LE drainage and pumps
After multiple surgeries on both breasts, and node removal on my right I have become a victim of the wonderful LE. I am having difficulties controling the swelling since Easter. I had a lot of people at our home, I immediately got sick after that which lasted till just a few days ago (cold virus) and then a birthday party for daughter and prom dress shopping this weekend and I am a mess. My arm is looking more like stage 2 and I am experiencing swollen nodes under the arm and also on the same side in the groin area. I also have some trunk swelling. I am brand new to this and do wear a lymphediva sleeve during the day and wrap at night. The LE specialist that I saw has recommended drainage therapy daily for two weeks, but my work schedule is not allowing it. I am afraid my immune is shot right now because I am constantly exhausted and I can't seem to get control of the swelling. I am reading the books that were rec.d on here and also some extras I found on Amazon. I am interested if anyone has had any luck with the various pumps or manual drainage. I have surgery on May 22 and I am pretty sure I can do the drainage at that time, but I am afraid I may have too much damage by then....
Comments
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I am not a pump girl but I understand you have to do self Mld before you use the pump. You sound like you do need the daily drainage routine to get the arm down and then fitted for a glove/gauntlet and wear with your sleeve. This is necessary to gain control. It is best to do the drainage before surgery.Great that you are wrapping nightly. Kudos
Your body sounds taxed and that is why you may have swollen groin nodes. Extra LE fluid can make you sluggish too. It is unusual to have LE in your leg unless you have had nodes removed from there. You say you have swollen nodes in arm too. Tell your docs about your swollen nodes to rule out other sickness. They must have left some in your arm depending on the level of nodes they took out seeing that you say you have swollen nodes there also. Could you give us more infor so we can help you?
Gets lots of rest and try not to overdo it with fam responsibilitys which is hard. You need to care for yourself to get ready for surgery. Rest arm elevated above heart on pillows or back of couch but don't tire it out. No heavy lifting on the LE side at all including grocery bags. Take deep belly frequently to stimulate your lymph system. Put arm straigt up in the arm and pump fist slowly for 25 times every so often. Your MLD girl should be telling you this. If you don't feel she is qualified then go to the Stepup site to look up a thearpist in your area that is qualified. She needs to teach you self MLD too. I am surprized she recommended a sleeve but not a glovee or guantlet with the swelling you are describing. Without that, the fluid will run to your hand eventually and that is a nasty beast to control. This makes me wonder if she is qualified.
Wear a mens underamour "compression only" Teeshirt to gain control of your trunk. If the seams irritate wear it inside out.
Meanwhile google stepup-speakout.org. Our girls here developed that wonderful website which has a ton of info on LE. I am sorry you have had to join our Swell gang but we have so many helpful girls here. You have come to the right place. Hugz4u and a kiss of caring
I know it is a steep learning curve but you will gain control. Stick with us. -
I don't know anything about drainage and pumps, only manual massage. But I lifted 3 bags of groceries with my "bad arm" back in January, and LE has been my permanent friend ever since. It is so hard. Hugz4U gave you good advice. I sleep with pillows to keep arm up at night. This helps me.
Yes, do make sure your LE specialist is really qualified. Mine is fabulous and a constant source of help and encouragement to me. She taught me how to use Kinesio tape which has helped me a lot.
When I am having a major flare up like now, I wrap even during the day. It seems to help me more, but everyone is different.
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I have a FlexiTouch machine and LOVE it. I've had it 3 yrs and use it daily.
It takes it an hour to run through the entire cycle. It has 3 sections to the garments it uses - one is for the upper leg and lower body, another section is the upper body and the other is the arm. When it runs it starts with the lower body/leg section to drain the nodes in that area first so that the other areas can then drain into them easier. It then moves up to the upper body area then to shoulder, upper arm, elbow, forearm, wrist, hand. It focuses for about 5 min in each of these areas then it reverses and starts at the fingers then up over and down ending on the leg, going directly from one section immediately, not working in isolated areas but continual movement for the last 30 mins of the cycle. (I've never been told by my LE guy or the manufacturer to do 'self MLD' before using the machine.)
