Liver hemangioma / venus malformation? - Page 2 - Vascular Birthmarks Foundation Forum
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  #11  
Old 10-21-2006, 04:38 PM
Eisnaugle
 
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Default Results

Garry - I'm curious how things went on 10/2. I was just recently diagnosed with multiple hemangiomas - some fairly large. Will be visiting a couple of liver centers over the next few weeks for sugical consults. Not sure what direction I will take yet as I have no pain (found them while examining me for football injury - cracked rib / source of pain) - but my GP suggested having someone else look at the ultrasound and CT results that was expert in this field. Thanks for any feedback --

Bill E --
Herndon, VA
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  #12  
Old 10-30-2006, 12:43 AM
maryjane
 
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Default giant hemangioma

Hello,

I am a 46 year old woman. Back in 1989 I was pregnant with my first child. I went for my 1st appointment and was told while the doctor was feeling around my abdomen that it felt like my liver was enlarged. To make a long story short it was found that I had a large caverous hemangioma. Prior to this I had always been healthy and felt well. As to my swelling abdomen I just thought I had gained weight. Well I lost that baby. The hemangioma continued to grow and in 1992 I had a liver transplant. My liver weighed 25 lbs. Opposed to the normal 4-5 lbs a healthy liver should weigh. Since then I had two children in 1995 and 1998. Both healthy children. I have felt well. About 6 years ago it was found that my transplanted liver now has hemangiomas in it also. I had origianally been told that hemangiomas were birth defects and there was no danger of getting another one in my new liver. Now I think that for some reason my body has something out of wack that is creating them. Why else would I have them again in a completely different liver? Well they have been keeping an eye on it. I had an MRI on it a couple weeks ago. The doctors think it has grown some. I will be having a liver biopsy in a week to make sure it isn't cancer. I am not worried about it because 2 years ago when they did a biopsy they said then it was a hemangioma. I have not had any pain, not with my original liver or my now new liver. Well yes I have had slight discomfort recently with this hemangioma. I have felt a slight pulling sensation on my right side on my waist. Being this is also about where I have an incision from the transplant I thought it was possibly scar tissue but now I think maybe it could be the hemangioma. Am not sure. Anyway I hope that by posting this I do not scare anyone. Remember everyone is different. and I think my case is very unusual. I was also hoping to maybe get some info as to what kind of treatment could possibly be done to shrink these lesions if anyone else has maybe had any type of similar experience.

maryjane
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  #13  
Old 04-05-2007, 02:15 AM
macklo
 
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Unhappy hemangioma in the liver??

Hi I just found out today that I have this condition. Found during a cat scan for ovarian cancer...negative on the ovaries thank god but now I am scrambling to get my head around this new worry. I have felt fatigue for so long, leg swelling,pain in abdoman etc... Has anyone else had these symptoms with this?
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  #14  
Old 04-05-2007, 10:23 AM
JeZouMaarIrisHeten! JeZouMaarIrisHeten! is offline
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Join Date: Mar 2007
Location: The Netherlands
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Default

Maryjane: I'll keep my fingers crossed for you .
Macklo: I'm sorry to read this. I'll hope you will be better soon, and that you will be fine again shortly.

Doctors told me yesterday that my cystic lymphatic malformation maybe is located in my kidney's or my bladder. I hope that it isn't, I will be screwed if it is. I'm in good shape, I excercise a lot, my health is great.. But the past time my cystes and lymhpatic malformation hurts, and I think it isn't going well. 4th of april was the worst day of my life!
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  #15  
Old 10-09-2007, 01:19 PM
Melissa67 Melissa67 is offline
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Join Date: Oct 2007
Posts: 1
Default Not a birth defect!

Regardless of what is written by the medical community in books, liver hemangioma's ARE NOT birth defects. I did not have one prior to 2000 when I had a CTscan, however, I did have one in 2001 (2 cm).

I have researched the heck in what can cause liver hemangioma's. The majority who will get liver hemangioma's are women. What I have found by my own research is that either high estrogen levels or high copper in the body can cause liver hemangioma's. When a rat was given estrogen it grew a liver hemangioma but when given tamoxifen the hemangioma had shrunk!! Interesting, eh? Men can also get a liver hemangioma and of course they too, have estrogen in the body which can elevate as well as testosterone in women can elevate.

I would get tested for a salivary hormone test, not a blood test. This will determine if you have estrogen hidden in the tissues in your body. I get tested in one week and will post my results.

Another reason, I have read, is from having high copper levels in the body. This can be determined by a hair analysis which I will be getting after I learn the results from my hormone results. High copper can be the result from eating high copper foods, IUD, copper pipes in the house, birth control pill and many other factors. Check your vitamins as well!! Don't take added copper if you have a liver hemangioma!!

So check back here in a few weeks for results. I have been researching this probably longer than any doctor! haha

Why would a woman, who posted on this forum, get another liver hemangioma after receiving a liver transplant because she first had had a hemangioma??? One of those two things, that's why!!

I have been researching this because I found that my liver hemangioma DID NOT grow while being pregnant which I found that Progesterone tends to go higher than estrogen levels. Mine only starting growing again after a few months once I had given birth which my hormones starting going back to 'normal'.

