Vascular Birthmarks Foundation Forum - View Single Post - Venous Malformation
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Old 11-06-2006, 06:16 PM
dani617
 
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Default Response to post re: Venous Malformation

Hi. I am responding to the post regarding your daughter, Christy. Our daughter has an extensive glomous venous malformation which covers her chest, stomach, pelvis, arms, left leg down to her foot & toes. She is almost 3 1/2 years old. She has been undergoing embolization procedures with Dr. Robert Rosen in NYC for the past year or two. She has the procedures done every 3 months or so. The reason we started with them was because she was limping and favoring her right leg because she was having pain in the left leg/foot. They have also treated behind the knee because they were concerned about the ligaments, joints of the knee. We were told it is best to treat these types of malformations when the child is small as the malformations tend to grow as the child grows. Her left leg is longer than the right and she currently sees a pediatric orthopedist for bone age x-rays and bone scanograms every 6 months so they can monitor the growth of that leg vs. the other. Her left foot is also much bigger than her right to due to the malformation. She had a procedure 2 weeks ago and has been running around on it already for the past week already. We were also advised that it is best to have these procedures done when they are young b/c they bounce back so much quicker than adults (which is definitely true). I am not sure if you were told but there are certain times that the growth of the malformation will speed up, i.e., puberty, pregnancy, etc. I am not sure where you are located, but all of our daughter's doctors are in NYC, however, we have been to Boston Children's Hospital and Philadelphia Children's Hospital as well. I do have one question for you given your daugther is older. Has the growth of the malformation slowed down at all since she was younger or is it getting bigger at the same rate? Does she tell you what exactly it feels like when it hurts? Feel free to contact me if you have any questions. We also would appreciate any info you have for us since we do not know anyone with this condition (or anyone who has ever heard of it!)
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