Updates as of Nov, 2007 click here

My fiancee (Jessica and I)

  

SWS has many problems linked to the condition. But I only have conditions that are involved into the brain. I grew out of the seizures when I was about two year old. I presently do not have glaucoma, but continue to have high risk of it. My PWS is located on different areas of my head. I have a large mark that is on the right side of my face 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 starts on my right cheek then goes to my nose and into my eyes which has start to cause my lose my vision (details below). I also have it on the top of my gum, soft and hard palates, and in my right ear that has given me significant hearing loss which is getting worse. When I was in my mothers' womb and my head was forming, my right side internal carotid artery did not fully attach in my head meaning if I have any major cuts on the right side of my head I could possibly bleed severely.

I started doing laser treatments when I was five years old. I have had to many to count, but started out going every other month until I was in teenager years then took some time off to do some dental work, then started laser treatment again until I started having plastic surgeries last year. I have seen several dermatologist for laser treatment. I have used four different laser machines.  In Denver CO and then Omaha NE I used the first ever Pulse Dye Laser, (PDL) and I used a C-Beam PDL in Omaha when it became available. You can see results from pictures I have in the link below.

SEE PICTURES of growing up with PWS

After high school I moved to Nevada. When I was in college there I started using the V-Beam PDL in Reno and then in San Francisco CA I used a 1064 um Cool glide Yag laser once. This laser was still experimental and had a high risk of scaring. They did a few zaps on my lip that did of course scar. Over the years my PWS has been diminished somewhat by the laser treatments but mostly on my cheek where it is thinner. 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. Over the years my PWS has started to thicken and grow. I had been in search of a plastic surgeon that was willing to operate to remove my PWS that was growing and none were willing to even try until I met Dr. Waner (picture below). He said the words I had been waiting to hear for years. "I am willing do surgery."

   

In 2005 I had three plastic surgeries in New York City with Dr. Waner. To read about my surgeries and see pictures click here.

A production company filmed my first surgery but decided not to film my second or third. They said that The Learning Channel or Discovery Health Channel has not yet purchased my story from them, but since I had taken such good pictures from the first surgery I could fill in the story and they can come to do a follow up segment with me sometime this past year, but they still have not contacted me again. It will be posted here when I find out when TLC or Discovery Health is going to air the show.

I also have had dental surgery due to my PWS on my gums (see growing up with PWS). All my top teeth where shifted to the left two places when they came in. I had my four wisdom teeth removed, had braces on top and bottom teeth, and then got porcelain glass teeth and a bridge put in on the top front of my mouth.

I also had ADHD (Attention deficient hyperactive disorder) as a child, but I eventually learned how to use the hyperness  in a good way at the gym and work until I grew out of it. Now I only have Adult ADD and every once in awhile I have hyperactivity spells. It does still have its disadvantages making it harder to learn but I have managed so far.

It has almost been over two years now when I noticed my right eye was losing vision. My left eye has had some similar problems but not as severe. I gave up driving back in Feb 2006 but since treatment last year I have started driving again back in Jan 2007. Being stressed was the reason I quit in the first place because I did not want to an accident or hurt someone. Since then my vision has improved greatly in my left eye and am driving full time.  

There are a lot of unknown facts about my eye condition but I am convinced it is linked to my PWS but not SWS. Doctors also think it might be connected to the brain some how. I have seen multiple eye doctors including The Wilmer Eye Institute at John Hopkins hospital in Baltimore MD. All the doctors I have seen have come up with different opinions, but never had any options to correct the problem until January 2006 when I went to Mass Eye and Ear Infirmary in Boston MA. The doctor I saw has seen some form of my condition (the detached retinas) and recommend Proton Beam radiation treatment. I had four days of treatment, one in each eye each treatment. The good thing was there was no immediate side effects from this treatment, and the only long term side effect that I developed was shingles at the end of April 2006 but went away fairly quickly. They were hopping that the radiation treatment would shrink the hemangiomas and to hopefully re attach my retina. They said it might be possible to bring back some vision in my left eye but no guarantees. Since my right eye had so much scarring already that not much could be done other then to stop it from getting worse. Since treatment, my vision had been getting a lot worse and faster because it was still in the healing stage. This is when I gave up the driving.

When I went to Boston in July for my six month follow up they gave me some good news my left eye has got a lot better and my right eye has stabilized. The hemangioma behind my right and left eye have shrunk. Of course the doctor wants to see me in another six months for another check up but decided to just see my retina doctor here in Nebraska. My vision has got a lot better in my left eye. Last time I got my vision tested it is at 20/30. My right has not changed much mostly just stabilized and from what I can tell is not getting any worse..

At the point when my vision was getting worse I had already excepted that there was a big chance that I was going to lose my vision completely sooner or later. It might be a year it might be ten nobody can predict. I wanted to be prepared for it. At the beginning of May 2006 when my vision was still pretty bad I started school at the commission for the blind and visually impaired rehab center here in Nebraska. I was learning what it was like to be completely blind. Which was pretty hard considering to be in the program you have to be blind folded for eight hours a day. The first week of August I decided to leave the training and start working with a counselor one on one to finish learning braille. I felt that it was time for a change not only because my vision has been getting better but because I also was starting to get very depressed and stressed because of wearing those blind folds. All you see is black all day long, five days a week gets to a person after awhile. I also needed to start planning for my future and what goals I want to work on in life.

I am convinced now that the real reason why I even had eye problems to begin with was to lead me to this school to meet my future wife that was attending the school as well

With all these medical problems (before my eye condition), I had graduated from high school, and college. I have an Associates degree in Applied Science in Heavy Equipment Operations and a Certificate of Achievement in Welding Technology. The last semester in college I made the Dean's list. I also have made some masterpieces in welding class. Since my vision loss I had some spare time on my hands because I stopped working. I did some volunteer work for my old high school, making more sculptures. (the link to pictures of all of those are at the top of this page) I sold the grape vine and wrench tree, but the daisy vine is still for sell. 50 % of the selling price will be going back to the welding department at the school. If anybody is interested contact me directly. A link to my address is below.

""Never let yourself/your child be held back because of any kind of medical condition. Positive reinforcement and encouragement to succeed in life should be given to yourself/your child.""

If anybody would like more details or pictures of progress contact me Henry Bartenbach

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