Tufted Angioma - Vascular Birthmarks Foundation Forum
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Old 09-26-2007, 06:21 PM
MommyB MommyB is offline
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Join Date: Sep 2006
Posts: 1
Default Tufted Angioma

My son is 2 1/2 and was diagnosed one year ago with a tufted angioma on his lower leg after a surgical biopsy. He now appears to have a new tumor on the inside of his knee on the same leg. It is following the same pattern as the first - appears like a bruise but "spreads" then has a little tumor inside. I think that we are catching this one much earlier though b/c we don't assume that a bruise is a bruise anymore (although at this age he is constantly covered in bruises!). I pressed on the spot and he did not even flinch, so I am pretty sure it is not a bruise. When I called our doctor, he said it was probably the same tufted angioma. That concerned me b/c the other one is on his shin - which means that it goes from his shin to the inside of his knee. He has complained of knee pain off and on over the past couple of weeks, but not near where the new or old birthmark appears to be. He isn't three yet, so it is hard to know how well he is communicating the location of the pain. Also - he has a cafe au lait spot that was present at birth. No one seems to think it is related to the tufted angioma, but I thought I would mention it.

I know that tufted angiomas are pretty rare - but does anyone have any experience with this? When we received the diagnosis and the tumor seemed smaller on follow-up, we thought that was the end - he would not have any more tumors.

We are at one of the top childrens hospitals, and I fell that we are getting good care. I could not get an appointment for 6 weeks, though, so I am interested in some real life experience in the meantime. Thanks.
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Old 09-26-2007, 11:09 PM
missy missy is offline
Join Date: Apr 2006
Posts: 1,794

I just wanted to say welcome. I have no advice or experience in this area, but I hate for posts to just sit there when I know other parents will help you out soon.

So, welcome!

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Old 09-30-2007, 08:19 AM
Nicolefila Nicolefila is offline
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Join Date: Sep 2007
Location: I am from Tucson Arizona
Posts: 16

Hello and welcome. I have a hemangioma that started in my lower leg and is now traveling all the way into my stomach. Although when pressed on, my hemangioma hurts, this may be different for your son. I would defnately get the other mark checked out too. It can't hurt.
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Old 10-10-2007, 02:10 PM
rachael shields rachael shields is offline
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Join Date: May 2007
Posts: 12

Hi there,

Just to let others know I have emailed Mommy B personally about our Hamish and his tufted angioma - she was kind enough to email me. I have only just read this post tonight!

I have recommended that she get an MRI asap for precautionary reasons as much as anything. I wish this had been done with Hamish back when was first diagnosed. Then they can go from there...I don't recommend wait and see with Tufted angiomas - they grow slowly and infiltrate!
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