Invisible AVM in Leg
My otherwise healthy eight year-old daughter suddenly developed a contracture in her right leg. The only sypmtom she had was that she could not put her heel flat on the floor and limped terribly when she walked. There was no swelling or discoloration on any part of her leg. The pediatrician and the orthopedist were at a loss, neither had any idea what was causing this. I did research online and by searching for "unilateral toe walking" found a paper that was written about a 21 year-old woman with these same sypmtoms. She had been diagnosed with a hemangioma (now we know that hemangioma involute and with her advanced age, it was technically an AVM or malformation). After taking this information to her doctor, I was able to get an MRI and after meeting with specialists, a diagnosis of AVM or COLA (congenital lipovascular anomaly, which includes fatty tissue).
I will post more once we get our treatment plan and even more once we get the treatments. At this point I understand that if it is an AVM, then sclerotherapy is an option...if it is a COLA, then sclerotherapy or embolization is not recommended and can worsten the problem.
I just wanted to put this information out there in case someone else knows of something like this happening to someone.