurt and made me dizzy.
I originally went to the doc because of pain in my upper right area. Ultra sound showed gallstones- had the gallbladder out. Still 4 months later and i still have the same pain..almost like something is too big inside pushing out. Then there is the major bloatting. I have not gained any weight BUT have gone up almost 3 pant sizes. If I bend or twist certain ways OMG the pain stops me. feels like a handle or a knife jabbed inside. I def. have shortmess of breath- constantly feel full- to the point i hate to eat. any amount of walking and my leggs ache soooo bad. cold air on my lower legs gives me cramps so bad i get the diarreha. The ultra sound guy says I have birthmarks on my liver. that is why i had the ultra sound done today- they noticed them 4 months ago. I am thinking the doc thinks it could be more then that he did not even metion them to me- and i have seen him two times and had no idea this ultra sound today was coming! What bothers me is the MAJOR PAIN when i move the certain way..and its on my upper right side!
I have a GIANT hemangioma on the right side of my liver. It's basically taken over almost the whole right side. The left side of my liver is larger than what it should be. I am actually going in on June 14, 2011 to have the right side removed. It is MAJOR surgery, but I know it needs to be done. The surgery will take 4 hours and I'll be in the hospital for about a week. It is scarey but I know I'll feel better once it is removed.
I posted about misdiagnosis up thread. My hubby says he has no pain but has always had a high pain tolerance. He is also touchy on the subject. He has lost two clothing sizes(went from X-LG to a med). Rather than the bloating most experience he has lost weight and looks like a skeleton of his former self. His skin is darker but no yellowing of his eyes yet + he seems to have ages rapidly. Has nausea daily and at times some blood mixed in. He is cold most of the time and really tired. This difference in symptoms is why I think he was misdiagnosed with hemangioma and actually has perhaps something else wrong with his liver. The reason he went to doctor in first palace is that his arm had hurt for around 2 years.
I have a 3cm hemangioma and have heard from doctors that it causes no symptoms. The hemangioma is new and I have had light-headedness, fatigue, pain with wearing a bra, something pushing up my diaphragm, and chest pain that radiates to my neck and back.
I have similar symptoms. Who was your surgeon at UAB? I'm looking for a doctor who will help me?
I know no one has posted here in a while. but I am kind of relieved to see that I am not the only one with these symptoms. I just found out that I have a liver hemangioma last week (they didn't tell me the size), but for years I have experienced a host of GI problems, including nausea and extreme fatigue (especially after eating), as well as low BP and other abdominal pain that presented as acid reflux. The visit to the ER where I had my ultrasound was prompted by excruciating abdominal pain and a blood test results showing a high liver enzyme count. I am only 20 years old and I lead a pretty healthy lifestyle (aside from sleep deprivation...but that's pretty standard for college students). This whole thing is really unsettling!
Hi I was ill and suffering from hypoglycemia. On MRI, I was told I had a cavernous hemangioma measuring 10.8 x 10.4 x 7.5 cm. I am nauseated, GI problems also, fatigued, severe thoracic pain, painful breathing and shortness of breath, I haven't worn a bra in over a year because I feel smothered internally. LFT's normal. The liver surgeon will do an open liver resection as my chest cavity is palpably "full". I'm only 4' 11'. My hemangioma is centrally located and frankly I am scared to go. I also have multiple hemangiomas on my spine and one in the right hemisphere of my brain. I made the choice to go in hopes of getting relief honestly. I am waiting for my appointment. Good luck to you all.