Melissa
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  #16  
Old 12-06-2007, 10:43 PM
mary miller mary miller is offline
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Join Date: Dec 2007
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Default Me too

I am a 45 year old female and discovered my 4cm hemangioma 4 years ago. Although I am asymptomatic, I remind myself that mine is exposed (hanging off the bottom of my liver). There is no protection from my rib cage...as I was told by the person giving me an ultrasound 2 years later after my CT.

Although, I have read every article, and also question the orgin of how I developed this, is anyone else concerned with rupture? I had fallen over the bathtub (while cleaning) and hit the shower railing...luckily my thigh received the bulk of the impact, which I still have an indentation after 3 years. I'm wondering what would have happened had I fallen over the area with the hemangioma.

Does anyone else share this concern?
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  #17  
Old 06-13-2008, 03:43 PM
jbennett jbennett is offline
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Join Date: Jun 2008
Location: maryland
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Default surgery vs. transplant

hi, i am new to this site. glad i found it. i had a liver hemangioma discovered about 10 yrs ago. it was only about 5 c.m. then. last year i had a ct scan for something else and found it grew to about 21 c.m. i am now trying to decide if i should have the surgery or not. i went to a liver specialist and was told that i needed the surgery a.s.a.p. or i would be looking at a transplant. what they want to do now is to go in and cut off the right side from the left to let the left side grow then 4 wks later have the right side removed. i am so scared. my liver is so enlarged that it pushes my right kidney down. i think my blood tests were ok but i had a d-dimer test that was at a high rate. i sometimes hear that estrogen replacement could have caused it to grow. i also am not sure about this size turning cancerous. my son was 26 when he passed away from a rare cancer in his liver. it was called epithelioid hemangioendothelioma, which is a rare soft tissue sarcoma. notice the hemangio in this cancer. just yesterday i had another ct scan to followup and blood work. i won't get these results til next week.
anyone out there with information for me, please post or contact me at jbennett57455@msn.com
thanks,
josie
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  #18  
Old 06-18-2008, 01:17 PM
Laura F. Laura F. is offline
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Hi. I was just diagnosed with a hemangioma on my liver yesterday. They told me I was probably born with it or could have gotten it from birth control pills I used years ago. I also had a stillborn birth last year that, after reading your blogs, may have caused it also. I have a stabbing or pinching pain around my right rib cage which I have struggled with for the past couple months and they are not sure what is causing it, though it could be radiated pain from my mid-back, which is also out of whack.
I just wanted to post a thanks for helping me to understand more about this condition and how it could affect people differently both physically and emotionally.
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  #19  
Old 10-14-2008, 10:04 PM
norcal2008 norcal2008 is offline
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Join Date: Oct 2008
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Default Feeling foolish and frustrated

Last year I began feeling pain in my liver area. I was told I have an enlarged liver and was subsequently diagnosed with Nonalcoholic Fatty Liver Disease (triglycerides @1000). The pain was so uncomfortable at times I finally went to the ER. They gave me a CT and found a 4.3 cm hemangioma in the left lobe of the liver. That was a year and a half ago. No Cts or ultrasounds since. Anyway, I've been doing everything I'm supposed to do in regards to the fatty liver and my triglycerides are down to 240. However the pain has not subsided substantially by any means and I am taking 15mg MsContin to function normally. The docs kept saying the fatty liver was causing the pain, not the hemangioma. So when I got my test results for the triglycerides, I was ecstatic at first. Then I realized, hey - if the liver is shrinking, shouldn't I be feeling less pain? I am so tired of running into doctors that act like I'm unusual for feeling this pain and after reading some of your posts, I don't think I should be made to feel this way. 2 years ago I was normal and active. Now I wake up with pain and go to sleep with pain - even with the pain meds. Sometimes stabbing pain will cause me to go the ER for relief. My activity is altered because I can't put pressure on my abdomen without it hurting intensively for hours afterwards. I absoutely DREAD my Dr. visits because I know they will palpate my abdomen. But I'm no longer sure I agree with the doctors that the fatty liver is the sole cause of this. Any advice on what I should do or say to them?
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  #20  
Old 01-08-2010, 09:06 PM
waller237 waller237 is offline
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Join Date: Jan 2010
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Default Liver Hemangioma And Pregnancy Issues

Hello, I am 25 and was diagnosed with a 4 cm liver hemangioma. My hepatologist (liver specialist) told me that we should just watch it to see if it's growing. My only symptom is persistent nausea. He told me it could not be from the hemangioma but, through my research nausea is one of about 5 symptoms!
I am awaiting the results of my 2nd CT scan to monitor it's growth. My primary Dr. told me that he did not recommend pregnancy as the increase in hormones could cause it to grow and any hemangioma 10cm or more would require surgery. He also told me that I couldn't be on birth control b/c it too contains hormone and therefore cause growth.
I have a 2 yr. old son (which I was extremely ill while carrying and on complete bedrest) and unfortunately had a miscarriage last year. After reading many posts (2 of which also mentioned the loss of a pregnancy) I am concerned that this hemangioma could cause pregnancy issues such as loss?!?! We want to try for a 2nd child but, now I am worried that we could lose another child. Is this crazy? Are hemangiomas and pregnancy issues (other than hemangioma growth) linked?? Are hemangioma's and nausea/vomiting issues during pregnancy linked???
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