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Lymphoedema podcast & general

JohnannJohnann Member Posts: 29
edited March 2019 in General discussion
Hi, I just wanted to say thank you for organising last nights pod cast. I have lymphoedema and the biggest thing that came out of it for me was that many of us don’t have that initial measurement done pre surgery. I have some wonderful physiotherapists looking after me but it has been hard when there wasn’t an initial measurement to work from. 

Could i I also ask if there are others who find the compression garments don’t work for them. I wear them for travelling but fluid tends to be pushed into my hand making it uncomfortable! I’ve tried different types of sleeve and hand formations but the area below my fingers swells with a little mound. 

Thank you you again and I look forward to the next pod cast. X


  • AfraserAfraser MelbourneMember Posts: 2,879
    I had an awful time with an all in one compression garment which effectively puffed up my hand and fingers. Turned out the whole thing was badly fitted. A Jobst arm and seperate hand, with fingers to
    mid lower joint, works much better for me. I've found it took quite a bit of trial and error to get the right combination and type unfortunately. But very stable now. 
  • wallis3036wallis3036 Member Posts: 2
    Can anyone recommend a great massage therapist who does manual lymphoedema massage in Perth & surrounding area plus any other advice greatly received. 
  • Giovanna_BCNAGiovanna_BCNA Administrator, Staff, Member, Moderator Posts: 1,508
    Hello @wallis3036
    You can use the following link to search for a lymphoedema practitioner, you need to add your postcode
  • PepsijaxPepsijax Member Posts: 6
    I’m also having trouble with my garment . I went back after the first garment seemed to be too tight and my thumb was going numb . I’ve since got a second s garment from the Lymphodema clinic but my knuckles swell every time I wear it :(
  • AfraserAfraser MelbourneMember Posts: 2,879
    Made to measure is more expensive but can be better. My first made to measure was appalling (see comment above) but my next one (and still current supplier) does a great job and the measuring is excellent. Unfortunately it's difficult to know before you put the thing on!  And it's pretty individual too. Trial and error worked for me but I really resented throwing out $400 dollars worth! 
  • KristenKristen Member Posts: 44
    Managing lymphoedema takes more then wearing a sleeve. I have to do self massage and a scedule of movement to move the lymph fluid at least twice a day. Some days there is extra fluid in elbow, or a finger , or whereevr - so that has to have extra attention, usually roller ball to move  the fluid. if i don't it just gets firmer and sore. as long as i don't let it stagnant ., my arm is pain free and smaller. as soon as i slack off it swells. that includes if i don't maintain stretches for arm and shoulder and neck flexiblity. takes a lot oof hard work and years to learn what is right for me, and custom sleeve, mobiderm cleeve, compression pads, mobidern  sections... and a whole heap of other tips and trick i have learnt along the way. But its worth the effort to keep it comfortable. A great facebook group is Living with Lymphoedema Australia & New Zealand for picking up  tips and ideas.
  • KristenKristen Member Posts: 44
    edited August 2019
    New support group ,second ever meeting next week. #lymphoedema #supportgroup #sutherlandshire
  • AfraserAfraser MelbourneMember Posts: 2,879
    Agreed that self massage and exercise is important. I like a monthly professional massage with my lymphoedema therapist too. 6 years in, my condition is not particularly volatile but consistency in management does pay off. I have never experienced any soreness, heaviness or limitations, which makes a difference. 
  • kmakmkmakm MelbourneMember Posts: 7,871
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