Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Hi Martin,
You asked what has helped heal the ulcers. I have had only one ulcer on my ankle, about the size of a nickel now, off and on for almost 20 years. the ulcer seems to start up in the early to mid fall from a bump or bruise. Last August it just started up again after being healed for 4 months after apligrafts. The Dr. asked me if I wanted to try another graft but I said no. They cost a lot and for something that takes months to heal even after the graft and then breaks open again after only 4 months the thousands of dollars aren't worth it. I have a lot of skin allergies, so I can't use adhesives, or xeroform dressings, and NOTHING with latex near the ulcer or my whole ankle goes crazy with small blisters. I use medium weight TED stockings to hold on non latex containing wound dressings and medihoney(calcium algenate in it for structure) directly on ulcer to keep down infection. I clean the ulcer every day with a mild vinegar wash. I also get small red spots on toes and feet from the tiny aneurisms breaking in my capillaries. This gets worse if I stand for any length of time, and if I drive for long distances. I have to get out and move my legs, walk, dance, whatever. When I sit I have my foot up on a table, or a box at work. My ulcer doesn't like being damp, so I try to keep the moisture content of anything I put on it to a minimum. It will heal from the bottom up, but it seems to take forever. I take 2 aspirin at nite to try head off blood clots, and I take 2 ibuprophen in the morning to lessen the pain when I change the dressing on the ulcer. If I want to spend a miserable nite, I change the ulcer dressing before bed and then try to find a spot where the ulcer isn't touched by covers, or my foot, etc. This probably won't kill us, but it makes our lives painful and downright miserable at times!
Sorry I can't be of more help. What we need is a medical research team that analyses the proteins, collagen in our capillaries to find out why they form aneurisms. Is anybody in the medical department at Mayo listening? We need to know what is wrong with the proteins, why this happens and then we may be able to figure out a way to improve the system. I have been in genetics research for 40 years and this is a genetics problem. Genetics, factor 5 Leyden, poor capillary structure and LV are all interrelated. Figure out the how and why and then you may have a good chance of finding a solution we who have LV can live with. We on this list would enjoy being able to walk again without the constant aggravating pain of LV!
-
Like -
Helpful -
Hug
2 ReactionsSheila. 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
-
Like -
Helpful -
Hug
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
-
Like -
Helpful -
Hug
1 Reaction