need input

djls

Ok ladies. I need your input.

I had a flare recently and my elbow developed pitting edema (I pressed a spot for 10 seconds, let go and a deep indentation that remained). I called my le pt and got an appt. She measured and said everything had increased except my hand. My elbow swelled despite wearing my sleeve and gauntlet. As a matter of fact, it looked much better when I got up yesterday and by the afternoon, it had swelled right under my sleeve.

I asked whether it would be good for me to have a higher compression sleeve and she said she doesn't use them. She doesn't like them because they are heavier. I said I would like her to teach me to wrap in case I have to do it some time. She said she won't because "once you wrap, you never go back." Once I start wrapping, I will always have to wrap. She said that when and if I get bad enough, then we will start wrapping.

I mentioned the pitting edema and she poked my arm a couple of times and said I didn't have pitting edema. If I did, we would be able to feel it. I told her my other arm doesn't leave an indentation when I press for 10 seconds and she just replied that I have le and my arm will always be different than the other. Never mind the fact that 2 weeks ago, my elbow was just fine.

I basically left the appt without any tools to deal with a flare and I was pretty livid.

Is it true that if I were to wrap, even just to get a flare down, I'd have to keep wrapping? Do any of you use a higher compression sleeve and gauntlet/glove? How do you handle your flares? Is it important to treat new areas of pitting edema or can they just be left alone? Do you ever have swelling while you're wearing your sleeve?

So far I'm stage 1 le and I'd like to keep it that way. I'm worried that areas of pitting edema will become fibrotic. She sure doesn't seem to be too interesting in keeping me from getting worse.

I was thinking of ordering a wrapping kit, a higher compression sleeve and gauntlet and just paying out of pocket. I found a youtube video on how to wrap.

I didn't even bother wearing my sleeve and gauntlet today....what's the point, if my elbow is going to swell anyway? I thought the whole point of wearing a sleeve was to prevent the swelling. My thumb swells when I wear my gauntlet or my glove too and she refuses to even consider ordering something custom, not that I would pay the money for something that's custom. She said there wasn't anything we could do for my thumb. I came up with a way to wrap my thumb with stuff I got from CVS pharmacy when I wear my gauntlet and glove. She only likes the Jobst brand and is strongly against any thing else.

Thanks for listening.  Any advice?

djls

Binney4

dj, have you looked around for another therapist? A "second opinion" is definitely in order here. I was wrapped for several weeks of initial therapy, I wrap whenever I fly and when I have flares, and it averages about once every two or three months. The idea that if you wrap you must always wrap is nonsense (as you rightly assumed). If you learn to wrap your fingers and hand your thumb can OF COURSE be controlled. So, since this therapist is not in any hurry to help you succeed at keeping your LE in control, you might want to look areound for someone who will.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Don't buy any more garments until you get help from a therapist who's willing to help you reduce and control your swelling. Whether you need stronger compression or not will depend on how well it's controlled by the garments once you have the tools you need to do self-care. We all flare sometimes, despite the garments, and that's when you need the skills and flexibility to wrap.

Don't try wrapping without help. It's a unique skill and needs to be taught. Besides, how much of your limb to wrap, how to control the thumb, how to pad the elbow as a trouble spot, are all questions an experienced therapist needs to answer. You're right-on about needing to do something NOW instead of waiting. Go for it!

(We need an smilie waving its little yellow fist in the air!) Onward!
Binney

cinnamonsmiles

I have run into so much inadequate help from medical professionals. From cancer, to leukairioses on the brain, to an arthritic, ankle to breast cancer and treatment side effects. 

I definitely understand where you are coming from with the LE. I spent 5 months last summer in OT for severe scare tissue adhesions and pain from the BMX. I complained so much of LE like symptoms all summer. At my LAST appt., it was like she finally heard me and gave me a 5-10 minute MLD instruction and dismissed me.I have no idea why she even bothered to measure my arms at all. The size would fluctuate and yet no mention of LE. It took me until this summer to find another LE therapist by accident while getting PT for my back.

She is supposed to be "thee" go to person in that clinic system in that city for LE and breast cancer/cancer ot and pt. PHEWEY on her. She could tell I had LE when I registered for the appt with my shirt still on. I was thrilled, I thought I found someone compitent. Wrong. I had to bring up getting a sleeve. I had to bring up whether I should be doing anything at home.

