I am 24 years old with a Port Wine Stain and Sturge-Weber Syndrome (PWS/SWS) on my face, upper gum and palate, in my right ear, eye, nose, and on the crown of my head that travels to my forehead. My ear has severe nerve damage and a deformed eardrum from my PWS. My right side internal carotid artery is deformed in my head, causing a very high risk of bleeding if I ever got any major cuts on the right side of my head.
I have had laser treatments since I was 5 years old. I have used four different lasers, three of which were Pulse Dye Lasers (PDL): the first ever PDL, the C-Beam PDL, and V-Beam PDL. I have also used a 1064um Coolglide Yag laser once in an experiment. It was a brand new machine and had a high risk of scarring. I only had seven zaps on my upper right lip and it did scar. If it helped work the kinks out of the machine, so that some day it will help remove a vascular birthmark, then it was worth the scarring.
In New York City I saw Dr. Waner for three plastic/debulking surgeries and they all went pretty well. I would have liked to see more results in some areas but the mass of the hypertrophy (puffiness) was removed on my lip (three places), eyebrows, and nose. A production company filmed my first surgery and are waiting to sell it to TLC.
Right before my surgeries (year and a half ago) I started to lose vision in my right eye, then my left eye. I now have two detached retinas with small hemangiomas that are growing on the retinas. I also have either one or two AVMs that are evolving into my optical nerve. This problem started because the pressure in my eyes is so low (glaucoma with SWS is high pressure normally) and no doctors I have seen yet have really been able to explain my condition. One doctor tried steroid injections, which might have helped raise my pressure, but not enough. Last January I had radiation treatment on my retina. They said it will take three to four months to heal, and I’m still waiting. Since treatment my vision has rapidly been getting worse. I have already given up driving and have just been accepted to the Commission of the Blind for rehabilitation. Hopefully, I will start school soon.
I also have had dental surgery due to the PWS on my gums (all my top teeth where shifted to the left two places). I had wisdom teeth removed, braces, and then had porcelain glass teeth and a bridge put in at the front of my mouth.
I do extensive volunteer work and I’m ready to tell you what it’s like to live with a vascular birthmark.