Vascular Birthmarks Foundation Forum - View Single Post - Hemangioma or Venous Malformation?
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Old 03-04-2004, 02:39 AM
Concerned Parent
 
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Default Re:Hemangioma or Venous Malformation?

Dear Just Harmony-
I would recommend another opinion before following through the removal of anything. My daughter was diagnosed with Arteriovenus Malformation at the age of three. When she was born she had a large hemangioma marking on her left leg. I was informed by the hospital that the marking was a permanent bruise from where she sat on my hip while in the womb. I trusted the medical professionals and received documentation from them regarding the marking so I would not get turned into child services. Needless to say, this was inaccurate information. Right before my daughters third birthday we noticed a large mass above her left knee. It was as if it came up overnight. I scheduled an appointment with a Pediatric Surgeon who was very informative and up to date on treatments, but was not able to perform surgery on my daughter. My daughter has a type of malformation that can only be removed if medically necessary. Otherwise, the only option for her is treatment called sclerotherapy. We currently work with a Pediatric Radiologist who specializes in this type of procedure. Since the malformation was undetected for so long it has all grown with her body. If removed now, the muscle in her left thigh will have to be removed and she will never walk again. The treatments are not at all painful. The only difficult part is afterwards trying to keep a 6 year old's leg still for 4 to 6 hours. Anyway, my point is to be sure you have exhausted all possible leads before removing the mass from the body. I am not a medical professional, but over the years I have learned a lot about malformations in the lower extremity. I might add, the information is limited when referring to anything below the waist. This web-site has been most informative. Not to mention all of the surgeons we have seen throughout the states. Best wishes to you and your family.
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