Worried dad//3Yr Old with PWS

sergeant7x · #1 12-13-2009, 03:59 AM

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.

missy · #2 12-13-2009, 02:20 PM

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

sergeant7x · #3 12-13-2009, 02:51 PM

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.

missy · #4 12-13-2009, 11:09 PM

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

kaykay · #5 12-14-2009, 12:06 AM

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.

sergeant7x · #6 12-14-2009, 01:33 AM

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”.

Jonathan Newton · #7 12-14-2009, 11:10 AM

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

missy · #8 12-14-2009, 12:23 PM

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

nickbar · #9 12-14-2009, 03:39 PM

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

missy · #10 12-14-2009, 10:41 PM

Is Louisiana closer and can you go out of network?

Missy