Hello all fellow sufferers.: I found this site and read... - LSN

LSN

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Hello all fellow sufferers.

Hopalong
Hopalong

I found this site and read some of the comments. I never realised how many of us there are, and we all seem to go through the same problems/thoughts/fears? However, new things come along all the time, so it's good to be forewarned/learn about them? I'm new to this site, after finding it by accident. I was diagnosed in January, after being treated for years for 'swollen ankles'. I now have the Sigvaris Passion Killer Knee-highs (closed toe) to wear for at least 8 hours a day, although in the few months I've worn them, they don't seem to have made much difference? I've noticed they make me 'bulge' over the tops, and my knees are enormous, but they do seem to have stopped the skin from getting 'flaky', so something must be working?

62 Replies
oldestnewest

Hi

Same thing happened to my mother

She wore them for years.

Her knees bulged like water bottles.

So just recently we gave them up.

All the other noxious side effects of the

Knee highs went too - frozen toes, solid

calves, cold hands due to reduced circulation.

Knee bags are melting away. Ankles are

steady but legs hugely improved 19 down to 16 each calf as lymphatics no

longer restricted by elastic stranglers.

However we do use the Lymphapants

machine 2 to 3 times a week and a recliner seat always.

The stockings were professionally measured always by a dedicated lymphodema nurse - but someone needs

to query if this therapy works for everyone.

How can constricting lymphatics make

them better when it's just what we're also told not to do?

Hopalong
Hopalong in reply to ofcourse

Hi ofcourse. Thanks for the reply. I don't think much is known about this condition at all, although maybe that should read "...don't know what to do about this condition..." - especially with such limited NHS funds? Having this awful condition has led me into reading a lot about the causes/effects/treatment/... online, but it seems that even private treatments are not very effective either, as well as horrendously expensive? Us 'latest batch' seem to be guinea pigs for treatments, whereas years ago, there was nothing known and they just had to grin and bear it?

I do find that after taking the stockings off before bed, and having my feet up all night, my ankles are quite slim in the morning? However, after being 'vertical' for 1/2 hour sees them back to their enormous selves! I've also read from someone else about LIPOedema - something else I'd never heard of - and a lot of things are falling into place which say I may have both conditions together?

I have other, long-term spinal problems which restrict my mobility severely, and within the last 3 years have gone from a size 12 to size 22, so nothing is helping me? Is your Mum able to be mobile....?

ofcourse
ofcourse in reply to Hopalong

Hi

Thank you for reply

She's not very mobile at 99 but tries.

Stockings over the years reduced sensitivity in feet.

She's a lot better now. Recliner chair a great blessing

Lympha pants machine also

The only people who dominate

research are the compression

sock makers

X

Ofcourse

Hopalong
Hopalong in reply to ofcourse

Wow! 99? Fantastic! I'm so glad she's improved, and hope it continues.

You're right about the sock-makers, and (sadly) this is what the world has come to - survival of the richest? ;(

ScouseTaffy
ScouseTaffy in reply to Hopalong

Hi hoppy you keep popping up. How about NHS refusing a referral cos I'm too fat, there is a magic BMI and I am above it. I appreciate their point but LSN told me I should have an assessment at least. Currently I'm fighting on many levels so haven't tackled this. BUT after Christmas look out clinic I'm coming after you!

Hopalong
Hopalong in reply to ScouseTaffy

Hiya Scouse.

...Maybe more Hop-up than Pop-up...? 😊

I had a hip replacement about 4 years ago, and now the other one is giving me jip! But with my increased girth and LD since getting it, I'm wondering what they'll say about another replacement? 😕

I don't envy your clinic - post Xmas! 😱😂

Keep up the fight! 👊

ScouseTaffy
ScouseTaffy in reply to Hopalong

Hip hop not hop up🎼🎵🎵🎶🎶🎶🐏🐑

Hopalong
Hopalong in reply to ScouseTaffy

Like it! 😊

In reply to your post from yesterday, I happened to see this a few minutes ago..... Hope it can help?

healthunlocked.com/lsn/post...

