March 27th marked the end of my month-long wrapping treatment, and I’m SO happy! I wasn’t sure if it would be completed on time—it was all contingent on whether or not my new garments would arrive that final Friday, and the treatment itself had some moments where I felt a little discouraged—but it all worked out in the end. The garments came in and the wrappings came off, right on schedule!
I’ve done wrapping treatments a couple times before but it’s been a loo-o-ong time since the last one (3 years?)… needless to say, this past month was a long-overdue refresher course in lymphedema care. Since there is no “cure-all” for lymphedema, knowledge truly is power; a lot of our health and well-being rests in our own hands through consistent and proactive self-care. The therapists and I went over a ton of important stuff about skin care, wrapping techniques, manual lymphatic drainage, and breathing exercises, which was pretty empowering from a patient standpoint. I’ve got all the tools to manage my lymphedema, and now it’s up to me to use them.
The treatment did have some ups and downs for me, mostly due to my own unrealistic expectations at the start. I went into it thinking my leg would magically shrink and look “normal,” but that’s not what happened; the progress was not linear. There were days where the measurements were unchanged or had even increased (!) since the previous appointment, which made me feel frustrated: I wanted the numbers to go down, my swelling to shrink! Ugh—why wasn’t it doing what it was supposed to!?
On one such day, one of my LE therapists reminded me that it’s not necessarily the size of the swelling that denotes health, but rather how the tissue feels. Like, sure, my swelling may have shrunk, but is the tissue still hard and fibrotic? Or does it feel softer and “doughy”? Having it explained in that way really put things into perspective for me, and I stopped placing so much emphasis on the measurements themselves and instead focused on the way my leg physically felt. It allowed me to approach my treatment from a much different mindset, one of kindness and health rather than self-criticism and aesthetic motivations.
Which reminds me—I need to take a second to say that my lymphedema therapists are incredible. I looked forward to every appointment because working with them was like having a hang out session with some friends, if those friends are super knowledgeable about lymphatic care (the best kind of friends!). They are so dedicated to what they do… I could not have asked for a better or more supportive team. When my measurements were plateauing or my fibrosis wasn’t seeming to respond to the current treatment, they were on it, figuring out what we could do differently. Whether it was deeper, more concentrated MLD massages or experimenting with denser foam pieces in my wrapping, they did it. And it helped! Working together through trial and error, we were able to figure out what worked best for me and my leg and ensure a successful month of treatment. I’m so, so grateful to them.
At around the halfway point of my treatment, we decided to try a compression pump. Now, I’ve heard mixed things about them in the past, so I was a little wary about trying it. I voiced these concerns to my LE therapists and they assuaged any doubts: compression pumps have come a long way, and can be beneficial for many cases of lymphedema. Where they can be harmful, they said, is when you use a pump that has only four chambers; the more effective pumps have eight or more. This ensures the fluid is properly pumped using sequential, gradient pressure. When I posted on the Lymphie Life Facebook page asking what you all thought about pumping, the response was positive: most of you love your pumps! So… I decided to give it a try. (Note: Before using or obtaining a compression pump, be sure to talk to your lymphedema therapist or doctor about it first!)
I gotta say: I loved it. I did the recommended hour and the undulating, wavelike motion was so relaxing that I actually fell asleep! When we compared the measurements taken pre- and post-pump, they were slightly improved after just the one session. My leg felt lighter, and the tissue a little softer… I could see how using a pump along with daily MLD and compression garments could help maintain my swelling.
I started coming in an hour early to my appointments so I could get a pumping session in, and each time I felt like it was really helping. I spoke with my therapists about getting a pump of my own, and they arranged for a compression therapy specialist from a medical supply company to come in and talk to me about my options. (We settled on a CircuFlow 5208 from Devon Medical Products.) In a few weeks, once all the logistics and paperwork are taken care of with the insurance company, the specialist will come to my house to set up the pump and give me an in-depth demonstration on how to use it. The pump treatments will last an hour a day—more if I’ve had a particularly “heavy” swelling day. It’s something I’ll need to work into my daily routine for sure, but I’m looking forward to it because it feels so good and it also forces me to sit still for an hour a day. Some of you mentioned how it’s almost meditative, and I found that to be true, too!
In the weeks since The Unwrappening, I’ve been getting used to my new garments—or rather, getting used to wearing garments at all. I’ve mentioned before how I haven’t been wearing any for a little over a year—the ones I had were worn out, and there were no lymphedema centers where I was living at the time to get fitted for a custom new one—so it’s been an adjustment wearing them again. I forgot how it can bunch up behind my knee, for example, or how it can get a little tight around my toes. But I also forgot how good it feels to have that extra support, or how much relief it gives me to not have such heaviness in my leg anymore.
