I have a PWS on my right arm from my bottom 3 fingers to roughly the top of my bicep. The numbness happens in the arm when I walk for longer than about 20 minutes. The numbness roughly traces the bottom of my arm and hand where the birthmark is located. I can alleviate the numbness by raising the arm above the height of my heart. If I stretch the arm over my head the numbness goes away over a period of 15 to 30 seconds as if something (blood?) is draining from my arm and the pressure in the arm returns to a more normal state. If I keep walking and don't raise my arm the numbness does not go away. My hand ends up feeling like "a piece of wood" so that when I get home and try to reach into my pocket to get my house keys I can barely manipulate my hand. Does anyone else recognize this phenomenon? Has anyone received treatment to deal with this and if so did it work?
An international charitable
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arteriovenous malformation, capillary malformation, lymphatic malformation, Sturge Weber syndrome, Klippel-Trenaunay syndrome, and any other type of vascular birthmark
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