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Alisia1223 07-10-2009 06:49 AM

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:)

missy 07-10-2009 12:51 PM

Hi there!

I know next to nothing on the subject, but wanted to say hi and tell you that others will be here soon to answer your question. This forum is not as busy as others and it take some of the "regulars" a while to come by.

Dr. Yakes: It doesn't hurt to meet him and see what his treatment plan might be. You can decide then to follow it or find a new physician.

Take care!


LizH 09-23-2009 07:04 PM

Hi Alisia,

Are you in the Denver area? I'm 24 and have a large PWS that was treated when I was a child but never fully removed. I just had an appointment with Dr. Eubanks at the Dermatology & Laser Center (at Harvard Park). He says he's been treating PWS marks since 1989 and was very knowledgeable about them- I'm going to begin treatments there next week! You might want to give the office he works at a call if you're still looking for other opinions.

GingerScorpio 11-05-2009 08:10 AM

Hi Alisia,

I have a pws on my entire left arm and hand that extends to a small area around my heart. There is slight swelling in the area but it is most noticable on my hand. The only discomfort I get is when I get cold or when I am doing strenuous exersize. When I am cold it does "ache" a little and it gets very dark purple. When I am doing accelerated heart rate exersizes I can't have anything around my wrist because it swells and goes numb.

Be sure to let your daughter know how lucky and unique she is. She will get teased about it I am sure but if you have the right attitude and support for her she will be fine. I seriously love having my birthmark where it is. I am physically fit and have a couple of tattoos that use white ink to make the designs etc. Kids ask about it all the time when I am at the pool etc and I just tell them that I am an X-man and have to keep it a secret...sounds goofy but then they leave me

Let me know if you have any questions etc!

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