You mention that you have a sleeve but not a glove - I've been told to always wear a glove (or gauntlet) when you wear a sleeve. The compression level can make a difference in rather they work right or not - for me heavy compression makes mine much worse but light works better. Also not all of us are built to fit the Off The Shelf sizes so some have to have custom made (like me.) At night I wear a night garment with an 'opera lenth' Isotoner glove under it.
Remember that we are each unique in how our body reacts. For me, the more activities I do, the less issues I have. Actually when I do have some issues going on I find that tatting will pull the swelliing down. The same is true with fly tying and fishing rod building (my newest passion that I was able to start/learn to do thanks to the Healing Waters program for Veterans [www.projecthealingwaters.org]). I also have less problems during the summer when I can get out and mow my yard and several others who need help. Certainly what works for me may not work for all but I do what works for me because it does work FOR ME.
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Denise and Kimber, Yes, Adjusting to LE is a bit tricky. About a month ago I told the girls here I spent about 2 hours cleaning the inside of my car. I knew this wouldn't be the best thing to do but as independent as I am, I went ahead. The next few days I thought I was OK and just a bit sore from using my arm muscles differently. Well my arm is not the same as it was before my cleaning spree. I get more achiness and I measured 6mm bigger in the forearm at my LE appointment, plus my LEist said. I am going to drain this bit of fluid from your breast. Never had that before. I am so disappointed that I couldn't even mention it on the boards until now.
So be careful with any repitious activites such as grooming a dog, getting spring gardening together, etc unless you have a arm that is in really good shape. You can still do all these things but you have to build up your arm to get use to it. Take frequent rests between chores and prop up that arm for maybe 20 mins or so then go back to activity.
Oh and don't burn yourself.That is how my whole LE started. One bad campfire burn to the whole hand and the next year a sunburned arm. WILL I EVER LEARN!
Carol here has made a really good exercise phamplet to advise on exercise and building your stamina up. I hope she chimes in. She has it posted in the kickbutt thread. She is our exercise guru.
We can live normal lives but we do have to be vigilant with our LE.
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Kicks, You posted while I was composing. You have given some good info on flexitouch. Glad you came along as I thought some girls clear the nodes before pumping. Bet your glad you don't.
Glad you pointed out about the sleeves. Wow us girls work great as a team. 2 heads are better than one for sure.
That is interesting that tatting and more strenuous activites work for you. We are all different is right. Until Kimber gets some control and masters her body she would be wise to watch it like a hawk. I could see mowing a lawn great for me if I had my arm muscles built up. It would be good because you have your arms up. I could see myself pushing with my body more than my arms right now. I really do like mowing lawns and at one time I did my neighbours just for the heck of it.
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Kimber, hello! Really sorry you've had to join our Sorority of Swell.
I know this isn't good news, but you really need to do the therapy intensive that your therapist recommended. It's not optional, especially considering how far out of control the stupid LE has gotten.
I do get it about your work schedule, but this is a serious issue that needs to be addressed right away in order to get the best and quickest results--and especially to avoid your very real risk of serious infection that goes along with untreated LE. Please do consider this, because you're well worth taking the time to get this under control, and now's the time to do it. Definitely before your surgery, because uncontrolled LE will increase your post-surgical infection risk and slow your recovery time.The lymph system is part of your immune system, and it affects your entire body, so gaining control now will definitely help normalize your strength and healing, which will enable you to deal with the stresses and job and family responsibilities. Please take care of YOU!
No pump is a substitute for therapy, but it is a substitute for self-MLD in the "maintenance stage" (once professional therapy has ended). If at a later date you choose to use a pump for part of your self-care, node clearing before use is standard, though a complete self-MLD is generally not needed. (Kicks, the "pump guys" are not authorized to offer medical advice so can only refer us to our therapists for suggestions about pump usage, but your therapist should be weighing in on node clearing before pump use. You might want to have that discussion, as it can avoid some problems over time.)
I just completed a therapy intensive for new lower leg LE, a result of the fact that the lymphatics are indeed a body-wide system, so I'm busy trying to fit leg care into my LE routine, and make sense of the new MLD directions and order. Fortunately what's good for arm/truncal LE is also good for leg LE, but there's extra MLD to be done daily, and things like gravity to contend with--ugh!
