PWS on left arm and shoulder w/ swelling - Vascular Birthmarks Foundation Forum
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Old 07-10-2009, 05:49 AM
Alisia1223 Alisia1223 is offline
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Join Date: Jul 2009
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Default PWS on left arm and shoulder w/ swelling

Hi- I am new to this forum and I am seeking some advice/opinions from others who have PWS. I gave birth to my daughter, Annamerae, in February of '09. I had to have a c-section because her left arm was wedged in my pelvic cavity...she just wouldn't budge. When she came out, the arm that was stuck was very bruised... I mean, dark purple from her neck clear to her fingers. We thought that it would go away with a little time; however, it never did.

Now the mark that remains is light reddish/pink and it changes color when she's cold (to dark purple like many of you have said). It also blanches (turns white when pressed). Also, her left arm is slightly larger than the other. Is that normal with port wine stains? Could it just be swollen from the increased blood flow? And, is it just coincidental that the pattern of her PWS coordinates with the exact position that she was in (in my pelivic cavity) while I was in labor? I find that really odd. My doctor doesn't seem to think there's a relation between the two.

Even though Anna's arm is swollen, it doesn't seem to bother her. As a matter of fact, that seems to be her dominant arm. She has great coordination and strength in her left hand. Which I guess is good? But from what I've read, she may have pain in it later...?

My doctor reffered us to Dr. Yakes in Denver and we have an appt with him this month on the 20th. Our daughter is only 5 months old so I don't think he'll want to do any type of treatment. I've been worried sick about this since Anna was born...and now that I've read good and bad things about Dr. Yakes, I'm even more concerned about his aggressiveness and treatment processes.

Any advice would be greatly appreciated. I would be more than happy to send a couple of pics to someone who has experience with a PWS. No one I know seems to know what a PWS is...

Thanks alot
-Alisia
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