Anne16
Anne16 in reply to ofcourse

Hi, what an interesting and thought provoking post. Do you know had never considered that this 'prescription hosiery' might not be helping. My knees are awful and although my ankles vary from 20" down to 18", I am going to try not wearing the knee highs for a month or so and see what happens.

Thank you so much for making me re-think things. Kind regards.

ofcourse
ofcourse in reply to Anne16

Hi

I'm so glad people are thinking

about it again. My query is if

we must not restrict our circulation how come that's

what we are told to do to

control lymphodema!!!

I do think that this really is

a disability not taken seriously

enough in the work place - we

need to keep our feet up

if not wearing the 'elastic

constrictors' and have a

compression machine on

prescription - over our lives this

Us cheaper than elastic stickings and risks of leaky legs etc. I am only referring to leg

LD - I have no experience of other.

X

Ofcourse.

veriterc
veriterc in reply to ofcourse

I would also like to query current treatment. What do other countries do? Is it just me that gets more benefit from MLD massage once a month than wearing compression garments? I know garments won't work, but NHS will pay for those but won't pay for MLD - weird!

Anne16
Anne16 in reply to veriterc

I have primary lymphoedema in both legs and have found very little benefit from MLD. I have worn compression hosiery for the last 11 years, but now questioning the benefit(s) of those. Giving a trial of not wearing them for a month or so to see if there is any difference - good or bad!

Hopalong
Hopalong in reply to Anne16

Good luck with that. Please keep us informed? xx

Hi Hopalong

I wear the same knee highs and my knees are huge. But I do think you are right about them helping with maintaining quality of the skin.

I find them too painful to wear just now in this heat. Take care and best wishes.

Hopalong
Hopalong in reply to Anne16

I battled through the heatwave with them, but was permanently dripping with sweat! :O I never thought I'd be glad to see cool, overcast days in Wales (the norm)! lol.

Hi Hopalong - were you referred to a Lymphoedema Clinic? If so, report back to them that your knees are a problem - you may need full leg garments.

If referred to a clinic, did they show you how to do SLD (self lymphatic drainage); give you advice about skin care; simple exercises to try to encourage lymph movement???

Anne16
Anne16 in reply to Lynora

Hi Lynora

I used to have full length stockings but could not cope with the irritation which occurred at the top of my thighs and it took so long to get them on.

Hopalong
Hopalong in reply to Anne16

I had the irritation at the top of my knee highs when I first had them - they left itchy spots where the gripping-spots on the top band touched my skin. I now wear them inside-out. The labels do show at the back, but I wear trousers all the time so it doesn't matter - problem solved! :)

Hopalong
Hopalong in reply to Lynora

Hi Lynora. Thanks for your reply.

Yes they did, but my 'new', expanded size and spinal problems, along with a hip replacement last year, makes me unable to effectively reach my lower legs! My partner came to the clinic with me, and started off full of good intentions to do the massage - it lasted 4 days, and has only been once since - so it doesn't get done? He does, however, still cut my toenails when nagged! I am unable to walk very far, unaided, although I can still (and thoroughly love to) drive!

I think you may be right about getting back to my nurse....?

Hi everyone

I realise I might be on the naughty step for querying received wisdom.

All the bad effects of the elastic constrictors can't be put down to wrong size or try' the longer ones.'

Ours have always been professionally and carefully prescribed and for some people longer stockings might be impossible to get on or push the LD even

further up the body. Some people need to question established wisdom and look for other ways of controlling and improving leg LD. For us it has been - bin the socks, put legs up in a recliner ( we bought a Sherborne) and use a compression machine.

For Milly at 99 the condition is improving and she can now walk without the ten ton thighs in her way. We have invested but it's cheaper for NHS than the stockings for all our lives.

Let's think more and accept less.

