I hope things improve for you.i drink a lot of water and try to walk at least 2 miles a day but am not sure if that helps .Have also went to Lymphedema Notes .com to see whats on there but am still observing .Site like this for lymphedema sufferers
I'm in search of a solution for lymphadema too. The compression stockings don't really work for me, or at least not the ones I own. I had an RC/Indiana pouch in 2004 (at age 46) and they removed several malignant lymph nodes. Since then the lymphadema has continued to get worse.
I also don't have far to look if I want to blame someone. I have not been drinking as much water as I should, and I've gone as long as 7 hours in a day before urinating. So I'm trying to do better...I also hear from a massage therapist that swimming would help move the lymph.
I'll let you know what I find out..and if you find a miracle cure, please let me know.
RC/Indiana Pouch September 2004
Diag. Stage IV; 4 mo of Chemo
Clear MRI's since
I went to the physical therapist yesterday and the first appointment was pretty much evaluation and next week I start the water therapy and she is going to work on a foot that is not related to the surgery but happens to be the ankle that is swelling.
She said this is pretty much an ongoing problem because without the lymph nodes we will have drainage problems but it is manageable. I find the compression stockings are helping a lot. I put them on in the morning right after my shower so my legs don't get a change to swell up. I don't know if both of your legs are swollen but my right one swells much more than my left one but the therapist thinks that is because of my foot problem.
I have also been trying to walk a little every day to get my legs moving but your cold Canadian wind has blown into Connecticut and our unseasonably warm weather is over so I will have to try the treadmill.
Be careful with those fluid pills. The therapist said it's always better to get rid of the fluid naturally if you can because they really deplete your potassium.
Best of wishes and blessings.....Jean
Thanks Jean and yes this site is awesome.Will give your suggestions a try. Did anyone tell you if this condition is permanent?
I'm no spring chicken either and the pension cheques dont go to far.
Keith in Alberta
I had my RC on 10-19-06 and they removed a lot of lymph nodes. I did not have a fluid problem at first but in the last few weeks my legs have been swelling a lot and I have found it is lymphedema. My daughter-in-law is a massage therapist and she does lymph drainage massage on me and it works. What is a big coincidence that she is originally from a little place called Gibson in Vancouver. I love her accent and her speech is almost melodic. I am also wearing compression stockings and they are helping to keep my ankles, especially my right ankle from swelling. Today the Dr. ordered water therapy with a local physical therapist who has a heated pool and they said walking in the water and just laying on your back and moving your legs in the water helps tremendously. They also told me to drink a lot of water because they said you have to drink water to move water and when I do all of these things my bag fills up very quickly. I can really tell I am getting rid of a lot of fluid. They also told me to make sure I put my feet up higher than my hips a few times a day.
When I had trouble post op with my bag not sticking and changing several times a day, advice you gave helped me a lot so I hope some of what I have told you helps you.
Best wishes for a happy and healthy New Year.
Isn't this forum amazing. I never knew anyone with bladder cancer in my life and I am no spring chicken but now when I have a question I just come here and someone always knows what to do.
Bladder and 61 lymph nodes removed July/06 and am doing well except for fliud around my mid section, and legs.My own Physician put me on a water pill and that takes care of some but still remains in thighs and tummy.Surgeon says go to physician and physician asks what surgeon said.Surgeon had said that fluid retention may occur but should go away in time and now he's away until late March.
Any ideas would be much appreciated.
God's Blessings to all