lLE Treatment Question

hope1 · February 2012

I haven't posted in a couple months, but had my first bout with cellulitis last fall, 10 years post stage 3bc diagnosis. Now I am going to an LE specialist for treatment of my arm which got substantially bigger after all this. I switched therapists finally after not begin happy with first one. My bad arm is 4 to 5 cm bigger than my good arm but only above the elbow. Below the elbow it is only 1 cm larger, and the wrist and hand are normal. Here is my question. My new therapist bandaged my arm (first time ever) every two day for 8 days. My arm actually got down to near normal! Only 1 cm difference at largest point. However she did not have the right size sleeve on hand to give me so she gave me a size 3 long Juzo instead of the size 2. I don't know if that was the problem, but three days later my arm was right backup to 4cm larger than the gd arm. I went back and she measured me for a night sleeve and now I am waiting for that. And just doing manual drainage at home. She sd we would wrap again when the night sleeve comes in. Meanwhile my arm feels heavy and once in awhile I get mild pains, more like throbbing. Drawing on all the experiences of you who have unfortunately dealt with this, is all of this normal? Shd I be doing something different? I am wondering again about the competence of my therapist. Or maybe this is just the way it's going to be. Which is kind of what she indicated.

Thanks for all your insight into an area I have never really had to deal with much. For ten years my LE aw very mild. It seems that has changed.

thefuzzylemon · February 2012

In my experience...Therapists are as different from one to another as my ex-boyfriends! so, I have a few questions for you....

Are you doing the massage...this really does work..you have to do it everyday, twice a day. I like to do it when I take my morning shower (yeah..they want you to lay down, but that is the time that I could devote to the procedure). It has to be the complete massage - belly, sides, chest, shoulder, elbow, wrist. If you are not aware of this procedure, check out the LE threads...they have every resource imaginable on there.

Next...are you wearing a sleeve and a glove? You should NEVER wear a sleeve that doesn't fit right and you should NEVER wear a sleeve without a glove. If your therapist has not told you these things...find another therapist....talk to a support group or someone who has had an effective therapist in your area. And, ask ALL of your doctors...my best advice for my hand issue came from my PS. After months and months of treatment and severe pain, he fixed my with one shot...

Also, are you careful not to over exert (sp?) with your affected arm/hand? Do you wear gloves? Do you eat a lot of salt/msg? Do you live in a hot climate? Do you normally sweat a lot? These are all things, and there is more, that can trigger LE. Too many therapists get comfortable in their jobs and go to work for a paycheck...find someone that you can trust 100%.

If you're in WI...I could give you resources if you like...just PM me.

kira66715 · February 2012

Hope,

I completely agree that LE therapists vary widely.

Wrapping reduces volume and daytime compression maintains that reduction. It sounds like she reduced the arm, then gave you a poorly fitting sleeve and didn't provide you with night time compression or teach you how to wrap each night to maintain the reduction.

Not everyone swells at night, but many people do, so they use the night garments or wrap.

Have you seen the NLN treatment guidelines? I'll post a link, and then you can discuss it with your therapist.

It sounds like she did a great job with the intensive phase, and then kind of dropped the ball for the maintenance phase, initially, and is now re-visiting the plan and will get you good day time compression and night tiime compression as well.

It sounds like your LE is very focal--just the upper arm and the good news is that nighttime garments work much better for that area than hands.

There is an element of trial and error, and I think she didn't anticipate how quickly you'd re-fill and lose the gains you'd made.

I have a great LE therapist who is an LMT and wanted a PT on the case initially, and I went to 5 different PT's--most with excellent credentials--and the quality varied widely, and one in particular started out great and became very unhelpful.

My LE therapist doesn't take insurance, and I work in rad onc and have to refer patients and I've interviewed essentially every LE therapist who takes insurance, and I've yet to find the perfect one, and it's frustrating.

Here's the link to the NLN position papers:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm

And to a treatment page from stepupspeakout:

http://www.stepup-speakout.org/treatments_for_lymphedema.htm

I've seen this a lot with the patients I refer: they go through the intensive and then are just given a sleeve/glove and wonder why they're back sliding: because the therapist didn't give you all the tools so you could put a wrap on at night and halt the process.

Hang in there.

