I have secondary lymphedema in my right arm and hand. It only affected my upper arm till 6 moths ago but now it has gone all the way Down. I have got custom judo sleeve and glove which I can no longer wear as it causes further swelling in my hand. My lymphedema clinic can't offer me mld till January. I have had bandaging twice privately and my clinic loaned me a lymph assist machine for 3 weeks, which did not seem to help. I've enquired about private via but it's around £16,000 which I can't afford. Can anyone give me advice please. I would be very grateful.
Severe swelling in hand and wrist: I have secondary... - LSN
Could you see an Independent Lymphoedema Therapist? mlduk.org.uk has a list of therapists in the UK
I have 3 times but I can't afford to long term. My hand wrist and arm are 40% bigger than my left and wrist is very hard and uncomfortable. My clinic only has 1 nurse just now so it's difficult to get an appointment. Has anyone been successful with the nhs apart from in Wales?
Sorry should be juzo sleeve.
Bless you, sounds like you’re really struggling. It’s hard to know why your arm/hand have become much more swollen. Perhaps you could get a cancellation appointment at your clinic before January.
I’m sure you’re already doing the obvious such as sleeping with your hand and lower arms raised on a cushion to help gravity with lymph flow towards your heart, as well as lymphie arm exercises and SLD?
If you could get a OTT garment and glove that suits your new measurements it could take you through to your January clinic appointment and new Juzo system. Measuring guides and telephone support is available on garment web sites like Daylomg/Credenhill, Pebble UK, and Medi UK. I have Jobst bespoke arms/gloves however last summer with the several weeks of heat I was much too swollen to wear my Jobst, so I bought Juzo gloves and Medivan Harmony sleeves. I curtailed spending on other things to afford the garments as they were my priority.
I claimed PIP (replaced DLA) 2 years ago since my LE impacts my mobility/some physical abilities. If your LE is restricting your normal daily activities eg driving, food prep, etc due to pain and limited mobility, you may want to claim PIP. I use my PIP benefit to pay for weekly MLD from an independent Lymphoedema therapist. The PIP claim process is straight forward but takes time (3-4 months start to finish) as you need to complete paperwork/application, followed by in person assessment, and then await the decision. It’s worth it however as many Lymphies (upper extremity and lower extremity) are approved for PiP on the first application; if not, then after they appeal a negative decision they are awarded it. You can find out about PIP on the DWP website.
Have you tried talking to the Lymphoedema Support Network? They have a telephone helpline - details on their website. lymphoedema.org
No I haven't thank you I will give them a ring.
Have you tried wrapping your hand/arm at night with short stretch bandages? Wrapping is for reduction and compression for maintenance - there are you tube videos for reference. I have arm/hand swelling & this has been effective for me, working better than ready wraps. I have a custom juzo garment which goes from fingertips to underarm as a separate sleeve & glove made my hand swell more - not practical but it works & i use disposable gloves when i need to cover my hand. Good luck.
Get some advise from you GP, Lymphod clinic or try some massage and elevate your arms if you can.
Booked in next week at Christie for private liposuction on my arm as very swollen and heavy. Has anyone else had this ? I would be grateful for experiences and advice.
I have had my liposuction on Friday. My hand is really sore now but my arm is bearable. Cannot get a response from my lymphedema nurses to order new garments so going to ask breast care nurses if they have sleeves I can use until I can get new juzo ones. I have to stay in bandages until I can get them. The surgeon took 1.5 litres of mainly fat and some lymph fluid out of my arm. It was 50% bigger than my normal arm. Hopefully it will be worth the pain and expense when I have fully healed.