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19381959 profile image
12 Replies

Hello - I was diagnosed with - fortunately for me - mild lymphoedema in 2017 and have been wearing knee length compression stockings on both legs although the lymphoedema is only in one leg - I am shortly due to have a knee replacement on the affected leg and the leg clinic say I will then have to wear FULL LENGTH stockings and I am afraid my quality of life will be severely curtailed after reading some of the dreadfu; suffering some of you experience. I know I have been lucky so far and would like to continue being lucky - any sufferer with similar experience and/or advice This is the first time I have posted anything

12 Replies
Lynora profile image

Keep your knee highs and wear the full leg garment for a few months post-op (you won’t get them on for the first few weeks - don’t worry - you’ll be fine) then revert to the knee highs when you feel able. What product are you currently in?

19381959 profile image
19381959 in reply to Lynora

Thanks for reply Lynora - still not decided whether or not to have knee replacement. Prospect of possibly having to wear full length stockings afterwards both frightens and terrifies especially as I only have the lymphoedema in one leg and the swelling at the moment is minimal to when I started. I am 80 years of age and am afraid that my quality of life will be reduced if not stopped - I don't have much of a problem wearing knee length stockings on both legs and know I am lucky after reading some of the horror stories on "Health Unlocked".. The stockings I wear are "JOBST Opaque class 1 below knee closed toe lymphoedema garments".

Thanks again for reply.

19381959 profile image
19381959 in reply to Lynora

Hello Lynora and others who were kind enough to reply to my query

My apologies for not contacting you all again sooner but I have decided NOT to have the knee replacement, probable coward that I am, especially after reading how much some of you suffer - as I think I said, I have quite a good quality of life at the moment and knew that I would lose that for at least a period but was more afraid that I would lose all my quality of life for good - I really don't know how some of you cope - it is so unfair and in fact disgraceful how little help and understanding there is available.

As I said, my lymphoedema was only mild and now seems to be fairly well contained - I will continue reading the Health Unlocked web site and hope that you all get the treatment you deserve.

My very sincere thanks to all of you and very best wishes for a better future.

Paulus22 profile image

Make sure you don't rush your discharge, I was discharged too early and I developed cellulitis below the knee.

19381959 profile image
19381959 in reply to Paulus22

Thanks for reply Paulus - prospect of possible cellulitis scares me - I had it in 2014 and had to be hospitalised for intravenous antibiotics. It happened again last year leading to the lymphoedema. I hope you are much better now - do you have to wear the full length stockings? I only have the lymphoedema in one leg - the one requiring a knee replacement - but wear knee length stockings on both and the swelling is minimal looking at some of the experiences suffered by some "Health Unlocked" . The possibility of having to wear full length stockings worries me considerably - especially as the warmer weather - hopefully - approaches.

AnneBury profile image

My sister has learning disabilities and wears full length and toe caps on both legs plus a knee length made to measure on one leg as well. We are just getting her organised to go on a cruise tomorrow (with a group of adults with learning disabilities and carers). She is rehearsing for a play at Birmingham Rep and partakes in dance shows and sing and sign. Her lymphoedema (and full length garments) does not affect her quality of life. When she had her bunions done her lymphoedema did get worse for a while but returned to its usual level after a few months.

The Lymphoedema Support Network lymphoedema.org has information for operations with lymphoedema. Presumably you will be on a course of antibiotics to minimise the risk of cellulitis.

19381959 profile image
19381959 in reply to AnneBury

Thanks Anne for reply - I am still wondering whether to go ahead with knee replacement mainly because of the possibility of having to wear full length stockings which I fear will reduce - or even stop - my quality of life. I am 80 years of age and have been lucky so far - touch wood - my lymphoedema in one leg - that requiring surgery - is minimal - long may that continue especially reading some of the horror stories on "Health Unlocked". Good to hear your sister is doing well and hope she has a lovely time on her cruise. I am not on antibiotics at the moment but if I do go ahead with surgery will request them to minimise the risk of the "dreaded" cellulitis.

Thanks again - every good wish.

AnneBury profile image
AnneBury in reply to 19381959

You tend to hear the worst on health unlocked! Those managing well don't tend to post. Please do contact the Lymphoedema Support Network if you have not already done so. With very best wishes.

Hi 19381959 - I'm a physio from Australia (living in USA at the moment). I wonder if the full-length stockings 'they' are referring to are the TEDs stockings (anti-embolic). I haven't seen anyone wearing full-length TEDs in years (I recently worked in a rehab hospital - our total knee patients would be wearing knee hi TEDs). Most people who do not have 'perfectly shaped' legs can't wear the TEDs anyway - they cut in, constrict, roll, tourniquet etc. My advice - if you need the surgery, don't let the thought of the stockings stop you. Tell your surgeon that you have your own compression stockings and that you will wear them (they will have more compression than TEDs anyway, and hopefully fit better). If you have heaps of swelling post-op, then you may just have to go without compression until the swelling settles. If you have access to a therapist who can do MLD and bandaging, that would be great in the post-op period. Also, you may benefit from getting some Velcro wraps (like Ready Wrap or Farrow Wrap) to wear while your swelling goes down. Most hospitals will also have you on anti-coagulation therapy post-op, to decrease the chance of DVT's. If you have any questions, feel free to friend/PM me. Are you linked in with a lymphoedema clinic? Ask them for advice too. Clare

I wear a full length custom made Jobst stocking on one leg. I can vary between a class 2 and 3: depends on the swelling. The biggest difficulty that I have is getting shoes and trousers.

Really, if you’re only in a class 1 you won’t have to fret. Believe me, the discomfort that you’ll feel for a couple of weeks is nothing compared to leaving it untreated.

Just be very meticulous about hygiene and your leg. The last thing you need is an infection. I’ve had dozens, and they’re getting more serious everytime. The tissue in your leg hardens, scarring happens in the vessels and it takes longer for the swelling to go down.

Remember, wherever skin folds on itself there’s a potential habitat for bacteria, so keep your toes, the back of the knee and your groin clean and dry.

Wear the garment. You need to get used to it, and keep it clean too. It’s the infections and the swelling that are terrifying.

Kallenubble profile image

Hi 19381959, I’m sorry to hear you have to have a knee replacement, in the same leg as the lymphodema. Did they tell you you will have to wear full length stockings because the lymphodema will grow to affect the whole leg? Or because it’s not good to have stockings end where the new knee begins? Are the people who told you knee replacement experts or lymphodema experts? In any case, if you do have to wear a thigh thigh stocking, I’m quite sure it won’t be nearly as bad as you expect it to be. I wasn’t happy when I had to switch from knee high to thigh high (when I wore the former, no one told me I had lymphodema; I just thought the swelling was a long term problem from an ankle sprain), because it is a little less convenient and will be hotter in the summer. But it’s not that big a deal, I can do the same things I could before, and I work out every day. I mind the fatter and more swollen leg more than the stocking, and I think if the swelling gets worse I will be more upset. But I have 20-30 mg compression and I’m sure I would rather wear this stocking than have a knee with enough immobility and pain to require a knee replacement.

Good luck and keep us posted!

I have been wearing a full thigh high stocking for 13 years.. and will forever.

I have base lymphedema.. I am very slender .. flexible so easy for me to put on...

I wear panty house... over both legs so they match unless wearing pants etc and simply wear a matching stocking with no compression.. sometimes I have bought compression panty hose feels like I am wearing a straight jacket below the waist..

yes I understand some people have a very difficult time with this disorder. it can be challenging frustrating overwhelming we all learn in our own way how to handle it. I do yoga and stretching exercises in the am and pm along with lymphatic massage I learned from my therapist

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