Leaky Lymphoedema

Hi, I have had lymphoedema in my legs for approx 20 years, it started in my right leg then about 10 years ago moved into my left leg, which has now become worse than the right leg. I have had numerous bouts of cellulitis over the years, my legs now resemble the skin of a Rhino with large golf ball size lumps at the back of the legs, my lymphoedema clinic is to far away for me to attend for wrapping, the journey make my legs swell worse, also intense itching. My wife looks after my wrapping when we can wrap, but lately my legs are cracking at the back and an amber liquid oozes out constantly, we are dressing them but it does not seem to want to stop, I am on penicillin all the time, and my doctor has just given me Amoxicillin ( usually I have Flucloxacillin ). I have read that it's best to dress the wound the wrap with the compression bandages to stop the flow of lymphorrhea, but I have also read not to use compression wrapping with infected legs? So which way is right? Can anyone help....

Thanks

Paul.

20 Replies

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  • Hi bigleg,

    Thanks for the info it is a great help, I don't at the moment have my bed raised, as I have to sleep on my right side most of the time because of breathing problems, we are though considering spending some of the kids inheritance and getting electric beds, because one of the effects of having my legs raised is of cause needing the loo, which I would then have to wake my wife each time to lift my legs down again, they are a dead weight..

    I did attend the lympoedema clinic for a few days, they took measurements then warped both legs, but because I had to use the hospital transport because I could not drive back home when warped, the journey turned into 2-3 hours and my leg became a mess. As for my doctors, they seem happy to hand out the antibiotics as I need them, and supply my wife with the compression bandages so that she can wrap them.

    My lymphoedema is in both legs from the knees down, and at the moment they are between 30-35 inches around, and one is leaking. I now have a server chest infection again, I have had cellulitis a few time in the past few years, along with two bouts of pneumonia, which I feel I'm on the brink of again.

    Am I right in thinking that I would need to complete a course of wrapping before I can have compression garments made? Or is there something on the market that would fit my legs? Oh and of coarse my other problem is obesity as I weight approx 28 stone I have come down from 30 stone...

    It is good to talk with other people with the same problem, and I thank you very much for your feed back.

    Thank you!

    Paul

  • Thanks again for the help, I think getting my legs raised would be the way to go, I am trying to loose the wieght, been a battle all my life, like many others. I am vegetarian, and also keep processed food to a minimum. The ready wrap looks interesting also found JUXTA-FIT LOWER LEGGING, worth considering as I can't get to a clinic. We keep my legs hydrated with creams but I still get cracking etc, that's why I have to stay on antibiotics I.e. Penicillin VK 250mg twice a day, permanently. I am so glad I joined this site it's been a great help already.

    Thanks!

    Paul

  • I would look into Hyperbaric oxygen therapy as it helps wounds of all kinds..feel better prayers your way

  • I'm Quailer, Centreville Virgina 20120 USA. I've had lymphedema in both legs for about 10 years. I remember the leaking. It sounds like your far away from proper care. As you know infection is one of our worst dangers. Lost my forth toe left foot some years back. If possible get a team together Infectious Disease Dr., Podiatrist, Wound treatment center Physical Therapist and Vascular surgeon. My legs developed a groth from all the leaking which hardened and had to be debraided for quite some time. My experiance was the amber fluid leaking does not havea clotting factor, . checking for cracks and fissures everday and can leave,, u open to further infection. It took me years to get the right information for proper care, even now its still a huge pain in the ass. I'm also type 2 diabetic which complicates it as well. Personal hygeine very important.Moisture creams after cleaning your legs is a must. dryness will leave u prone to getting infected. While reducing the swellingis imortant making sure u reduce the chance of even the smallest sore can keep infection in check. I know its a hard fight you need some sort of supplies list send me a email and maybe I help a bit. Nevr Give Up Never Surrender. Take Care Quailer

  • Hi Quailer,

    Thanks for your help, this is a great site, I get little help as, as I have said I have difficulty getting to the nearest clinic. So my wife does my leg wraps, there are some excellent youtube demos which helped us. I too have growths the size of golf balls on the rear of my legs, which makes lying in bed a problem it is one of theses that has split and is now leaking lymphorria which is becomeing difficult to stop. As I mentioned before I read somewhere to dress the wound then apply your compression bandages and it should stop in two days or so, but my worry is if I apply compression bandages won't it push any infection towards my heart? I already have a server chest infection, it seems risky? But not sure how to stop it, may call the doctor out again? Thanks for your help

  • The leaking is called lymphorrhea (hopefully spelt right) and the fluid is caustic, so if it is allowed to continue to leak, it will make the wound site worse and worse. I have had the leak, admittedly from "wounds" the size of follicles, on a few occasions and dressings were useless as they would saturate all too quickly. I found that when I located the site, I would clean it thoroughly and then fill it with an anti-septic cream, like Savalon, which seemed to work in stemming the flow, but I have never had a leak from anything larger than that. My advice allied with that on the internet is get it treated if it continues to flow.

