Only I'm sorry you have to join us here on the lymphedema (LE) board. Goodness, but you've been reading the board here! Lots of questions, but just wanted to assure you that all of us have found this LE a steep learning curve, and few of us were told much about it by our medical team. Too many doctors have little training in diagnosing or treating LE and some can be relunctant to recognize it. NPat posts here often, she's a NP and until she developed LE knew next-to-nothing about it either. It is not taught in nursing programs, and many med schools cover the entire lymph system in a single day's lectures. So we have to do a lot of advocating for ourselves.
I know you'll find lots of information on the lymphnet and lymphnotes sites. But just to run through some of your questions:
LE is for life. It does not go away, though in the earliest stages it may be relieved by elevating the arm. Later stages involve permanent damage to the tissues, the development of fibrotic tissue, and further difficulties with lymph flow. The major medical danger of all this infection, which can quickly become systemic since it involves the lymph system, and sometimes requires hospitalization. Untreated, of course, the infection is life-threatening.
There is currently no certification process for LE therapists, so anyone with as little as a week's formal training in LE therapy can advertise themselves as a qualified therapist. We each need to ask questions of any therapist: they should have at least 135 hours of specifically LE training beyond their OT or PT training, and at least a year's supervised experience treating LE. I mention that because you need to know that the standard treatment for LE involves not only a period of frequent massage by the therapist (training you to do it yourself, as well), but also daily wrapping of the hand and arm for a period of time (around 2 - 6 weeks -- varies according to the school the therapist went to). Following that, the therapist (or a qualified fitter she recommends) measures you for a glove and sleeve (the sleeve alone can force the swelling into your hand and give it no way to get out). These are generally worn during the day, and the hand and arm wrapped at night (or you can get special night garments that take the place of wrapping after the initial therapy phase). The therapists massage helps to encourage new pathways for the lymph to take in draining from the arm; the wrapping further reduces the swelling and prevents the arm from re-filling; the garments maintain the reduction once the therapy ends.
There are a number of companies that make compression garments. The widest known are probably Juzo and Jobst. Bio-Concepts is a smaller company that evolved from being a burn-garment maker. They do have a web site at: http://bio-con.com
, but your therapist and/or fitter may not have heard of them or deal with them. (Night compression garments that replace the wrapping include Jovi-Pak, Reid Sleeve, and Solaris.)
And finally, the pink alert bracelet may help, but you may need to take stronger measures (for one procedure where I wore the pink bracelet, they made me take it off because it wasn't issued by the hospital!) Make sure directions not to use that arm are written in the doctor's orders, tell everyone you see when you get there (especially the anesthesiologist), and write it all over your arm with permanent marker (comes off later with alcohol). Getting your doctor to sign the directions on your arm is a major move toward self-protection -- love it!
Okay, what you most need to know is that this is something you CAN deal with (we all wonder about that from time to time!) You can learn to massage, to wrap, to take meticulous care of your skin, to do the exercises that help, to use and care for compression garments. And when you do, your life will be back in your own control. It's doable, Robin, even if it can seem like a long, rough trip. You're not alone, either, as all the women here are with you on this. Please let us know what you discover and how it's going. And how we can help!
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