I am 84 years old. Last November I had a sarcomatous muscle removed from my thigh, followed by 7 weeks of radiation therapy. Now I am getting lymphedema of the leg, from the thigh down. I have a referral to a lymphedema clinic, which I have not yet scheduled. I have heard that lymphedema always gets worse if not treated. I have also heard that custom made compression stockings, thigh length, can be expensive. Does anybody know about what they cost? Does untreated lymphedema inevitably get worse?
What does a custom made pressure stocking cost? Will m... - LSN
Hi Freimaurer - whereabouts in the world are you?
As your surgery/radiotherapy was comparitively recent, then it may be better to wait to see the lymphoedema clinic rather than investing in self-funded garments. Because of your history, some higher compression levels would not be appropriate, and would cause unnecessary problems.
If you know which clinic you have been referred to, call them and ask if you can have an urgent appointment.
Lymphoedema is a fluid 'beast' and can fluctuate. With careful management and self-management and compression (plus lymphatic drainage treatment - either with a therapist or self-applied) it can be kept under control.
In the meantime, keep the skin well moisturised. Elevate the legs when you are seated. Eat good nutritious food and keep hydrated.
Thanks. I live in Centralia, Washington State. The only lymphedema clinic in the area is at Olympia, WA, about 30 miles from my house. I had my surgery and radiation treatments at Madigan Army Regional Hospital, Tacoma. I am a bit confused. Did you mean I should hold off on seeing the lymphedema clinic until my condition plateaus? My radiation oncologist said my lymphedema would continue to get worse for the next year, then plateau. (I saw him today). I am tempted to use an over-the-counter thigh length pressure stocking which I can get relatively cheaply, and have heard that custom made pressure garments can run $300-1200 each, and they are not covered by Medicare. I am reluctant to get started with a lymphedema clinic because I suspect it will be a never-ending affair.
Hi freimaurer - I should have written my reply without distraction of a houseful of visitors (including 2 Canadians!).
I meant - try and get an urgent appointment with the lymphoedema clinic. It is not advisable to purchase OTC garments without guidance, especially with your original diagnosis. I have known of individuals here (UK - this site is based in London) order garments online, at considerable cost, thinking the highest compression level they buy will make their limbs smaller, only to come horribly unstuck when they find they can barely get the items over their toes.
The lymphoedema clinical staff will assess you to then advise or provide the garments appropriate for the management of your condition.
I see that CCT67 has answered your questions further down this page - with a North American perspective.
Thanks, Lynora. Actually the pressure stockings they issued me at the hospital work fine to control the swelling, but they have a bad problem. They keep sliding down my thigh. I have to pull them back up every few minutes. This is no good for normal activities. I can only wear them around the house where I can keep pulling them back up. I suppose the lymphedema clinic would order a two legged "pantyhose" style arrangement that can't slide down. But they would no doubt be expensive, and here in the US, my insurance (Medicare at my age) does not pay for pressure stockings. The thigh-length stocking they issued me is rated at 20-30 mm. That is enough to control the swelling in my case.
Try this skin glue - you put it on the skin at the point where the top of the garment reaches.
What colour are the stockings the hospital gave you? Are they open or closed at the toe?
I am also in the US. (Atlanta).Aside from the expense of stockings the clinic should be VERY Clear with you if they will want you to come to the clinic for massage therapy 2 to 3 times a week. This is common and though medicare may cover some of the cost the copays can add up over time. And physical therapy is not always a short term treatment.
I understand your reluctance about getting on the lymphedema treatment train. I am in 2 minds about it myself right now.
There is an alternative that may not be mentioned but you should ask.
If they recommend ongoing therapy ask if someone in your family (if available) can be taught by the clinic to do your therapy at home. I would bet they will hesitate saying it has to be done correctly blah-blah.
I am a retired nurse and over the years I have taught patients and family members to take over various types of care. Patients and families are not a stupid lot and often do a better job with care because they are motivated to see their loved one get the best care possible. Non-medical people have learned to do many things well-kidney dialysis, IV therapy, various types of therapy treatments, to mention a few.
We do not have to have letters after our names to learn and give effective care.
If you have someone in your family who is willing to learn this for you, please don't take no for an answer from the doctor or clinic staff-at least until after you have been given every chance to learn how to provide your care. The money adds up quickly with ongoing care in a professional setting.
There is something else we should bear in mind. Just my opinion but with our current administration we seniors only know what is covered for the current year. Our financial situation could change drastically next year.
I just wanted to give you some food for thought to help with questions the doctors may not offer answers to unless they see you as an educated consumer.
I hope this turns out to be a wonderful clinic for you. But do your research so once you begin treatment there are no surprises.
Take care. irina
One more thing. We, as Americans, know that many aroud the world believe that because we have medical insurance we are home free. That is not the case. There are many levels of insurance coverage available depending on what one can afford. And many have exorbitantly high yeariy deductibles.
We can have medicare and very good private insurance (with expensive monthly premiums.) And still find ourselves in debt, needing to file bankruptcy.