She and the clinic are not registered with any LE network. I am bringing this up at the appt. tomorrow.(I had already brought it up at my first appt that she wasn't registered. She said,"hmmm, I will have to contact them. What I figure now, is that she either doesn't have the training, or doesn't want to spend the extra money) If she and/or the clinic would be registered, there is an LE organization that would help women pay for sleeves based on income. I know I would certainly would benefit.

Sounds like she is not the person for you, so go find another. Don't waste the money and time on them. I have learned from the women on here that LE is nothing to mess around with.

How I never graduated from mild LE to a higher grade LE, I will never know. I have and had cuts on my fingers, burns from cooking, and a treble hook fish hook in my finger last summer (me and the walleye were actually on the same Rapalla at the same time til my SO got the walleye off!)

Good luck...find someone who knows what they are doing and willing to do it. I have been wearing sleeves and I can tell the benefits from it..my arm swelling goes down. When I slack off and not wear them, it goes up. 

kira66715

djls: why is finding a good LE therapist SO HARD???

Wrapping is not an addiction or a treatment that commits you to constant maintenance, it is the best way to reduce volume, and the basic concept is that you wrap to reduce volume and remove stagnant lymph from the tissues and then you use compression garments to maintain the reduction.

I've seen far too many "LE therapists" who will not teach or do wrapping. It's usually an ignorance thing.

Wrapping is a powerful tool that will put you in control of your home maintenance.

The NLN position papers are almost unreadable for the layperson: but do share the paper on treatment with her--or use it to review the treatment course with your next therapist--it's the one on treatment:

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

Compression Bandaging
Compression bandaging refers to a specific technique54 utilizing multiple layers of several materials to create safe and effective gradient compression. The necessary components of compression bandaging are:
1. Tubular bandage lining 2. Digit bandages 3. Polyester, cotton, or foam under-cast padding 4. Multiple layers of short-stretch bandages with 50% overlap and 50% stretch to cover the entire limb
In some patients, it is also necessary to utilize polyurethane foam in various densities and configurations within the bandaging system. These materials are applied according to standard technique to body parts with lymph- edema. Short-stretch bandages have limited stretchability when pulled. They can stretch 40-60% from resting length, compared to long-stretch bandages such as Ace® bandages that stretch to greater than 140% of resting length. To achieve an effective compression gradient, short-stretch bandages must be strategically applied with low-to-moderate tension using more layers at the ends of the extremities than higher up.50-55 Pressure within the short-stretch bandages is low when the patient is not moving ("resting pressure"). Muscle contractions increase interstitial fluid pressure to assist the fluid to move out of congested areas ("working pressure"), as muscles ex- pand within the limited space of the short-stretch bandages.56 The cycling between low-resting and high-working pressures in the interstitial fluid areas under the bandages creates an internal pump-like action. This action encour- ages movement of congested interstitial fluid into the vascular circulation. The short-stretch bandages also prevent refilling of the fluid into the tissues. Another property of short-stretch bandages is to reduce the tissue hardening (fibrosis).1 Compression Bandaging is always a part of Phase I CDT. Some individuals with more severe forms of lymphedema may need to use home compression bandaging longer term as part of Phase II. Some locations of the body, such as the head and neck, are not amenable to standard short-stretch bandaging so other compres- sion techniques have to be used.204 

I see far too many therapists in the community who teach a bit of MLD, get compression garments and kick women out, and tell them this is their "new normal"--NO IT'S NOT!!! It's just a lazy/ignorant/uninformed therapist's short cut treatment.

I took the CLT course, and yeah, it was intense, but to think that after 9 long days, I could go out and be good at treatment in a busy clinic was a big stretch. 

There is no quality control for therapists, we just need to know what is required and hold them to it.

I went through 5 qualified LE therapists, before I found mine. Five. And 4 of them were LANA certified....

Kira

djls

I spoke with another le pt and she said that she probably wouldn't do anything different than my current le pt.  She said something about their being 4 schools of thought regarding le tx.  I'm guessing it has to do with how aggressively they treat it.  She said she doesn't like her patients to do home wrapping for extended periods of time.  She also said that it isn't unusual for patients to respond to initial therapy and then find their symptoms worsen.  I'll probably see her at least once to get an evaluation of my sleeve and my arm.