X ofcourse

Hopalong
Hopalong in reply to ofcourse

Would you perchance work for a European company which begins with an S? ;)

Unfortunately, not everyone can afford to purchase expensive recliners or compression machines, and can only rely on what the depleted NHS can offer...? Is there any hope for us? :(

X

ofcourse
ofcourse in reply to Hopalong

Hi

(I'm 70 and self employed -don't work for anyone - have inherited life time LD)

I agree with you completely that not all can afford our solution. I think the NHS needs to re think the treatment. Made to measure stockings cost it £200 to £800 a year for our life time 50 years - 40 to 50,000 pounds.

My suggestion £ 3-4000

over a lifetime and if compression machinery available and shared at health

centres much less than that.

X

Ofcourse

sammyvan
sammyvan in reply to ofcourse

I would be very interested in hearing more about this machine? I have compression garments from the hip down - lower leg wraps, thigh and knee wraps and a compression bandage for my feet. Been wearing them for a year now, and while my lower legs seem to be staying the same size, my knees [ just above the knee actually ] and upper legs are getting larger and also seem to be getting ''compressed''? The inner part of my knee feels solid, as if the wraps are squeezing the lymph into a hard mass? I have stopped wearing the upper leg garments, and the solid feeling is lessening now. Through the hot weather I left everything off, as i was getting blister like bumps on the skin - and my legs felt fine! I also have a recliner and when not doing the housework, try to keep legs up all the time.

I have tried to do the massage myself, but it is impossible - as I also have arthritis in almost every joint and cannot stretch and bend to get to the legs! Sadly my hubby can no longer drive, so cannot get to clinics. I would be totally lost without the wonderful help I get from my District Nurses team. Absolutely no Lymphoedema treatment available here, so the nurses and I are learning together! Thinking of moving back to Wiltshire, where they DO have treatment available.

I use compression garments with toe caps all day, night time wraps and use a Pulse press 12 pro compression machine once or twice a day. I also have MLD massages every couple of weeks. Swimming helps to move the lymphatics too which I do as often as I can, most pools have lift systems to help people less able get in and out of the pool.

It does cost a fortune to treat Lymphodema but for me that cost enables me to continue to work and continue my life. I think that companies are making huge amounts of money out of a condition that we have through no fault of our own which makes me really angry. NHS are useless they do not support us.

I've been reading through the posts and replies today and a common theme seems to be restricted movement due to arthritis et al. I have primary lymphedema with a chronic back problem compounded by arthritis and more frustratingly gout. My point is when I first attended the clinic and was told about the condition I was advised to self massage which I explained I could not do I was advised to use a soft back brush! It is gentle, and you know that feeling when you want to scratch life out of yourself then my soft back brush works wonders. However, as was stressed to me do not use if you have broken skin. Hope this helps some of you.

Wow! That sounds really useful?I have Spina Bifida (mildest form, which gives me a curvature and slightly dodgy lower spinal arrangement), Arthritis, chronic, permanent Sciatica following surgery for a slipped disc, one new hip and the other awaiting replacement. Over the last 2 years my weight has increased by almost 75% through restricted movement, and now I have LD. I can't do my massage either, so I'd love to see this demonstrated. Do you know of any links which show it please? xx

Trn20
Trn20 in reply to Hopalong

Look up on youtube "dry body brushing". You need a very soft Bristol brush to do this as you are not defoliating, simply stroking the skin. It's a lovely sensation. Also check out the videos for deep diaphragm breathing for lymphoedema. This is a simple, breathing exercise to do while lying down which also helps move along and drain the lymph system. Hope this helps.

