Today I’m without bandaging after four weeks of it on my right leg which has been steadily swelling for the last 18 months. I have had lymphoedema in both legs for ten years following cancer treatment but 18 months ago the right leg started getting worse. In that time I have gone up to class 2 circular-knit tights plus a class 1 stocking, had a lot of LymphAssist, and did SLD morning and night. Before the right leg got worse I had been running 30-40 minutes for three times a week but stopped because I felt it was making it worse and was painful. I still walked a bit but not so much, again because it seemed to be worse. If the swelling had gone down after activity I wouldn’t have been bothered but this was against a background of it slowly but surely increasing in size, regardless of what was being done.
I was so pleased when the NHS clinic offered me a month of bandaging twice a week with Lymph Assist plus flat knit tights as this seemed the only treatment I hadn’t tried. Today the bandages are off and although my ankle and thigh are a little better my calf and knee are no better, in fact my knee if anything seems bigger.
I’m obviously very disappointed as I really believed this would help. All I can hope for is that the flat knit tights might at least stop the leg from getting any bigger. I have to wear them 23 hours a day for the next two months! Does anyone know why the bandaging wasn’t more successful? Might the flat knit tights stop my leg from growing any more?
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caroline111
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The problem with doing it twice a week, is that the bandaging would reduce the swelling but then when you don't have it again the next day, it'll just go back to it's original form - I can't believe the people doing the bandaging don't realise this. Or they should definitely be suggesting a higher class of compression. When I had bandaging done years ago on both legs (I cant remember the time length), as soon as it was done I was in class 4 compression - my entire leg. Class 1 would do next to nothing in my opinion. Honestly, the type of compression you're wearing probably won't help unfortunately.
In terms of your knee getting bigger, if the bandaging / compression is only on your lower leg then this would make sense - the fluid has to go somewhere, right!?
I'm also a bit surprised at having to wear the compression they're giving you for 23 hours. I have never ever worn compression at night because when you are asleep and your legs are up, this reduces the swelling by itself.
Sorry, I probably wasn’t clear enough about the treatment. I went to the clinic twice a week, bandages removed, had LymphAssist and bandages were put on again straightaway so had them on virtually all the time. I have now been put in Class 2 flatknit but they want to change it to Class 3. I don’t think I can manage that, TBH. It’s only for 23 hours for the first two months but it’s extremely uncomfortable. I’m beginning to think that if the bandaging doesn’t work why would the flatknit tights but I will comply as there is no alternative.
I have primary lymphoedema in both legs and feet (since birth) I have had full leg bandaging in the past, on more than one occasion, and found the improvement in the swelling to be fairly temporary. I wear Class 2 Flat knit, for most of the day, but never at night. I have also had MLD several times, with the same results only very temporary. I do believe, that not everything works for everyone.
However, wearing the right prescribed, made to measure compression totally works for me and I would not be without my hosiery. Take care and good luck.
Thanks for your reply. Wearing the tights at night is ‘only’ for two months but I’m beginning to wonder how effective it will be given how the bandaging just didn’t really work, not even temporarily.
I'm not entirely sure what flat knit is. I'll find out what mine are when I get home later. But the idea is that the compression stockings keep the ''shape'' of your leg after the bandaging. Of course, this is easier said than done!
Compression garments can be either circular knit or flat knit. I think the following link explains the difference fairly well: lymphconnect.co.uk/products...
Assuming you had your bandaging on all the time for a month, with refreshed bandaging twice a week,it does seem surprising that you didn't get a better result.
Were you advised to exercise e.g. walk as much as possible whilst you were in bandages? Bandaging won't work well if sedentary. My other thought is that it depends on the nature of your swelling as to how effective bandaging might be; bandaging is effective at moving excess fluid but I'm not sure it can do much if there is a lot of fibrosis.
In my experience flat knit garments are much more effective at controlling swelling than circular knit. However it's important they fit very well and are the correct style and compression class for you. I have a custom made class 2 flat knit thigh length stocking which has controlled my swelling well for nearly 3 years. However it took some trial and error before I got a stocking that fitted well. If you feel your new flat knit garments are not working well let your lymphoedema specialist know asap.
