Trunk LE- Suggestions? What works for you?

" ....a maxi pad in a sports bra sounds like a really bad idea to me--too much possibility of cutting off lymph flow with the uneven pressure. You don't want to crush the lymph vessels ..."

THX Binney.

Yeah, it sounded like a stupid idea to me too. Pretty much what I did in the first place with an ice pack I owe that BS  $2400.00 .  Why they hell did I have an NP call me ????!

It IS  a good idea to wear a sports bra though, right ?  I have no worn a bra in 5 mos.  PLS tell me.

THX

Hey Purple,

You are only 4 months post-op, and its more likely still healing.



But do not discount the possibility of swelling due to lymph damage. If l were where u are, i would ask for an evaluation by a lymphedema specialist, even if to get a baseline measurement. I bypassed my BC team, called the physical therapy/rehab dept to make sure an LE trained person was there and then asked my pcp's nurse. She didnt hesitate and l was in, in less than a week.



Good luck and keep moving.

Connie

Purple, MA is particularly rich in LE therapists. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Hugs,
Binney

Have one of these on order.  Here's hoping. 

It's a Bolero Breathable Short Compression Vest/Bra With Short Sleeves.  Anybody have any expirience with them?

Wow Cindy...I thought I saw everything but somehow i missed that one.

Please let us know how it works for you....

Im still good with the bras i bought in NY&Co.....24/7 but im good.

Good luck with it.

hugggggggs K

About hydration, No, i didnt know that either, but im a pretty regular water drinker already. And replace electrolytes if i work outside.

Im wondering if its been swollen ever since surgery in 2007. I have notes that say i was concerned about the breast back then. In 09, My BS tapped her chin and said, you might have a touch of lymphedema in there. Thats all. Nothing.

Then i was swimming and doing better than i am now. Also, in 2010, flew to Tucson from Fla and back. My notes say that breast was tight feeling for weeks after we got home.

AND every mammo has been a swelling event, and even that team is doing damage.

I dont want to know, not right now anyway. Thats too much info.



Im not managing very well right now.

Dejaboo

I am so sorry for your pain.  At this time, pain has not been an issue for me (yet ?)  At least not with LE.

I do have some other chronic conditions, and I will tell you,  it is difficult to  have an " invisible problem" - dont get much compassion and you begin to feel like a whiner (NOT!)

Stick with us ladies, a *new* LE therpaist and possibly a cancer support group if looking for compassion.  I am sorry to say your friends  just might not ' get it "

gentle((((HUGS))))

"Design Veronique short sleeve bolero

www.lymphedemaproducts.com/pro...

Pros: 1) The bolero comes in a large range of sizes, with 3 rows of eyes/hooks in the front and 3 rows of eyes/hooks in the back, so chest/bust wise, most people would probably be able to find a size that fits. 2) The garment is made of nylon/spandex, but felty cotton material lines the sides of the garment (5" wide panel), the rows of eyes/hooks and the wide elastic band at the bottom. 3) There is space for breasts, and on me, there isn't gapping at the breast bone or flattening.

Cons: 1) According to the chart, bicep-wise, I should have ordered an extra small, but I ordered a small instead because that is what my chest needed. Nonetheless, the biceps are quite tight on me, and would cause double compression when worn with a sleeve. Strangely, the upper arm isn't that tight, so I plan on cutting the arms to just overlap with my sleeve. 2) There are 16 small hooks/eyes on the front, and 19 hooks/eyes on the back. Anyone with hand issues is likely to have a hard time doing them, as is anyone who is wearing a compression glove. I found it impossible to do the hooks/eyes with my hand wrapped, and my husband had difficulty doing it. 3) Contrary to the description, the axilla isn't lined in cotton, and there are (flat) seams where the arm meets the body of the garment."

Since writing that, I have used it a few times in various ways. Rather than cut the fabric of the arm, I merely took the seam out to the point that the bolero sleeve overlaps by an inch or so with the top of my day garment sleeve. My trunk LE is mild, but I find that the bolero doesn't seem to provide enough compression where I need it (side/axilla/back) when I wear it by itself. I tried putting the Solaris swell spots that I own (dorsal pad, ax pad) in the bolero, but they don't cover enough of the right territory and are a bit too thick.

After several days of being increasingly sore (probably because of a long flight), I wore the bolero over a (huge) Jovipak Axilla Pad (P-AX). I'm not sure why, but when I first put it on, I felt a bit naseous (tight corset syndrome?). It made my side feel better, but shoving the arm portion of the P-AX into the bolero made the upper arm of the bolero too tight and after about 8 hours I took it off and my arm was a bit swollen and I haven't tried the combo since.

That said, the one day of bolero/P-AX combo seems to have done my side some good and, since then I have just been wearing the Jovipak P-AX under compression T-shirts, and my side is behaving. If I have another bad trunk day, I think I will try using a big honking piece of Komprex 2 under the bolero

Sorry for the length, but I hope this helps! KS1

Thank Goodness l got a trained LE therapist. She answers, as far as l can tell, honestly about everything l have asked.



I havent asked... How the hell do l wiggle into these things? Seems that struggling into it ought to count for calories used. Im not a little girl. And I've been a D cup (or larger since 9th grade). I tried to try on an "Assets" at target just for a cami, and if l had been in a good mood it probably would have been really funny. But l was not and it was insulting. And yes they have it online in the largest size they carry. Aaaarrrrrggghh.

Today l went to my psycho therapist, she said go for a quality garment or you will have wasted whatever you spend because it will be uncomfortable and you won't wear it. She is so right about that. Shes the only medical professional who has been with me consistently since all this started.

I should respond to the subject of the OP.

THIS is what helps me a bit :

http://www.youtube.com/watch?v=8SnayHG-AaQ

Diana, TAKE SOMEONE WITH YOU. I woulda shoulda but didnt, regret. DH would be the obvious choice and the most likely not to go, but when they see what it does & how to do it, not only can they help you out like, do your back, but they can show someone else how to help you.



I've decided, made an appointment with a shop where ive been fitted before, for Tuesday.



One day at a time.

~C

Coolp[acks ?!
Wow, Binney.  Intriguing!

please keep us informed and thank you!

I have  a question RE:  LE therapist.

I made my appt ., but when I called , I asked for the LANA cert therapist.  The appt. time was not a time I could that come in , and it is ALWAYS in the morning ( not good for my job) . I spoke at length to the other therpaist and she assured me that she was older and had many more yrs exp. but just decided not to take the LANA test.  I am not really concerned since I am FINALLY getting someobody to look at my breast !  Should I be ?!

ALSO....do any of you with breast LE get MRIs instead of mammos ?  THAT I am concerned about.

Many thanks for any replies.