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Go Back   Vascular Birthmarks Foundation Forum > Port Wine Stain Help > Port Wine Stain Help and Resources

View Poll Results: What should we do?
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  #1  
Old 07-21-2004, 05:41 AM
tyra
 
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Default HELP PLEASE!

My son was born two and a half years ago with a port wine stain that covers most of his lower body. It is on the back of both legs and one foot including toes. Then it goes up on his whole bottom to his lower back including his scrotom and penis. We were sent to a specialist for diagnosis and confirmed it was a port wine stain. Then we were sent to a plastic surgeon who told us it was painful, expensive and not necessary and that he could wear pants. I have never stopped worrying about it and I feel so sad for him. I have been searching for answers but it is all so overwhelming.(seems like most information is for birthmarks on the face) It is also getting darker especially on his one leg and foot. It goes a very dark purple. My greatest concern on his body is his scrotom and penis. Will he be able to have sex? What if it becomes cobblestone, will it bleed and hurt? My other concern is of course his spirit. I can't have him hurting over this. I DON'T make a big deal about it to him. I told him that was his birthmark and some people have them and some don't. He's only two. Please, if you have any knowledge of this large of a birthmark or one that is on a penis or scrotom please leave a reply. Also, if you do have a birthmark, do you wish it would have been lightened or removed when you were younger? Can birthmarks even be removed on the penis area? Thanks for reading my story.
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  #2  
Old 07-21-2004, 06:35 AM
vlifsey24
 
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Default Re:HELP PLEASE!

Hi. My name is Valerie. I also have a 2 year old son who has PSW on his face, head, and neck. I visited sturge-weber.com and left them my phone number and within days someone called me back and talked to me for an hour, answering all of my questions and giving me info I didn't know about PSW. If you would like to contact them the number is 800-627-5482.
You should get a second opinion about starting surgery. I did and now my son is on his sixth surgery. I really hope this helps. By the way, if you go to the website, click on "contact" for someone to call you back.
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  #3  
Old 07-21-2004, 04:20 PM
Jin9084
 
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Default Re:HELP PLEASE!

hi my name is Jinny and I sent you a private email on this site. I forgot to ask you if he has been evaluated for KT, CMTC or if it's only the PWS? I would go to the FIND The Physician on the left hand side and see if you have a knowledgable doctor near you. Some of the dem/plastic surgeons sre still behind the times. You need to make sure that he is see one who is up to date on the treatment of PWS. I can tell you that Austin is going to have his gums lasered because of PWS so there agian you need to find a up to date doctor. Please feel free to contact me privately or post here if you have anymore questions.
Jinny
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  #4  
Old 08-07-2004, 09:19 PM
tyra
 
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Default Re:HELP PLEASE!

Hi, Thank you for responding to my story. Your information has been quite helpful. It is nice to know we are not alone.
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  #5  
Old 08-16-2004, 11:03 PM
Streyeder
 
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Default Re:HELP PLEASE!

Hey, I'm Tim. I'm currently a college student and grew up with PWS engulfing my entire right arm and part of my neck. I love my birthmark and wouldn't give it up for the world, as it's helped make me who I am today. The only problem I've ever had was finding shirts with long enough sleeves since my arm is about 2in. longer and slightly fatter. Feel free to email me if you have any questions about growing up. I really had no troubles, but if you want to chat it's fine by me.

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  #6  
Old 09-30-2004, 09:22 PM
hopefultoo
 
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Default Re:HELP PLEASE!

my son has a pws and he is on his 17 surgury and i would strongly suggest getting it removed i have heard that sometime they can be really painful and spread if they are not taken care of also they can spread and raise out of the skin my sons birthmark is doing so much better since we have been getting surgeries and i have heard they can get darker so if you need any help i can try to give you any answers that i might have from my experiences. email me if you want to:
steinhi@gmail.com
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  #7  
Old 10-05-2004, 08:33 PM
Scrat
 
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Default Re:HELP PLEASE!

I grew up with a PWS on my face, and it never botherd me one bit. I can't imagine not having it! I love it, and I think it had a big impact on the person I am today and on the way I look at other people. I wouldn't remove it even if it was free.

I never had any surgeries for it. It was never touched by a doctor and I never had any problems with it. I know that when I was younger doctors monitored if it's spreading or growing, but they never did anything about it. For that I'm grateful, because I can feel very special today just because I have one!
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