Kira

hope1 · February 2012

Hi all. I thought I would come to the experts to seek an opinion. I have spent tons of time in the past week reading this board and feel I've learned so much. But sometimes a little knowledge can make a person a bit dangerous. I find myself second guessing my therapist. In a nutshelll, I was waiting for my night sleeve to come in for two weeks, which my therapiest kept telling me was going to be such a big help to control my lymphedema (after bandaging, it reswelled up to 5 cm bigger than my good arm.) Now I have read in some posts that night sleeve don't do much good if you don't swell overnight, which I don't. My swelling seems to take place during the day. However, my sleeve came in Monday, I went in and she bandaged my arm (after use some kind of pump on my arm for about 15 minutes). I went back two days later and my arm had shrunk 2 cm. She gave me a new sleeve (the last one she gave me was too large, but she didn't have the right size on hand - isn't that odd??) that seems to be a better fit - smaller size but still the lower compression - I believe 20-30 (the 2001 Jobst). She told me to use the night sleeve also, and pretty much said (she DID say) that this was about all she coudl do for me and this was going to be my new normal. Of course she did say to continue with the MLD at home, which I do faithfully. And of course my arm has filled up again to where it is now back to a little over 4 cm. bigger than my good arm. Is this really my "new normal" and I am just supposed to let it go and adjust to having a bigger arm? I feel like the first time we wrapped we got it down to only 1 cm. bigger than my good arm and then put on a bad sleeve, and I want to shoot for that again but hopefully use the correct garment. I realize it will refill a little after wrapping, but I feel like she's given up. Or am I just being too stubborn? She keeps telling me to calm down and has even said I should be glad the cancer hasn't come back and I'm healthy. Although she said it in a nicer way than it sounds here.

Sigh. I am so frustrated! I know I shouldn't complain to so many of you that are dealing with worse scenarios. But from reading the wealth of information here, it seems to me that if I don't treat it aggresively, it will continue to get worse. Also, where I live, there are very few therapists with lymphedema knowledge, so my choices there are limited. Oh what a tale of woe I'm weaving!!! Wine wine

lago · February 2012

My LE MD told me to try not wearing my glove since I don't seem to have swelling there. Note I said MD not PT. In most cases I agree you should not wear one without the other unless you are instructed to do so.

Because I am not wearing the glove he wants a 6 month follow up rather than 1 year.

kira66715 · February 2012

Hope,

That therapist is outrageous! I am steamed. This is NOT your new normal!

A well fitted night garment functions like a wrap--usually not quite as well for hands, but pretty well for arms, and reduces the volume.

Personally, wrapping works far better for me--and clearly it works for you as well.

The daytime compression garment--and Jobst only has THREE sizes--and relatively low compression, so how could she give you the wrong size in a Jobst?, which is the farthest sleeve from custom, but the easiest to dispense as it has a huge range of size--is to maintain the volume decrease.

Your arm does decrease--and that is your new normal, but it has re-filled, so a wise therapist would figure out when that is happening, and have you wrap/use foam filed --ie. "night" garments--to reduce that swelling and keep it reduced with compression garments that actually compress you effectively.

Time for a new therapist.

Some people do need compression pumps.

I asked my LE therapist why things got worse as the day went on--and she said because the lymph fluid was collecting.

We've all had experiences with less than ideal therapists--I had a LANA certified one tell me not to wrap my pinkie--and woke up with a swollen pinkie, Binney had a LANA certified therapist significantly worsen her LE. We've found other people who are wonderful, ultimately.

Please Hope, find someone new. You don't give up on a patient and tell them to be glad they're alive, but you didn't figure out how to manage the lymphedema that was your job to manage: she failed and you deserve better. Far better.

Hopefully one of the other therapists will be better.

It sounds like a key to getting your LE under control is that you learn how to wrap, and use that skill when needed.

Kira

Binney4 · February 2012

Hope, NO! Surprised There is nothing NORMAL about what's happening with your therapy, new or old or anywhere in between!

You do to look around for a new therapist, or if that's impossible, sit down with one of the ones you've already tried, show them the National Lymphedema Network position paper on treatment (Kira posted a link to it above), and tell her you want her to follow that protocol: daily wrapping until the swelling is reduced, teaching you to wrap yourself -- and then maybe think about going to another fitter who can actually fit you properly. (Have you checked out all the links on the StepUp-SpeakOut therapist page?
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm)

If you are not swelling at night, for goodness sake don't accept a night garment. The swelling should be under control with wrapping before you order ANY garments, and if you accept the ones she's offering you now your insurance may not pay for another anytime soon, when you arm is in better shape. Wait until your arm is well and truly reduced and you have the skills to keep it that way.

Many of us wrapped our arms at night for weeks or months after therapy ended and THEN decided if we wanted night garments or not. Don't let her push you into that.

As for her using a pump, she should only use it AFTER she has done Manual Lymph Drainage on you herself -- it is not a substitute for the hands-on lymph drainage that she is getting paid to do. NEVER let her use a pump on you if she has not first manually cleared your nodes herself, and she should also clear your nodes again when the pump session is over. And for goodness sake don't let her sell you a pump yet. It may be at some point you'll want to look into that (or maybe not), but now is not the time.

Don't calm down just yet! Kiss You may not have a ready supply of great therapists close by, but you sure don't have to settle for this one's definition of your new normal. You're going to be just fine -- hang in there! Tell us how we can help.

Gentle hugs,
Binney

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