Tufted Angioma - Vascular Birthmarks Foundation Forum
  Vascular Birthmarks Foundation Hemangiomas  |  Port Wine Stains  |  Vascular Malformations  
VBF logo

1994 - 2014
Celebrating 20 years with
75,000 networked into treatment.
Donate to VBF    Shop VBF Products

Go Back   Vascular Birthmarks Foundation Forum > Additional Resources > General Resources

Reply
 
Thread Tools Display Modes
  #1  
Old 09-26-2007, 05:21 PM
MommyB MommyB is offline
Junior Member
 
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.
Reply With Quote
  #2  
Old 09-26-2007, 10:09 PM
missy missy is offline
Administrator
 
Join Date: Apr 2006
Posts: 1,724
Default

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!

Missy
Reply With Quote
  #3  
Old 09-30-2007, 07:19 AM
Nicolefila Nicolefila is offline
Junior Member
 
Join Date: Sep 2007
Location: I am from Tucson Arizona
Posts: 16
Default

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.
Reply With Quote
  #4  
Old 10-10-2007, 01:10 PM
rachael shields rachael shields is offline
Junior Member
 
Join Date: May 2007
Posts: 12
Default

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!
Reply With Quote
Reply


Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Venous Angioma Scout AVM Help and Resources 3 04-03-2005 04:23 AM