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Old 02-02-2011, 09:27 PM   #1
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Join Date: Feb 2011
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CMF2011 HB User
Exclamation Hepatic Hemangioma?? Or what?

Hello. I have never joined a message board before nor have I ever had any liver problems. . . until now. It started out in April 2010 when I started to get physically ill at the gym. At first I just thought I was working myself too hard, but no matter what I did, I would end up feeling nauseas, puking and getting an upset stomach--and this lasted for the better part of my day. I finally went to the doctor after suffering for 3 weeks with excruciating pain (at times).

At first, my doc thought it was ovarian cysts. I went for an ultrasound which came up with nothing. Since I was still having issues she thought that maybe it was an inguinal hernia and sent me for and ultrasound of my abdomen. It was during this time that they found 2 masses on my liver, one measuring 34x23x19mm and the other 30x22x14mm. I have been told that it is probably not anything to worry about.....

I have been researching hemangiomas ever since, unfortunately I don't feel like I ever find good information anywhere. I am so happy to have found this site/ forum.

Because they weren't sure what these "masses were" I was then sent for an RBC scan, which read - "No evidence of hepatic hemangioma. Further characterization is suggested with MRI."

By this time I have drove myself crazy researching liver disease and what this could be. I am going to supply some terms they used to describe my masses. If anyone could give me some input on what they think I would greatly appreciate it.

"Two heterogenous, slightly echogenic liver masses both showing slight vascularity; non specific appearance" (from the abdominal report)

"study does not demonstrate any discrete focal hepatic abnormality and are not likely to be hemangiomata. Differential diagnosis would have to include hepatic adenoma or focal nodular hyperplasia, with other neoplasm considered less likely" (from the RBC scan)

Has any one else had similar findings? I had an MRI a few days ago and hope to get the results by the end of this week. But in the mean time I am trying to find out what I am in for....

What are other peoples experiences? Do they have to do a biopsy? Do you have to get them removed?

While my daily vomiting has slowed, I am too full after eating (even though I eat less. I am also having trouble losing any weight no matter what I do), I suffer a sharp pain in my right side when doing anything physical, and am always sooo tired. I also feel pain in my right back side when I bend over (to tie my shoes or put my boots on for example)...Sometimes it feels like my side is throbbing... I'm so frustrated.

Help!!

 
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Old 02-04-2011, 11:03 AM   #2
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Join Date: Feb 2011
Location: MA
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Terbear4 HB User
Re: Hepatic Hemangioma?? Or what?

Hi,
I'm a 52 year old women who has had giant liver hemangiomas for over 10 years now. I have about 7 or 8 now very large pretty much taking over my right lobe of my liver. I have terrible right shoulder pain in the back and most of the time feel like I'm about 7 months pregnant. I went to two different options one at Mass General in Boston where the doctor said he could remove them at least most of them and the other doctor at Lahey in Burlington Ma who would not touch me. SO for now I live with the bloating and the pain and hope that once I go through menopause they'll stop growing.
How about yourself what are your symptoms?

Terbear

 
Old 02-09-2011, 06:19 AM   #3
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Join Date: Feb 2009
Location: Buffalo,NY,USA
Posts: 26
ChelleRose HB User
Re: Hepatic Hemangioma?? Or what?

I had a hemangioma the size of a large grapefruit removed I also had the symptoms you are experiencing except for the vomiting. You can read my threads. My first test to prove it was a hemangioma came back negative it was a nuclear test it wasn't until after the MRI and seeing a good liver doctor did I know what it was which was nerve wrecking cause it took 3 months. But all along the Drs reassured me it wasn't cancer I wasn't yellow or any of the other symptoms that go along with it. Are you on birth control because not too many people realize that bc can cause adenomas. If you need to get them removed it really isn't that bad but I know it's hard not to be nervous especially when your waiting for answers. Chellerose

 
Old 02-10-2011, 10:11 PM   #4
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Join Date: Feb 2011
Location: Canada
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CMF2011 HB User
Re: Hepatic Hemangioma?? Or what?

I only have 2 masses and some days the pain drives me crazy. I can't imagine having any more. I do get right shoulder pain as well, I always associated it with heartburn though. Now I am starting to second guess that. Anytime I eat anything I feel pain in my right side under my rib cage.
I have been told they are not hemangioma's--however, out of all the other possibilities out there, I would probably prefer that. I am still waiting to get my MRI results back. There has been a delay.... apparently the results have been read, but not confirmed. I am hoping that I will get some answers tomorrow but am not going to get my hopes up.

Talk soon. . THANK YOU for your posts!

 
Old 02-11-2011, 10:53 PM   #5
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Join Date: Sep 2010
Location: Corona, CA USA
Posts: 21
LauraLee140 HB User
Re: Hepatic Hemangioma?? Or what?