Hopalong
Hopalong in reply to Trn20

Thankyou Trn20. I found some footage on YouTube, and actually bought a brush off Amazon, which I tried yesterday? It felt lovely, though I find it almost impossible to reach the back of my legs although I have a long-handled brush, because I can't bend? I haven't gone into the breathing exercises, as I find it difficult to make any connection between breathing and LD? I'm more likely to fall asleep while I'm at it...? 😉

Does it work for you? xx

Trn20
Trn20 in reply to Hopalong

The connection to breathing and ls is that unlike the blood circulation system lymph system doesn't have a pump to move it around. Therefore the deep breathing techniques help create a pumping action. The central 'drain' of the lymph system is your solar plexus as this is nearest your cleansing organs (liver, spleen, kidneys). Therefore learning to breath in a way that moves the diaphragm helps drain this area. Some breathing techniques also add some mild pressing actions with fingertips to areas such as collarbone, below the ribs and along pelvic. Again YouTube will help. And yes this does help me. Especially when I have those days where my legs are continuously tingling.

Hi all

The machine we use which is full body From legs to armpits is a lympha press.

There are others, but at the time we tried them Others were horrible to deal with - instructions not adequate and made legs worse. Compression UK were lovely and even 4 years later always answer queries and are friendly and caring.

As my mother and I both have primary LD we use the lymphapants Optima.

There is a resistance to these in the UK but in USA they are available on health insurance.

LD sufferers are totally disempowered in the UK by therapists and experts either by accident or design.

Only these compression machines can put the power back in our hands. It would be cheaper for the NHS to make them available than life long elastic and a progressively worsening condition.

I still use elastic - but less strong and less frequent. If I used the machine daily I might be able to stop them - but at the moment the combination suits me fine.

X

I realise not all can afford it - but if there's any way to save the money up and you're very uncomfortable it's worth saving for - or even a try at 'go fund me'

Hi Hopealong

Youre right about how many of us there are that have so many struggles with this horrendous disease.

Based on your description of bulging over the top of your knee highs, I think it's likely the lymphatics in your upper leg are also compromised, it's not only limited to your lower leg/ankles. I have primary LE in both feet and full legs. I was first put in knee highs after LE diagnosis. I had the same thing happening as you - lots of oedema building up above the top of the knee highs. Through further specialist LE scans it became obvious that my lymph vessels in my upper leg were absent just as in my lower leg, and my groin nodes don't work hence causing a blockage. However, as my upper leg did not have the huge swelling yet, the specialist nurse had put me in only knee garments. Over the next year my upper legs startled to swell, too, and I had cellulitis twice in my whole upper left leg.

I've been in full leg, flat-knit class 2 garments for 1.5 years (Jobst Elvarex Plus toe caps and thigh length) which is doing a MUCH better job than the knee garments did! I suggest you talk with your LE clinic about full leg/thigh garments. If you are in circular-knit garments I suggest you move to flat-knit which is the gold standard for lower extremity LE.

Take care, Cat x

Hopalong
Hopalong in reply to CCT67

Hello Cat. Thankyou for your reply. I don't know anything about the different types of stockings at all! In fact, I've never been given any tests at all for LD! It's just that I've had swollen ankles for years, and doctors have always prescribed water tablets? More recently however, I was put on a 'stronger' type of water tablet (can't remember the name) which the doc said is usually only prescribed for people in hospital, and could only be used short-term. They didn't work! The next time I saw him about my ankles, he said "You have Lymphoedema! There's no cure for it! I'll put in a prescription for compression stockings, and arrange for you to see a Lymphoedema Nurse". That was my first introduction to LD!.

I'd never even heard of LD, and the way he said it - almost like a Eureka-moment - I believed it was terminal, and left the surgery in shock! Sometimes it's good to have internet......? But I've never had any scans, nor other tests that others have mentioned on here! Wearing the socks so far, I've noticed that I have to go to the loo at least 3-5 times a night - far more than water tablets ever did - so I'm permanently shattered!

Is there any good news about this awful thing? :(

Take care. x

Lynora
Lynora in reply to Hopalong

Hopalong - you need to be referred to a local Lymphoedema service, where you will be fully assessed and provided with compression appropriate to you. Water tablets (diuretics) are not recommended, unless there is a coexisting heart condition. Are you wearing the socks at night? This isn't necessary.

