DN want to put me into stockings but dont know how to measure due to the overhang. My GP rang lymph clinic to speak to consultant to get me an app and he said he didnt need to see me and to just continue with bandages.
Anyone else had this problem. Im missing going swimming and the bandages get irritating and uncomfortable in the hot weather we are having
It is criminal how sufferers get left hanging like this - a GP with no interest or knowledge about Le and not coordinating with the treatment provided by the DN.
Make a noise - make yourself heard - you have every right to treatment - we are not beggars pleading to be treated. Find the nearest Lymphadema Clinic and sit there until you get measured and issued with your 2 free pairs of hosiery! These are supplied on the NHS.
Let us know how you get on,
Cheers
Christo.
Thanks Christo. Im not one to just roll over and take it. I WILL shout and I WILL be heard. Will post any outcomes as they arise!
Thank your for your reply. One leg swelled to 37 inch around the fullest part and the other to 32 inch so yes they were quite large.
hi sue
congratulations on fantastic results but, as you say, you don't want to stay in bandages for ever
i agree it shouldn't be the dn who tries to sort out your stockings
& the consultant may not feel like he needs to see you, but you need to see him! i suggest you ring the clinic yourself & do your shouting at them!
ultimately, you may need to see a plastic surgeon & that'd need an exceptional funding application - unless you're a young thing, your skin's not going to have enough elasticity to bounce back to how it was before the lymph stretched it
i've just had that done where skin got stretched so much on my chest - worked great for me but obviously there are scars to manage & lymph doesn't get past scars, so if you had to have a cut all the way round your ankle i'm not sure what options you'd have for delymphing your foot & lower ankle
but that's what lymphoedema consultants & plastics consultants are for - they ought to be able to talk to each other & come back with at least one plan to suggest to you, otherwise that skin's just going to fill back up with lymph unless you manage it really actively for ever
good luck
Depending on the type of stocking you were going to have the measurements and guide to measure are usually on the instructions. I had reasonable care from my gp practice but took 2 yrs to get to a clinic, i wore my bandages for 9 months and yes you do get fed up. Ive just gone back into them for a few days bit of flare up, Think most of us have the issues you are having and its not right, we didnt ask for this condition and deserve better help and support, good luck it will be nice when you get into the proper compression garment. If you go on to DAYLONG site they sell all the garments but they have measuring guides on there relating to the products they sell as information for yourself.
When I had my first compression my feet were bandaged too! That stopped any 'cankles' that would have emerged! But as everyone says, you do have to fight and make a noise, and I have to say my lymph clinic are very, very good. Any problems I have, I can contact them and they will do anything they can to help. Good luck suexan XX
I am finally getting somewhere. My GP has referred me back to the Lymph Clinic so hopefully I maybe one step closer to getting my stockings.
SueXan, if your district nurse is interested in knowing how to measure for custom-fit garments, get her to contact the reps of the compression companies, BSN, Haddenham, Medi uk and Activa all have made to measure hosiery which is available on prescription and will give advice on measuring if asked. There is no reason any shape of leg, arm or trunk cannot have a compression garment made to fit and the more health professionals who learn to do it to help their patients, the better.
R these stockings like flight stockings?
Lymphedema clinics/MLD massaging in Bedfordshire 
Leg pump?
Travelling abroad with lymphoedema 
Wraps
Jobst Elvarex made to measure knee length socks