You scans read almost exactly as mine did. I had to have a liver biopsy. All I can say is that PLEASE push to have the biopsy done at a hospital and not at an outpatient center. My biopsy went BAD - you can read my other post on my liver biopsy experience. My second biopsy was done laproscopically and it went really well! I was diagnosed with hepatic adenomas. Since I am experiencing pain and I'd like to have children at some point -- I'm having a liver resection this summer.

1. Push for GOOD doctors.
2. Write EVERYTHING down. (I keep a binder with copies of files from ALL doctors I've seen - whenever I leave the doctor's office I always ask for a copy of the paperwork - this has been the most valuable tool for me)
3. Seek second opinions.

 
Old 02-12-2011, 09:44 PM   #6
Senior Member
(female)
 
Join Date: Aug 2007
Location: NM
Posts: 124
neens7982 HB User
Re: Hepatic Hemangioma?? Or what?

I agree with Laura....

You need to get a diagnosis..if it could be focal nodular hyperplasia or even a hepatic adenoma.. Definitley go see a hepatologist...not a gastroenterologist, but a liver doc...or even a liver surgeon for that matter.

I had/have several hemangiomas on my liver. In 2007, I had the right lobe of my liver removed due to one that was growing. It began to touch my diaphragm...I had horrible shoulder pain. I was only 28 years old in excellent health....I was advised to stop birth control pills immediately even though there isn't true data to prove that hormones cause issues....

 
Old 02-13-2011, 05:59 PM   #7
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Join Date: Feb 2011
Location: MA
Posts: 2
Terbear4 HB User
Re: Hepatic Hemangioma?? Or what?

How did you make out? Do you have gallstones or a thyroid condition? I'm trying to figure out what causes these to continue to grow. I'm going in for another CT scan and I'll see how many I have and how large they are. I wish they could remove them by other means nd not surgery.

Terbear

 
Old 02-14-2011, 06:53 AM   #8
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Join Date: Feb 2011
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meemaw1 HB User
Re: Hepatic Hemangioma?? Or what?

Quote:
Originally Posted by CMF2011 View Post
Hello. I have never joined a message board before nor have I ever had any liver problems. . . until now. It started out in April 2010 when I started to get physically ill at the gym. At first I just thought I was working myself too hard, but no matter what I did, I would end up feeling nauseas, puking and getting an upset stomach--and this lasted for the better part of my day. I finally went to the doctor after suffering for 3 weeks with excruciating pain (at times).

At first, my doc thought it was ovarian cysts. I went for an ultrasound which came up with nothing. Since I was still having issues she thought that maybe it was an inguinal hernia and sent me for and ultrasound of my abdomen. It was during this time that they found 2 masses on my liver, one measuring 34x23x19mm and the other 30x22x14mm. I have been told that it is probably not anything to worry about.....

I have been researching hemangiomas ever since, unfortunately I don't feel like I ever find good information anywhere. I am so happy to have found this site/ forum.

Because they weren't sure what these "masses were" I was then sent for an RBC scan, which read - "No evidence of hepatic hemangioma. Further characterization is suggested with MRI."

By this time I have drove myself crazy researching liver disease and what this could be. I am going to supply some terms they used to describe my masses. If anyone could give me some input on what they think I would greatly appreciate it.

"Two heterogenous, slightly echogenic liver masses both showing slight vascularity; non specific appearance" (from the abdominal report)

"study does not demonstrate any discrete focal hepatic abnormality and are not likely to be hemangiomata. Differential diagnosis would have to include hepatic adenoma or focal nodular hyperplasia, with other neoplasm considered less likely" (from the RBC scan)

Has any one else had similar findings? I had an MRI a few days ago and hope to get the results by the end of this week. But in the mean time I am trying to find out what I am in for....

What are other peoples experiences? Do they have to do a biopsy? Do you have to get them removed?

While my daily vomiting has slowed, I am too full after eating (even though I eat less. I am also having trouble losing any weight no matter what I do), I suffer a sharp pain in my right side when doing anything physical, and am always sooo tired. I also feel pain in my right back side when I bend over (to tie my shoes or put my boots on for example)...Sometimes it feels like my side is throbbing... I'm so frustrated.

Help!!
Agree with them you really need toget checked out by a (Hep Doc) Liver specialalist...

 
Old 02-14-2011, 11:45 AM   #9
Junior Member
(female)
 
Join Date: Jan 2011
Location: CT
Posts: 22
erica7780 HB User
Re: Hepatic Hemangioma?? Or what?

