Hi.  I'm not a very public person, but recent discussions with friends and family have convinced me that putting this page on the web may prove beneficial to others.  The following details my story in living with vascular malformations.  I hope that it shows that people can lead successful, happy lives even when things aren't necessarily in their favor...

I was born with a huge tumor that encompassed the lower half of my face and my tongue.  I was diagnosed with hemangioma / lymphangioma tumors and underwent radiation treatments and surgical removals a few days after I was born. The operations and treatments had a very limited effect and the tumors quickly redeveloped,  I lived for the next 10 years with the tumors as they were.  I had a tracheotomy and spent lots of time in and out of hospitals as my tumors would become infected time and time again.  At the age of ten it was decided that radical surgery was required for my continued survival.  With the help of doctors in New York I underwent a type of embolizing procedure and my tongue was removed and replaced with a tongue flap made with muscle from my upper chest.  The operation was successful.  I was not cured....the operation did not rid me of the tumors, but it did severely limit their growth and size and allowed me to breath without the need of a tracheotomy.

I underwent a second similar operation two years later.  This time there were complications and new tumors were found on the left side of my face and near my right eye.  It was a long and rough recovery, but the two operations allowed me to continue a fairly normal lifestyle.  With strong support from my family I graduated from a public high school, continued onward through college, and entered into graduate school.  While in graduate school the tumor on the side of my face pushed up towards my ear causing a great deal of pain and greatly hindering my ability to function as a student.  Realizing that something had to be done, I visited some doctors at the Indiana University medical school.  A short while later I underwent an out-patient embolization procedure.  The procedure was incredibly easy and painless with the only complication being that I came close to suffering a stroke.  The operation was very successful and the tumor on the right side of my face decreased in size by about 80% and for the most part ceased to be a problem.

Things took a turn downward however when I was told at IU hospital  that I would have a limited life span because the hemangioma tumors would become cancerous in the near future.  This really put a bad spin on things and as a result I changed many of my priorities in life...which included dropping out of a Ph.D. program with a masters.  Two years later I was rediagnosed in Boston.  In Boston I was told that I did not have hemangioma tumors, but in fact had vascular malformations.  It turns out that vascular malformations are phenotypically very similar to hemangioma tumors, but that they are very different otherwise.  Vascular malformations do not regress with maturity nor do they respond well to treatments that have been shown to be effective against hemangioma tumors.  While these things are not exactly positive, the good news was that Vascular Malformations do not become cancerious.

This was indeed good news to me.  What I had learned in past years is that I needed to deal with my own condition.  It wasn't until I had the surgery during my stay in Indianapolis that I came to realize this. I had relentlessly attempted to run from my condition...struggling to ignore it, but came to realize that it is part of who I am.  Since that time I have dealt with my own condition head on, not necessarily by becoming overly focused upon it, but by staying on top of it by learning what I can in a constructively positive way. Hence...the web page. *smile*  I want to end this short narrative by saying that I have led and am currently leading a happy, fulfilled life.  I have a wonderful family. a fantastic wife, work in a professional atmosphere, and have many close friends.  I owe most of this to my mother of course.  She has given me the strength and self-confidence to live life to it's fullest.  If you are the parent of a sickly or handicapped child, it is my sincere hope that you can do the same for him or her.  Thanks for reading.  - John Battles.