Wondering why four weeks of NHS compression bandaging ... - LSN

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Wondering why four weeks of NHS compression bandaging didn’t work – and what might?

caroline111 profile image
10 Replies

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?

10 Replies
On_porter profile image
On_porter

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.

Where are you being treated?

caroline111 profile image
caroline111 in reply to On_porter

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.

Anne16 profile image
Anne16

Hi Caroline,

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.

caroline111 profile image
caroline111 in reply to Anne16

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.

On_porter profile image
On_porter in reply to caroline111

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!

Perido profile image
Perido in reply to On_porter

Compression garments can be either circular knit or flat knit. I think the following link explains the difference fairly well: lymphconnect.co.uk/products...

Perido profile image
Perido

Hi caroline111

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.

caroline111 profile image
caroline111 in reply to Perido

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).

Perido profile image
Perido in reply to caroline111

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.

veriterc profile image
veriterc

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...

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