Hopalong
Hopalong in reply to Lynora

Hi Lynora. Yes, I was referred to the nearest LD Clinic, where I was measured before the 'script went from my doctor. But the nurse didn't give me any choices of what I had, and I didn't know any different to ask? She didn't even look at my upper legs! Sorry, I didn't mention that.

It was when the last, strong diuretics didn't work, that my doctor decided I had LD. The diuretics were stopped immediately! My socks have to be worn for at least 8 hours a day, but not at night (thank goodness!).

I'm still at the stage of 'maybe it'll get better...?' - denial - although I should know better, as I used to be a Counsellor! :O

CCT67
CCT67 in reply to Hopalong

Hi

LE is definitely not terminal! I'm sorry your GP delievered the news in an uncaring manner. Most GPs know very little about LE and the lymphatic system. You should have been made aware that you are at higher risk of developing Cellulitis (bacterial skin infection) which can be lethal in extreme cases. I've had two episodes in the past year - many of us end up in hospital for intravenous antibiotics therefore meticulous skin care is necessary - no cuts to the skin where the bacteria can enter. I think you would benefit from support and advice from your local LE clinic your GP can refer you; there are also LE therapists trained in MLD at clinics and privately; the website MLDUK is a resource for properly qualified therapists to find one near you.

Your GP is well meaning to give you diuretics however they are NOT the right treatment for LE and can do damage. Unless you have a heart condition for which water tablets/diuretics are needed, it's advisable to reduce the tablets to stopping altogether. LE is a disease resulting from impaired lymphatics, which has significant knock on effects on your working lymphatics and skin. Oedema from LE is not bog standard water retention

I'd be lying if I said there is good news about having this disease, however with compliance to the treatment protocol the symptoms can be better managed and the disease progression slowed down. Wearing compression garments is essential. The LE clinic should be able to advise on other management tools, and the Lymphoedema Support Network website has lots of information that would be helpful to read - you can call them too.

In addition to this site, there are a number of fab on- line patient support groups mainly on Face Book (UK groups and international ones). Put Lymphoedema and Lymphedema (without 'o' ) in the search bar.

Take care xx

Bev-1966
Bev-1966 in reply to CCT67

Hi cct67, if you think Lymphodema isn't terminal let me no how to get rid of it.

CCT67
CCT67 in reply to Bev-1966

Hi

LE is not terminal in that it will not kill you. It's a disease that has to be managed and treated to prevent swift progression. It's a staged disease but stage 4 while extremely severe symptoms and immobility, it won't cause death. Currently there is no cure However there are clinical trials currently being implemented to establish weather the drug being tested can reverse LE progression. Until a cure is available we have to live with it and manage as best as possible. There are lots of tools we use to treat LE: compression therapy, MLD, dry brushing, exercises for LE, kinesio tape, SLD i.e. (self -MLD), abdominal lymphatic breathing, Complex Decongestive Therapy/CDT including mulitilayer bandaging, deep oscillation therapy, and other strategies to try. Everyone finds what works well for their LE limbs

My mobility is maintained by using all the above tools and strategies. Everyday 365 days per year, I spend 2.5 hours managing my LE legs which is a lot of time but it keeps me mobile and in full-time work.

Having LE is a nightmare on some days but I draw on emotional support from friends made in support groups and family, and LE&RN/ Lymphatic Education & Support Network (do lots of research finding and raising public awareness worldwide; their symposium library on website is fantastic. Cx

Hopalong
Hopalong in reply to CCT67

Thankyou CC. You seem to know an awful lot about this thing - as do many others here? Can it be presumed that I'll learn as I go along...?

