Lyphemdema and avms

Hi everyone!

I was just told in the past few days. I cannot have a debulking surgery. Apparently, my avm is quite embedded into my leg muscle. And my leg has a lot of lymphedema. I honestly would love to wear skirts and shorts without people staring and also I loved to finally wear a pair of Christian Louboutins. :) I cannot do all this until my leg miraculously changes shape. Anyone have any suggestions?

My doctors are dr waner and dr rosen.

Hi, Samantha,I don’t know whether it is possible to change your leg’s shape in any significant way. Hypertrophy is part of the condition. I have read that sometimes lymphatic massage can help with the lymphedema. There are some sites with fashionable compression garments you can buy. Perhaps getting some tights with patterns you like might help you feel more confident about wearing shorts and skirts.

Hi Samantha,
I'm sorry this strategy isn't working out. Though honestly I also have a VM deep in my right calf muscle and I had it surgically resected(with a lovely 3" scar to show for it) and it grew back with in 6 months. I do not have lymphedema but I know how challenging it can be. The swelling makes you feel like a weirdo and they don't make compression garments for young people. Fashion doesn't enter the equation. It sounds like we have similar AVM stories mine was discovered at age 10, though its manageable with alcohol embolizations as its rather small. I've come to the conclusion that every major life event I will be wearing heals I will also be wearing compression stockings or ace bandages. I wore one to prom, graduation (both high school and college), my wedding, and the birth of my son. It would be lovely to feel good enough to go for a run or wear a pair of heals without needing to ice and elevate for at least 2 hours afterward. Hang in there there are plenty of people here who understand!

Ive had MLD before. I am just upset both doctors were sure I could have the surgery. I can last with the AVM. But Ive been reading about lymphedema surgeries such as lymph node transfer. It seems like great advancements could be made in that. And yes, lymphedema can never been cured at least having that slightly better would be a great step in the right direction. I am not quite sure what other doctors have said to you guys but I am not quite confident as my family is that one day I could be somewhat normal.