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Old 03-18-2006, 08:10 PM
hankbartenbach hankbartenbach is offline
Senior Member
Join Date: Oct 2002
Location: Nebraska
Posts: 533
Default Hello incognito75

Hi incognito75,

First of all welcome to the group.

I am a 23 year old with facial PWS with SWS (sturge weber syndrome.

From what you wrote in the last two posts I can tell you that you have a level three PWS (just like mine). You mentioned in one of your posts that your PWS is growing outword that is called hypertrophy. I had hypertrophy on my lip, nose, and both eyebrows before getting a large part of them removed by Dr. Waner in NYC.

What it is is extra blood vesels and fatty tissue that grows. Laser treatment for the most part will not remove it. Debulking/plastic surgery is the only way. Laser treatment can help the flat areas though. I have been doing that for the past 18 years and now have had three plastic surgeries. If you would like to see before and after pictures you can go to my website www.hankspws.com

Have you noticed any big zits on your PWS that would not go away? If so those are blebs or the begining of coblestones. Laser treatment can remove those. If you want a good example of what they look like if not treated worse case cenareo you can go to Geoff Ritchies website www.geoffspws.com He is a good friend of mine and has had eight surgeries with Dr. Waner.

I know exactly how you feel about all the comments, pointing, laughing about the PWS. Those questions can be hard sometimes and I have always thought adults have more rude questions the children but you work with them all day so that is different. I always love educateing children about my condition. Some day down the road if they ever met someone else their age with a birth defect and they make friends or even more then it was worth explaining about your birthmark. I think if you educated them about it, it will not bother them as much. With children they will always be curious because they do not know better and their minds are not fully developed to understand. Those sycology and childhood development classess are talking again that I had in college. LOL

Remember I am not a doctor the above is just my opinion. If you are interested in getting an expert opinion there are doctors on the front page of this website. Dr. Nelson the PWS expert and Dr. Leveton the ask the surgeon are available to answer your questions.
Also, if you are interested in getting an opinion in your area at the top of this page under resources there is a section you can find a doctor in your area or in driving distance.

Laser treatment is not considered cosmetic if your doctor writes a letter explaining to the insurance company why you require treatment for your conditions. Have them send a picture with it. BCBS have covered all my laser treatment but I have a war going on trying to get them to cover more then they already have for my plastic surgery.

I hope this helps answer some questions you might have had if there is any other questions you might have please ask we are here for you.

Talk to you soon.

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