Lymphangioma Circumscriptum

[evansmommy1206]

My baby boy was born with 2 blister like spots on his face, one on each cheek.  He had a biopsy done at 5 months and the dermatologist told us they were lymphangiomas.  He said their is nothing to worry about and that they could do cosmetic surgery when he was older.  
I am concerned now because I have been reading about the different types of lymphangioma's, and it is scary.  

My question is...Does anyone have personal experience with this type?  Small raised blister like sacs.  And, are their long term affects?  Any information is very much appreciated.  Thanks!!!!

[leighburnett]

Hi!  I am a 27 year old female and I have lymphangioma circumscriptum.  It started appearing when I was about 6 months old and I was diagnosed at 3.  The lymphangioma circumscriptum is located on my side, from my shoulder blade down almost to my belly button.  

I have had several surgeries on it.  When I was very young, the doctor we went to chose to perform laser surgery.  It did not work and just made a lot of scar tissue.  We found a new surgeon and my first surgery with him was when I was 11 years old.  He chose to excise (cut out) the area and that has been the only type of surgery that has actually worked for me.  

My last surgery was in the summer of 2000 - over nine years ago now.  They almost got all of it the last time (but there is no way to ever get ALL of it).  I've had a few places come up recently and I will most likely have to go in for surgery again next year.  

Overall, I must say that I have been able to live about as "normal" a life as possible.  There have not been any long term complications, other than having surgery every so often.  But of course, that's "normal" to me now, too. :)

The internet has some pretty scary stuff on it dealing with this.  I really can't say that I have had that many problems, though.  The main problem that I have is that once they show up on the surface of the skin, they bleed and that shows up on my clothes.  (It doesn't hurt when they bleed - it's just frustrating because since I don't feel it at all, I don't know about it until someone says, "What's that on your shirt?")  Sometimes they can be sore, depending on exactly where they are.  

I hope all of this info helps!  If you have any questions, or if you just need support, please feel free to contact me!