I have excellent medicare and secondary coverage. My monthlypremiums are high. And we can still find ourselves with huge difficult to pay bills for uncovered or poorly covered care.
And now our government is threatening to take away our Affordable Care Act (Obamacare.) It isn't perfect and doesn't affect people like me that have good social security incomes as a result of paying into the system for years. But it will mean MILLIONS of poor families with children who live paycheck to paycheck will have NO coverage. Not all is as it seems here.
Yes it can get seriously worse if untreated the earlier you getting treated the better and here in the UK I can get the made-to-measure stockings on prescription so they don't cross me nothing but the prescription price which is less than £10 but I don't know how much it will cost you have you got medical insurance. But if you can get it treated sooner the better believe me.. Sharon
I saw my radiation oncologist yesterday and asked him if my condition would keep getting worse. He said it will get worse even with treatment for the next one to two years as a result of the radiation treatments, then would "plateau". However, he recommends seeing a lymphedema clinic in the hope of controlling the symptoms.
Get an appointment for the clinic as soon as possible. Do you live in UK? Other countries would have started treatment by now. There are different options, so ask about MLD (manual lymphatic drainage) and mechanical compression inflatable stockings (cost £900 - £2,000). NHS only supplies compression stockings, but sometimes there are much better alternatives, if you can afford them. Good luck
I’m sorry to hear of your ordeal. The best hands to be in for advice about the most suitable garment for your leg is the Lymphoedema clinic. Lynora’s suggestion to ask for an urgent appointment is very sensible before investing in garments. The cost of garments varies due to many factors, it’s important you have expert guidance so you don’t buy ones that could cause more difficulties. Compression for LE can be more complex than one would expect! The clinic should have a Certified Lymphedema Therapist CLT who can show you how to do self lymph drainage and guide you through how best to care for your leg. You might be able to find a CLT who sees patients privately if the clinic wait is extensive, here’s a CLT finder
Some tips in the meantime - keep your leg well moisturised with unscented lotion. Dry skin makes Lymphie skin more susceptible to Cellulitis infection. Keep a topical antibacterial or tea tree oil on hand in case you scratch your leg as scratches/cracks in the skin are a route in for infection. Elevation is very important due to the effects of gravity on a lymphie limb. Avoid heat/hot water as it exacerbates swelling. Periodically throughout the day while sitting gently roll your ankle in a circle (in each direction) a few times, and point your toes back and forth pausing for 3 seconds in each position. Drink lots of pure water - our lymph system loves and needs water!
I hope you get a clinic date soon.
Thanks... I’m actually in the UK (Surrey)! I benefit from being a multi-national with UK, Canadian, and US citizenships. As I previously lived in the US for 15 years, Canada for 6 years, and I still spend a lot of time Stateside in the year, it translates into my being ‘plugged into’ what’s happening in the lymph world and advocacy efforts on both sides of the pond 😊 xx
Hi Freimaurer, im sorry to hear about your recent onset lymphedema! I am in the US, in Maine - and while I’m not a total expert, I will just let you know a few things from my experience. I had an ankle sprain four years ago that took forever to heal, and there was swelling up to the knee that didn’t get better. I wore some regular ( Amazon) knee high compression stockings, but finally someone mentioned lymphedema and I made an appointment with the lymphedema massage expert at the nearby hospital, who works as a physical therapist with specialty in MLD, the manual lymph drainage massage. She’s been great, and really knows her stuff. She measured me for The correct size and compression strength ( mine is 20-30 mg), and the pharmacy ( the kind that sells medical supplies like boots and canes etc.) ordered them. Insurance ( mine isn’t great) pays most of what it costs to buy a new pair every six months, so I only spend about $80, but it depends on whether I’ve met my deductible which of course I usually have not. But without that it was about $130. My therapist also suggested I could buy cheaper ones additionally at compressionguru.com, which I did one time because I wanted an additional color. I didn’t do the measurements perfectly myself so I had to exchange them but that was fine. If I do that again I will have my therapist measure me and bring the website info along with me. I’ve been successful keeping it all under control, and I do put up my leg and foot a lot. But I’m also on my feet a lot, because my partner and I run an inn. The best thing I’ve noticed in the summer, is swimming in the ocean - the cool water, movement, and salt do wonders for my foot and leg. Cool epsom salt baths are nice too. So maybe if the distance is too far for you, at least in a regular basis, ask whether there are any physical therapists closer to you who specialize in lymph drainage massage. Let me know if you want to talk more, I’m more than willing to help if I can!
Thanks to all the good advice. I am not sure they give urgent consultations at the only lymphedema clinic in my area. I do have a thigh length pressure stocking (20-30 mm) they issued to me at the hospital. It does keep the swelling of my thigh down, but it also slides down all the time. That won't do. With no stocking at all, the diameter of my thigh increases about one inch in the course of the day. With the pressure stocking, which I have to spend all day pulling up, the thigh stays the same size as when I first wake up in the morning, normal size, the same size as my good thigh on the other side. I feel reluctant to get involved with a lymphedema specialist who probably will want to see me several times and order me expensive stockings to try out. Medicare does not pay for the stockings, and I have seen estimates of $300-1200 each for custom made. My radiation oncologist, who I saw yesterday, said my type of edema will plateau out after one to two years. It will get worse for a year or two, treated or not, as a result of the radiation treatments I have recently finished, then no further.
