Newbie w/Round 2 LE

garnet131

Hello and a big THANK YOU to all of you!  I discovered this forum 2 weeks ago and have learned so much as I come to grips with the thought of dealing with LE forever.  My BC was in 1995--L side tram flap reconstruction followed by chemo, and 5 yrs of Tamoxifin. Was told not to have BP or shots in L arm, but not told why or what could happen.  In 1998 while doing a hand sewing project, I stuck my fingers numerous times (never thought to use a thimble) and my hand/forearm swelled up. I realized what it was because I had read an article on LE in Readers Digest a few months earlier. Dug out article and went to family doctor, who told me it couldn't be LE since it was 3 years after my BC. Showed him the article and found Vodder trained therapists, which I thought took care of things. Dismissed from therapy with a custom sleeve and glove that I wore for about 6 months until they became totally ratty looking. Wasn't told I needed them forever, though I always watched my arm and every morning measured to make sure I could circle wrist with fingers of other hand.  I hung on to the sleeve and glove and wore them when flying (less than once a year) for a few years.  Moved 6 years ago with plenty of heavy lifting and no problem. Lost track of the sleeve/glove--think I threw them away when I moved. L forearm was always slightly larger than R but didn't fluctuate.  Was active over the years--I lifted 5-10lb weights, walked, exercised, tap danced, etc. (not to the extent of an athlete, but I was active).

This spring I lost 15 lbs (mostly loss of appetite due to concussion), which encouraged me to go for more weight loss so I upped my exercise level with new dvds and classes. Increased slowly, even starting with just 3 lb weights since I hadn't used them in a while. Worked up to 5. Then one Sunday in June I did 2 sections of a DVD together instead of half at a time, so around 55 min. Noticed that night that my wrist looked larger but didn't think too much of it. The next night went to first Ballet Barre exercise class, which turned out to be much more strenuous than I thought it would be, including push-ups at the bar (and on the floor...though I couldn't even do one of those).  Next day, arm was larger, tight and heavy, and I realized LE was back.

This was less than 1 week before scheduled vacation. I called and got appt for 2 weeks later when I'd be back.  Found that there are many more LE clinics now--Went with a new location of the same Vodder clinic I had last time so it was closer to home. 

What a difference in the therapy this time around--not so much in the hands-on aspect, but in the education as I learned about the lymph system and how exercising had caused the LE to flare up again.  Was dumbfounded to learn that I now have to "manage" it forever--in 1998 that was not emphasized or even stated.

Well this has gotten very long, so I'll end here as I need to e-mail Solaris since I found reference here that what I, the fitter and my therapist thought was an "underliner" is possibly an "over-garment!"  The whole glove/sleeve process has been a nightmare that I'll save to my next message.  THANK YOU AGAIN to everyone for the encouragement, support and education you've given me over the past 2 weeks.

Binney4

Garnett, it is so frustrating (not to mention damaging!) not to have the information we need to protect ourselves. I'm so sorry about this recent development.

But I do have to say that it's possible that in 1998 much of what we've been discussing here wasn't even known. The idea that Stage 0 lymphedema can be treated and kept from progressing (with garment use as needed)  is a recent research finding (last few years, in fact). And Solaris hasn't even been around all that long. Many lymphology researchers are calling this decade "A Renaissance in Lymphedema Research." Partly because there have been so many new discoveries about the lymph system and new developments in management of lymphedema, and partly because prior to this decade throughout all the past millenia the lymph system remained pretty much invisible. Any discoveries that were made were relegated to obscure archives that nobody looked at anyway. Now there's a new eagerness to understand how it all works together with the rest of our immune system.

'Bout time!!

"Forever" is just too big to get our heads around, yes? So glad you're managing it all so well one day at a time!

Thanks for sharing so much about your journey. Gentle hugs,
Binney

garnet131

Binney,

Yes, it is one day at a time, isn't it? And some days are better than others...

I called Solaris today since they are in my local area and it was confirmed that the second sleeve is to be worn over the Tribute as an overwrap that adds an additional 10 __(whatever the unit of measure is) of compression.  Was told I was the second local person contacting them with this question so they are going to contact the fitting company to clarify it with them.

That company is the main local supplier of DME, but I know that I will NEVER go back there.  Their level of service was awful and compassion was non-existent. 

You're certainly correct when you say things have changed since 1998 and it's definitely for the better with more information out there.  Thanks, Binney, for your part in that.  

Garnet