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Livedoid vasculopathy
Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
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Sheila. Thank you for sharing!! I've tried a bunch of useless therapies as well. Have any of the above therapies worked even for a short time? I have massive ulcers on both legs which have been wrapped with; bandages and coban 2-layer compression wraps for 6 years now. I'm getting desperate to find something, anything that will work.
I also have it. Been dealing with blood clots since I was 18, ulcers and Livedoid Vasculopathy for the past six years. I am really excited to have found others! I hope you're still active here and you get this message!
Hi Angela's Mom,
I have been trying to write this, but every time I get started so more
trick-or-treaters come to the door. After reading Stan's post I think he
was being checked for Factor V Leiden in his blood. It causes blood to
clot more quickly than normal and people who have it are more prone to
getting blood clots. Over 20% of LVrs have Factor V. I have Factor V and
have had a number of small clots in my legs over the years. The ulcers on
my ankle appeared about 15-20 years ago. My grandmother had ulcers on the
same ankle, in the same spot off and on for about 40 years, I even have a
picture of her in her 70's with the ankle wrapped. I have a sneaking
suspicion if doctors who test people for LV were to test close relatives
who didn't have the ulcers they would find some of the relatives would have
LV, they just don't show the symptoms yet.
What have I had done to my leg to try stop the ulcers? I have had parts of
veins removed twice, been treated with infrared light and prostaglandins,
treated with high frequency ultrasound, had the ulcer injected with fish
oil, aplagrafted, wrapped in zeroform, patched up with medihoney, soaked in
vinegar water, dusted with turmeric, tried a jalapino pepper poltuce, etc.
I take aspirin, Tylenol or ibuprophen for the pain, and occasionally put a
bag of crushed ice or frozen vegies on the ulcer. There is some new
research out on using a low frequency ultrasound patch for 15 minute doses
that is supposed to stimulate tissue regrowth,but that is still in the
testing phase.
I am in Fargo, ND and the medical community does not know what to do with
LV patients. Wound care is about the closest we get here and they are used
to treating diabetics, not LV. If you know of anyone up this way, please
let me know.
Sheila
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1 ReactionCEAP VI
It may have been something called Factor VI
I wish I could remember maybe if she starts a new practice soon I will be able to ask her all this healthcare stuff has chased some of our best doctors out of working for the speed hospitals I may have to find someone else and start over. 🙁
Hi Spence I take it you have Livedoid Vasculopathy/Vasculitis? Do you
recall the name of the disorder your Dr was testing for or the name of the
test? Thank you.
My Hematologist tested me for a factor that decides if my hypercoagulability is a heriditary risk the (fortunately for my descendants and me) tested negative. Thanks angelas mom.
Hi Shiela My goodness this is the 1st I have heard of LV being hereditary
or perhaps your root cause disease being hereditary. That alone will be a
surprise to our small LV world. I hope if you live close
enough someday you will try Mayo again they have done much good for some
people. If you care to let me know your state I may have recommendations
for local medical centers from other LVers.Sorry about the failure of
apligraf but I always suspected if one were having a flare it would
sabotage the graft. nly worked for me because I had lingering old wounds
after flare died down. What meds for LV are you on ? what meds for pain
are you on? Thanks Angelasmom
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1 ReactionI had posted to angelasmom about 2 years ago concerning LV. I have had it for years, as apparently did my grandmother. Diagnosis was done 2 years ago by tissue biopsy. I had the aplagraf treatment and it partially healed the ulcer on my ankle. It took another year to heal the ulcer, which broke open again after 4 months. I am getting tired of being a guinea pig for doctors to practice on. The PA who finally figured out what was wrong with my ankle tried to get someone from Mayo to look at me, but apparently I wasn't bad enough for them to bother with, so I never got to talk to anyone who has actually dealt with a bunch of LVrs. If I sound unhappy, it is probably because the incessant pain and irritation from the ulcer gets me down after a while.
I can describe symptoms and if anyone out there has similar and has a way to help the LV, please let me know.
Symptoms start on my ankle as a small spot or sore that won't heal, but gets bigger. There is a redness around the area and tiny red spots like mini blood clots appear beneath the skin. The ulcers have been irregular in shape and often appear after a bump or bruise to the ankle, especially in warm late summer to fall weather. When the ulcer finally heals it is after the first of January and slowly granulates and fills in. It doesn't like being dry, or too wet. Medihoney keeps infections out, but the Ca alginate in the honey interacts with the exposed nerves in the ulcer and the thing burns like blazes for an hour or more after I change the dressing. (needless to say I don't change the dressing before I go to bed)
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