Livedoid vasculopathy

Posted by angelasmom @angelasmom, Aug 3, 2011

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.

Hi Tngbell, Yes the LV site is active. Tell us about your experience with LV . Zenk

REPLY

My husband was only diagnosed in January but had been suffering with for 2 years. We had been going to a Wound Care Center who just debrided and tried differing wound dressings. Finally in December one of the doctors at the Wound Center said we really needed to see another vascular doc since the first one had found nothing wrong and she was convinced vascular issues were the root of the problem. In January we serendipitously encountered the very doctor she wanted us to see when he was admitted to the hospital with heart issues! He then referred us to derma pathologist who did a biopsy and diagnosed LV. Since then we have been desperately seeking help. Hyperbaric treatment was recommended in the research I found but Medicare will not pay for it unless you have diabetes. We are now going to UT Southwest in Dallas to be tested to see if Hyperbaric is even feasible for his body. They have said they might put him in a trial just to get it approved. We go Friday for the assessment. It is a horrible disease and I admire my husband for not giving up. He does his own wound care now with home health only coming twice a week.

REPLY
@tngbell

My husband was only diagnosed in January but had been suffering with for 2 years. We had been going to a Wound Care Center who just debrided and tried differing wound dressings. Finally in December one of the doctors at the Wound Center said we really needed to see another vascular doc since the first one had found nothing wrong and she was convinced vascular issues were the root of the problem. In January we serendipitously encountered the very doctor she wanted us to see when he was admitted to the hospital with heart issues! He then referred us to derma pathologist who did a biopsy and diagnosed LV. Since then we have been desperately seeking help. Hyperbaric treatment was recommended in the research I found but Medicare will not pay for it unless you have diabetes. We are now going to UT Southwest in Dallas to be tested to see if Hyperbaric is even feasible for his body. They have said they might put him in a trial just to get it approved. We go Friday for the assessment. It is a horrible disease and I admire my husband for not giving up. He does his own wound care now with home health only coming twice a week.

Jump to this post

Hi Tngbell, , I am glad your husband got a diagnosis after so much suffering. Getting a diagnosis is a great start because now you can concentrate on what works for this illness. Hyperbaric therapy would definitely help get oxygen to his wounds and help to heal them. If he could enroll in a trial or any way he could get HBO would help. I have medicare too so I know they do not pay for LV wounds. I take Xarelto 15 mg. per day to treat my LV. Blood thinning seems to be an important part of treating LV. Any way we can get oxygen to the blocked tiny vessels is key. Does he take blood thinners? Keep going to a wound center to be on the lookout for infection. I am able to get Mepelex bandages prescribed by the wound center to apply to the wounds. They stay in place and don't hurt to remove. They are life savers for me especially when wounds are over my ankle bones. They are foam padded and great. Does he have topical pain killer? Ask the wound center about it . I have used it over the years. Keep in touch, Zenk

REPLY
@tngbell

I'm wondering if this thread or another is still active. I've been checking on Mayo sites, but have found nothing. Thank you.

Jump to this post

It is sort of active. I look at it when it pops up, but don't know how
many others do. I have had LV for over 20 years.

REPLY
@prairiesmoke

It is sort of active. I look at it when it pops up, but don't know how
many others do. I have had LV for over 20 years.

Jump to this post

Hi Shiela, I look at the LV posts when they happen too. Still chronic but taking Xarelto daily with the hope of preventing new ulcers. Zenk

REPLY

We do Xarelto and it seems to have helped. No new ulcers would be a blessing!🙏

REPLY
@zenk

Hi Shiela, I look at the LV posts when they happen too. Still chronic but taking Xarelto daily with the hope of preventing new ulcers. Zenk

Jump to this post

Hi Zenk, I hope the Xaralto works out for you! I had Amnioexcel Plus
tissue application last Nov-Dec. as part of some Drs. experiment in Wound
Care here. From Jan- june of this year I thought I was receiving the
Amnioexcell, but they gave me some other product made from sheep tissue
instead without telling me. My ulcer went from the size of a nickle to the
size of a 50 cent piece. I no longer go to Wound care, since I don't trust
them.