2 and a half years ago, I had a Pilonidal Sinus, right at the bottom of my spine, where the 'dent' of my Spina Bifida Oculta is! I couldn't see it (it's difficult to see between the cheeks of your bottom? 🙃), and thought it was a sweat rash? It was the cause of my hip replacement being delayed for a year whilst I had surgery for the Sinus, which then took over 6 months to heal!! At the time, my LD was undiagnosed, (could it be presumed that it was why it wouldn't heal?), until eventually, daily compression dressings were used for over a month! The skin of the site remains paper-thin to this day, and I now have another flare-up, for which (on Tuesday this week) I've been given Metronidazole?

Bev-1966
Bev-1966 in reply to Hopalong

Hi, I had a pilonidal sinus removed from the base of my spine 20 odd year ago and had 12 stitches but healed ok.

Hopalong
Hopalong in reply to Bev-1966

I also have Spina Bifida Oculta (the mildest SB), and the Sinus was/is only about 1/4" away from my 'dent'? The wound was 3cm x 2cm, but was 4cm deep! I've had the leg-swelling for years, but have only recently been diagnosed with LD (no tests done, just the doctor's 'decision'!). Even the District Nurses, who came daily to do the dressings, couldn't understand why it wouldn't heal as swabs showed no infection! 🤔

CCT67
CCT67 in reply to Hopalong

Yes, Hopealong, you will learn as you go along, from others as well as your own experience and trial and error e.g. Compression garments. It took several months of the LE nurse trying a number of different garments before found the best garment system for me. I also wrap, often at night. Wraps and garments are very different, and not everyone with LE needscwraos. One of my legs has more severe LE than the other - I wrap my severe leg.

As far as the infection you described not clearing, it's very possible that the slow healing of infection in the skin was due to LE. It's a disease in the skin which compromises immunity and our body's ability to fight simple viruses like a cold to more serious viruses like cancer.

I'm sorry, I'm not familiar with the drug you named at the end of your post so I can't comment on it. Does it seem to be helping?

Hopalong
Hopalong in reply to CCT67

Hi CC. I really must try to find out more about this, to find out what's best for me i.e. wraps v. stockings, do I need wraps,...? What you say makes a lot of sense, and also explains a lot of other medical 'flare-ups' which may well be connected throughout my life? I haven't had anything explained to me, but I'm learning fast! Thinking about it, I may well have had this from birth?!

Yes, the Metronidazole does seem to be doing something - the soreness seems to be going away? It's (apparently) an antimicrobial, which is used for bacterial and protozoal infections at blood-level? xx

CCT67
CCT67 in reply to Hopalong

Sounds like that's the right medicine if it's helping. Cellulitis is a bacterial infection so any antibiotic and anti microbial will help protect against it. Some of us take prophylacticantibiotics daily - this would need to be prescribed not something to do unless medically advised.

As far as wraps go they are generally for night time however all of this should be discussed with your Lymphoedema clinic nurse. Wraps are only available on prescription.Flat knit garments require a trained fitter to measure your legs more specifically than over the counter circular garments. The LE clinic nurse should be trained unless they do not deal with very many lower extremity LE patients. Some UK clinics focus more on secondary LE due to breast cancer treatment and are not as knowledgable about lower extremity and trunkal LE.

I advise you return to your local clinic to discuss. If they don't seem to have the knowledge or experience you need then ask (demand if necessary ) for a referral to the St. George's Hospital LE Clinic (London). That's where the UK specialist team is (Professor Mortimer and Dr Kristiana Gordon, Lymphovascular specialists) They take referrals for anyone in England, but the referrer needs to be a LE Clinic specialist nurse or a Consultant. They don't usually take GP referrals (unless the patient lives in Wandsworth/ London).

You may very well have been born with LE but not had it correctly diagnosed - this is very common.

In the first instance book an appointmen with your clinic x

Hopalong
Hopalong in reply to CCT67

Thanks again CC. I do have a trained, LD Nurse at my LD Clinic, but all she's done is measure me for the Sigvaris stockings, and show me how to fit them once I got them? She did ask if anyone else in the family had LD, but as I'm 63, the youngest of 5 children, never knew my Grandparents as they had died before I came along,... OF COURSE my Mum had swollen ankles, but no one knew of LD then!? Oh, and I live in Wales, so not sure if we have different procedures here?