Hi. I had an MRI contrast done 2 weeks ago. Found 2 masses. One 11.8 cm and one 4 cm. I have a dull ache in my upper right abdominal and pain in my right sholder. I was told this was focal modular hyperplasia. Went to suregon today and he won't Touch them due to their location on my liver so now I am going to a specialist in NYC next week. Since surgery is out of the question I heard there is a way to cut off the blood supply to the masses that will stop them from growing and shrink them. Anyone else heard of this?also the doc said I didn't need to stop taking bc pill.

 
Old 03-09-2011, 03:25 AM   #10
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Join Date: Mar 2011
Location: UAE
Posts: 4
katzeyz51 HB User
Re: Hepatic Hemangioma?? Or what?

This is my first post too.
Was diagnosed with a hemangioma a few years ago when I went down with a liver virus. It was found when the doctors did a MRI.
Recently, I was admitted with an infection in my colon. It was then that they discovered that it was growing and, to quote the dr, is "a huge swelling in right lobe of liver involving segments 6,7 and 8." They advised that I have elective surgery to remove it as soon as possible as it (enlarged liver) is pressing on my colon and has displaced my right kidney. Further growth of the mass, or a blow to that area, could cause rupture of the liver as it's only surrounded by a thin layer of liver tissue. That in turn could lead to massive shock from blood loss, leading to possible death! :-s
I have pain in that region, especially after eating(gall bladder was removed three years ago) and waistbands and wearing a bra can be problematic. as is bending down from the waist. I also get extremely fatigued and get occaisional nausea. The pain, when it comes, varies from a stitch like pain to quite severe stabbing pain in my side and I get a lot of pain in my colon when digested food passes through the compressed area.
At present, I'm waiting for my paperwork to be completed as the hospital I go to hasn't a specialised liver unit and I need to go to another hospital at the other end of the country to get treatment there.
In the meantime, I'm at home being excessively careful - I'm a known klutz with a history of falls in the house. Luckily (?) my arthritis has slowed me down - never thought I'd be grateful for that! Had a total knee replacement two years ago and the other one is badly in need of doing too. That will have to wait until I get this alien in my liver taken away.
At first, I was depressed and scared about what lies ahead. Like you, I've been searching the net finding information about hemangiomas. There's also the question "what if?" as cancer runs in my family. That's a scary one. Tests so far have shown that it is benign. Hopefully, it is just the hemangioma. Until I get to the other hospital and go through yet another round of tests, I'm trying to be optomistic.

 
Old 03-09-2011, 04:08 AM   #11
Junior Member
(female)
 
Join Date: Feb 2009
Location: Buffalo,NY,USA
Posts: 26
ChelleRose HB User
Re: Hepatic Hemangioma?? Or what?

I too worried about cancer cause it runs in my family but when I had my tumor all my bloodwork was good. I can tell you the the surgery is not too bad the first week is a little rough but then it gets better. I had hand assisted laproscopic surgery. Good luck with everything.

 
Old 03-09-2011, 09:09 AM   #12
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(female)
 
Join Date: Oct 2010
Location: Pittsburgh, PA (USA)
Posts: 5
Sass1973 HB User
Re: Hepatic Hemangioma?? Or what?

My reports mentioned something similar and I, too, was diagnosed with hepatic adenomas. After my MRI, they did the liver biopsy and then it was decided to remove the largest tumor (11cm). I had my liver resection in December 2010 and I'm doing good. The surgery was not as bad as I had anticipated. Doctor is going to monitor the remaining adenomas with bi-annual MRIs and watch for any growth or changes. Regardless of what your diagnosis is, I would recommend getting a 2nd opinion. Also, ask questions...a lot of them. It's the only way to feel comfortable with everything. Good luck!

 
Old 03-19-2011, 02:03 AM   #13
Newbie
(female)
 
Join Date: Mar 2011
Location: UAE
Posts: 4
katzeyz51 HB User
Re: Hepatic Hemangioma?? Or what?

Quote:
Originally Posted by CMF2011 View Post
Hello. I have never joined a message board before nor have I ever had any liver problems. . . until now. It started out in April 2010 when I started to get physically ill at the gym. At first I just thought I was working myself too hard, but no matter what I did, I would end up feeling nauseas, puking and getting an upset stomach--and this lasted for the better part of my day. I finally went to the doctor after suffering for 3 weeks with excruciating pain (at times).

At first, my doc thought it was ovarian cysts. I went for an ultrasound which came up with nothing. Since I was still having issues she thought that maybe it was an inguinal hernia and sent me for and ultrasound of my abdomen. It was during this time that they found 2 masses on my liver, one measuring 34x23x19mm and the other 30x22x14mm. I have been told that it is probably not anything to worry about.....

I have been researching hemangiomas ever since, unfortunately I don't feel like I ever find good information anywhere. I am so happy to have found this site/ forum.