Hugz, my intense empathy for the disappointment of having to struggle with new truncal swelling and to get the stupid arm LE back into control
. You can do this! Hang tough,
Binney -
Sorry I didn't get more detailed I really hate my story and you will all cringe!
I am wearing a gauntlet as well for starters.
I have had 17 surgeries in the last two years. My left side has failed at a DIEP, a lat flap and an implant. I ave factor v Leiden, which is a clotting disorder and I end up having to be thinned and it is a fine line between bleeding out and clotting. I only had three nodes removed with a double mast. and was assured that it was ok to use the arm with nodes removed because the other side we had 15 surgeries. I had an IV AND bp cuff for 15 SURGERIES, because the dr's are idiots. I have had infections, wound vac and literal hell for 2 years, which you all know. In January I had an exchange implant and lift and the IV was in the other arm. That surgery set off the lymphedema. I live in a rural area in Northern Ca and have had a challenge finding help. I went to one "le" therapist that said wrap it, raise it, don't lift it, exercise lightly and live with it. I found a new lady who does le drainage, but my bosses dad just died and we are short handed with two others on medical leave. The only time the le can do drainage is at 8am 45 min from my work and I start work at 7 at a school.
I am so happy to find this group and will be familiarizing myself more. I appreciate your wonderful support.
A little about me- I am 42, lost my mom to bc at 51, she had it twice, my maternal Grandma is a two time survivor. I have 3 children 18 girl, 15 girl and an 8 year old boy. Been married 24 years and am a runner and photographer. I am also cancer free as of my PET I had in December
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Also wanted to add I have amazing Cadillac insurance with 100% coverage. I just asked to be assigned a case manager today, hopefully I will get assistance being pointed in the right direction for care. My reimbursement for my sleeve and gauntlet was 100% but a HUGE battle.
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Kimberly, 17 surgeries. Anyone with that many surgeries gets a round of Binney's famous virtual brownies to help you hang in there.
You indeed do have a lot on your plate with young children. I was 45 with a grade 7er. at diagnoses, also married about the same time. . A little bit like you. It's not easy with kids still maturing.
I hear you on the job with the bosses loss, etc. You really need to consider your situation here though. Your family needs you healthy as possible before surgery as you know from all the other surgery's. Regarding work, Is there anyway you can drift in late and make up the time? You might be able to work with the wraps if they are secured properly, depending on your job. My LEist wrapped me so good it never budged for 4 days. I really think by the sounds of your original post that you need a medical leave though to just get proper rest before the big day and to gain LE control.
The day of surgery take a permanent marker and write in huge letters on your affected limbs, NO BP! NO NEEDLES ON THIS ARM. Yes, the nurse came at me when I was drugged, thank goodness I was able to stop her short. Make sure your surgeon and anithesioligist knows. This is not an option. Just do it and make your life easier in the end. Demand needles in the foot if that is ok with your clotting problem. I think they can do it elsewhere,maybe neck, not sure though.
You might be able to go,into surgery wrapped. I hope our experts here can suggest if that is correct.Either way use the sharpie pen to write on the wraps or arms. as you know, those docs are sneaky with the needles and bps and may want to remove the wraps when your out cold. Dang docs anyway.
Now that you said you have had a DIEP, I am thinking maybe you had a node or two removed accidentally and it may have started a leg problem. Your LEist (therapist should know) if you have leg LE or may suggest you see doctor. Hopefully Carol our exercise Educator and a DIEP girl will see this post and advise. She has not checked in much due to vacation lately.
I hate to suggest it to you because you have gone thru so much but some girls here at BCO have deconstructed and have been happier as no more pain. But that would be a last resort thing for sure. Save the thought for another day perhaps if your future surgeries give you problems. OY!...it sure ain't easy is it?
Poor Binney and her LE in lower leg now. Does it ever quit! No wonder we haven't heard much from her lately. She is approaching hot weather too and training her new Corgi dog to smell her daughters diabetic levels. What a dear to make time for us newbies. She is super busy and valued much. Binney we think of you daily with your new ventures.
