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Old 04-11-2005, 03:38 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Hank's Story

Hi my name is Henry Bartenbach and I am a twenty two year old male that has, Port Wine Stains (PWS) and Sturge Weber Syndrome (SWS)

I only have SWS on the brain. No glaucoma, and I grow out of the seizures when I was about two year old. My PWS are located on different areas of my head. I have a large mark that is on the right side of my head that goes all the way to the crown of my head. On my face I have it on my right lip, both of my eyebrows, on my forehead, and on the right cheek that goes on my nose and into my eyes. I also have it on my top gum, soft and hard pallets, and in my right ear that has given me 70% hearing loss. When I was in my mother and my head was forming my internal right side crated artery did not fully attach in my head meaning if I had any major cuts on the right side of my head I can bleed out.


I have been doing laser treatment for about fourteen years off and on. The doctors have used four different laser machines.* In Denver, CO and then Omaha, NE I used the first ever Pulse Dye Laser, (PDL) I used a C-Beam PDL in Omaha when it became available.
After high school I moved to Nevada. When I was in college there I used the V-Beam PDL in Reno and in San Francisco, CA I used a 1064 um Cool glide Yag laser once. This laser was still experimental stage and was a high risk of scaring. They did a few zaps on my lip that did scar. My PWS has been diminished somewhat by the laser treatments only on my cheek. The rest of the PWS has a constant blood supply going to it so the laser treatments on these certain areas have had little effect on the stain.

In New York City I saw Dr. Waner for my first surgery on Feb 17 2005, and it went pretty well. I would have liked to see more results but I have more surgeries to come. He did debulking of my PWS that was hyperplaged (puffed out) on my lip and eyebrow. But my lip is starting to grow back and has a large bubble above the surgery area. The second surgery will be on Aug 2, he wants to work on my other eyebrow and nose. He also wants to continue laser treatments. On my third surgery, he wants to hopefully finish up on my face, with any additional debulking and laser treatments. After my face is completely done, Waner is going to look into the doing surgeries on the crown of my head, but that will be down the road in time.

The Learning Channel is filming my surgery and will air in a year or so after all my surgeries are done.

I also have had dental surgery due to my PWS on my gums; all my top teeth where shifted to the left two places when they came in. I had wisdom teeth removed, braces, and then had porcelain glass teeth and a bridge put in at the front of my mouth.

I have had ADHD Attention deficient hyperactive disorder, but I have used
the hyper ness in a good way at the gym and work. Now I have Adult ADD.
Which is a learning disorder.

I was diagnosed with Wyburn Mason Syndrome, which is a rare disorder
that affects the brain, eyes, and skin. It can be sudden or gradual; right
now it is gradual getting worse in the eye.* As of right now I am night blind, and is impairing my driving for long distance. There are allot of unknown facts
about this condition. With this condition they also think I have
Arteriovenous Malformation which is common with WMS. They think it is
connected to the brain some how, which means I have abnormal blood vessels. From what I have read between these two conditions it can lead to blindness, seizures,
stroke, death, etc, etc.

With all these problems I have, I have graduated from high school, and
college. I have A Associate degree in Heavy Equipment Operations and a
Certificate of Achievement in Welding Technology. The last semester I made
the Deans list. I also have made some masterpieces in welding class.

I moved about 1500 miles after high school to go to college. From Grand
Island Nebraska to Carson City Nevada Not knowing anybody they’re until after
I moved.
Lived there for two and a half years and after college, I moved to Colorado
Springs Colorado, where it was a year last January.

If anybody would like more details or pictures of progression email me at hankinne@cox.net

Henry Bartenbach
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