swollen/enlarged PWS - Vascular Birthmarks Foundation Forum
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Old 09-25-2008, 02:04 AM
stang8psi stang8psi is offline
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Join Date: Sep 2008
Posts: 1
Default swollen/enlarged PWS

my name is Kevin And i am a 25yr old male with a pws on lower right ankle area and some up my right upper thigh. Now i think i have been getting the wrong diagnosis with what has been happening over the past few years. The lower right ankle where the PWS is has rapidly grew in size and is now swollen as not gotten any smaller but actualy larger, A vericus vain has apeared also between my calf and the back of thigh. I went to a radioligist and a dermatologist, had multiple M.R.I. And they say it is a hemanogioma but i don.t think it is.... My Birthmark ispurple/deep maroon color and Gets hot to the touch, and sometimes fells like my leg gets tired faster(sounds funny)

Does Anyone know what is happening to my leg is it maybee KT syndrome or Venous Malformations????????
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Old 10-05-2008, 03:59 PM
juliemn juliemn is offline
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Join Date: Sep 2004
Posts: 95

At this point, I would find a doctor that either specializes in vascular malformations or is knowledgeable in the different types of vascular malformations. I would start with the specialists listed right on the home page here. Or, check out the list of doctors by state. There may be one closer than you think.

It's hard for anyone here to speculate on your condition as there are so many different factors to your individual diagnosis. It's so important to get an accurate diagnosis from a specialist. Use the resources available to you right here on the VBF website. I can tell you from personal experience that it is not a time wasting effort. In fact, I owe my sons life to one of those specialists.

Hemangioma is sometime's used to describe all different types of vascular malformations in the clinic setting. Heck, our family doctor who knows better has to use it sometimes because the clinic doesn't have any coding for what the actual diagnosis is. That's caused a number of insurance mix ups for our son. It can be very frustrating.

Julie H
Mom to Ben (multiple AVM's, PWS, SWS)
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Old 10-26-2008, 09:16 AM
Aussie legs Aussie legs is offline
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Join Date: Mar 2007
Posts: 17

Hi Kevin, my name is Ann I have a PWS on both my legs and ankles, I to have swollen ankles and varicose veins which I had removed about 4 years ago, I have notice my ankles getting larger over the past 5 years, I have also wonder if maybe I might have K T syndrome, I asked my laser surgeon and she couldn't tell me. My ankles have always been larger than the normal person but over the past few years they are becoming really fat. When I had my veins removed I bleed alot and I thinks that is due to the birthmarks. This probably doesnt help much but I thought I would let you know that there is someone else with large ankles.
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