Lymphedea from bp

Ericamary!--I found this amazing post by the woman who blogs as toddlerplanet about her favorite therapists in your area! There are links in her blog page:

http://toddlerplanet.wordpress.com/2010/05/11/lymphedema-therapy-in-d-c/

Lymphedema Therapy in D.C.

Looking for a lymphedema therapist or physical therapist in Washington, D.C. or the surrounding area? I've seen a BUNCH of them, and these are my absolute favorite physical therapists who I would recommend to any breast cancer survivor (or new mom, cough cough) in Maryland, Northern Virginia, or Washington, D.C.

Bretta FabianBretta Fabian. Bretta is my all-time favorite physical therapist. Her years of training and experience have helped her get directly to the root of the problem and know exactly what to do to help get the body back working the way it should be. Over the years, Bretta has eased the swelling in my arms, taught me manual lymph drainage techniques, stretched the cords of scar tissue running up and down my arms until they gently release (important both for lymph drainage and mobility), manipulated scar tissue on my chest (to relieve pain and unbind the muscles), put my back back in joint, and realigned my pelvis after childbirth (ooh, that was embarrasing to type. But if you've ever had that pain, you need to know there's help out there, and it may only take one visit). Bretta is affiliated with the George Washington University Medical Center and works closely with their surgeons. The only drawback is that her practice does not take insurance or medicare, so you're on your own. Bretta is at the Center for Wellness Solutions, 202-862-0770.

Vicki and Janice at The Adventist Rehabilitation Hospital of Maryland. Adventist Rehab has five lymphedema specialists. I have been very happy with and can highly recommend Vicki, who trained under the founder of the Norton School of Lymphatic Therapy. Vicki helped me understand how the lymph system works, both verbally and by referencing the instructive posters that surround the treatment area. Vicki is a master at lymphedema wrapping, has instructed both my husband and me in manual lymph drainage techniques, and has a cheerful, supportive demeanor in all that she does. Vicki is creative and helped me find lymphedema wrapping materials when I was allergic to everything she'd worked with before. She also returns phone calls from current patients and aids in ordering lymphedema sleeves, gloves, and nightwear garments. Adventist Rehab also has a half-dozen or more physical therapists at each site who are highly skilled in a number of different hands-on and rehabilitative therapy techniques. Janice in particular is a real treasure for hands-on work including scar tissue manipulation, muscle-energy techniques, and rehab to restore everyday function. (Both Vicki and Janice are referred to here by first name only, as they don't have a web presence of their own.) Adventist accepts many forms of insurance with a physician's referral. 240-864-6200.

Katina Marinos, MPT, is the chief physical therapist at a small practice in Rockville called Manual and Sports Therapy. Her specialties, as you may be able to tell from the name, are manual work and sports medicine, although she worked for years with an orthopedic medicine group and has an exhaustive knowledge of the interplay between the bones and muscles, making treatment comprehensive and effective. Katina is a physical therapist who can take you from couch to marathon, as both she and her almost 70-year old father have run marathons in the past few years; she trains people of all ages and abilities to run well and without injury. This family-run, woman-owned business is a comforting, encouraging place to heal, and Katina has been able to work wonders realigning my bones, neck to legs in the past few years. If your bones or muscles hurt, she's absolutely wonderful. Katina accepts some insurance with a referral. 301-770-1613.

I've seen at least five other physical therapists around the area in the past three years, in a quest to find one to relieve the pain AND take my insurance, but these are my absolute favorites and it's not fair to keep them to myself any longer. If you live outside the D.C. area, to find a lymphedema therapist, check out the National Lymphedema Network. If you need help affording lymphedema sleeves, gloves, and/or gauntlets, try the Marilyn Westbrook Garment Fund. If you think that insurance should cover these garments that cost $100-$1000 each that are necessary for breast cancer survivors and other edema suffers, please let your Congresspersons know that you support H.R. 4662, the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010, introduced February 23 by Congressman Larry Kissell (NC-8) and now cosponsored by Congressman Ron Paul (TX-14).
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KS1, you are brilliant! I totally forgot that brightlifedirect is based in DC and is staffed with fitters--a great resource!

http://www.brightlifedirect.com/

Scott Christine Juan Nancy

Meet our
certified fitters
877-545-8585
Mon - Fri
9 am to 6 pm, ET

Look for another Lymphedema Specialist even if you have to travel to another city.  It is essential that you have a connection with them and that they HELP YOU!

