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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: Sep 4 2:30pm | Replies (253)

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@logansnana

Thank you. My hat is off to both you and my daughter. LV is definitely not for the faint of heart. My daughter, Angel, has had three of the ablations done at Kaiser Permanente in Oakland California over the course of the summer. The last one was just done three weeks ago. I am happy to report she is doing extremely well. I shared your post with her and she typed this reply for me to share."Stripping is how they used to do it. Essentially, the goal in both procedures is the same....
To stop blood from flowing through inefficient veins, and cause it to reroute to veins that work better . That being said, how do we keep these efficient veins from going bad? The answer is compression while upright and elevation when you're sitting.
Only time will tell if the laser ablation has proven to reduce the reoccurrence of the ulcers. The only thing I know for sure, is that compression helped me heal and at this point, the stockings give me hope that I'll be able to continue standing behind the styling chair ."
All the best to you msmerry

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Replies to "Thank you. My hat is off to both you and my daughter. LV is definitely not..."

I am so happy that this is working for your daughter and thanks for sharing her post. Compression is not an option for me as the ulcers are too large and even a sock or the slightest touch sends off deep pain signals. It was after this procedure was done that they discovered it was LV and not a venous problem. The ulcers keep coming back to the exact same spot on my foot/ankle. I am out of remission again and can manage only about 4 hours of being up or sitting and both feet again and the same areas with what looks like a new one busting loose. ( Gotta keep a sense of humor on this ) 🙂 Elevation, I try to do consistently throughout the day. I did have a DVT and I now know that this is also an indicator. The other thing that was noted about a year before the first time it happened was my feet were turning bright red and swelling. ( a client pointed it out) I had had this happen when I was in my 20's and they couldn't figure it out or why it was so painful.
They made mention of the fact that LV is very rare and that most people are misdiagnosed for at least 5 years when it first happens. I for one can attest to this. Anyway, I just wanted to get back to you and apologize for being so slow in replying. I had not been here in a bit and not knowing too much about forums forgot to check in. Happy Thanksgiving coming soon for our American neighbors! I hope it is a wonderful time for all.
I do have to say thank you to the two wonderful South African Surgeons who took it upon themselves to do more. Unfortunately, they are no longer in my area for further follow-ups. I am grateful that one of them said all the others (specialists I had been sent to see) were wrong and did the Biopsy and sent it away. That takes courage to do.
I am sincerely grateful for this forum and any others I have yet to discover. No one can know or relate to this disease unless they
a) have it
b) live with someone suffering from this...

Keep on researching and sharing when you can. Thanks to everyone.
MsMerry