Question ?????

My baby is 3 months old. I took him to the doctor and she said it was a Port Wine Stain. But not once I have read of one in the back of the head. Can some tell me if its possible to get one there?? Also she wants to do laser and wants an MRI done. Thanks for the feedback. We are in New Orleans if anyone knows of an expert here. How do I post a picture??

[missy]

To post a picture: Use the "post reply" button, rather than the quick reply box and scroll down to "manage attachments"

I know of a couple of people who have PWS on the backs of their heads. It is possible to have one anywhere on the body.

To find out if we have a physician in your area, go to:
http://birthmark.org/physicians_list_us.php

Missy

Thank you for your respond. I was unable to to post his picture. Do you know where I can see pictures of people with port wine stain in the back of the head. Or midline stain???


Thanks
Tania

[missy]

Tania,

I can't find a photo of a PWS on the back of someone's head. Probably covered by hair.

Good places to try, though:

http://birthmarks.com
http://dermatlas.org

Thanks,

Missy

Dr. Elizabeth McBurney in Slidell is the best in the area. I received about 10 treatments with her over a two-year period, and then I switched to Dr. Geronemus in New York to use the new Cynergy III laser (and because I pass through New York semi-regularly anyway).

Good luck!

Hi Tania.

My daughter has some PWS on the side of her head. As Missy said, it is usually covered by hair. That is probably why you are having such a time finding a picture.....

We also see Dr Geronemus in New York but I have heard positive feedback from many peeple about Dr.McBurney.

Good luck,,,,

Elena

[hankbartenbach]

Hi Tania,

Welcome to the group.

I have PWS on the right side of my head that goes into the back of the head on the crown. I have pictures you can look at of when I was a child/infant and pictures of what it looks like know when I had water in my hair so the PWS would show very well. You can see all of these pictures on my website at www.hankspws.com

Ok, from what you have said so far it sounds like your doctor is on the right track. I would diffently recommend the MRI. Make sure though when your doctor requests it they have it with and with out contrast. The reason why I say this is because being that your son has PWS on the head he does have a chance of having Sturge Weber Syndrome (which I have) that could lead to other issues down the road that you should be aware of. I have links on my website about SWS if you are intersted you can also find a lot of those links on this group Sturge Weber Communty is VBF's branch of SWS.

As for the laser treatment. Early intervention should be the way most doctors should recommend but some do not. I think sooner the better because you would rather get the PWS reduced in size before it effects your son emoinanally as he gets older. I have gone thru that trust me you do not want your son to go thru it.
The V-Beam Pulse Dye Laser is one of the most common lasers used today. It is safe for infants, effective depending on the PWS, and treatments do not take very long at all. I like this machine because of the cooling device and it does not scar at all unless used by a doctor that does not know what they are doing. Your doctor you have mentioned already sounds like they know what steps to take. Or as Missy mentioned there are some good doctors in LA in the resource section above.

Hope this helps.

Hank

my son was born with port wine stains covering his legs, chest, back and some on his face. They have diagnosed his with CMTC the "undiagnosed" him. He had an MRI too. The doctors have told me that if you have a PWS near an organ, get that organ checked out. For example, he had it (being treated) on his face and eyelid. So he has been checked for Glaucome twice, and had an MRI to check for abnormal cell growth. Both were fine!! He has it on his chest so he was seen by a ped cardiologist. That was fine too! I think it is a precausion but would recommend it.

Hope that helps.

Shannon