How do you know if the compression you have is right for you?

I first got swelling in my right leg in August 2012. It came out of the blue and I've never had cancer or anything else that should have affected my lymph glands. My GP sent me for tons of tests and eventually sent me to a vascular consultant on Feb 11th 2013. He diagnosed primary lymphoedema.

It took a week or two to get stockings in the correct size but I now have them and have been wearing class 2, thigh length stockings (medi brand) for about 3 weeks. When I started wearing them my right ankle was 3.5 com bigger than my left, it's now down to 2.5cm bigger.

I'm a bit worried that my affected ankle is still bigger than the other one. Does it mean that I need class 3 stockings? or some other form of treatment in addition to the stockings? Or is it just too late and I'm stuck with that 2.5 cm now and will never get rid of it?

My GP has no idea what to do with me and is encouraging me to wear below knee stockings because he says they'll be more comfortable (even though I have swelling in the thigh too). I have the impression that if I know what I need and can explain it then he'll do it though. I am going to tell him about the learning module available to him but I don't know if he'll take it.

[Lruk]

Hi Faethe,

First of all, your GP sounds like he is trying to do what is best for you which, sadly, is not always the case. You should ask if there is a lymphoedema nurse in your area or a specialist clinic that you can be referred to.

Secondly, the swelling in your ankle will take time to go down. From the measurements you have given I would say class 2 is probably right and I would stick with full length stockings if you have swelling in your thigh. I have primary LE in both legs and wear a full length stocking on my left and a knee length on my right. I was advised that wearing only a knee length stocking on my left leg would simply cause the fluid to gather at my knee and make things worse in the long term.

I can't remember how long my legs took to stabilise after getting my stockings but I was initially having to wear 2 different sizes of shoe but now, 4 months on, can wear most of my old shoes, so it may be a case of persevering for the moment.

Has anyone explained about manual drainage and exercising while wearing your stockings? I found these 2 things helped hugely, though I am not as careful and methodical with my routine as I was at first, and I know that is wrong.

Hopefully there will be other answers that can add to this for you. I am still in the early stages with all of this myself and, like you, it sort of came out of the blue and wasn't a result of any trauma though I had a serious bout of cellulitis which the medics think was the cause.

[Vickij in reply to Lruk]

Hi lruk,

Just wondering what your careful and methodical routine was? I'm new to this having had lymph nodes removed for cancer followed by chemo and radiotherapy back in 2007, I think I've had lymphoedema lurking for a while, swelling in feet/ankles for a few years which did go away (but probably never properly away), but have probably been in denial due to my age and what I've already had to deal with, I'm a stubborn patient!!

I've recently had swelling in my right leg (started dec 2012) which I'm trying to manage, I'm under the care of my local lymphoedema therapist via GP but am at the end stage of this treatment, having had bandaging, MLD and compression tights fitted. I'm an active 35 year old (regularly play sport, not so regular at the moment as I'm a little restricted with my leg) and am finally coming to terms with the fact that this is something I need to manage rather than vice versa, so would appreciate any tips on what people do as part of a regular routine to self manage this really frustrating condition. I'm hoping to get a re-referral to the therapist so I can learn self bandaging and to get rid of the last build up from a more recent flair up.

Thank you in advance for any advice.

Vickij

[bathsheba]

I agree with Lruk. It is so important to get the correct fitting garments. I struggled for years with what an NHS cardiovascular consultant considered would be right for my condition; I had constant discomfort and continual corns on my toes from too much pressure from an open-toe garment. Only when I discovered a specialist lymphoedema clinic (luckily not too far away) did I finally get the correct garment for me.

I found this clinic through the LSN (Lymphoedema Support Network).

Hope this helps.

All the best

[LymphSuppNetwork Partner LSN]

Hi Faethe

If you give the office a ring on 020 7351 4480 they will be able to give you details of your local clinics

[tiffany9]

I had an operation to reduce my varicose veins, been given a stocking after the op and then found it slipping down, finally resulting in a horizontal varicose vein just above where the stocking ended. When finally diagnosed with lymphoedema (breast, shoulder and the opposite leg) I went for tights. I also have regular massage from a therapist though, private I'm afraid.The two treatments have really made a difference, the ankle is still swollen but I have very little fibrotic area and most people hardly notice the difference, I can now just about wear the same size shoe on either foot. The variose veins are now well controlled.

Perhaps you could try a pair of tights and see which you prefer? You can have made to measure ones, which are far better. I went for the ordinary ones initially but found they wrinkled round the back of the leg when exercising and became a tourniquet. The made to measure ones are wonderful and you can have them high at the waist to help with keeping the stomach in!

Good luck

[River83]

I agree with the majority of comments here. Mine is secondary in my right leg and was the result of surgery & radiotherapy. I was initially given TED stockings by the hospital which in all honesty were useless, they are not designed for LE and didn't help at all. During this time I was also undergoing some private sessions of MLD and this helped until I was able to get in with a local lymphoedema nurse who literally changed my life.

I was given some Medi Class 2 full length stockings, which did make a difference, however not enough in my opinion. I went back as soon as possible and was offered a course of Coban2 bandaging along with Class 3 Medi stockings for use when not bandaging. I now use the bandaging myself as required and wear the Class 3 stockings all day every day.

I do as much exercise as possible with the compression on and give myself SLD massage regularly and keep the skin in good condition with moisturisers (Aquamol)

My right leg is now virtually the same size as my left and I am amazed at how much improvement I have seen. At it's worst the diameter at my right knee was over 11cm bigger than the left, so I would try to remain positive and I'm sure you will get the swelling down further. Try to see your local Lymphoedema nurse asap.

Best of luck..

[ninewells]

My Consultand has both of my legs measured on every visit. my legs get marked every 5 centimeters along the full length of my leg, both from my ankles to the top of my thigh. every. If he feels my leg measurement has decreased he orders new stockings with new measurements, this way the compression is always at the best that my legs will require. I hope this helps.