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
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 firstname.lastname@example.org
Re: Hank's Story
I just got through reading your story and viewing your website.* It took me a while because I cried through the whole thing.* You are a remarkable person! I am so touched that after all you have been through that you are so focused on helping others - like my family.* As a parent of a child with a large facial lymphatic malformation, I am only just beginning to understand a little of what you faced growing up.* Some of the things that people feel compelled to say still take my breath away.
I really appreciated your advice that you offer to parents on your website about how to support a childs social development.* I always pray that I am making the right decisions for my little girl, and she isn't even three yet.
When I look at your pictures, I don't see your birthmark - I see you.* I see a beautiful, strong and motivated person with a kind heart.* Just like I see with my little girl.* I wish the world would make the extra effort to look for the beauty of a person's soul, but part of what makes your soul so extrordinarily beautiful is your perserverence in the face of challenges.* I hope that God blesses me with enough wisdom to help my child's spirit grow as strong and beautiful as yours.
Re: Hank's Story
Thank you for your kind words Shelly.
Every person has there time to except their condition. I have always been open about it and I have benifited it as well. My family has always supported my choices in life.
I will talk more on the other group this is just for stories.
Re: Hank's Story
Along with what Shelly touched on...Besides your birthmark which does make you different, I see a strong man who has character and a good sense of self and I think that it is important that you know that and hear it from others who read your story. I, have a Portwein stain, on the right side of my face. Mine is a deep cherry color. When I was born it covered 75% of the right side of my face, today, I am fortunate to say that it covers 25% and I am very thankful...however, it is still visible and easy to see/notice. It is very hard dealing with it and seeing other people who have to deal with the same thing! I am thankful to know that there are other people out there who have to deal with similar things like myself. I am 20 years old (female)..and trust me it is not easy to deal with. I have had 40+ laser surgeries. I was one of Dr. Milton Waners first patients. I saw him when I was a baby, in Arkansas.I used to fly there a few times a year. I live in California, and I now go to the Beckman Laser Clinic, located in Irvine, CA (Dr. Waner deals with more extreme cases than mine and he is an incredible Doctor).
Keep in touch! I loved your website.
I believe I saw you on Oprah? I could be totally wrong...but I saw something on TV..it might have been a documentary with Dr. Waner (I see a lot of them on the discovery channel).
Re: Hank's Story
Thank you for your kind words. I will be looking forward to talking to you more on this website in the PWS section. If you did see me on TV it was on the maury show. TLC has not aired my show yet.
Talk to you soon.
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