Has your PWS Grown?

hankbartenbach · #1 02-11-2008, 11:05 PM

Hello everybody,

It has ben a while since I last posted sorry it has been pretty crazy over here in NE with moving and trying to find a new job.

For those that do not know me I am 25 with a facial PWS with Sturge Weber Syndrome.

I started laser treatment when I was five years old and have had at least 70 to 80 laser treatments. and have had three plastic surgeries (2005).

My PWS is still growing. It started growing when I was around 20 years old. I have heard some doctors think it could be hormons. Before I had plastic surgery my lip was growing outword and by my eyebrows were growing over my eyes. I am sure my birthmark is also a part of my vision loss from my detached retina's as well.

Since my plastic surgery my PWs has started to grow again and am curious to see how many people are in the same shoes I am in.

So, Has your (your child's) PWS grown, thickened, or started forming any types of bumbs that will not go away?

Hope to talk to everybody soon.

Hank

kaykay · #2 02-23-2008, 12:23 AM

I've never had treatment on my face but it has definitely grown. thicker, bulkier. especially my lip. when i was a kid my face was smoother.

erih · #3 11-11-2008, 05:43 PM

Mine started thickening, a bleb or two & getting the cobblestone look/feel around the time i turned 15. Luckily, treatments have thinned it and taken care of the cobblestones. A few blebs are coming back, but i think a laser zap or two would deal with those.

monkeymoo · #4 02-06-2009, 03:49 AM

Mine covers the same area as when I was born, but has started changing - swelling, bleeding, pain, etc.

karthisubburaj · #5 03-06-2009, 10:13 PM

The right side of my face started swelling in the birthmark area when iI was 10 ,I am looking for a treatment now.