Thanks for your reply. I wasn’t advised to walk although I did a bit. Unfortunately, the heatwave made it almost unbearable, and I was conscious that in the past walking in the heat had made my legs swell, even when my legs had been stable with lymphoedema. Now that I have flatknit tights I’m going to be much more active plus it’s cooler.
I’m beginning to get a bit of fibrosis at the back of the thigh and the nurse said yesterday that the swelling around the knee is probably fat which is more difficult to move than fluid so you’re probably right about why the bandaging was so ineffective.
I just feel so devastated that the bandaging didn’t work. I know some people have had LVA but if I go to a surgeon, aren’t they likely to recommend it regardless? All I want is for the leg to stop growing, not necessarily reduce it (although that would be a bonus).
The heat doesn't do us lymphies any favours; I guess it was unfortunate timing that you had bandaging during a heat wave. Like you I have a bit of fat (lymphoedema related) round my knee. I've been very compliant with the advice from my lymphoedema clinic and worn my flat knit compression all day every day and still the fat persists; however it doesn't seem to have got worse in the past 3 years so hopefully my efforts are helping.
2019 I had an assessment at the Oxford Lymphoedema Practice with a view to having LVA and bandaging wasn't mentioned. My assessment included a ICG lymphography scan which unfortunately showed I wasn't suitable for LVA. I was disappointed, but even so the assessment was worthwhile as it gave me a better understanding about my lymphatic system.
Hi please could you elaborate on why you had a ICG scan and what ICG and LVA are abbreviations of as I am very interested in knowing more about the support and treatment some get and how that varies depending on where you live. I think more should be done to fund people all over the country to be able to manage the debilitating symptoms we have and the pain and discomfort we endure.
There is still room for improvement regarding awareness and training for doctors and nurses as only one new young doctor at my surgery knew anything about lymphoedema and that meant I suffered for years not being diagnosed,
ICG stands for indocyanine green, which is a green medical dye. An ICG scan involves the injection of ICG under the skin and an infra-red camera to map lymphatic function. The following link from the Oxford Lymphoedema Practice (OLP) provides further information: olp.surgery/understanding-l...
LVA stands for Lymphaticovenular Anastomosis. It is essentially a bypass operation which connects lymphatic vessels and blood vessels to enable lymphatic fluid (in an area of lymphoedema) to drain into the blood circulation rather than building up and causing swelling. The following link, also from the OLP website, provides further information about LVA as well as other surgeries which can be used to treat lymphoedema: olp.surgery/how-we-can-help...
Images from an ICG scan can used to determine the quality of the lymphatic vessels. In order for be considered suitable for LVA there have to be good quality lymph vessels to enable a successful anastomosis. Unfortunately the ICG scan showed my lymphatic function was poor (= poor quality lymph vessels) and I was advised I wasn't a suitable candidate for LVA.
As you are already aware many doctors and nurses have little knowledge of lymphoedema. The Lymphoedema Support Network (LSN) has done a lot of work to address this problem and provides online training modules for GPs etc: lymphoedema.org/healthcare-...
I recommend a book, recently published by the LSN, as a good one stop source of information about lymphoedema: lymphoedema.org/product/lsn...
I heartily agree that more needs to be done to fund people to manage their lymphoedema. Us lymphies need a collective voice and for me the way forward is to support/donate to either of the following:
Compression garments didn't work for me either. But I was lucky that my job took me around Europe; ; a Hungarian told me why the garments weren't working for me, and recommended MLD, Germans and Italians added sensible advice, and I realised I could get treatment in UK if I took control - so wrote about what worked for me on aftercancers.com/my-lymphoe...
You are assuming that the problem is fluid. I agree that bandaging should help to remove fluid on a temporary basis to give a significant reduction that is then maintained in good fitting and smaller compression garments. However if the excess volume is caused by fibrosis / fat excess then compression will not move or reduce this element of your volume excess. If fact, if there is a fat excess (caused by the lymphoedema) then none of the non operative treatments will have much of an effect. I commend a look at the work of Hakan Brorson who has pioneered treatments for this problem. He is based in Malmo in Sweden but his approach has been reproduced in many centres around the world.
