Hi,
I have lymphedema in my left leg from cancer treatment and it’s getting worse so I was thinking of getting a massage machine.
I have just had 4 treatments at my clinic to see and I’m still unsure.
It’s £1200 so want some advice from others that bought one.
I do wear compressions but not what I really need because I have other conditions which get worse with tights so mostly only put the knee high ones on.
Any advice would be greatly received.
Thanks
Clare
Did the clinic teach you how to apply self lymphatic drainage prior/during/after use of the device, in order to get maximum benefit?
No they didn’t. They not been great to be honest.
I have to take paperwork from them to fill out if I do go ahead , they might tell me more then.
You need to be shown self drainage - the IPC (Intermittent Pneumatic Compression) devices must be used at the same time as you doing some work from the inside. If you lie back and think nice thoughts for an hour, there will be no benefits, and like so many of these devices I've seen over the years, will soon find itself on eBay or in the back of a wardrobe!
I was on a trial at John Radcliffe Hospital using two machines - one costing £1,200 and the other £2,000. Both gave excellent results for ME - nurse in charge said others also reported good results, so maybe you could contact their Lymphoedema Clinic and ask for results of trial.
Lymph Assist is a good device to use as part of your self maintenance and of all devices is probably one of the simplest and safest as it is pre set. That said. I agree with Lynora, you need to be taught how to do self massage before and after use of the machine to ensure that lymph nodes are emptied before and after, and that drainage away from the root of the leg is ensured, to get the best benefit of the device. My one concern is that you mention hosiery is problematic because of other medical problems. Do check with your therapist that using a pneumatic pump is not going to exacerbate your other problems and that you have no contra indications for this device.
I’ve had surgery on vulva and radiotherapy on vulva and groin for vulval cancer so the compressions hurt and make the groin skin peel of , plus nerve damage in thigh also causes a problem.
I also have a skin condition called lichen sclerosus which also makes wearing the tights a problem.
My clinic are happy for me to get one I just wanted to see if others with / had one think it helps.
I’m taking the paperwork and get measured next week so will ask about self massage.
Hi Clare. I do feel for you. These are difficult areas to treat and manage. And I understand what you are saying about the delicate skin which compression garments can aggravate. It does sound as if pneumatic compression could be a help to you, But if you have genital or pelvic oedema , it might be better to get a machine which also has a tummy garment. (Lymph Flow, Haddenham healthcare ??) .Another thought is that Deep Oscillation (Physiopod uk) might help. This can be used to enhance your self massage and can be useful for delicate skin areas and areas which compression is not appropriate/comfortable for. Hope you get some help, advice and relief.
Hi Clare
Just to share my experience.
I have lymphoedema (LE) in right leg, extending from lower abdo to toes, since treatment for cervical cancer about 3 years ago. I started off with Sigvaris circular knit tights, then a thigh length stocking with silicone band, then a stocking with waist attachment followed by a glue on stocking. Out of all of them, comfort wise I got on best with the stocking with waist attachment and the glue on stocking. I don't perhaps have as many difficulties as you in the nether regions, nevertheless I am prone to soreness/itchiness in my right groin and also in my labia (sorry if tmi) so I have to be careful - I don't think tights allow for enough ventilation.
Although the circular knit stockings were very easy to wear my LE was getting worse so for the last six months (after trialling a Medi stocking and a Juzo one legged panty stocking) I've been in a Juzo class 2, custom fit, flat knit glue-on thigh length stocking (the stocking is open toe and I also wear toe caps). This is my best garment so far as it seems to be maintaining my LE and it's OK to wear. I wear the stocking for about 12 hours then change to another set of toe caps and an anklet - so no compression above my ankle for 3 hours prior to going to bed, and no compression at all in bed, but my legs are mostly elevated during that time. After washing off the glue I apply Aloe Vera Gel to that area.
About a year ago, like you, I had about 4 sessions with a Lymph Assist and wasn't sure - I'm not convinced it'll help me any more than my SLD. Currently I do about 10 mins (longer if time allows) deep oscillation (Physiopod UK) in the morning before putting on stocking. I do 30mins SLD/pilates/strength training (I find SLD on its own too boring) in the evening after removing stocking. Every other day, in the evening, I do 5 mins low level laser therapy (win-health.com/handy-cure-l... on my foot/ankle and another 5 mins on my lower leg/just above my knee. I'm fairly new to the oscillation therapy but my lower leg seems to feel better afterwards. I'm also new to the laser therapy but was persuaded in that my lymphoedema nurse says that one of her other patients thinks it has helped with a foot.
Also, I am very careful that knickers do not constrict me anywhere - personally I find no VPL ones best. I also wear a lymph pad in the mons pubis region. I also observe good skin care, keep active and maintain a healthy weight.
It sounds complicated but it's something that has evolved over a period of time and it sort of fits into my life. And I give myself a day off sometimes - probably not the compression garment - but I miss out on SLD or the therapies now and then.
Good luck in your quest to get improvements.
Thank you.
Yes I have tried many compressions including the ones you mentioned.
I wear the stocking to my knee every day but the others I don’t use often as hurts and causes problems.
The nerve damage on my thigh is where the stockings stop so that hurts even with just glue holding them up.
I also have the pad to put in my knickers for my mons but once again that causes problems and once home I don’t wear knickers.
I have never been shown anything to do other than to wear compressions in the 2 years so I will ask about self massage etc.
Perido, well done. You have clearly become very pro cative in self management and as your story proves, theer isn't one treatment for all. It's about trying different things in combination which you're doing. Some really good tips as well which I will pass on to my patients eg: no VPL undies... I hadn't thought of those. Thankyou and take care.
Sorry that you are having such difficulties with managing your lymphoedema. It can take a lot of hard work, trial and error to get improvements - I consider my own issues a work in progress.
Just to add, I use medi lymphpad cut into a triangle with the corners rounded off for my mons. I cover it with 2 way stretch tubifast (blue line) for comfort and hygiene.
I hope you can get some progress with SLD.
Hi ClareB43. It's a particularly difficult time for peole with Lymphoedema isn't it? Just keep on with your fantastic skin care, SLD and compression regime for now. Once our clinicians can re start clinics it will be easier to get back on top of changes if you've kept up with your own self management as well as you always have. Keep safe and well.
Lymph Clinic finished
Manual lymph drainage not helping
Living with lymphoedema 
