Lymphangioma?? - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment

Dr. Linda Rozell-Shannon, PhD President and Founder

   VBF 20th Anniversary Gala Friday, October 10, 2014 in New York City

VBF 2014 Annual Conference Saturday, October 11, 2014 in New York City

Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Hemangioma Help > Lymphatic Malformations (also known as cystic hygroma and lymphangioma)

Thread Tools Display Modes
Old 12-07-2012, 02:37 AM
shelly143 shelly143 is offline
Junior Member
Join Date: Dec 2012
Posts: 2
Default Lymphangioma??

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????
Reply With Quote
Old 12-07-2012, 11:59 AM
missy missy is offline
Join Date: Apr 2006
Posts: 1,727

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.

Reply With Quote
Old 12-08-2012, 12:52 AM
shelly143 shelly143 is offline
Junior Member
Join Date: Dec 2012
Posts: 2

That would be AMAZING! I'm in Southern California
Reply With Quote
Old 02-16-2013, 06:59 AM
sweet pea sweet pea is offline
Senior Member
Join Date: Jul 2006
Location: Southern California
Posts: 111

Originally Posted by shelly143 View Post
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.
what makes you different, makes you beautiful
Reply With Quote
Old 02-26-2013, 06:30 AM
hadriya9091 hadriya9091 is offline
Junior Member
Join Date: Feb 2013
Posts: 1

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.
Reply With Quote
Old 03-21-2013, 07:53 AM
Janine02 Janine02 is offline
Junior Member
Join Date: Mar 2013
Posts: 1

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.
Reply With Quote

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump