Bandaging (7 weeks in) isn't helping much -- any tips?

TrixieSF · June 2015

Hi! I am new here. :-( I am eight years post dx. For about six years (since an implant exchange with an over aggressive surgeon) I've had LE that is mild and manageable -- a couple months of biweekly PT with my gifted LE therapist would always bring my mild but painful flare-ups down to 0%, totally asymyomatic. I never needed a sleeve or bandaging.

Sadly, I have "leveled up" considerably (and inexplicably, I might add). Can't see my knuckles, forearm too swollen for long sleeve blouses, etc. My therapist got me bandaging right away. My husband I both learned to apply the bandages. She wants me bandaged half the time, in any configuration that works for me. We did try full time bandaging at first but my skin got irritated and needed more rest. I've tried one day on/off, two days on/off, and finally landed on daily for 12+ hours. I prefer to do this during the day because I tend to swell during the day but not at night, and also I have great difficulty sleeping with the bandaging.

The good news is we got the skin irritation down, and the arm isn't as tight/hard. But after 7 weeks the size hasn't gone down at all - in fact it has gotten a bit bigger. If I go a day or two in only the sleeve, the arm hardens and swells right away. Now I'm concerned that I've experienced permanent tissue changes. The other problem is I tend to get very swollen in my hand during bandaging, and the hand gets better when unbandaged. But if I keep bandaging, could the hand damage become worse?

I will note that my bandaging includes use of foam panels/pieces above and below my hand, plus chip bags around the upper forearm. I see my therapist 2x weekly for CDT and do my exercises plus MLD at home. I wear a 30-40 mmHz sleeve and glove when unbandaged, but I sleep with neither. My arm is always softer/smaller in the morning.

So here are my questions:

- Has anyone gone from level two back to asymptomatic or almost? I am wondering if I need to keep this intensity longer, or if this is my new life.

- Put another way, has anyone bandaged intensely for multiple months (3, 4, more?) with good improvement and that improvement came in the later months?

- Finally, any suggestions for bandaging better? Other products or techniques? My LT is able to treat most people without bandaging, so she doesn't seem to have more tricks up her sleeve.

Anonymous · June 2015

Hi Trixiesf... Welcome to BCO. I haven't posted here in a while but sometimes I look in. Your post interests me because I've asked myself the same questions. I've grappled with bandaging and I haven't kept it up for months because I get tired of seeing inconsistent results after a while. Those would be due no doubt to my incompetent method of wrapping. I havent found it easy, but I will say this. ONCE you get it right, and consistently, it is the gold standard. I know I've felt much better when I have managed to do it right. Be encouraged that you more than likely will be much more successful than me as I consider myself the worlds worst wrapper. I really hope someone will be along to give some advice. All the best.

Kicks · June 2015

Have you tried kinesio tape? Doesn''t work for me but have heard some who it did.

The compression level is important. I need low compression - high is nasty causing rapid swelling. I keep mine under control by wearing my custom sleeves and gloves (there is no way OTS will fit me - especially gloves) daily. My night sleeve at night. Without a glove/gauntlet hand will swell from jusst,onlu sleeve on. Day and night garments work on different principles - active (day) and passive (night). Use my FlexiTouch daily. I have not wrapped in 5 yrs.

When I did wrap initally I did not have "foam panels and pieces above and below" my hand. Never had "chip bags" either.

We are each unique and what works for one will not necessarily work for all. What works for me is not what most say works for them. There is no "One Size Fits All"! We have to learn what works individually.

floaton · June 2015

as kicks said, we're all different, but I did have a thought or two based on things that have worked for / been relevant to me... your mileage may vary

. I've found when I'm stuck / feeling like mld / wrapping isn't working well some gentle (ie I'll never let anyone with a graston tool anywhere near me ever again) myofascial release work to my shoulder / side will help get things moving again. Also, I did about 2 months of wrapping last year and ended up with an ulnar nerve injury and a frozen shoulder from the compression and limited mobility, so keep an eye out for problems like that (no one warned me, but then no one was surprised and kinda acted like it was all my fault I'd developed these problems). Does your let have a local "expert" she can refer you to since she's basically admitted she has no more ideas? You can ask your surgeon too for a different referral. I had to switch when one of mine gave up on me. One last thought - how old is your sleeve? Is it too small for your arm now given your flare? Does it have too much or too little compression left? It certainly shouldn't be making things worse!!
Good luck. To say this is frustrating is an understatement.

Kicks · June 2015

Good point floaton about how old the sleeve/glove makes a difference. If only have one set, they should be replaced every 3 mths (according to my LET guy). I get 2 new sets every 6 mths and alternate them. They should also not be washed in hot water or dried in a drier with heat ('fluff'/no heat with a towel works).

(Whats a 'grastron tool'?)

Tomboy · June 2015

That was also a good question you had, the part about 'Does it ever get better to the point of being asymptomatic'. I wonder that myself. I had a friend who has passed now, she passed when I was in radiation treatments, and I wish I could ask her. I know she would hardly ever wear a sleeve, but remember she had told me early on that she had to wrap every day. And her husband has told me that she had a flexi-touch machine that she would use all of the time, he doesn't know what happened to it. And Lois had also given me her reid sleeve, which I did try, my LE therapist set it up for my arm, but I later gave it to my LE therapist. Too hot and bulky for me, my quilted night time sleeve does just great.

I hardly ever wrap anymore. I also hardly ever use a sleeve. it seems to have stabilized, it is still bigger than my other arm though. It gets to a certain point, and that's about it. my LE therapist can reduce it greatly though it comes right back when I unwrap it. Sighhhh.

But, I do remember that Lois' arm would look totally fine and great, she told me she did mLD every night, and still slept with that arm raised. Sometimes, when we would garden together at her house, We could see a flare happen, but then the next day her arm was fine! So here's hoping! For you, that your arm will be like hers. It's too late for my arm as it never gets beyond a certain point. So, I think that the tissue changes are permanent on me, partly because i had 30 nodes out, but also when I kept telling my doctors about the heaviness that I felt, and the fine structures that were becoming obscured by fluid, before i knew what to do and knew better, they would discount. it took them over 4 months to give me a referral to the LE'ist. Who I HAD seen, before the surgery, who measured my baseline. They kept saying things like, oh its not that bad. o its just swelling still from the surgery. It still pisses me off to think about it, 3 years later. I would have loved to nip it in the bud. There are still a couple of expensive favorite blouses hanging in my closet that I can no longer wear, but I am still hoping. But I am still mad. Good luck to you.

floaton · June 2015

https://www.grastontechnique.com/CartUSA2.html

Kicks, there are sets of them on this link. While I'm sure they work well for some things, I associate them with the first time my side really flared when my let was trying to work on my cording.

Tomboy, ugh. I hear you. I try not to dwell on how angry I am about getting blown off about this too for so long. I believe I was completely mismanaged. Mine was blamed on post-surgery, then post-taxol - for a year. I developed what I think were avoidable complications that should have not have developed to the extreme mine did in someone who was under close regular care. And if I had a nickel for every time someone told me "your arm doesn't look that bad," I could... buy a few sleeves. Grrr.

I have been able to get my arm pretty close to normal with nearly 24h compression for the past 6 months straight (sleeve in day, "wrapping" at night). And living with my parents so I don't have to stress my arm to take care of my toddler if it's had too much that day already. And twice a day mld every single day for the past year. I have, but can't use, a flexitouch (due to my nerve issue.) But like you I don't think I'm ever getting back to normal. One of my lets referred to flares as "Russian roulette," in that you're fine until you're not - you never know which flare will be the one you can't get back from.

SusanSnowFlake · June 2015

Bad wrapper here, I figure bad is worse than nothing, so I'm going with nothing at night, but I'm looking into the night sleeve, it would make things simple, at least as simple as it can get with LE.

Sounds like you're doing everything you can. The only thing you didn't mention was salt intake and weight lose. I've read that some people have luck getting swelling down while or after going on a low sodium/fat/carb/calorie diet. I was told by my LEPT that decreasing those things can aid in keeping LE under control. Not sure what good foods are left on that diet but I'm starting next week. I was going to start last week and the week before but ..............

Hope you find what works for you.

Binney4 · June 2015

Trixie, have you checked this all out with your doctor? That would be a good place to start, since there are many reasons for swelling, not all of them obvious. If s/he agrees this is "just" lymphedema, then it's time to look for another LE therapist for a "second opinion". Here's how to find one near you:

http://www.stepup-speakout.org/Finding_a_Qualified...

As others have suggested here, it can be difficult to get good, knowledgeable care for lymphedema, so looking around for other resources available in your area is a good idea. Please do keep us posted. Wishing you solid answers and great control soon!

Gentle hugs,
Binney

TrixieSF · June 2015

Thanks ladies for all these thoughtful responses and suggestions. Gave me some good ideas and things to research. So helpful!

Floaton, that was particularly interesting to hear that 6 months of near 24 hour bandaging got you almost back down to 0. Were you ever able to stop bandaging? Or did you have to keep it up? Also, I have a toddler, too. He's three. Man, I hadn't lived until I tried to wipe his bum with my bandages on! Haha. Makes me feel less alone that I'm not the only one, or even the only one with a little one. (Actually we've been trying for #2 and it may be a miscarriage that triggered this flare up, but that is a whole 'nother post!)

My PT did try building up my hand a bit more, and that helped the hand a bit.

This past week has been a roller coaster. Tuesday night after 16 hours of bandaging my upper forearm was the smallest its been in a month. By 4pm Wednesday (wearing the sleeve not bandages) it was 1.75 inches larger and had surpassed my previous max. At max my left forearm is now 3 inches larger than the right. Arghhh.

For follow up based on the suggestions above, I think I'll:

- Get fitted with a different sleeve and glove;

- Look into night garments;

- Consider 24 hour bandaging for a while; and

- Look for an opportunity when my skin is stable enough to try kinesio tape;

- Get back on the "treatment diet" I was on during and just after treatment (I've lost a few pounds in the last few weeks and I do think it helps). My fitness level and weight are well within range, but we can always do better, right?; and

- Look for a second opinion from an LET.

Fortunately my oncologist has ruled out a recurrence, and he sent me for an ultrasound which found a lot of scarring but no cancer. (Yay!). I'm going to ask him for a referral to Stanley Rockson at Stanford. I am interested if he has any new idea. I'll report back when I have news...

Zillsnot4me · June 2015

I have mild LE. PT helped tremendously. I do mld in the shower and watch my salt. I also practice Jin Shin Jyutsu. These are the holds for LE. The thumb in my armpit worked the best for me. Sometimes you can feel it right away or sometimes it takes a day. It won't hurt to try while watching tv.

Place your left thumb in your right armpit and wrap you left hand around your upper arm. At the same time place your right hand on the inside of your left inner leg. Hold for at least 20 minutes.

Or place your whole left hand in your right armpit with your right hand on your left inner thigh.

Do the reverse of either one for the other side.

Good luck!

floaton · June 2015

first off, so glad to hear it isn't related to a recurrence!

I wanted to clarify, I had improvement after 6 months of sleeve every day and bandaging every night. Both low pressure. It took many many tries to get a sleeve that worked / didn't make things worse for me.

Ha! Changing a poopy diaper while wrapped = super fun times !!! Not that I would wish LE on my worst enemy, but you're right it does make me feel a little lessalone to hear stories too.

donsuzbee · July 2015

floaton! What did you do for the ulnar nerve entrapment? I have dealt with ld for 10 years. About 9 months ago the ld got really ugly again. Have been seeing a lymphedema therapist and bandaging as much as I can tolerate. Now have developed compressed ulnar nerve. Therapist does not have any ideas on what to do.

floaton · July 2015

Ugh, sorry to hear about your ulnar nerve. It really sucks. When no one knew what to do, I self-referred to a physiatrist to see where the problem was, which at least confirmed it was across my elbow and not brachial plexus so I knew what part to be careful of. I'm not recommending this, but I personally chose to avoid compression and flexitouch for a few months while it healed and "just" did twice a day mld and elevation. It did work to calm the nerve down, but my swelling did creep up over that time and it's taken me months and months to get everything back down. And since it got so bad, I can still flare up the nerve very easily

. I still wish my le pt at the time had been on her game and figured out that's what the problem was when I first started complaining of the heel of my hand hurting, so we could have been more aggressive about me taking a break / fixing the padding before it became a (now over a year) long term problem.

StellaStarr · July 2015

Hello! Since this Discussion Board seems to come the closest to possibly being able to answer my LE MLD/CDT questions, here goes:

1. What if MLD and a course of one month of CDT/Bandaging is not successful?

Like, my "improvement" was a mere 1 cm. 1 cm! That's less than 1/2".

Whats next for women like me? But wait -- it gets better.

2. On top of that, what if a LE patient is allergic to the synthetic fibers in various types of daytime sleeves? The only garment I seem to tolerate is this all cotton oven mitt night time arm sleeve. Hideous.

But wait, it gets even better.

3. My PT/LE Specialist used much harder and deeper arm strokes in the 2nd week of my month long CDT bandaging treatment on my right arm. Why? Because my arm didnt respond much by the end of first week. This new massage stroke only pushed fluid into my shoulder, upper back, mid back, side, face, and trunk (right side, that is). Where it stayed. My LE Specialist did not address this new development. Anybody had any aspect of this experience?

4. Now, 3 months after the bandaging and after a very recent visit to my Onc who had a fit when she saw my arm, suddenly (after my Onc contacted her) my LE Specialist contacted me stating she just attended a new MLD class where she learned a new technique. One that now recommends.... a deeper, harder stroke!!! ...and she wanted me to come in so she could try it on me. She never responded to my question as to how this new harder and deeper stroke was any different than the one she used 3 months ago --- when my right side ballooned. Anyone know anything about this new massage technique? (and one that is a big departure from the so-called "gold standard," i.e., the featherlight MLD strokes?) I can find nothing online about a new technique.

glennie19 · July 2015

wow, stella,,, can you go to a different LE "specialist"? Harder and deeper strokes do not seem to be the standard of care, as far as I know. Hoping some of the more knowledgable ladies will pop around later to help you.

Bandaging (7 weeks in) isn't helping much -- any tips?

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