Helen - posted on 08/27/2013 ( no moms have responded yet )
My daughter, Amanda, is now 25 years old. When she was born she was diagnosed with multiple hemangiomas. They were on the surface of her skin. We did not know she had any internally until 2009. She has had numerous surgeries to remove them when they become a problem. We saw Dr. Milton Waner and he told us she has venous malformation, not hemangiomas. She now has them internally, mainly behind the abdominal area. They are pushing on her kidneys, stomach, and other organs. It is too dangerous to remove them as there are too many blood vessels. We have tried schlerotherapy by an interventional radiologist to try to shrink them by injecting alcohol. This was only somewhat successful after many very painful procedures. Now we do not know where to turn. She has been living off of heavy pain medications for almost 4 years now. She has also developed blood clots due to the masses. Any advise anyone can give us at this time would be greatly appreciated. Thank you.