hello, (I'm sorry I wrote so much!)
I am a 25yr. female with an Intramuscular Hemangioma in my leg calf. I am so pleased to finally find some information, as well as, other people with near same disorder as me. This is my story -- I hope that it will help someone one--
when i was about 7ish, my family noticed my left calf was larger then the right calf, with no previous pain, until a young boy my age asked me " if i would like a charlie horse, of course i said yes" and i still remember how much pain that felt in my calf, then pain went away within a few hours. Shortly after that, I was scheduled in for a biopsy right away. After my biopsy, i have had to live with pain in my calf ever since, as well as, my achilles tendon has shrunk (with no luck trying to have it extended 3x). I have had too many x-rays, ultrasounds, injections, casts, surgery's, physiotherapy, and have seen too many new specialist. I live day to day pain, and there is nothing that can be removed, or repaired. Every day I have to wrap my leg up with a bandage or eles it swells up, and i wont be able to stand up at all. I have struggled trying to find help and/or compensation, with no luck. I should also mention, my last specialist (who was fantastic!! and was the first dr. who was concerned about my pain!!) from a few months ago, had me get all new x-rays and ultrasounds, and found out that my Hemangioma has taken over about 90% of my calf muscle, and I had a next appointment booked, which was canceled, because he had past away, and no other doctor has been able to replace him. I'm very troubled. My advise to any parent with a child who has a intramuscular Hemangioma, would be to, if at all possible, to stay away from surgery, as it only makes matters worse.