Hi all, I have had mildish lymphoedema for past four years since just after rads treatment and have also been party to the not unusual ignorance of some so called medical professionals.
However, I am blessed with a lovely lymphodema nurse . Lymphoedema very slowly getting worse , though I am putting todays relapse down to the lovely hot weather…but I do really know the excess weight I carry around is doing more damage than good,ah it is Monday, let’s start another new diet day !
Back to the topic…in the past had MLD every couple of months to try and keep condition in check but today I was treated with an oscillation machine, does anyone else get this ? I have another two appointments a week apart for each. It was all very relaxing until the nurse adjusted my arm and my fingers came in contact with her necklace then both of us got an electric shock ! Ouch ! The electrostatic field is meant to penetrate 10cm deep into the tissue and get the lymph moving ,certainly has wiped me out for the day.
Just wondering if anyone else gets this as standard and how are they finding it compared to MLD? Would be interested in comparing notes.
Hi sandra,
Hope you’ve recovered from your electric shock!!
I have deep oscilation thereapy which I pay for privately (performed by my wonderful LD nurse who retired and now does private work). It is very relaxing and I feel that it has helped settle down my LD (especially truncal) when I have a flare-up. She is very impressed with the results on many of her patients.
Because I have now taken IHR (due to computer work exacerbating LD) my LD has been so much better and more manageable, so haven’t had to have any sessions since March, which is great.
I am sure you will get a mix of positive and negative experiences from users but from me, it’s a thumbs up!
Hope this helps! XX
Thanks Happyshopper, I am lucky that I am getting this treatment on the NHS, seems to be a bit of a postcode lottery with this , do you have a series of treatments or just a one off when you need it?
Was just wondering if this was the new way of treating around the country or just for the lucky few.
Seems to have done the trick with my arm feeeling noticably better so a thumbs up from me too !
Hi sandra,
I ususlaly just have a session when I am having a bit of a flare up. It’s the one perk you get with LD to have such a relaxing treatment!
I’m glad that you get it on the NHS and according to my LD nurse, this is happening more across the country.
I believe in Germany they actually use this treatment post surgery, to disperse any fluid build up immediately and help act as a prevention. It is also apparently popular in sports injuries.
Enjoy! XX
Hi - I’m glad it’s helping you so much. I’m in Germany and this Hivamat is somewhat controversial there. It may help if the lymph has been left untreated for a long time and got really hard. Otherwise manual lymphatic drainage is preferred - a lot of lymph pathways are near the surface and need really light treatment. You can get MLD two or three times a week - I stuck to once but I did spend three weeks in a lymph clinic being treated twice a day. I have never encountered this electtric machine anywhere.
What I find useful is Komprex II, a kind of wavy foam-rubber pad I cut to shape and keep inside my bra (lymphoedema of trunk and breast) - it gives a light massaging effect and means I don’t need MLD so often.
Hi Zeppa,
Thanks for your post - I am interested to hear about Komprex II (foam pad) that you use. I too have LD of trunk, chest and now arm and slightly hand. I find the truncal LD quite troublesome and because I have had it since 2006 it is chronic and appears to respond more to the deep oscillation than my arm (which is more recently diagnosed). That fits in with what you are saying.
I have to say - since I have taken medical retirement (computer work was causing awful flare ups of my LD) and avoid anything which causes aggravation as much as possible, my LD has been so much more settled . I miss working hugely, but I am enjoying the benefits of not having the continued aggravation to my LD and therefore I feel that it is much more manageable.
XXX
Have you seen this Komprex? I found a picture on a US site:
I got a big sheet like that and simply cut a piece out that fits inside my bra, from the middle to round my back a bit. The shape is roughly oblong but it goes up a bit at the ends to fit round the breast and back. I cut a piece of an old piece of cloth out first as a guideline. It probably looks a bit odd to people who look at my breasts, and I don’t use a prosthesis I got because it’s worth more to me to keep the lymphoedema down. When I take it off at night, the breast is covered with indentations from the foam rubber strips.
The truncal lymphoedema started after my operation in 2008. They removed 600g from my breast, which is or was large. I would have been better off with a mastectomy. The radiologists say the problem comes from radiation. It was not treated for a long time because my gynaecologist didn’t know breast lymphoedema could be treated. I must admit that now, over five years after the OP, the lymphoedema is improving a bit so I am careful to use the foam as I’m not getting MLD at the moment. I’m sorry yours seems to be permanent, but I thought mine was too.