Hugz4u -
The links for information about safe exercise with LE are here:
stepup-speakout.org/Trainer%20...
stepup-speakout.org/Handout%20...
...but I think Kimber has other needs and priorities than exercise at this moment. Kimber, if you do start to think about exercising, do take a look, because there's a lot to know about getting exercise's benefits, while protecting yourself from LE risks such as if your activity is too much, too fast, and some other potential pitfalls.
As for the diep reconstruction, yes, I had that too, and I have heard anecdotally of women getting LE in the lower body after that procedure. It's certainly true that there are usually a couple of nodes removed with the flap tissue. The microsurgeons performing this procedure seem very confident that it does not present an LE issue, and that is the rationale for presuming that node harvest from the groin area does not create donor-site LE risk for node transplants. Unfortunately, there's been very litttle research on that point, and while a few surgeons have done thousands of node transfers, largely they have kept records of complications, to the extent they are following long-term, to themselves.
Some recent research found that there may be a genetic predisposition to primary lymphedema (genetic issue and/or simply born with missing parts of the lymphatic pathways) in many of those who eventually develop secondary LE (i.e. after surgery or some other trauma). So it's possible that LE is waiting in the wings, and then surgical drama wakes it up. That might be something for Kimber to think about, because all those surgeries, including the diep, are puttng a lot of stress on the body, no?
Kimber, I can only second Binney's spot-on advice about working with a good therapist to sort out what you need, and how a pump might fit into your treatment. And do check into this forum often, if only to vent over pain and frustration, because everyone here 'gets it' and it's a great place to find kindred spirits. You've already discovered stepup, speakout, so you know where to find accurate and very practical information to fill in lots of blanks.
Carol
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Kimber, I peeked at your bio - surely the library could function for a couple early morning hours without you! How did they manage throughout the other times you were absent? You will be the one writing a book for the rest of us once your recovery is a little further along. It's good to hear that your insurance is excellent.
Hugz, if you like mowing lawns so much, our neighbor's house is going to go on sale: I'll give you until next summer to move here and work up your stamina/arm strength...
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Vinrph, Ok to moving in next door to cut your lawn but there is one condition. You gotta wrap me every night!
Wouldn't you just love having your own personal LE slave. "0h LE slave. Please fetch my wraps,wash my gloves and sleeves, roll my wraps and gauze back up.Order my LE stuff online, drive me to my LE appointment. Please lift my heavy groceries!" -
Hugz, so long as you're conjuring up an LE slave, I think it should be a CLT so you can have professional MLD any day you want, at any time...no appointment (and appointment drivetime) needed!
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hugz - do you have a bandage roller? They are great and fast/easy to use. They are nice little gizmos that have been around in the 'horseworld' for decades for rolling leg wraps quickly (some show disciplines/competition levels will do a lot of leg wrapping on the horses - often different wraps at different times of the day/work so some have to do a lot of bandage rolling). They are not expensive and if you don't I'm fairly sure I have at least one brand new one/never used in one of my tack boxes if you'd like it - when the snow will lert me get to my storage tack boxes.
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I wish all I did was be a librarian at work! I work at a school for boys that are sentenced to our school(all are on probation and unable to leave until they complete the program). They are 14-18. Originally I was hired as a Libarian, but am now
A Reading Instructor
A GED Instructor
A Study Hall Instructor
I manage all CELDT for English is a second language students
Intake interviews and intake testing and placement
and I am a testing Proctor for all State tests! We are have our tri-annual accreitation between the 29-1 and once that is done I am going out! I see my Internal Med Dr. tomorrow. We are warming up here in Cali and I was a MESS yesterday afternoon. Even two weeks seems like too much!
Also, we are going to Disneyland next week, any suggestions when walking around/arm hanging down? Our daughters are performing at a band competition and I am not going to miss it for the world!
I do not have a bandage roller Kicks, but it is on my order form for my dr tomorrow! Thank you for the offer
As for the LE slave, I just want someone to clean my house like I clean it! My kids and husband are lacking in that department and I am just having to let.it.go!
