need input

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

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

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

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.

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.