Spoke to my lovely LD nurse today and fessed up that I have damaged the mitten part of my sleeve. When I explained how,and that I have now resolved the problem for the future, she says if I can hang on until I see her in 4 weeks time she will get me another one on prescription. Result!
Norberte I think I might put this one in a glass case with 'wear only in emergencies' on the front, what do you think?
I have had 5 made to measure Jobst sleeve and glove. Unfortunately I the therapist measured me incorrectly but it is out there to have under the NHS!
I am now so frustrated trying to find someone who will measure me correctly, as I now have lymphoedema on both arms...
Well norberte you made me laugh amidst my frustration. I have now had another phone call from someone at my local surgery to say they have sourced an nhs made to measure but it will be several weeks before I get it. I supposed I am grateful that they have finally sorted this out but I was supposed to get my sleeve in time to wear during my shoulder surgery on Friday....that is obviously not going to happen!
Vivrog, I was initally given a sleeve, ie just a sleeve, to the wrist and had the same prob, I went back to the LE nusrses and they changed it to a one that goes down to the knuckles which has been fine. I also had to ask for longer arms I have no gorillas in the family that I know, but the first effort was made for a midgette. So now fine, except for itching at the thumb webbing area which I hit with tolnaftate (athlete's foot) spray whenever the sleeve comes off. And except for one very hot day last week when i felt the hand/fingers swelling sausage-like and did all the usual right things: rest, elevate, hydrate, clench fists, panic slowly... I get mediven sleeves and yes the pilling on the hand bit has been quite serious, they look really tatty. Nearly due for my six-month overhaul, I am hoping to get the same again but in realistic skin colour this time. Very tempted to spray-paint some freckles onto it LOL.
That's a load of rubbish. I got a made to measure sleeve on the NHS. It was very strong and I did not like it at all. But then, we are all different and it may be okay for you. Actually, thinking back, the Lymphoedema nurse sent for the sleeve so I did not take the measurements to the doc. How about you ask your BCN if she can send for it.
I had a sleeve with no hand and it did send the lymph up instead of down. The combined glove and sleeve worked best for me.
Hope you get this sorted.
Viv I'm not in your situation, but the sleeve I have includes a mitten. This was given to me to stop the LD in my lower arm from going into my hand. Was your sleeve just a sleeve or did it include a mitten or hand piece
Hope you can sort it out
Not strictly on topic but can I ask advice? I was prescribed a sleeve (Mediven) but it caused swelling of my hand and so I was re-measured for a made to measure one. The nurse at the hospital wrote all the measurements out and told me to take it to my GP. 10 days later and many phone calls I have been told that I can't get a made to measure sleeve on the NHS. I find this hard to believe. Have others had this experience?
Norberte I had found the link to sigvaris over the weekend and for anyone with the same query I have now phoned them and they will sell direct. Not cheap - nearly £50 each but I feel so relieved that I can sort this out for myself. The NHS are great but sometimes I feel as if their rationing is causing stress that I just don't need.
how dare you spoil your sleeve by wearing it & trying to make it comfortable?? who do you think you are, woman??
Try the Lymphoedema website - they have an on line shop which includes sleeves http://www.lymphoedema.org.
Not purchased anything from them but have contacted them for advise in the past - Tel 020 7351 4480.
Thanks for your advice, I have done an Internet search and drawn a complete blank. If all else fails I will contact my LD nurse which is not easy because we only have 2 for the whole of our PCT.
When I first had the sleeve the nurse checked it and said it was a good fit. My problem was where the fabric tightened down around the base of my thumb it was causing me a problem with already existing arthritis. I have now solved that by putting a very small wad of gauze under where the fabric sits in a skin crease.
I will keep searching
I can understand what happened there and easily done. I don't have those sleeves but it's probably worth asking your lymphodema nurse or whoever prescribed them and say you'd like to buy a couple more at your own cost.
Otherwise it will probably be a case of internet searching although there are some very knowledgable people on this site who may be able to direct you.
If you've felt that you need to pull around that much though I'm wondering if they are fitting you okay? Were they so tight that they were pulling your fingers together? If yes, then probably too tight and maybe you need a different type of sleeve.
If not, then around that part of the glove they do tend to feel quite tight to start and then stretch very quickly with use. Mine feel a bit too tight for about a week and then they are fine.
Recently DX with mild LD I have been given 2 sigvaris advance sleeves on the NHS. Because this is all new to me I am guilty of pulling them around quite a bit to get them comfortable on my hands and thumb and have consequently over stretched the palm pieces.
Now I know how to deal with this it shouldn't happen again but it is several months before I am allowed new ones on the NHS.
Happy to buy for myself but can't find them available on any site in UK - can anyone help please