I am so sorry for not getting back to you sooner @zenk Things just kept getting worse and here we are in 2024, and I am still in the same outbreak. Coming into 31/2+ years. I was fortunate to have found a Vascular Surgeon who took me on as a patient In August of this year. He honestly did not believe me when I said I had a Biopsy done, and it was Livedoid Vasculopathy.

Because I live in such a remote area, and I was a 2-day drive from this specialist, I was admitted for 6 weeks as they tried to help me. Both my feet were affected and for the first time I had an ulcer on my leg just above the ankle. The size of my ulcer on my foot was a 3"by3"by3".located on the inner ankle to the top area of the foot.
I had ultrasound tests done, and the right was good, but the left showed a vein issue, and it was removed in surgery. The only blood thinner I was on was the Pentoxifylline. It worked for a time but was not helping on this last episode.
I had 4 surgeries where they debrided all 4 areas and removed one vein from one leg. I asked the Dr. just before they took me into the O.R. if this is a vein problem in one leg, then why is the exact same thing happening to the other leg/foot. He replied... Good question. I don't know.

The next surgery was for a skin grafting on all the wound areas and another debride on the right foot. My ulcer was so large on my right foot that in order for me to walk due to the pain and size of the ulcer, my foot started turning inwards and is now locked. Walking is painful and difficult but getting any shoes on my feet is impossible. Flip-flops and a ballet style flat shoe is all I can manage. My foot will not bend at the ankle or move in a sideways motion.

Anyway, sorry for the long story here, everything was healing perfectly...they also used a suction therapy on me and I think that was key. The only problem was trying to walk. My foot is so crooked that it began pulling and stretching my skin, and the wound has now re-opened after 41/2 months.
I was given four choices...stay as I am, amputate, full brace ($6-9000) or surgery to reconstruct my foot.
Now that it has re-opened, I can do nothing until it heals again. Feeling devastated and alone. The vascular surgeon says there is nothing more he can do for me. I am so sad and feel like I am back to square one. At the very least I have my GP who says he is here for me.
So, Zenk I hope you are still here. This disease after 19 years is wearing me down with pain and now the disabled foot. And I have to say it is a lonely journey, so THANK YOU to you and everyone else with or without LV participating and sharing with others.
Living in Canada, I have found we are limited where help is concerned as well as medication. And for so many Drs. this is an unknown territory.
Hugs to all,
Ms Merry