How I got rid of secundair lymph edema after a total lymph node dissection.

Hello all,

I just thought I would write something about how I battle my edema, a problem I am struggling with since I had melanoma on my leg (stage 3), metastasized to my lymph nodes in the groin and they were taken out about 13 years ago, I had lots of problems with edema in my leg for all those years.
I am not a doctor, nor physiotherapist, so this is just my own experience, no guarantees for anyone and if you give it a try, it is at your own risk, I actually had to take the risk, and for me it worked out fine.

(I am from the Netherlands, so I hope my English is understandable ;) )

Something else that went unnoticed for all those years was a hardened lymph vessel in my leg.
I felt it in my upper leg, but always assumed it was part of the scar tissue.
(In hospital , after the operation, I had a Staphylococcus Aureus infection in the operation wound that almost killed me, I had no idea it then also ruined the lymph vessel that was in my leg, from ankle till torso.)
So I was lucky I had to change from physiotherapist by my own limits ( I had to, because I could not cycle anymore to the other, she lived too far away), the old one had never noticed...despite all her massages and such...the new one felt it instantly and broke it lose, this was very painful!! But necessary too.

So of you have a problem with the fluid not going away easily, there might be another cause for that; a (partial) blockage.
Get that checked too!!
Just get a second opinion and don't get stuck with a therapist, no matter how kind of 'good' (s)he might appear to be, if you stop make any improvements or your symptoms become worse, check another!!!
First I thought this would do the job, easy does it, eeh!...But it did not, so I had to do more!

What I used to do until last year;

Wear my stocking daily, strength 3, had loads of manual drainage massages, even with special equipment (also Deep Oscillation, all gave short relieve, but nothing lasted) and the advice to take it very easy with the leg but keep it moving daily; activating the 'muscle pump'.

' Take it easy' was for me; do daily work in house and garden and walk every day at least a 5 km long walk with my dog, cycle 10 km's a few times a week.
I was told to avoid all trauma even insect bites or little wounds, but also from 'overexercising' .
And indeed, after doing too much walking, kneeling (for gardening) or just standing too long, my leg would hurt badly and swell the next day , so I tried to avoid ' too much' exercise.
I had lymph fluid leaking out the sole of my foot almost full time too (foot sole looked like a spongue), making walking problematic and I was scared to get an infection.
Doctor and physiotherapist just looked at it and said; "You do too much, take it more easy."

I was always in pain and nothing helped really well, it became slowly worse over the years.
Last autumn I ended up in bed with my leg up, I had bad edema in my leg and my whole torso was filled with edema.
I could barely breath, got a very high blood pressure of 165-125 and I felt my heart pounding like crazy all the time.
I never had that before.

Now 9 months later I am back on my feet, better then ever.
Blood pressure is fine again.

What did I change last year?
(what could you try)

Instead of ' taking it easy' ...I went to train as hard as possible. It hurt like hell, the effect on my leg was swelling and pain at first indeed. This time I ignored that.

-walking 10 minutes, as fast as possible, (not running, cause I got balance problems due to nerve damage of the operation) on a 'treadmill' on the ' up the hill' stand.

-cycling ten minutes, as fast as I could, 'twice up the hill' program.

-Squats 3 x 20 or as many as possible.

-Leg press, (3 x 20 times...one leg at the time! I started with just 4 kilo! Now I can press 160 kg 30 x with 2 legs, but I think squats can have the same effect, no leg press needed at all).

-leg curls and extensions (3 X 20 times as much weight as I could, I do now 25 kilo each leg 15 x 3, or 55 kilo's 3 X 12 with both legs).

-stand on a ' step trainer', this cube thing or use your stairs for this, just stand on the edge with the toes and then on toes and then lower heels as much as possible, repeat as often as possible , try to make it 3 times again.

-Stand sideways with one leg on the ' step' and do one legged squats lowering yourself by bending the leg you stand on , lowering your other leg closer to the ground and then rising up again. Try again, 3 times as much as possible.

-Stand on both legs, then lift one bend knee as high as possible to your torso and put it down again, then lift the other leg, same procedure, try 3 X 20 times each leg.

Do all this at least 3 times a week!!

-And when walking the stairs up; always skip one step.

After 5 months I had already lost 7 kilo of fluid, could breath better and felt a lot stronger, I kept going to the gym. But changed my exercises to strength training mainly.
Since my effected leg always used to be bigger then my other, I did not see I had lost all my muscles and replaced the ' volume' with edema.

I train now every other day, a full body strength program and my edema is practically gone.
I feel great and I even look great, way better then ever :)
It sounds maybe a lot, but really; I just go to the gym an hour, including warming up.
When its just the leg you want to do, it is 5 exercises; leg press, abduction, deduction, curl and extension; they take about 2 minutes each exercise, so you could do this in ten minutes, plus 5 minutes warming up. You could repeat it then.

I start with just 5 or 6 minutes on the rowing machine to warm up and then move on to the muscles training, with the machines at the gym.
I don' t do cardio (I absolutely don't like that..., so I just row as fast as I can for just a minute, to make sure I sweat , that is all).

My stomach and back are flat in stead of swollen, my leg is too, it even was a lot thinner than my other leg at first after the edema was gone, because I barely had muscles left in it.
The leaking of lymph fluid from my sole has stopped completely.

So I train often now and I can only say, the advice and help I always had, did nothing good on the long term, I should NOT have been so careful about my leg and I can advice , if nothing else works, just maybe give it a try ( but ask your doctor or physio first) ; train a lot and 'heavy' , start easy, build it up and your edema might go, even after over a decade.
I use the word 'heavy' , but of course for a healthy person it would not be heavy, but for me it felt like I did way too much.

I don' t think supplements or particular foods will do anything, wearing your stocking daily (never skip this for even a day) in combination with training does, it is at least better to go trough the pain and improve your edema then to avoid much pain, it did not do me any good.

I even notice now, when I skip just an trainingsession in the gym, my leg starts to hurt again, just a bit, but definitely the same kind of pain as I used to have, it is the edema and its pressing on my skin and on my damaged nerve , gravity is the cause and not any long walk will help me then, training hard and heavy does the job.
I don' t have manual therapy anymore at all, no more drainage needed!

I am still building up my exercises and so far I've not encountered any problems, I will continue to see how far I can go and the effect on the edema.
I hope this might help anyone struggling with this,

good luck :)