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. As a result from my biopsy, i have had to live with pain in my calf ever since, as well as, scoliosis in my spine, and 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.
Please feel free to message me if you have any questions or concerns!