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Old 03-03-2010, 05:10 PM
Jude Susie Jude Susie is offline
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Momof6kiki : I don't know if you are still checking this post...It's been a few months since your post. However, I wonder if you have made progress with your son....
I, too have a Vascular Malformation on my upper chest (I am a 36 yr old female) as well as a Hemangioma on my left cheek. From what I have been told in the past, this is an unusal combination. The chest is also a unique location for a VM, though it sounds your son's is more on his collarbone/neck.
As a parent of 2 young children, I understand the fear you must have over this. My whole childhood, the VM was referred to as a "cyst", or "lymphangioma", it wasn't until the 1990's that they determines it was a Vascular Malformation (thanks to advances in MRI's and other technology)
I had sclerotherapy on my VM in 2002 and it was quite successful. I never treated the Hemangioma, as it resolved itself and is hardly noticable nor painful. Mine was subcuatneous, and was worst at age 1.5 / 2. Some Dr's wondered if the two were somehow "feeding each other", but nothing was ever discovered. i'd like to hear how things go, and what they say about having 2 such malformations.
I was treated at Children's Hospital in Boston, MA. Over the years, II was seen by Dr. Lewis (pediatric) Dr. Upton (vascular surgeon) and finally Dr. Patricia Burrows. She was amazing, as was the other team of Dr's I dealt with. They have some sort of group there that deals specifically with Pediatric Vascular Anomalies.
Having lived through 36 years of this, I know, the referrals and insurance info are enough to drive you crazy. Be persistant, Be your son's advocate, and don't let them brush you off! Good luck. please feel free to email me any questions you may have about the VM or H, and how they changed over time. I know each case is different, but it may be comforting to know someone else is out there tha thas had similar diagnosis and IS HEALTHY AND living a WONDERFUL LIFE!!!
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