Vascular Birthmarks Foundation Forum - View Single Post - What is Microcystic Lymphatic Vascular Malformation
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Old 04-09-2009, 12:58 AM
Joshua'smom Joshua'smom is offline
Junior Member
Join Date: Aug 2006
Location: AZ
Posts: 3

My son has microcystic lymphangioma. It is basically tumors of the lymph vessels with teeny tiny blisters. My son's is located in his neck, cheek, tongue, roof of his mouth, and his parotid gland. The cysts form because the lymph vessels just end. They don't dump into anything except the surrounding tissues. So the lymph fluid collects. Our Dr., a Lymphangioma specialist says that the most dangerous thing is for the cysts to get infected. The infection can get into the bloodstream and cause serious problems, even death. The lymphangioma will usually increase in size with a viral infection because the lymph system helps to fight off infections and produce more lymph fluid. For my son we have to also worry about the part in his neck closing off his airway. Antibiotics and steroids are the basic treatment. I had one ENT doctor try to prescribe an Epi pen, but that would not do anything to help open his airway. That is designed to counteract histamines. He also has to have the part in his mouth lasered periodically because the cysts start to hurt him and they get large enough to interfere with talking. Plus we have to worry about them bursting and then getting infected. He is getting ready to have his 4th laser surgery. He is averaging a surgery every 2 years, but the doctor said that it may have to be done every 6 months. The need for surgery is something that can not be predicted.
I hope this info helps you out. We have been dealing with this for 10 years. We had to go to AZ for 2 years with the Army and I had to educate the doctors up there.(Which is something you may eventually have to do) I knew when we left that there wasn't a specialist in the state.
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