any one here or know someone who has lymphedema?????

Question

iv posted on here about a question of recent swelling ect of hands feet legs.
my friend sent me information on this. i looked it up and it makes perfect sence ,,iv had a kidney removed with the ureter and neck surgery and it mentions both of those in causes..hmmm just wondering..no need to answer..but if u know someone who has it or urself let me know, cause the pain is unbearable. and i guess surgery can be done in some cases otherwise noting but physical therapy , which sorry is a joke sometimes....been there done that...works for some but for others its a waste of time and gas to drive there......compression stockings and gloves. lord i feel 90 already...
thanks all
have a great new year and be safe..

Answer 1

Hi There, Happy New Year to you too. I'm Tina and I'm owner of Lymphland Support Group Online through yahoo groups, my website is http://www.lymphland.com and you can join the yahoo group through my site. We have over 200 members with all kinds of lymphedema problems ranging from genital to arm to leg, to primary (born with it) to abdominal. We have lots of information and we have monthly chats and a chatroom that is open at any time with times posted when moderators will be in the room too if you need to talk or need information.

You mentioned physical therapy, was that Manual Lymph Drainage therapy? And which method, Vodder, Foeldi or Chikly? Different types of therapy work differently on people, I do well with Chikly whereas not so well with Vodder. The surgeries probably did impact your lymphatic system and are the root of your swelling, did you talk to the doctor about that? The pain is bad yes, but you don't want surgery, that's called debulking where they try to reroute lymph passages and it's not reliable and outright dangerous due to the possibility of infection.

You're more than welcome to visit and/or join our group, http://health.groups.yahoo.com/group/lymphland/

Answer 2

My mom has it in her arm on the side she had her breast removed, since they took out a few lymphnodes to see if cancer had spread thru them. So her arm is swollen all the time and she owns a hair salon so she gets more then enough exercise. She also will not wear her stocking, the only thing that ever even remotely worked was a massage and it has to be done by someone who has schooling on lympedema. It is something you need to take care of any excess fluid in your body is not great, in her situation where her are stays swollen is bad becasue if she were to get a cut or something it will get infected a lot easier since that underlying fluid is old and not supposed to be there and could carry unwanted bacteria. This does effect people in different ways, she never c/o pain, but I know she would feel a lot better if she would follow thru with the sleeve and massages. Look around in your area,local hospital where they do a lot of cancer treatment maybe and see if they have someone who does do the massage, it does help move that excess fluid out of your system

Answer 3

Me..ok I have it in my right arm, and basically you learn to do strenuous activities with the other arm. Carry neosporin and bandaids for any cuts you might get, and dont bite hang nails. The exercises are easy, you have to move the lymph away and out of that arm. I had a therapist show me and she gave a diagram so I wouldnt forget and thats pretty much it. I had a lot of pain and then I wore compression and now I just do the exercises and my arm is back to normal. I hope this works for you!! Have a Happy New Year!