My current le pt suggested trying to wear both sleeves at the same time and see what happens.  I did that and the swelling is now 3 1/2 cm difference instead of 4 1/2 cm.  The pitting edema at my elbow hasn't changed (it's still really spongy), but at least the swelling just above it has gone down.  If it helps, I'm not sure why she doesn't just order me a class 2 sleeve.

djls

kira66715

Um, there are not 4 schools of thought on LE therapy--there are 4 approved schools that form the NALEA group: Klose, Vodder, Norton and ACOLS, and there are a few other good schools out there--Casley-Smith, Laskinski

I talked to my LE therapist (Klose and Vodder trained) and she bemoans the fact that LE PT's in practice don't do the CDT that requires multiple visits and they let fluid sit, and fibrosis start.

The problem, as I see it, is that you get trained in a long week of a class (I did it, and some of my classmates were ready to start treating patients, and some were not), and then you're expected to go out there and work in an environment that wants you to optimize payment and see a lot of patients and LE therapy just doesn't lend itself to the "classic" PT model. It's a chronic disease--and far too many PT's cut corners and don't teach bandaging, and put patients on the pump and I've seen a ton of them just teach MLD and hand out sleeves/gauntlets(if you're lucky enough to get hand protection).

There is no quality control: not from the training schools, LANA or the boards of licensure. And the APTA fights against any PT needing extra training.

So, what do we get: substandard treatment. And having to fight to get our limbs and trunks down to a normal size and tissue consistency, because that IS achievable with LE therapy.

Sorry to rant, it just gets me really ticked off that she's leaving you with pitting edema at the elbow and a 3.5 cm swelling, and saying you're done. You're not done. You should, IMO, get a course of CDT--intensive treatment.

Kira

Nordy

djls - I have not read through the other responses as I am short on time this AM, but I know that the ladies above will give you sound advice. But I cannot help but put my 2 cents in and say that you NEED to get another therapist. One that A: listens to you and your needs and B: actually knows what they are talking about, is not complacent and is will to work hard to adress your needs. Okay, maybe that should have been B, C and D. I am sorry you are having to deal with all of this, but keep looking...

hugz4u

Haven't read all your posts but I would say you need to trash that girl and get a new one. Yes,wrapping is essential and although I don't need to wrap I have learned just in case and practice it every few weeks as I tend to forget.

Check out the "Hats off to those that wrap thread."

 Your MLD girl sounds lazy and not interested in your well being. Get rid of her fast.

KS1

djls, I've had LE for a little over 3 years, and your therapist sounds kind of like the therapists I had early in my LE journey, who gave a bit of instruction on MLD and skin care and sent me to fitters for day garments.  I didn't know that there were any other things that could be done for LE.  When I learned from this board about other tools for LE management (e.g., exercises, wrapping, night garments, kinesiotape etc.), and I brought them up with my therapists, the general response was my LE was mild and I didn't need these.  

My LE progressed, and as it did I had to advocate for appropriate treatment (e.g., night garments).  I eventually switched to a group of OT/PT therapists at a major cancer center.  These  OT & PT LE therapists are very good and do many things that the earlier therapists didn't (e.g., garment fitting, kinesiotape, laser, myofascial release), but even they were reluctant to teach me how to wrap saying wrapping is difficult and my LE wasn't advanced enough to warrant it. 

Unfortunately, when my LE suddenly got much worse, and my garments didn't fit, none of the OT/PT LE therapists had an opening for 3 weeks.  The tools I had (kinesiotape, MLD, elevation, hydration etc) weren't enough, and because I couldn't wear garments, my hand and arm got progressively bigger to the point that the skin was breaking down.  If I had known how to wrap, I could have nipped the flare in the bud, but because I didn't have this tool, my LE spiralled out of control.  It took a lot of time & effort (7+ months of wrapping 24/7), but my LE is under control.  My hand's probably never going to be where it was pre-flare, but I can now wear a day glove for part of the day. My hand swells some when I do, but I can get it down by wrapping.

Here's my view on wrapping ... it IS a pain, but it is an incredibly powerful LE tool.  People with mild LE might not need the tool now, but they need to be taught how to wrap in case they need it in the future.  It's kind of like having a spare tire ... you need to have it BEFORE you have a flat tire.   -- KS1

carol57

KS, that's a very eloquent description of the problem.  My therapist is in that group--she told me recently she has never worked with night garments. Instead, she gives patients some tubigrip for some nighttime compression.  I tried it, and it's pretty useless. And she does not believe in wrapping or teaching wrapping when the LE is mild, like mine is.  The dilemma is distance to better options.  I'm in a somewhat rural area, and I'll bet my experience is pretty common in other similar areas.  I would not know much about LE care, were it not for this forum.  

Cindyl

Is this what you had in mind Binney?