As the hospital issued compression that is helping your leg you can address the slipping down problem with skin adhesive/glue - it’s designed to prevent garment slipping and it works well. It’s water soluble roll on adhesive, not like hardware shop or craft glue!
I use a skin adhesive called It Stays. There are a few types made by compression companies but essentially they are the same product and do not hurt Lymphoedema skin. It Stays is available from compression websites, I’ve previously bought it from here
As for seeking advice from the Lymphie specialist, I understand your reluctance due to limited funds, and Medicare doesn’t cover garments. Discuss this and explore options with the clinic CLT as their aim is to support you in the best way they can with the resources available. Believe or not the reason for Medicare not covering garments is due to a data input mistake - when the coding for all the things that Medicare covered was inputted into the computer system decades ago, the data input staff in error did not input the garment codes. It was a mistake that was not discovered straight away and when it was discovered it too late to add them. It requires Congress to pass a bill stipulating compression is covered by Medicare, it’s not as simple as correcting the data input error! Hard to believe but true. The bill before Congress called The Lymphedema Treatment Act/LTA would rectify this to ensure compression is covered by Medicare, as well as require all insurance companies provide a minimum standard of cover for treatment including garments. Currently there is huge variance in what US insurers cover for treatment, and many like you relying on Medicare are at a huge disadvantage. The LTA has many congressional signatories but need more to get it passed. I encourage you to ask your members of Congress to vote for the LTA if they haven’t already committed - click below for more info and details to contact your congressional reps
Wow, you are sure up on this stuff. I hope the act passes, although it is hard to predict any congressional act with the current climate in Washington. You have convinced me to see the lymphedema clinic, but I can just imagine them prescribing an expensive stocking, perhaps two legs to keep them from sliding down (like pantyhose, leotards, tights, whatever you call them in the UK), and then not being comfortable enough for me to wear, and at a whopping expense. I would much rather use the issue ones from the military hospital (I am retired military). I think I mentioned it before, but without a pressure stocking my thigh swells up by a little over an inch in circumference in the course of a day. With the stocking, the thigh stays the same size as the opposing good leg. By the way, all this is completely painless. I am so tempted to let it go, frankly, but people warn me that it could get much worse over time. "Could", that is. Not for sure. My radiologist told me yesterday that it will get worse over the next one to two years and then plateau out - in other words, not get any worse after that. It is not like if I let it go, the leg would eventually look like I had elephantiasis. Thanks again, CCT67.
Thanks, Deadfoot. I was in the Air Force as a public health officer and spent 3 years at RAF Lakenheath (1982-1985). I interacted with the National Health Service. I have a lot of respect for them. I suspect custom made pressure garments in the US are more than $300. At least that is what I have heard. Are the ones you get custom made? I am really not sure how important it is to get custom made ones, frankly. Theoretically they would be superior because they would be designed to put just the right pressure all the way up the leg, while an off-the-shelf stocking would apply more pressure in some areas than others, depending on how much my leg dimensions vary from the average. But I notice the pair I have issued to me work fine, except they keep sliding down my leg. People have recommended a water soluble glue. I have also been thinking of a design for a sort of garter arrangement I could make.
The first lot I was given were supposedly custom made but they are not suitable for me as they gave me extra ridges that were pink and sore, they also cut off my circulation causing a serious loss of sensation and pins and needles in both my legs and feet. They were also toeless so I even had an extra ridge on my feet that was not there before. Last week I was measured again and I am hoping that this time they have it right. Compression garments can move and you are meant to keep pulling them up to get the creases out. Thing is if they keep doing this I would question whether you have been prescribed the right size and strength. To be honest I think the garter arrangement might be a bad idea for your circulation. You don't want anything to act as a tourniquet.
Well, my arrangement should not act as a tourniquet at all. The best would be to make it and see if it tightens the top band any. But you might have a point about the size not being ideal. I really suspect that the problem is that my thigh is bigger near the top, thus sort of acting as if it were cone shaped, and the stocking naturally slides down. I wonder how a different size would overcome that. I really think the only permanent solution would be two-legged leotards, not at all my favorite thing to think about. It sounds like your own prescription was not the best. I hope the new one works out better for you.
I got two little bottles of JOBST It Stays, roll on glue. I was wondering how to remove the stocking at the end of the day. In the shower? Also, do I pull the stocking all the way up to my groin area before applying the glue? The natural tension of the stocking pulls it back down. Or do I leave it at 2/3 up the thigh, still not under much up-down tension?
Apply it to the skin where the stocking is designed to finish - pulling the stocking beyond its reach could cause the skin to tear. After a days wear, you should be able to gently peel it away from the skin. None of my clients have needed to soak the glue off - but if you were going to wash the stockings anyway, this could work.