My Google search indicates that Hakan Brorson performs liposuction to treat lymphoedema that doesn't respond well to conservative treatments. Subsequently, patients need to wear well fitting compression all day and all night, apart from when bathing/showering: lymphedemasweden.com/lymphe...
As far as I'm aware, and to the best of my belief, there are 3 UK based surgical teams who are properly qualified to perform liposuction on lymphoedema patients:
The Oxford group (OLP) were trained by Brorson and spent time with him to learn his technique. (I think Kelvin and Anne will be similar but don't know for certain). FYI - liposuction for lymphoedema is a very different technique than cosmetic liposuction and experience with one technique doesn't mean you should be doing the other (ie not every plastic / cosmetic surgeon can do lipo in the situation of lymph oedema)
Hi Caroline, I have had secondary lymphedema in my left leg for about 10 years due to surgery for Ovarian cancer. It has been a long journey getting it under control. About once a year I go in for decongestive therapy which can last about 6 weeks. Like you, I go in twice a week for new bandaging. The measurements taken when I see the Therapist determine how long I will be bandaged. Once my leg is as small as it will go, I go into the Mediven Plus Thigh High Compression Stocking 30-40 mmHg. I have tried many of their versions, this is the only one that works for me. I only wear these during the day and never at night. At night I switch to the very comfortable Tribute Night Garment. It's like sleeping in a giant oven mitt, this garment has been a game changer for me. These are custom made and require a prescription from your doctor. I have recently fought my insurance to get a Flexi-Touch pneumatic compressor. This has also helped a great deal but is unfortunately expensive. I went through several appeals with my insurance and finally won. I also jump on a Bellicon trampoline and do walking (not swimming) laps in a pool to keep things under control. I sympathize with your struggles.
Hi RobinleighI hear your point about how long it can take to get our lymphoedema under control; so much trial and error. I've had secondary lymphoedema (cervical cancer treatment) for 5.5 years and managing it is an on going work in progress. It has had a big impact on my life style; managing feels like a career at times.
I'm in the UK and have had Juzo class 2 custom made thigh length stockings for 3 years. I'm currently trialling custom made toe caps. Also trying out various things to control the swelling in my hip/buttock, which has been troubling me for a year or so.
A popular option here in the UK, for night compression, seems to be Comfiwave garments from Haddenham.
I use a Physiopod deep oscillation therapy unit to facilitate my SLD, on a daily basis. And occasionally use a Lymphapress pump.
Hi Robinleigh the night garment sounds interesting. I don't wear anything at nights except occasionally my tights. Even getting flat knit was an effort and I've only had them for three months but the size is wrong which is enormously frustrating so still feel it's not really under control. The flexitouch compressor looks good but not sure it would work on my leg as swelling is mostly fat.
Compression has never worked for me. It gave me extra ridges a very sore thick line of redness at the top of the socks, cut my circulation off more giving me numbness and pins and needles, and increased my knee size as fluid went to the nearest point it could. After a few months I gave up trying t wear compression and found exercise the most helpful and of course keeping my body when rested just above my hip line.
I still get lymphoedema today and occasionally it is very painful. I had Covid 5 weeks ago and during that time I rested a lot, but the act of resting did take my foot and lower leg down a lot, however, so much resting temporarily trapped a nerve in my left leg. So I can't win.
Now that I am back on my feet again teaching the lymphoedema has returned with a vengeance. I am hoping spring comes quickly so that on dry days in the evening and first thing in the mornings, I can put my rebounder in the yard to do some step exercises and light skipping, as this is the only thing that truly helps my condition. Exercise.
Thanks for your reply, Mo. I also find that the best thing for my leg is to have it elevated. Most of the time I can work at home but when I have to work away it swells pretty badly. Exercise doesn't seem to have much impact. Unfortunately, I found out a few weeks ago that most of the swelling is made of fat rather than fluid.
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