So, my month of treatment has come to a close, and I’m really happy with how it went. There were some moments where I was struggling, but there were a lot of high points, too, and overall I feel empowered and confident moving forward from this. You’ll all be pleased to know that (so far!) I’ve been consistent in wearing my garments daily despite my initial feelings of discomfort and self-consciousness, because I’m realizing that a little discomfort, a little self-consciousness, is worth it when it means I am helping to support my body and my health.
The last time I wrapped, I picked up a thing at Walgreens for showering. I forget what it is called, but it’s a heavy rubbery plastic “bag,” roughly in the shape of a leg (but much larger), capped off with a rigid plastic ring and a flexible rubber seal. It slips over the wrapped leg and seals, watertight, to the bare thigh above. I guess these things are meant for people with casts, but it works great for wrapping too!
I can’t go a day without showering, or I end up smelling like a combination of a dumpster and a locker room. My very first morning after wrapping was a terrible experience, having covered with a trash bag and attempting to deal that with duct tape. I ended up soaking my wrap and losing a significant amount of leg hair. I thought I smelled bad without a shower, but the wet wrap… That afternoon, the therapist decided it was appropriate to get me a second set of wrapping material and ensure I knew how to wrap myself. I was also told about the thing at Walgreens. I highly suggest you try one next time. Quick, convenient, and effective.
By the way, I changed up my compression garments this last time. Went from a Jobst Elvarest (sp?) to a Mediven. The material feels a bit thicker, and the design of the toe cap is significantly better. I’m pretty hard on my socks, and can’t go more than 6 months without seams ripping out. I’m hoping this new sock lasts longer! Unfortunately, my “good” leg had started showing more signs of swelling, so I’ve started wearing a custom sock on that leg as well. No toe cap yet, but I fear that will be needed soon. Father time shows no mercy!
That sounds so much better than the garbage-bag-and-duct-tape technique! Next time I do a wrapping treatment, I’ll have to pick up one of those. I have a Mediven, too, and really like it. And, like you, I also wear a custom sock on my “good” leg. It’s showing some mild signs of LE, so my LE therapist thought it’d be a good preventative measure if I started wearing a garment. So it goes…! :)
I think this is the one I got: http://www.walgreens.com/store/c/sealtight-original-cast/bandage-protector-adult-long-leg/ID=prod3400232-product
Hey that looks good!
I must say our problem areas look about the same, funny, behind and above ankle looks very hard to resolve. But anyway if i would not know i would not see it!
Can i ask you what brand is your night garment? Do you like it and why is it thigh high? You only have problems at the lower limb?
I am wondering to have one month of intensive treatment but i think my problem areas will not go away cus it looks like fat or different skin and not fluid. It is expensive so i have to think if it will help.. Take care! X
I try to not measure but go by look and feel… Measurements can be disappointing!!!
Looking good. I don’t live close to a therapist who can wrap, so I have yet to try but I have a how to book and am starting to look for a therapist where I have relatives to stay who will teach me. It is good that you are being proactive. Garments make the day so much easier. A trick I was told about is use compression fitness gear. The worst people think is that you are really vain about yourself or a health nut. Something I find life saving is swimming. Water makes my leg feel less swollen. Kudos to you fellow lymphie😀
Love that you are finding success! I too have lymphedema in my left foot/leg. I did wraps and wore garments for years but have found the most success with a combination of using essential oils and going completely off gluten and inflammatory foods from the nightshades plant family. I rarely have to wrap or use a garment now.
THANK you for mentioning essential oils. My husband has lymphadema in both legs. And I was a certified aromatherapist. I’ll whip up something for him. But will he use it ???
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Hi, I too have lymphoedema in my leg (left). My therapist recommended trying Mobiderm bandages (I need two for the whole leg) when I use my pump. It is working really well at breaking up the fibrotic tissue, I cant recommend it enough. I just wrap my leg with the bandage, then put the pump sleeve on and have treatment as usual. Fantasic. Link attached if your intersted. https://www.google.com/url?q=http://www.mobiderm.com.au/Mobiderm%2520Medical%2520Rehab%2520Brochure.pdf&sa=U&ei=ZJxZVa7iDuLCmAWTgYGAAw&ved=0CAsQFjAA&usg=AFQjCNFpWkhKoLgi4SttMzcJJgbWQV0irQ
Hi Jen, unfortunately the link doesn’t work any more…so can you tell me the type of Mobiderm bandage you use with the pump? There’s the link attached I was looking for one:
https://mobiderm.com.au/collections/all
thank you so much,
Aniko
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Can you please tell me what is the pink and black garments you are wearing in your photos I have to wrap my leg each night with bandages and padding these garments look like they are much easier to use Thanks
Hi, Noeline,
The pink and black garment is a night garment made by Solaris, called Tribute. There’s more information about them on their website: http://www.lohmann-rauscher.us/us/products/solaris-collection-by-lr/tributenight/lower-extremity-garments.html
Hope that helps!
