I just found this group. I'm a 27 year old male with so far only a single large AVM on the bottom of my foot. First bleed was in February 2015, Diagnosed March 2015. Attempted Scelaratherapy April 2015, Embolization in May 2015. I used to be fairly active between social and my employment as a case manager at a local Community Mental Health Center. I find that I feel so alone in dealing with this and just need support. Do have one question right now though. Due to having to wrap my foot to keep enough compression on the site, I'm having trouble with shoes any recommendations?
Welcome to the group Lionheart. I'm glad you found us. AVMs can definitely make you feel alone and that's why it's so good to be able to talk to other people who are dealing with them and understand how that feels. I have an AVM on my L ear, scalp and cheek so I'm not any help on shoes but hopefully some of our members who have foot AVMs will have some suggestions for you.
Due to having AVMs in my right lower leg, my shoe size increased nearly one size for that foot. What I have had to do is order shoes one size larger. You may want to do that.
I hope your getting some relief post embolization. I have an AVM in my calf, this means I can't wear above ankle boots. I understand the struggle. I would look for shoes with move flexible tops this will allow the total size of your foot to be a bit larger. Maybe boat shoes?? I'm sure you'll need fairly professional shoes. Good luck!
Thanks all! Rachel, I am off crutches after almost 3 months, using a cane now to help with balance, had a minor (for me) bleed over the weekend that further supports the heavy anxiety I deal with anytime I think about doing anything myself with my foot
My daughter has been fighting a foot AVM since birth. I understand the struggle, as she has had a long road to travel as well.
With my daughter, her AVM foot is much smaller than her other. So I look for a good shoe and then buy the 2 sizes I need. It's expensive, but worth it in the long run. She's had good luck with: Keens and Saucony. The last few years, she has been able to wear flip flops as well - before all the embolizations, she couldn't grip her toes to walk.
Blessings on your journey!