Because they weren't sure what these "masses were" I was then sent for an RBC scan, which read - "No evidence of hepatic hemangioma. Further characterization is suggested with MRI."

By this time I have drove myself crazy researching liver disease and what this could be. I am going to supply some terms they used to describe my masses. If anyone could give me some input on what they think I would greatly appreciate it.

"Two heterogenous, slightly echogenic liver masses both showing slight vascularity; non specific appearance" (from the abdominal report)

"study does not demonstrate any discrete focal hepatic abnormality and are not likely to be hemangiomata. Differential diagnosis would have to include hepatic adenoma or focal nodular hyperplasia, with other neoplasm considered less likely" (from the RBC scan)

Has any one else had similar findings? I had an MRI a few days ago and hope to get the results by the end of this week. But in the mean time I am trying to find out what I am in for....

What are other peoples experiences? Do they have to do a biopsy? Do you have to get them removed?

While my daily vomiting has slowed, I am too full after eating (even though I eat less. I am also having trouble losing any weight no matter what I do), I suffer a sharp pain in my right side when doing anything physical, and am always sooo tired. I also feel pain in my right back side when I bend over (to tie my shoes or put my boots on for example)...Sometimes it feels like my side is throbbing... I'm so frustrated.

Help!!
I have similar symptoms. I'm 56 years old. Pain in the right side after eating and then severe pain when digested food passes along the colon where my enlarged right lobe is pressing down on it. Nausea is a problem if I have a meal that has a high fat content. such as a meat dish. so i try to avoid meat as much as possible and follow a high fibre diet - lots of fruit and vegetables, and as low fat as possible (though I can't give up butter on my toast for breakfast :-) and compensate by having a large salad with it and every meal). Also have pain while bending and wearing a bra or an unelasticated waistband is very uncomfortable at times. I'm living in kaftans at the moment. My belly has become distended and the area over the liver is very tender. I can feel pressure on my ribcage where the liver is now pressing against it. Sitting upright for a long period causes pain in the liver area, both front and back.
I don't seem to have any problem with liver function and there is no jaundice, thank
God. ALT is slightly over normal. Dr's have assured me that the growth is benign. All tests for cancer have proven negative but they are reluctant to do a biopsy as they said they don't have the expertise for specialized liver surgery and want me to go to a specialized liver unit at another hospital. I did hear them saying that it hadn't taken up the contrast medium during the CT scan, so it is possibly an adenoma, though they've written that it's a hemangioma on the referal letter and report.
Fatigue is horrible. I get so tired very quickly just carrying out normal household tasks. Thank God for my kids (all grown up, three living at home with me plus a daughter in law and baby grand daughter). They do all the heavy household tasks for me. My computer chair has proved invaluable as I use it to scoot around on it with the vaccuum cleaner to clean:-) They also got me a bar stool to use in the kitchen as I love cooking and it allows me to sit at the cooker and sink - standing at either gives me severe back pain partly caused by a displaced kidney from the enlarged liver and by degenerative disks in my lower back which is also also affected by arthritis.
I'm coping by pacing myself and resting when I feel the fatigue hitting. I've learned that any outings mean a day of complete rest the day after. Yesterday I was at an event for Down's syndrome that my two daughteres were volunteering for. Spent most of it in a comfy chair in a coffee shop reading :-) Today is a rest day as I'm totally wiped out.
Still waiting to see a dr at the hospital I've been referred to - problems with my paperwork (need to get my marriage certificate attested in order to get a paper I need for the health card required to attend this hospital and, as I was married in the UK, it needs to be sent there - bureaurocracy at it's finest :-s), so I'm looking at another month before I get to see the liver dr.
For pain, I'm stuck with paracetamol as anything else will cause constipation. Not very effective but it does take the edge off it. I also give myself reiki for the pain and it does help.
I was on birth control until I had a hystorectomy 20 years ago and was on hormone therapy for a while. I suspect that the hormones may have triggered off the growth as I never had problems before then. I was taking a multivitamin with soy in it for menopause symptoms but have stopped taking that and have cut out all soy products in my diet as they contain plant oestrogens.
I never thought I'd see the day that I would be looking forward to having major surgery, but I can't wait to get this alien (my name for it) out of my liver and get back to a normal life.
I know the surgery is a biggie and it will take a while to recover but I have a newly fledged business (started with my eldest daughter) to get on with and at present I'm stuck at home instead of running around to the factories getting stock made for our shop. At least I can concentrate on the design side and the handcrafting as they are jobs I can do from the sofa, my sewing table and my desk.
Have to stay positive :-) Just a major hiccup in life's path.
Good luck with your "aliens" :-D Take good care of yourself. God bless.

 
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