Originally Posted by crctmom
I just found this site and am excited for the info I've read but am wondering if there's anyone out there with a child that has Lymphangioma in the leg? My son was born with a lump in his right calf which was surgically removed and then diagnosed as Lymphangioma. He is now 5 1/2 years old and a new lump and bruising has appeared in the same location. The lump is larger this time.
I'm trying to be prepared for our visit to the oncologist next week. I believe it was classified as macro as it was all inside and cavernous, I believe. An orthorpedic surgeon did his 1st surgery but I don't believe had any experience with Lymphangioma but we didn't know the dx until after surgery.
From what I'm reading, sclerotherapy is the treatment to go with but then I'm finding it eventually leads to another surgery perhaps.
Does anyone else have experience with the extremities? I'd love to gather as much info as possible to make informed decisions once oncology gives their suggestions.
My daughter has an LM on her neck and is being treated by Dr. Shiels in Ohio.
I am pretty sure he treats and has experience with extremeties. He may be able to help. My research that I did a year ago convinced me that Dr. Shiels has the highest documented success rate that is peer reviewed, of anyone else I could find and LM's are one of his specialties. Click this link to read about his work, http://188.8.131.52/pdf/LymphaticMal...nTreatment.pdf