Vascular Birthmarks Foundation Forum - View Single Post - Hello, here's my story.
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Old 01-18-2007, 03:36 AM
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I hope your MRI went well. I am 28 years old and I have a VM in my back. It is not visible from the outside. It is in my upper Thoracic spine. I can definetly sympathise with your pain. I have extreme pain from mine. I live with it daily. Never stop finding other opinions if you do not get the results you want. I have gotten a lot of "just live with it" and "you are young, you'll be fine". Well the truth is I AM NOT fine! I am 28 and feel pretty disabled by this. And I DO NOT accect that I have to "live with it". Even the Dr.'s that are famous for dealing with this, find it hard to believe the kind of pain that it is causing me. Of course they admitt that the location of mine is extremely rare, even concidering how rare these things are to begin with. They have not actually seen a single one in the location that mine is in. So my advise is to not give up and keep searching for the right help and the right diagnosis. Hank is right, Write to Dr.Levitin that is where I started. I know see Dr. Berenstein, Dr. Burrows, and Dr. Perin all in NY. I live very far away in New Mexico but it is worth the trip, if not just to hear the words, that they know what it is and can help you. Good luck.

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