Lymphedema in legs

Hi Teresa @hopeful33250 -- The edema is under control (I think). I'm still using the compression socks and still looking for cheaper versions that still do the job. The sad part is I have to clean my sock drawers out and make room for the compression socks. Hate throwing stuff away so may wash them again and see if I can give them to someone that can use them or maybe find out if they can be donated to a homeless shelter. I have a friend that mentioned they take them to a place in Minneapolis so I'll have to talk with them again.
John

@johnbishop That is good news, John. As to the heart tests that you had. I don't recall what the results of those were. Was everything OK? Teresa

I think all the heart tests were sort of OK. They couldn’t find any cause for the edema.

@johnbishop- John, thanks for that info. I was never told to wash my hose and so I have not. The earlier C-paps had a standard hose that I replaced monthy, but now my newest C-pap has a heated hose (no more condensation especially in damp climates like at our OR coast) which I replace quarterly. My mask is one of those that just cover my nose and so I replace that cushion every week with a washed one and rotate about 4 of those adding in a new one each month. I agree about adding to morning routines and definitely have become used to this routine, just not daily. Happiness is 8 hrs.of REM sleep with 2 Happy Green Faces on my C-pap!

Have Lymphedema in left leg with lymph fluid discharged between my toes. Occupational Therapist wrapped toes and leg twice a week; due to extensive wetness a fungus was created; primary doctor prescribed antibiotics and referred me to a wound care center. WCC placed anti-bacteria strips between toes; wrapped the entire foot and leg quite tightly; changed out three days a week then went to every day. Toes especially got worst. WCC referred me to a dermatologist. With more antibiotics, debride , soaking in a vinegar/water solution and applying vasoline twice a day, the foot and toes are recovering But the lymph fluid discharge continues. I spend 90% of my time with the foot and leg elevated. Subject to insurance co. approval, I will be getting a leg pump. Currently the constant drainage is my biggest problem.
Comments, thoughts, recommendations will be most appreciated.
Cu

Hello @exislander, welcome to Mayo Clinic Connect. I have lymphedema in both legs but so far mine is controlled by compression socks. The swelling in my right leg would get worse during the day when the leg was not elevated. I don't know much about leg pumps but did find some information on their use.

Understanding Lymphedema Pumps
-- http://www.lymphnotes.com/article.php/id/406/

I'm tagging @lisalucier @sauvee @drueann @cindylb @geek_girl @amkaloha @jroberts87 and @barbarah to see if they may have some thoughts or recommendations for you.

Have you seen a specialist about the constant drainage in the toes? I have no medical training or background but it seems there might be other serious related issues causing the drainage.

John

Thanks John. Have not found a specialist regarding the toe drainage. Occupational Therapist and wound care people’s directives are to tightly wrap toes and legs which supposedly will control swelling but the problem is the drainage. After several hours, the toe wrappings and top of foot will be soppy with lymph fluid. Extended periods of time wrapped tightly, wet, dark and no air results into a fungus breeding environment. Now I am treating the toes and foot without the use of wrappings while taking antibiotics. What I need is a specialist who knows how to repair and seal off this constant drainage. It is especially bad when I put weight on the foot . It’s like water in a balloon; put pressure on the balloon and the water squirts out.

@exislander I was struggling along with the swelling in my right leg until I saw a lymphedema specialist who scheduled some tests to diagnose my condition and come up with a treatment plan. I'm really glad that I was able to go to Mayo Clinic Rochester to help me figure out what was going on. Among the tests I had done was a lymphoscintigram which checks your lymph system for blockages (In my non medical opinion☺). Mayo Clinic has some information here on Lymphedema:
-- https://www.mayoclinic.org/diseases-conditions/lymphedema/diagnosis-treatment/drc-20374687

I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

I can relate to your wanting to get it over and stop the leaking but I would also want to know if you plug the leak between the toes is that going to cause a problem in a different area of the body.

Hoping you find some answers soon...

John

John, thank you for all your valuable information and to the specific Mayo Clinic sites.
I have had two ultrasound procedures, July and September; neither showed any blockages. I had radical prostate surgery in 1992, which included biopsies of the lymph glands. I must assume now that I have failing left groin lymph gland.
Anyone’s thoughts.

@exislander I hope you are able to see a Lymphedema specialist to help you figure out what's causing the leakage and come up with a treatment plan for you. I did find an article describing something similar to what you are going through that has some information that may be helpful.

Springing a leak: understanding and treating lymphorrhea
-- https://thelymphielife.com/2017/06/30/springing-a-leak-understanding-and-treating-lymphorrhea/

I'm tagging @kanaazpereira one of our moderators to see if she may have some suggestions.