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Treatment options for Livedoid Vasculopathy (LV)
Skin Health | Last Active: Dec 14, 2023 | Replies (70)Comment receiving replies
@aimeenc - I've not had a wound care specialist and only heard the term when I joined this discussion group (I live in a relatively small city in MT). The primary care doc for this condition is a dermatologist. I've also been seen a number of times by 3 different rheumatologists, my family doc (pcp), 2 other dermatologists and a vascular surgeon for this condition. The vascular surgeon was certain my problem was leaky veins and in 2012 he used a laser to destroy the greater saphenous vein between my groin and ankle (They used to physically strip the vein out, but now most use a laser to essentially cook it in place). This made absolutely no difference in LV ulcerations in the long run. My wound care is guided by my dermatologist and my wife who is very tuned in to this subject. The derm. doc is very good at consulting with and referring me to other specialists. But it is essentially left to my wife and I to determine the best wound dressing techniques to use at any given time.
Good luck with your treatment.
Replies to "@aimeenc - I've not had a wound care specialist and only heard the term when I..."
As I read through the emails I get the impression that there is a great<br />
difference between time of onset of LV (earlier in life vs later in life)<br />
and also the severity of LV (small lesions versus large ones). According<br />
to Mayo notes aproximately 20% of people with LV have Leiden Factor V for<br />
blood clotting. I know 2 other people with Factor 5, one of my daughters<br />
and a distant cousin and neither of them appear to have LV. My LV diidn't<br />
appear until after 40 and was agrivated by a wound to my ankle, as was my<br />
grandmother's LV. Our LV was localized to the ankle area. Many on this<br />
list have severe LV that covers large areas of skin. I think what we are<br />
seeing is a genetic trait with partial dominance and/or incomplete<br />
penatrance. How many of us have close relatives with Factor 5? How many of<br />
us had injuries to our legs, ankles or feet PRIOR to getting LV?<br />
<br />
My younger daughter does not have Factor 5, but to be on birth control<br />
pills was told she needed to be checked for Factor 5, since both me sister<br />
and I have Factor 5. Factor 5 is inherited, most probably from my dad, who<br />
seemed to have blood that clotted very quickly. When my younger daughter<br />
was born I had at least a dozen surface clots on each thigh, I had the vein<br />
removed in two surgeries but it did nothing to stop the LV ulcer. A<br />
vascular surgeon did surgery and then tried injecting the veins in ankle to<br />
stop LV. That didn't work,only made the whole area turn brown and small<br />
pinhead size blood clots appeared. That was about 15 years ago. A young PA<br />
in the dermatology clinic figured out that I had LV about 10 years ago.<br />
Wound care since then has been not all that helpful. They used an<br />
experimental sonicating treatment to help with wound healing, but the<br />
machine operated at 10 times the speed needed for optimal healing and<br />
destroyed the tissue I did have that was healing. They also kept putting<br />
nonstick pads on the ulcer that had latex in them. I am allergic to latex.<br />
If you have latex allergies please watch for warnings on Telfa and other<br />
dressings!<br />
<br />
My LV starts as small blood clots that then rupture creating a hole in<br />
skin that leads to more tiny clots that then rupture and make more holes<br />
and pretty soon I have an ulcer. I also get tiny clots on soles of my feet,<br />
then the skin peels like it would for a regular blood blister. If I use a<br />
cortizone cream on the area around the ulcer to reduce the inflamation, my<br />
skin thins and I get more and more of the tiny clots and that make the<br />
ulcer larger. Please be careful when using cortizone or its derivatives.<br />
<br />
My doctor has me on 2 regular aspirin a day for blood thinning, and I eat<br />
dark chocolate to help keep veins flexible (best excuse I ever found for my<br />
chocolate cravings). I have taken warfarin for clotting and also the<br />
injectable blood thinner, they didn't seem to affect the LV either way.<br />
<br />
This has gotten pretty long, but I have tried to outline what I have found<br />
to work and not to work (mostly what didn't work). It really helps if you<br />
have a doctor who listens to you, takes you seriously and isn't afraid to<br />
think OUTSIDE the box.<br />
<br />
Sheila<br />
<br />
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@prairiesmoke - Sounds like you've spent some time in a bio-science research lab. Your point is well taken. Even though LV wounds may heal, as long as the underlying disease is still present, more breakouts are almost inevitable. We know a fair amount about the mechanism of LV. Now if we only knew more about what triggers an episode, we may be able to do something about the long term effects of our disease.
Some of the wound care techniques you describe may seem a bit un-scientific, but I remember reading a study by some medical researchers, that concluded that behind many successful home remedies, native cures, poultices, etc, there often is a solid, but unrecognized scientific basis.
Thanks for sharing. I agree with you that more LV research should be conducted at the molecular level if we are ever to fully understand this disease that affects us all.