Vascular Birthmarks Foundation Forum

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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (
-   -   Lymphangioma?? (

shelly143 12-07-2012 02:37 AM

where to start..

I am 25 years old. At the age of 2 my parents found that I had a lump on the upper right abdomen area under my arm, on my ribs. At the age of 17 I underwent a surgery where they cut me open and found that it was full of clear liquid and dx with lymphangioma. To back track a little, It was a lump with clusters of pink blister like things on the outside of the skin. After the surgery the lump was gone however the pink clusters of blisters were still there (which I don't mind as much as the lump). A few weeks ago the lump came back full force and I have been seen by 3 different doctors and each time I get the same response...they step back with the most shocked look on their face and tell me they have no idea what it is. I have done extensive research on the lymphangioma and I believe my first dx was correct. I'm now worried because I don't know how big these get, it has started to bruise and hurt with movement. I feel as if I have hit a brick wall and can't seem to get any doctors to take my case serious. Does anyone have anything similar or know anything about this????

missy 12-07-2012 11:59 AM

Hi and welcome!

Where are you located? You do need to be seen by someone with experience in vascular birthmarks. We can help you find someone.


shelly143 12-08-2012 12:52 AM

That would be AMAZING! I'm in Southern California

sweet pea 02-16-2013 06:59 AM


Originally Posted by shelly143 (Post 26095)
That would be AMAZING! I'm in Southern California

I also live in Socal and see Dr. John Reinisch in Los Angeles. He did my last surgery and did an amazing job with it all. He works through Cedars Sinai, if you want to look him up.

I'm 23 with the same diagnosis, but my LM is located on my right hip and thigh. I was originally diagnosed with Lymphangioma as a child, but the term is kind of out-dated now(-oma means tumor and this is not a tumor). I would love to talk to you if you are willing.

hadriya9091 02-26-2013 06:30 AM

I don't know that you're going to find anyone to answer your question quickly. If you go over to the ask the expert section and write in to Dr. Linda, she may be able to help you find someone to talk to.

Janine02 03-21-2013 07:53 AM

Lymphangiomas are uncommon, hamartomatous, congenital malformations of the lymphatic system that involve the skin and subcutaneous tissues. The classification of lymphangiomas lacks a standard clear definition and universal application, in part because of the nature of lymphangiomas, which represent a clinicopathologic continuum. The classification most frequently used divides these lesions into 2 major groups based on the depth and the size of these abnormal lymph vessels. The superficial vesicles are called lymphangioma circumscriptum. The more deep-seated group includes cavernous lymphangioma and cystic hygroma. Many categorize cystic hygroma as a variant of cavernous lymphangioma.

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