As you said, I need to see my nurse again, now I know what questions to ask....? xx

Hi Hopalong,

I have had lower leg LD for about 15 years, since the age of 17, mainly in my left leg but in my right also with less severity. For years I have worn knee high compression socks but over the past 3 - 4 years increasingly I was finding that my left knee was getting very swollen (where the sock ends) by the end of the day. However the thought of being re-measured for thigh-highs was too horrible to contemplate as I felt it signalled...the beginning of the end somehow? Like I'd be giving in and accepting that this condition is only going to get worse and worse. Eventually I bit the bullet (I got so fed up of having one massive knee!) and 2 months ago succumbed to the thigh-highs for my left leg. Well....what a revelation!!!! Best thing I could have done. Now at the end of the day I have two legs which are (almost) the same size as each other and 2 matching knees. They are a lot more difficult to get on - the first time I tried I ended up hurling the damn thing across the room - however I tried again another day and have mastered the technique now. If swelling round the knee is getting to be a problem for you I really would recommend getting the full length compression garments.

Hope this helps. xxx

Hopalong
Hopalong in reply to Morgan0103

I really should contact my LD nurse...? Where has this infirmity been hiding all these years - or has it always been around but no one has mentioned it? 🤔

Bev-1966
Bev-1966 in reply to Morgan0103

Hi morgan0103, try using marigolds to put ya stockings on if you are having probs as you can put ya hands round ya legs and push them up ya legs with the gloves on x

Give it a go it works.

CCT67
CCT67 in reply to Bev-1966

It's easiest to put garments on by starting with them inside out. It's very straight forward after seeing a diagram or someone put them on starting with inside out approach. It also ensures they don't get pulled or stretched. I may do a video on utube so that people can see a demonstration.

Marigolds and hygiene gloves (like medics war) are good for putting circular-knit garments on, however flat-knit garments are a different kettle of fish: it's easiest to put on with a glove designed for flat-knit that can be bought from Juzo and other garment manufacturers x

My Lympthoedema Nurses say gardening gloves.

Should be same clinic as Hopalong 's. However the service received seems different from the service /advice I received. Will chat via pm. x🐥

Hi Hopealong, The LE nurse asked you about others in your family that might had had LE or the same symptoms as you because Primary LE is the result of genetic mutation and often the disease does exist in generations of the wider family. However that is not always the case!

I do think think you would benefit from thigh length garments in light of oedema building above the top of the knee as you described in your much earlier post. And you may well benefit from flat-knit - I would press for them if I were you in order to try them and see how your legs do, LIke I said earlier, the flat-knit garments (which are thicker and firmer than circular knit) are gold standard for lower extremity LE. The specialist team at St Georges Hospital LE Clinic in London see a lot of patients with lower extremity LE who have been improperly prescribed circular-knit by GPs and LE specialist nurses. Patients with arm LE do fine with circular knit, but legs are a different kettle of fish.

If the nurse hasn't already talked about LE skin care with you then ask her to. At the very least, ask her for the leaflet produced by the LSN/Lymphoedema Support Network on skin care. I think it's on their website, too. In light of the skin infections you are prone to it's important to look after your skin xx

Bev-1966
Bev-1966 in reply to CCT67

Wats the difference between flat knit and circular knit?

CCT67
CCT67 in reply to Bev-1966

The properties of each type of garment differ, and their aim is different. Yes, they both compress the skin, however the have distinct differences.

Circular-knit is a fabric which is thin and stretchy. It has a weave/loop pattern that is different from flat-knit. Circular-knit garments were designed for use with Venus issues and are used after vein related surgeries etc

Flat-knit garments were designed for Lymphoedema limbs, specifically legs. They are measured/made bespoke to fit the individual limb.The fabric is thicker and more stiff than circular-knit, it has a different weave.