  • Hi syrup01,

    This is what concerns me, the lymphorria is leaking out of a split approx 1inch long and it does affect the surrounding skin if not stopped. My bandages are just getting soaked.

    Cheers for the help

  • My most sincere recommendation to all you guys and guyesses is to make use of the most informed site on the planet IS..earthclinic.org. Type in what you need answers for and the site management will direct your requsts or answers to the correct place You will never do better

  • Hi, LSN have a leaflet on Lymphorrhea so please contact them. There was also an article on Lymphorrhea in the last copy of Lymphline.

  • Hi novelist2,

    I have sent for an information pack from LSN and hope to join there site looks helpful thank you.

  • earthclinic.org

  • Paw1955 you need to get the GP and district nurses involved. Because lymphorrhea is so destructive to the surrounding skin, you really need to have daily dressings (dry, absorbant dressings) with compression bandaging over the top - it should not increase the risk of infection if you are already on anti-biotics.

    When you say you have growths on the back on your legs, are they firm to the touch, like eggs under the skin? Are they painful?

  • Hi Lynora,

    Had the doctor out on Monday this week, she put me on the antibiotics, and my wife gave her a list of the dressing we needed to top up our supply, and she prescribed them for us, we change the dressing daily. The lumps (growths) on the rear of my legs vary in size the largest being golf ball, they are firm only painfull when they split and weep. The skin now on my legs is so thick like a rhino or elephants leg very leathery.

    Cheers

    Paul

  • Hi Doctorlife,

    This does seem like a good option given my circumstances, how many chambers does this system have, I read that the more chambers the better for lymphoedema treatment, also is there any setup help, again I saw that they recommend having a system where it is demonstrated to you first. I live in the UK are there many suppliers of this system over here.

    It would also be interesting to hear from anyone else who has tried this kind of system to see how the got on?

    Cheers for the help.

    Paul

  • hi my legs have been leaking fluid now for the past 4 months and the doctors have told me not to put on compression stockings at all because it will make it worse i go once a week to the nurse and she puts a steroid cream on the bit thats leaking then onver the top of that a pad and then she puts on a elasticated tubalar bandage my legs are healing now but very slowly im also like you i cant get to my lymphodema clinic because its miles from and i dont drive i hope you start to improve soon take care heather x

  • Hi unlucky,

    Thanks for help, I'm pleased to hear your legs are starting to heal now, hope they continue to mend. We live in the country so even getting into local doctor is sometimes a problem as my wife does not drive, and if I am unwell it becomes difficult, luckily our duaghter and family has now moved into our village. I have now managed to get my legs elevated at night, which does feel a little easier, but I have now started to get terrible cramp, both legs last night, and I woke up in agony :( on top of that the itching has stared up again, I know others suffer from this itching it drives you mad, I think it's the infection, I will call out the doctor again tomorrow. Once again thanks for your help, and hope you are better soon.

    Paul

  • Hi Unlucky, are you not entitled to transport to your lymphoedema clinic? Either arrange through the clinic or your GP. Take care xxx

  • Unlucky - compression bandaging is the most important element of care in lymphorrhea. See the article on the LSN website written by a specialist nurse. Can you get to your Lymphoedema Clinic just once for guidance on this problem and they may liaise with your District or Practice Nurses? It sounds as though compression wraps may suit you if you can't get to a clinic, with good quality absorbent dressings like Sorbion underneath while you heal.

  • Well here is an update, had to call out the doctor again today, as I still have a bad chest, and my legs are still weeping out fluid. It was not my usual doctor but a new one to the practice and she has attended me twice now. Today though I got to have a good chat to her, explained the difficulties I have in travelling to my nearest clinic for wrapping, and she could see my problems. I then explained that my wife does my wrapping when my legs are up to it, but it is hard work, I show her an advert for the Farrowwraps and ask if I could have them as they say they are available on prescription, she had not heard of them but said she would contact the lympodema clinic and ask them then get back to me. And true to her word half an hour later she did, and they are going to measure me for them, and train the local district nurses to come and attend me at home, so things are looking up though they can't fit me in to measure until 13 November. But I need to get this infection sorted first anyway - my legs swelled to 32 inch now gone up nearly 5 inches in a week. But like I say things are looking brighter :) a big thank to all you guys for your feedback.

    Cheers,

    Paul

  • I have always been advised that when lymphorrhea is present; you should absolutely NOT wear any compression until the wound is dry and healed as you don't want the infection to travel further along the limb; a strong dose of antibiotics and a dressing, no bandaging, no massage, no compression garments until you are healed.

    Have you checked the LSN website to see if there is a therapist in your area or one who would be prepared to travel to you to assess your condition - they could then report back to your GP.

    Whilst GP's do their best, if they are not very familiar with the challenges of lymphoedema it could be helpful for them to have advice from a good therapist, and that could set you on better path with more regular checks.

    Forgive me if others have already said this, and good luck. NNE

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