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View Full Version : 7 year leg ulcer/non healing wound - undiagnosed


4mad
11-10-2009, 06:17 AM
Anyone experienced leg ulcers/non healing wound with undiagnosed WHY?

I have a 25 year old son that developed a sore on his right leg June was 7 years ago, and 4 years ago the same thing happened to the left leg. We have seen over 200+ doctors at last count, including a 6 month stay in Rochester, MN with the good doctors at Mayo Clinic.

He has undergone countless debridements, skin grafts, he holds the record for the most dives at Emory Hyperbaric Clinic, numerous IV antibiotics, blood thinners, you name it I think it has been done to him. He has been treated for lots of things only to find out months later that "no" that wasn't it.

Internal wise I guess you could say he's healthy because all test come back negative. The constant medical treatment is and has taken a toll on him.

The latest "UNOFFICIAL" diagnosis (I guess you might call it) is anti-phospholipid antibody syndrome - this is thought because from time to time he experiences blood clots in the wound bed. But again the doctor states "unofficially"!

He has been seeing a small town doctor since April of this year and things seemed to be going good, the wounds looked healthier than they have in several years. Then about 4 weeks ago they started going bad, sever blood clots in the wound bed with terrible pain, pseudomonas back with a vengence, fibrin back in full force in the wound bed, and now he has 2 tendons exposed.

We just don't know where to turn....anyone out there with anything like this? I know this is sketchy at best, but hard to condense 7 years of medical mayheim.

jondsmom
01-17-2010, 03:06 PM
I know what you're going through. My mother has had a problem with leg ulcers for probably 25+ years, not diabetic, no reasons ever given, prone to pseudomonas and staph infections, you name it. Skin grafts didn't take (later learned that with all the serous seepage it was just a waste of money). Something that did help--she had a debridement with a new water spray machine and then went in for wraps with Coban twice a week. We still have problems with fibrin, PAIN, etc., but this has probably been the best of anything we've tried. Originally they said it was because of edema that she developed the leg ulcers, then because she had a vein ligation and they didn't take out the collaterals. Lots of suppositions, no answers as to what caused it or how to get rid of it. She's been through so much for so long. I wish I could be of more help, believe me I know what the two of you are going through.

jrc1982
04-17-2010, 11:29 PM
I just got out of the hospital after 3 weeks due to ulcers on my feet and ankles along with severe swelling. I'm getting the same response from the doctors I've seen-they don't know what it is. I've seen dermatology, rhumatology, oncology, infectious disease, nephrology, gastroenterology, and just about any other "ology" you can think of. And of course they all have a different "diagnosis". I have had x-rays, CT scans, ultrasounds, tons of blood work, cultures of the drainage, and a skin biopsy. So far all the tests have shown are an elevated white blood cell count with no apparent cause. I've been given numerous antibiotics, antifungles, high dose steroids and many pain medications. I can no longer walk without using a walker because one foot is so weak and sore I can barely put any weight on it. Some of the "diagnosis" I have been given are Pyoderma Gangrenosum, Eyrothema Nudosum, and Cellulitis. But after more than 3 weeks of "treatment" for each of these, nothing has made it any better, and one foot has actually gotten worse. So, I know how it feels to know that there is definately something very wrong, but no one seems to be able to find out what is causing these ulcers so that they can be treated correctly and heal.