JUST DIAGNOSED

[pigsty213]

I am a bit fed up at the moment, had cellulitus last year a few times so have been for a lymph scan at Addenbrookes, was told on Tuesday I have slow lymph system in my legs, think its mainly left one. I am quite worried, I already use oxygen and have scoliosis. I cannot put the stockings on and off as I get breathless, am waiting to go to see a lymphobia specialist. I was told I could have had it years. When I was about 20 I was told I had blocked capillaries but it may not have been

[LymphSuppNetwork Partner LSN]

Hi Pigsty

Sorry you are having such a difficult time - at least now you have a diagnosis and hopefully will get the help and advice you need. There are alternatives to compression stockings which fasten with Velcro so are much easier to use certainly worth discussing when you get to see the specialist. You do not mention why you need Oxygen but it may be that they will need to go slowly with your treatment so as not to overload your system with too much fluid so patience may be needed. Don't forget to check out the LSN website - lots of interesting information and patient experience stories.

lymphoedema.org

[pigsty213 in reply to LymphSuppNetwork]

I have oxygen due to scoliosis, I have a compressed chest which restricts my breathing. Velcro would be great, I get too puffed out dressing myself so putting on pull on ones would be a problem, are they free?

[Kelmisty]

Hi Pigsty

I have scoliosis too and Lymphoedema in my left leg.

I was lucky to be diagnosed with scoliosis when I was 15 and had Herrington rods & a costaplasty done. So I don't suffer like you do,but I do understand how you must be feeling. Will they operate on you?

When did your Lymphoedema appear? Mine was all of a sudden 18 months ago.

I think you need to get hold of some Velcro stockings they will make it a lot easier!

[pigsty213 in reply to Kelmisty]

Good to hear that someone else has scoliosis, I had a rod fitted 37 years ago but had to have it removed about 15 years ago, they now won't operate any more!! My lymphodema started about a year ago when I had cellulitis in my left leg, same leg as you, have you got both legs in stockings, are they velcro?

[morganite]

Hope things sort out soon, make sure that when you are seewn they do give you a garment you can manage rather than what they want to dish out, I had exzema all over my handas and struggeled in agony at times to get lymph grade stockings on, dispite asking i was never given an alternative and i didnt know they excisted, Now i know more dont be put on and get the right thing for you we are all individuals with different nedds, Good luck,

[goodtimes]

I have been getting Lymph drainage massage and also Acupuncture have more swelling in the left leg and wear stockings but my legs hurt with the real tight ones...also using the compression boots when someone helps to put them on...hoping for a miracle but doing the best I can...thank God for this site as it explains so much...

[pigsty213]

I went to the lymphodema nurse for the first time yesterday, she has now ordered me velcro stockings which she said you have to get from abroad. She said my lymphodema is in both legs although I was told it was only in the left leg! She said lymph drainage massage wouldn't help as much as the stockings, how do you do the massage, is there any other treatment, the acupuncture sounds good. Can you get the velcro compression stockings?