I need advise

HOSPICE, genetics clinic, leaking legs, EMG, nerve conductions, phantom liquid feeling, chronic fatigue, chills, malaise, ankle pain, swollen feet, transient lymphedema, full body lymphedema, tissue hardness, dystonia, painful boil

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I need advise

Postby ambro14 » Thu Jan 13, 2011 1:53 am

I'm a 36yr old male who has been living with right leg lymphedema since birth. I have had several minor infections growing up, but recenently things have taken a turn for the worse. Two years ago I had total right hip relacement, and that seems to have stirred things up in my system. About a year ago I began having signs of infection, sweats, chills, fevers, etc.... I would also have overlying hip pain, which was unexplainable. I was treated about three times with oral antibiotics which would resolve my symptoms but only for several months at a time. Finally this past June I had the same symptoms, but much more severe. I was diagnosed with bacterial endocartitis of my aortic valve, and required open heart surgery. The infectious disease doctors believe these infections are due to a septic hip, however the orthopedic doctors do not as I have no clinical or radiographic signs or symtoms of any infection in the hip. I agree with ortho, and I'm glad I did not have the hip redone as my hip is feeling better today than it ever has. I truley believe that the infections are a result of my lymphedema. Anyway, last week I found myself in the E.R. again with fevers, chills, sweats, etc.... and a postive bacteria culture. This time it is cellulitis as my leg swelled,warmed, and was in pain. The reason i'm writing is one to vent, but two for adivse. First let me say the general medical community has absolutley no understanding of lymphedma, it is scary how poorly educated not only general internist, but infectious disease doctors are on this subject. My foot and leg have decreased in size since starting iv antibiotics, but my foot and leg are still rather swollen and do not seem to be resloving completley this time. Question 1.... I have read online about the different stages of lymphedema and i'm not sure where I fall. I do have a harding of the limb however no open sores and im not sure about pitting. Question 2 what can I do to prevent future infections, I have meet with Dr. Feldman in Glenview IL, who is the most educated doctor on lymphedema I have ever meet. He suggested complete decommpression. Qustion 3, what are peopls thoughts on complete decompressions, and what if any other options are out there, surgery??? Has anyone heard of vascularized lymph node transfer. Any and all feedback is greatly appricated, Thanx
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Re: I need advise

Postby patoco » Fri Jan 14, 2011 12:40 pm

Super welcome to the family here Ambro :!: :!:

I am delighted to see you made it to Dr. Feldman. He is one of the best without a doubt.

I agree that the best process would be the complete decompression (manual lymphatic drainage). That is the gold standard of treatment today and can help prevent the lymphedema from getting worse or from progressing into the later stages. Without seeing your leg, it would be almost impossible to say for sure what stage you are. Dr. Feldman should be able to tell you.

But, to begin that you'll need to make double sure you are totally free of infections.

I use to have a major major problem with infections (cellulitis) and the Infectious Disease doctor put me on a preventaive course of daily antibiotics. It has really worked great for me. Since then, I hae only a few minor episodes with none of them being serious or requiring IV antibiotics.

I'm not a big fan of compression pumps though, with the exception of the Flexitouch device and a unit that uses a Reid sleeve insert. The reason is that (1) the pump removes water - for usre, but it does not remove the excess proteins which causes the hardening of the tissues and (2) There have been reports of genital lymphedema caused by these pumps.

The debulking surgery is a total complete nightmare. I had three of them in the early 70's and have regretted it every since.

Hope this helps!!!


This new thing called lymph node transplant really concerns me, especially for those who have LE from birth. What if they took lymph nodes from one place and then THAT area got lymphedema? To me, that seems to much of a risk to take. The procedure is just too new and needs very long term followup to be labled as safe and effective.
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