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Kimber, I want one of the does-windows LE slaves, too!!!
For walking at Disneyworld, you might try hooking your thumb into a belt loop or a waistband for some of your walking time, or into a pocket of a jacket if you're wearing one.
What an incredible list of responsibilities you have! It sounds incredibly challenging, and what a wonderful service you give to community and to the students and their families. But I hope you're keeping your LE health in mind, too...taking time off when you need to.
Carol
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Kicks - saw your post about bandage rollers - those are nifty and cute! You sound like a bandage LE person as well and saw that you use different bandages, etc. I'm kind of new to LE - acted up during rads, settled down, then in January major flare up after lifting 3 grocery bags. Anyway, I like to bandage wrap as it is fluctuating a lot and I order a sleeve and doesn't work, etc. Wrapping seems best for me right now.
I was telling my LE specialist, when I use two bandages it doesn't seem to work as well as one. And when I wrap it 1 inch apart seems better than when I do it smaller? Do you find those kind of things as well? Thanks!
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kimber
Your situation at work sounds incredibly stressful!
I know this sounds crazy, but is there any way you can tale some FMLA time off and get some good tx in ?
When my husband had stage 4 colon cancer., (he's ok right now) in 2009, my head was spinning. He worked FT and never skipped a beat, but it really didnt look like he was going to make it.I hated the job I was in and I was taking care of him as much as possible after work. It was a roller coaster and merry go round with the INS CO. the surgeries, the doctors, his lack of energy and looking his mortality squarely in the eye. My job was incredibly unsupportive.
I finally went in and quit.
Yep, I did ! (NOT suggesting you do that btw)
It was the BEST move I ever made.I am sure some ppl thought I was insane.
Here was my stage 4 husband struggling to work and me ' sitting home all day doing nothing".
In reality, I had my own health issues and this time off freed me up to get all the household errands, which we used to share , done by myself at my own pace. I investigated all the med resources for him, fought the INS CO. <which was actually time consuming!> and was able to spend quality time with someone I thought I was losing.
When the battle ended ( of course the war is never over) I changed careers, which has been a blessing.
Looking back, I cannot believe I did that , but an FMLA leave pales in comparison. You might want to consider it.
Good Luck to you!
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I see my dr today and I plan on going out on medical the 2nd of May. I "HAVE" to get through our WASC accreitation process. My boss is aware, and very supportive. Thank you all as well for your support!
As for Disney, my husband thinks I need a wheelchair (eye roll) he just wants to go to the front of the line lol!
purple32 you and your husband sound like you have had MORE than your share! I am glad your husband is ok right now, hope it continues.
Its amazing how we are all so different, yet the same. I love my sleeve and am glad not to have to bandage every day (still do at night) it seems to give me more freedom... maybe that is part of my problem. Oh and WHY is it my dominant arm
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Denise-G - do what works for you! We are each unique and there is not "One Size Fits All!"
I am not a LE wrap person at all! (My use of bandage rollers goes back to my years of being a show jumper and Dressage rider/owner for the protection of horse atheletes legs.)
just ordering a 'sleeve and glove' does not mean you got the right sleeve and glove. There are so many variables. I do not 'fit' any of the Off The Shelf garments so mine have to be custom - especially hand as I have sliightly webbed fingers (never knew til I started with LE - LOL)
I do not wrap at all (I do have what I need and know how to IF necessary). I wear my day garments, my n ight garment and use my FlexiTouch. Early on I did wrap, did my appts with my CLE Guy, he ordered my garments and it was not good - he ordered high compression but my body does not like it so they made it worse - sent back and light were ordered and they work great. We fought for almost a year before he decided to order me a Flexi Touch (the first he had ever ordered) and it works great! So my daily plan is wearing my day garments, wearing my night garments (with IsoToner Opera lenght glove under and have 2 over sleeves to use as needed). I use my Flexi Touch daily. LE does not stop me from doing anything I want to. The more active I am the better - winter is the worst time as winter's are brutal here so can't get oput and do as much.
We are each UNIQUE - so be/do what is right for you - not what 'someone' tells you you have to do.
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