Mine is absolutely amazing and fantastic.  I have learned so much from her.  She makes me laugh, listens to my complaints, helps me find solutions, and says if I want to climb Mount Everest she will make sure my arm makes it (body may not but arm will).   Her massage techniques are wonderful and so helpful.  My Radiation Department also offers Lymphatic Massage by another wonderful therapist.   

Learning I had Lymphedema was upsetting.  But I have learned to read the signs, learned how to do self massage, exercises, etc. and go see therapist when I need her.  It has become a part of me and I don't stress over it since I've had all this help.

Hi Ericamary,

Yes, you should wash the garment before return it.  Just hand wash it and line dry it.

every insurance company is different, but if you switch therapists or need therapy in a few months, you may well  need to get a new rx from one of your docs, and your new therapist will have to re-request sessions.  That your insurance authorized 50 sessions is excellent ... never heard of anyone getting that many sessions approved.  If you have only gone to a few of the 50 sessions, I doubt your insurance company will give you grief when your therapist makes the request.

Another thing, once you get garments that work for you and are stable, if you are going to wear them every day, you probably want to get 2 sets.   If you only have 1 set, you are sunk if the garments don't dry overnight or get dirty mid-day.  You do NOT have to get the second set from the same person that you got the first set from.  Shop around for the best price. KS1 

Ericamary, compression garments aren't really comfortable at first--most people wear them for an hour or so, then take them off and see how their hand and arm are doing. They work up to wearing them more.

Compression class 1 is the lowest therapeutic compression, it's usually 20-30mm, and a standard place to start for arm swelling.

And, if things are in control, they may be able to wear them less.

I find compression garments tight, but not painful.

I do like the medi 95 material. The mediven glove is kind of bulky to me. Also the medi 95 has full compression in the fingers, while the mediven has half finger compression.

There are loads more things you could try--they never tried a juzo off the shelf on you. And there are other brands.

I like the medi 95 gloves, and measure kind of between a II or a III, and found the larger size felt more comfortable for me.

It's not uncommon for the elbow to be an area of discomfort or chafing in a sleeve--some custom sleeves come with an elbow bend sewn into them. Some people dust the area with cornstarch if it chafes.

I'd advise working up to wearing it more, and checking to see what the compression does to your arm and hand.

So, it sounds like you're getting some axillary swelling--not at all unusual. A swell spot is a good approach to it.

Here's some information on truncal swelling:

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

Boy, think how much you've learned--and not an education you ever wanted to have, but you're getting the tools to get this under control, so it takes the right place in your life.

Are you going to see the therapist back for the swell spots/night garment?

Kira

Erica and I have been PM'ing, but I wanted to post a suggestion I made to her as she tries to get some quality care and LE management, and that's to try the Lebed exercises.  For those who are LE newbies, the Lebeds are a series of slow tai chi-like movements, but done in a specific sequence to open lymphatic channels and encourage the movement of lymphatic movement.  The videos on the DVD will never win any prizes for production values, but the are clear and easy to follow.  I try to do the basic 15 minute opening sequence daily, and it really helps, especially with the truncal LE.  If I get lazy or distracted and don't do them for a week or so, I can really tell the difference.

(Erica - Vicki at Shady Grove had a bunch of the DVDs, so if you go back there, ask about them - they should be able to either give you one or sell it to you at a cheaper cost.)

This is the website for the Lebeds:  http://www.gohealthysteps.com/ There are a lot of DVDs and stuff - the one my LE therapist gave me is the one called "The Lebed Method Focus on Healing Through Therapeutic Exercise and Movement DVD".  I think someone posted some links to You Tube uploads showing the Lebeds as well - sneaking this in at work so I can't take the time to google it now.