REPLY

Hi Shiela, So sorry about your experience at wound care. What are you doing for treatment going forward? Keep in touch. Zenk

REPLY

Hi Zink, I use Medihoney with calcium alginate as a wound dressing and reapply it every other day to the ulcer. I wash the ulcer with clear running water before applying the honey, putting a thin layer of honey on the ulcer and then covering with a nonstick, non latex containing pad. Since I am allergic to adhesives I wear compression stockings to hold the pad in place and to help keep pressure on my veins. Once a week I scrape dead cells and bits of honey out of the ulcer with a sterile platinum loop. This is painful, but then the ulcer is painful whenever I move. I change the pad once a day, sometimes more if I am active and the ulcer drains a lot.
Sheila

REPLY

Hi Sheila, There is a product called EMLA – comes as a tube of cream – to use when you clean the ulcer out. Should be available OTC or to order from your local pharmacy. Put some on and cover it with cling film or OPSITE FLEXIFIX (Smith and Nephew) for at least an hour before you debride/clean out. It numbs the area and will wear off after two hours or so, so will start to hurt about then. I also take Paracetamol/codeine about 1.5 hours before a debriding session.
Another numbing cream which is less powerful is Lidocaine, used in the same way. I also use compression stocking to hold the pads in place, rather than plasters. The skin is so fragile.

REPLY

All suggestions are valuable!

REPLY
@ruthnz

Hi Sheila, There is a product called EMLA – comes as a tube of cream – to use when you clean the ulcer out. Should be available OTC or to order from your local pharmacy. Put some on and cover it with cling film or OPSITE FLEXIFIX (Smith and Nephew) for at least an hour before you debride/clean out. It numbs the area and will wear off after two hours or so, so will start to hurt about then. I also take Paracetamol/codeine about 1.5 hours before a debriding session.
Another numbing cream which is less powerful is Lidocaine, used in the same way. I also use compression stocking to hold the pads in place, rather than plasters. The skin is so fragile.

Jump to this post

Hi Ruth, When I went to wound care they used the lidocaine solution before debridement. You are right, it isn't as effective a pain killer. I use medihoney because it is a natural debrider and kills many bacteria, so I don't have as much to clean out of the ulcer. Thanks for the info on topicals for numbing the area, I will check with my pharmacist!

REPLY

I use Microdacyn 60 Wound Care spray to clean the ulcerated area. I use it in a spray bottle and refill it from the 1 litre bottle I bought onlline http://www.biologiq.nl/UserFiles/Flyer-OculusMicrodacyn-JAN%202014.pdf

REPLY

Hi there….
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.

I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles…. red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.

I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.

Andi

REPLY
@andi1969

Hi there….
I used to be treated at Mayo Clinic by a wonderful doctor who is my hero! It took three long painful years to get my diagnosis. Dr. David Wetter was the one who figured out the puzzle. I was sent to Derm, then to vascular and then neuro and then back to Derm. I say all of that because now I have moved to be near family here in Fort Wayne, IN and I am starting all over again. Nobody has heard of this condition and nobody knows where to send me. I am in the middle of what I call a "break out" and I am being sent to Dermatology next month. If they can't help me, the plan is to send me to Rheumatology. If they can't help me, the plan is to send me to cardio-vascular. I have been in remission for about a year and am now going through a break out. It's frustrating and upsetting to be in so much pain and feel like you are going through it alone.

I am noticing that other with LV also have some sort of immune deficient disease. I have always felt like the LV diagnosis was only half the problem. Every biopsy they took (and there were several), I ended up in the hospital on IV antibiotics because I wound up with cellulitis. Not once or twice but every time they biopsied me. My body was not able to fight off whatever pathogen I was fighting. I am extremely fatigued all the time and some days it takes every fiber of my being to get up out of bed. Joint aches, swelling of feet and ankles…. red patches on my cheeks. I can't address any of these issues until I am being seen by the doctor and specialty who will take me on here.

I am sorry. I would love to hear if I am crazy or if this is something to pursue? It has been a bit of a rough patch for me at the moment. Does anybody else suffer from neuropathy with LV? I do.

Andi

Jump to this post

I was diagnosed by a young physicians assistant years ago. She had the curiosity and tenacity to keep looking for the problem. I don't have immunology problems but I do have Factor V Leiden that causes blood to clot abnormally quickly. About 20% of people with livedoid vasculopathy have Factor V. There are articles and pictures of LV on the internet. It would probably help to print them off and take to whatever Dr. you see, also any notes on your treatment at Mayo. Drs. had me tested for all sorts of things like Lupus and RA after I was diagnosed with LV, they can't seem to realize that we simply have something that they aren't familiar with. Good luck!

REPLY
Please login or register to post a reply.