Worried dad//3Yr Old with PWS - Vascular Birthmarks Foundation Forum
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  #1  
Old 12-13-2009, 03:59 AM
sergeant7x sergeant7x is offline
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Default Worried dad//3Yr Old with PWS

Hi all,
First time posting.....My 3 yr has a PWS that only covers part of his left cheeck. The stain doesnt overlap on any other feature of the face or eyes. we visited a dermatalogist who told us the stain had a high risk of becoming cancerous and he recommended we see a Plastic surgean to have it removed. I thought the Plastic Surg would recommend laser treatments but as it turns out he wants to surgically remove the stain. he then will use an an adjacent piece of his cheek to stretch over the entire area.
this all seems so invasive to me but i know almost nothingon the matter. your opinions comments and information would greatly help this sad dad.
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  #2  
Old 12-13-2009, 02:20 PM
missy missy is offline
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Where are you located?

It would be great if you could see a specialist. Are you sure that you have the right diagnosis? I have never heard of the suggestion of surgically removing a pws and stretching the rest of the skin to cover it.

Could you post a pic? That might help a lot.

If you think there is something not quite right here, chances are that you are correct.

Missy
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  #3  
Old 12-13-2009, 02:51 PM
sergeant7x sergeant7x is offline
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Missy & Forum,

thanks for your quick response Ive posted a picture to give everyone a better Idea.
To answer your question I am located in Panama City Fl 32405. I dont know of any experts near by. Any help would be greatly appreciated.
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File Type: jpg PWS.jpg (8.7 KB, 18 views)
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  #4  
Old 12-13-2009, 11:09 PM
missy missy is offline
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I sent a message to Corinne to come and see... she is the one who can help you find an appropriate doctor. She'll be around in a couple of days, if not sooner.

Hang in there, sad dad!!

(one of my very favorite people ever was born and raised in panama city... beautiful place. Now here it is December and all I can think is, 'how can I get to a beach?' LOL )

Missy
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  #5  
Old 12-14-2009, 12:06 AM
kaykay kaykay is offline
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hang in there Dad. Don't be sad. Your doing the right thing asking questions. Get the right diagnois.

when i went to give blood for my mom they called in a doctor at the hospital to find out whether i should give blood or not. He couldn't recommend or not but he told me the same thing. Plastic surgery and grafting. I was like " uh huh " Ask could i come back and see his superior when he came back from holiday. yeah right.
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  #6  
Old 12-14-2009, 01:33 AM
sergeant7x sergeant7x is offline
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Thank you all for your support! I am feeling better now that I have found this forum and of course you folks. I mean that sincerely. I have seen that one of the Closer Doctors is in Columbus or Atlanta Ga.(Finally saw the "Find A doctor " Link lol) Luckily I have family in Atlanta that would put us up for the night if continued trips are necessary. I was thinking that Laser treatment would be the most logical course of action so when the Plastic surgeon told us his method (scalpel) is was truly shocked. Not to mention that he said and I quote” Hes going to look pretty bad for a while”.

Last edited by sergeant7x : 12-14-2009 at 03:12 AM.
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  #7  
Old 12-14-2009, 11:10 AM
Jonathan Newton Jonathan Newton is offline
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Default IM not sure thats a portwine stain....

Hello..
Just looking at your message and the attached image and Im pretty sure thats not a portwine stain. I dont have any medical experience (unlike loads on here) but having a daughter with a PWS, my understanding is portwine stains are always pink / red or purple in colour given they are caused by the capillaries under the surface that cant constrict and the increase bloodflow gives the PSW its colour. In the case of older PWS the mark can become purple because the bllod folw becomes slower.
I hope somebody can give you a better idea but I would get a second opinion..

Kind Regards,

Jonathan
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  #8  
Old 12-14-2009, 12:23 PM
missy missy is offline
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See, I thought it looked too brown to be a pws also. BUT, that could have been the photo, the camera, the computer doing the upload, the system here, my monitor, etc!! LOL The possibilities are endless.

That's why I'd like him to see a specialist.... to make sure he has the right diagnosis first.

No matter what it is, if you do not feel comfortable with that one doctor, don't go back. We always tell mommies to listen to their instincts... that goes for dads too!

Missy
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  #9  
Old 12-14-2009, 03:39 PM
nickbar nickbar is offline
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Hello, thank you Missy for emailing me.

I highly recommend you get an opinion from an experienced vascular birthmark specialist. What you were told does not sound correct for a pws. I know Miami might not be close to you, but I would recommend getting an opinion from the following specialist. Also, please not the physicians list on VBF for Florida. VBF has other patients recommend the doctors on our list or VBF has direct knowledge of their expertise.
Dr. Anna Duarte
3100 South West 62nd Avenue
Miami, FL 33155
305 669 6555
Treats hemangiomas and other vascular birthmarks
__________________
Corinne Barinaga
VBF Director of Family Services
vbfadvocate @ live. com (no spaces)
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  #10  
Old 12-14-2009, 10:41 PM
missy missy is offline
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Is Louisiana closer and can you go out of network?

Missy
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