Best of luck,
Alexa
Hi, I am wondering why wrapping has not been part of my treatment plan. From my initial sudden swelling of my right leg 7 years ago it took 4 years for a diagnosis of lymphedema (I had to fly to Santa Monica for a diagnosis & treatment plan). My local lymphedema clinic who had seen me when the swelling had started and had told me that it wasn’t lymphedema then had to implement the specialist’s plan. To my knowledge this was wearing a compression legging during the day and using the Lymphapress for an hour at night. After they showed me how to use the pump they waved me away and said that I was then on my own. Now two years later I can feel that my skin has changed and my leg has thickened. It seems like everyone with lymphedema wraps their leg at some point. I am trying to figure out if I should be doing this. Is there any reason not to wrap the effected limb?
Hi Kristen, My son, who has primary lymphedema in the right leg, had the same experience. The treatment recommended was a compression sock and pumping for an hour but no wrapping. He too went to Santa Monica for a diagnosis and treatment plan. Have you had any success with finding out more about wrapping?
Hi, I have not found any clear answer about the wrapping/bandaging. I have seen five different lymphedema therapists privately (as well as the therapists a few years ago at my local Lymphedema Clinic) and I have encountered inconsistencies in approaches and information between them all.
Over the last three months I have had a lymphscintigrapy, an MRI, and lymph SPY mapping at Stanford for my leg. I asked for the specialist there to refer me to a different lymphedema clinic and I am hoping that I can connect with a therapist there who can monitor my situation over the long-term.
It is really frustrating to find definitive information. For example, recently a therapist told me that Lymphapress is not ideal for primary lymphedema. I have used it for 2 years, but now my calve has hardened. She recommended Flexitouch. It is difficult to know who to trust.
But I go to my new clinic next week and I’ll let you know what I learn about bandaging.
What the MRI reveal? Let me know
Just an update for Hari, I did go to the new lymphedema clinic and the therapist there is going to try out bandaging this week. She said that it a chance that it could help soft the fibrosis that built up during the years that I was going around without a diagnosis or treatment plan. (I’m also waiting to get approval for liposuction on my calf, which will hopefully “reset” my leg to where conservative treatment is more fruitful.) One thing that I have learned from my journey through the medical system is to request tests, scans, and treatments instead of waiting for therapists or specialists to suggest them. I have made far more progress taking this approach.
Just an update. I did get SAPL a few weeks ago. The surgery took 4 liters out of my leg – which made my leg look a little smaller than the healthy one. One problem has been that my initial legging was too tight around the ankle and it inflamed one of my veins. There was definitely a lack of coordination in the pre-op and post-op process between fitter, nurse, and therapist. So, I had to go elsewhere to get refitted (for a custom made legging). And I had to go back to wearing my other legging until it arrives.
I am happy to say that I am a breast cancer survior for 20 years. Unfortunately, all of my lymph nodes (left arm) were removed, and I have had lymphadema in my arm for 20 years. My therapist just mentioned a new surgical procedure that tries to create pathways for drainage. One of her other patients is doing the surgery this month. I am waiting for a referral to the surgeon now. Has anyone ever heard of this surgery? Thank you for your posts-this seems to be a great support community.
I have been dealing with lymphadema for at least 15 years. I have worked on several occasions with a certified specialist at my local PT clinic. I wear either compression hose, Velcro wraps as well as cloth bandage wraps with short stretch (caprilan brand). I use a sequential compression device just like the hospital uses (COVIDIEN) each night during sleep. To make a long story short my Lymphadema is here to stay and all I can do is try to minimize swelling.
Hello! Hoping someone has a tip for me. Did anyone else struggle to keep the bandage up in their thigh area? Mine keep sagging down as soon as I star walking. It’s driving me insane!
I too had the problem with sagging bandage around my thigh even on days where I did not work out (and made my swim days hellish). It was such a hassle. Even when my therapist did the bandaging it was only slightly better.
I changed to using velcro wraps on my calf and on my knee over my compression thigh-high and it worked much better. Now I only use the wraps if there is any change in my measurements otherwise the garment is good enough.
Hi, I went nuts trying to keep them up. I once taped to my skin and made a horrible blister. I used very tacky tape but instead of skin just taped the bandages to each other. I was going to try using a leg warmer over them next, but my therapist stopped using the over the thigh part so it’s not an issue now.