GRRRRRRRRR I HATE LE..........

binney and 3jays-  Thanks for the tips about wetting my sleeve.  Fortunately I will be spending most of the summer in a cooler climate.  I can't imagine wearing this in hot, humid weather.  Nice to know swimming sort of provides a natural all over compression.  I'll be doing lots of that too!

Cookie, hear you on the bugs.  DH listens to me complain about that all the time "how do they know, how do they know which is my LE arm, is there a target on me?  Boom, every single cottin pickin time, they pick that arm!"  I'm always leery of bug spray on the garment.  I have had a bit of luck  with those OFF hand held things with the little motor in them that you keep putting fresh bug pads into.  The one where the man and woman are out on the deck in the commercial where the big horde of mosquitos descends on them and they look like they're in an imaginary plastic bubble?  The only problem is they really only work if you are sitting still in one place, otherwise you keep spraying the air behind you where you used to be. 

I gotta say, my DH has been absolutely wonderful about this whole LE thing.  Of course, it's only two years into it, so perhaps as the years go on, he won't be that way.  Just tune it out.  BUT, for now, he has taken on a lot of things I used to do.  He's also always glancing or yellling when he things I'm lifting too much or doing too much.  He worries when my happy face gives way to one of dispair.  He hasn't once complained about all the money I spend on all the STUFF.  We are both retired, so we acknowledge that having the time for LE may influence our/his attitude.  Also, he had to have an eye removed about seven years ago, which gives him a different perspective on life altering changes.  He wraps me as well as my LE therapist does, using that fancy herringbone pattern and he's so careful about getting just the right amount of compression in the right places.  Here's to our wonderful DHs and all they have to learn to deal with along with us!

I got some oreos at the store last night.  I like oreos.

Kitty Dog:  The heat and humidity, spiders and mosquitoes are horrid for people who enjoy being outdoors in the summer.  I think it's the worst part for me.  Last year in the fall, we had the World Equestrian Games here in KY.  I was DETERMINED to volunteer every single day even if they had to carry me out on a stretcher.  A couple weeks before it started, I asked my LE doc to prescribe some time with my therapist which she did.  I went 4 days and I swear every drop of excess fluid was gone by the time the Games rolled around.  So maybe some additional therapy time would help you.  At the Games is where I discovered the Cool Medic vest which I had talked about earlier.  Dip in water for 10 seconds, roll it up in a towel to remove the excess and wear it for up to 10 hours to be cool and comfie.  Expensive but worth it.  Bless you.

I really think my BC arm is a little swollen.  When I was evaluated by the PT she said the measurements were the same.  Maybe the warm weather is affecting it?  I can see tendons on my good wrist, but not on my BC wrist.  More wrinkles on my good wrist when I bend than on the BC wrist. Of course I am flying Thursday and don't think I can see a therapist before I leave.  Should I try to learn how to do the manual drainage self massage?  I have a sleeve and will put it on in the morning.  I think I will try to elevate my arm tonight.  Does that make sense?  Any advice from you veterans?

How do you do MLD? I am starting to get some cording again since starting rads, no swelling though. I am going to tell doc tomorrow.

I emailed the PT and miraculously she responded.  She said that it "doesn't sound like anything to be alarmed about". She said she would call me by phone and talk to me later.  It doesn't sound like I am going to get an appointment or instruction in MLD.  I know it is ideal to have someone show us how the technique is done.  Aren't there any free videos that give instruction that would be better than nothing?  Can more damage be caused if it is not done perfectly?  Or should I just put on the sleeve, drink fluids, elevate and hope for the best?

Another question.  As I have never worn the sleeve.  Any advice on when to put it on?  Are our arms smallest first thing in the morning after being prone all night? Should we wait a while after bathing to put it on?

I am so grateful that I at least have BCO and this thread and SU-SO.  I would be totally ignorant and flying blind otherwise.  NONE of my bzillions of medical people have said anything about LE.

One other question.  Has anyone tried acupuncture for LE? 

DesignerMom, I totally agree with Omaz, I use the wrist tendons to check how I'm doing. I'll attach an article by AW Stanton on that subject.

Do you have a gauntlet, because you should protect the hand with a sleeve:

http://lymphedivas.com/lymphedema/gauntletandsleeve/

Don't let the PT blow you off as far as significance of this. Re: wearing the sleeve and gauntlet--start today for a few hours and see how you do. If all is well, put it on at the gate and wear for a few hours after you land. Poorly fitting compression does potential harm--you need to be sure this agrees with you. And, unfortunately, MLD is not a "do it yourself" technique--you need instruction in how hard to press and how fast to move (lightly and very, very slowly)

For your PT who thinks "this is probably nothing:--I disagree, IMO

Http://britishjournaloflymphoedema.com/journal/0101_arm.pdf

http://britishjournaloflymphoedema.com/journal/0101_arm.pdf

Key Points

  -Mild breast cancer-related
lymphoedema of the arm (BCRL)
can be difficult to detect.

  -Signs to look for when diagnosing
lymphoedema include decreased
visibility of veins; smoothing of
contours in the medial elbow
region; increased skin and subcutis
thickness on palpation, and pitting
oedema. The oedema can be
limited to certain regions, e.g. hand
and wrist only, or upper arm.

  -Measurement of arm volume is of
little value in diagnosing early, mild
BCRL, and reliance on comparison
of arm volumes or circumferences
will cause an underestimation of
the prevalence of BCRL.

- Accurate detection and reporting
of BCRL are essential to enable
prioritisation of healthcare
resources in the form of dedicated
lymphoedema clinics.

AW Stanton is a leader in lymphedema research, and your PT should know this stuff, but so many are hung up on the "gold standard"--no science behind it, of 2 cm of swelling =lymphedema. Garbage: LE is based on symptoms and subtle swelling as well as the larger swelling, and the key is to catch it early.

Kira

I am posting for a couple of the women on the post rads thread that are having breast swelling - how would they know if it was LE of the breast?

I'm more than a bit discouraged.  The hand flare that I have been experiencing for the past month has definitely subsided somewhat, but my hand is noticeably more swollen than it was.  The LE specialist I saw last week basically told me that it isn't that bad, that LE is a chronic, progressive disorder and that no matter what I do, it will get worse, and that this is my new baseline.    (According to her, wrapping won't help.)  She said I had to "let go" and just accept that I am going to swell more and more no matter what I do.  She also said that compression may even be making my LE worse.  I have spent a crap load of time, energy, and money trying to keep my LE under control.  

I saw her briefly today when I picked up a new glove (to fit my new, bigger hand), she repeated her "it's going to get worse" line. I said, what's the point: I've been compliant -- I've given up many of the foods I love, I don't swim, use an eliptical trainer or run.  I've wasted inordinate amounts of time doing MLD even though In 2 years, I have never seen any sign that it does anything. And now, according to her wearing, wearing compression garments may be worse than nothing.   therapeutic nihilism.  I'm there.  KS1 

KS, I'm joining the chant: new therapist, new therapist, new therapist.

Leah

KS1- I am still horrified. What state are you in? maybe we can help find someone for you.