When wearing/walking in flat-knit garments the skin presses against the firm fabric which in turn pushes lymphatic fluid (called Lymph) upward toward the trunk which is where lymph drains into the thoracic duct (through the subclavian vein at the clavicle, base of our neck).

Due to the softer stretchy fabric of circular-knit, it's not possible for it to push Lymph upwards Most of the companies that make circular also make flat-knit. It's important to be measured by a nurse/therapist trained to fit flat-knit garments. Most LE clinic nurses have this training and many qualified MLD therapists do too.

I was incorrectly put into circular-knit by the Vascular Surgeon who first diagnosed my LE (after a Lymphoscintigraphy scan). I wore them for 5 months and was told by the LE specialist team at St George's Hospital in London that the well meaning Vascular Consultant had been very mistaken to prescribe circular-knit.

The flat-knit garments immediately improved my legs - less pain and less swelling during the day, as they pushed the lymph upwards like designed to do. I also wear flat-knit toe caps (likes gloves for toes) because I have loads of Dermal Backflow (i.e. huge amount of oedema) in my feet/toes.

Hope that helps x

Bev-1966
Bev-1966 in reply to CCT67

Hi cct67, yes that certainly does help now I no the difference. Thanks

Good question from Bev-1966. What is the difference please? x

CCT67
CCT67 in reply to Hopalong

Hi I gave a description of the difference in garments in my above reply to Bev 1966. Hopefully it makes sense and is helpful x

Hopalong
Hopalong in reply to CCT67

Sorry CC. I must have put my question after you put your reply?

Yes, it is very helpful. I think mine are the Sigvaris flat-knit? I had to be measured for them, and they are VERY thick? 😝 Do you think they could do some in 10 denier, camel-toe for me? 😂😂 xx

CCT67
CCT67 in reply to Hopalong

It's would be so very nice if we could get the same benefits from a thinner, less combersome and less ugly compression garment! Flat knit has few options..flat knit..or flat knit..! In saying that, most garment companies make a 'soft' version but the thickness is the same eg Jobst Elvarex Plus Soft. We just need to cling to the possibility that the current drug trials in the US prove the drug being trialled can reverse the effects of LE in the skin. Fingers crossed!!! 😊 Xx

Hopalong
Hopalong in reply to CCT67

Tightly crossed! 🤞 😊

P.S. You found the Emoticoms? 👏

X🐥

It took a while but I read through all these comments and even after attending the Lymphodema clinic for 6 years I have learned a lot that I wasn't aware of. I have worn flat-knit knee-highs since the beginning (changing to open toes after my second prescription). My knees and thighs have got steadily bigger and now I am have extreme knee pain most of the time. I have an appointment with an MSK clinic in January and when I was forced to go to a different clinic this summer the nurse suggested I try full-length stockings and so I am getting used to them now. It is very difficult to put them on without causing severe pain in my knee but I will persevere. I am so glad that my first Lympho nurse introduced me to LSN, it has been a Godsend in making practical solutions.

Hopalong
Hopalong in reply to Bigangel

Hi Bigangel.

I think we're all learning as we go along, and sharing information here on LSN often helps us to cut out months - if not longer! - of trial and error?

Have they told you what's causing your knee-pain, and can anything be done to help you - maybe a different way of putting the stockings on? Here are some ideas that I found. If there's anything which could help, you can discuss it with your nurse and see if it's available through her...?

I hope you can get it sorted out, and the stockings eventually help stop your pain? x

I had a lymphovenous anastomosis last month, and I am nearly one month post-op. I am still using the pump, and my custom-fitted host on the left leg. What I have learned is that 2 of my channels were 100% blocked, and the surgery reopened them. While I thought that the LE was from former fractures or injuries to the leg, I have learned that it evolved as a result of surgery above the groin many years ago. I had previously had an appendectomy and other abdominal procedures. I am hopeful that this will minimize my discomfort. While I know that it cannot be cured, I do know that with the channels opened, and connected to the venous system, I stand a good chance.

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