Vascular Birthmarks Foundation Forum - View Single Post - First time/My story
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Old 11-20-2005, 05:59 PM
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Default First time/My story

Hi! My name is Jennifer. I am 34 yrs old and have been living with hemangioma all my life. When I was three years old I fell from a bicycle. Days later, the right side of my head began to swell. Fluid was drained from that side of my head, but few days later it swelled again and it was twice the size than before. It was decided then to surgicaly open and find the cause. It turned out that it was hemaniogoma. It was removed and thought that would be it. Not so. Two years later my right lower eyelid began to swell and became very firm. Test revealed that more hemangioma was still there. I again had another surgery to remove the tumor.
For a good 7 years I had pretty much a normal childhood although more of the tumor appeared in my upper palate and inside the right cheek. My doctor at that time told my parents to just leave it alone since it was not causing any problems, i.e air obstruction. Although everytime I would have a sore throat or a cold it became very painfull. The right lower eyelid had a discoloring as if I had a black eye all the time. Yes! I got the looks/the stares. In 1987 (seems eons ago!), I had a CAT scan and found that I had more hemangioma behind the right orbit and wraps around the optic nerve. This was also causing the eye to protrude out. In addition to that, there were more on the right lower eyelid . I was very disappointed by this news. At that time my parents and I did not have a lot of options on what should be done. Removing the one behind the right eye was risky and it could possibly leave me blind in that eye. So for the time being all we could do was to hope and pray that nothing would go from bad to worst and medications (prednisone) to control andy swelling.
For three years it was just monitoring the growth of the hemangioma. Medical advances have greatly improved and laser surgery came in the picture. For 3 years I would undergo laser treatments for the one inside my mouth and lower eyelid. Unfortunately, still cannot do anything for the one behind the right eye because of the risks.
Things seems to have quiet down for some time until 2003 when my lower eye lid began to swell once again and more of the hemangioma appeared inside my mouth. I had a problem of also finding another doctor who handled these type of cases, which was not easy task. I went from one ENT to another and basically said the same thing---not much they can do or did not want to take the case. Up until this year....
In January of 2005 I went to see a doctor in New York City. Not only he was able to help me but also referred to someone who is an expert on hemangiomas. That was when I met Dr. Milton Waner. I can not forget what he said "I can help you, we are going to take care of this". He really is a God send. He explained to my why the the hemangioma kept coming back on the lower eyelid and it was because it was a Lymphatic malformation. I had a few surgeries this year and will have another one (hopefully) the last, this coming new year.
It is frustrating more than anything. I am optomistic that I am almost at the end.
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