GRRRRRRRRR I HATE LE..........
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Kira: and everyone..glad yiou're alright after the storm... am having a flare from being so non energetic these days. hope my thyroid straightens out soon. am gaining weight, also as an added effect...grrrr......3jays
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I FINALLY have an appt with the LE therapist!!! Sept 17th! Seems so far away. I have a call in to her to see what else I can do at home to easy the pain, tingles etc till I see her.
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Wanted to post some potentially great news. I've been on the "watchful waiting" merry go round for the last year because of an axillary mass. Then, this summer I have been having a lot of tests because of worsening LE, brachial plexus neuropathy and upper back pain. Brachial plexus MRI was flagged as abnormal, so off to PET/CT land. Going in, best case scenario was worsening fibrosis making LE/BPN worse. Not a great day when you are hoping for RIBP. But ,yesterday right right before my PET/CT, I saw my physiatrist who looked at the MRI again in light of my new back pain. Even though the scan was not designed to look at the spine, he says he can see 2 honking cervical herniations that he says are almost certainly what is causing the worsening/new neurological symptoms. How our standards of normal have changed when you give your doc a high five when he tells you you have multiple cervical herniations! Won't know the results of the pet/CT or a few days, but for now I am on cloud 9!
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Hi Everyone
I hope you all are still brownie festing!
I am still back on page 44....( need to jump ahead to talk to you about this....)
This was my first real summer post BMX 6/10. I was diagnosed with truncal LE this summer. Manifests as chest tightness... feels like I have rocks in my chest. Armpit fullness akin to baseballs in them... and fluid below on my ribs into my back that hurts alot.
Its going like this....every time I do anything above light house work.....like vacuuming, washing a floor, carrying groceries....driving a tractor mower... I end up with all the above for days. I have just given up working on washing my mustang/ sanding and staining the deck.
Been strectching/ light weights.... and wearing the underarmour inside our/ trying to drink extra water.
Holding my new baby great nephews, and my microbead bra's makes it worse.....AAARRRGGGAAAAAAHHH, and GGGGRRRRRrrrrrrrrrr
Put a call into LEPT... for a re-eval. I am thinking i need to learn MLD?
Any advice....
PS. You guys have help me survive thru all this ka ka!
love!
brazos
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Becky, about that weight loss, Congratulations, splendid and Jolly Good Show!
Kira, Ducky, great to hear from you both and hope the damage gets sorted out soon
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I'm just a newbie, but I know that a slimmer (by wearease) really helps my truncal LE. And it makes me look skinnier!
A question - I was discharged by my LE therapist on a good day. The days since have not been so good. What should I look for to know if/when I should ask for another appointment? Insurance is not an issue, since we don't have any.
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Thank you JO! I was actually doing this today and hit 64 oz H2O.... wore my under armour, strectched, and do lite triceps weights...watched my salt. Talked to my LE/PT and am on the wait list to be seen. I need to learn MLD... not sure what all is involved. the sides of my ribs are very sore....grrrr. That is a new thing over the past month.
Hey Snorfia... Welcome!... I just had been discharged from LE/ PT this spring. I just called them today and asked for an appt for a re-evaluate and treat.... had to just get my surgeon to fax the script to the PT dept... If you can reach your therapist that is familiar with you in the past, you can always call them and run your sitch by and see what they advise. And as always follow your gutt if you feel something is wrong. ( Did they teach you about lymphedema? signs symptoms? measurements of your arms?...)
Blessing to all of you.
Gnite
brazos
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Well im back.i just pm Binney but i see she is not on today and maybe one of the sistas can help.here is my story
i HAD mild edema..went to pt and got discharged.told it was gone.ok.now i have to wear a compression bra.ok.i did..then graduated to a sports bra which was fine.was told to watch my salt and i am.doin my reg.stretches and all is well (so i thought)
i scheduled my first mammo for tomorrow.yesterday i started to feel stinging pains where i had 6 nodes removed last sept.if anyone touches that area it always hurts but not like this.what do i do???
go for my mammo?call the dr?I put on the compression bra it hurts,every bra hurts under my arm and i dont know how to treat it.can someone give me a little direction here please.im a wreck...thanks.hugggggggggs K
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Im sorry to hear your pain. I dont sleep on my right side and I dont lift with my right arm. Im right handed so It's hard not being able to use that arm but if I can cause it not to swell or throb with pain I do everything with my left arm. My vien now sticks out badly under my arm pit. I was told by a vascular nurse the doctor should of put it back in place so that it didnt do that. Im done with more surgies so now I deal and try and live in a positive attitude.
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I too try to do everything the way im supposed to do.im left handed and im sooo careful of that hand/arm because im tryin to prevent LE...I wear long sleeves all summer long and i dont go out much because im sooo afraid that i will get bit inside the shirt.I am soo scared that i will get the LE but now this stinging pain and the swollen boob is drivin me nuts.Im doin the ice on and off.i hope its the right thing to do.0
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Believe, that "vein" under your arm , sure sounds like cording--which is lymphatics, and responds to physical therapy--have you had any LE therapy? Because the goal is to get you using the arm, with the tools you need to prevent swelling and pain.
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Granny: you know that Binney and I have always thought that the "edema" is lymphedema, and truncal lymphedema can be painful. The best way to manage the pain is manual lymphatic drainage and compression. Also, you can try some ibuprofen/aleve tonight.
In my book, a swollen breast=lymphedema of the breast.
Here's our page on breast/truncal LE
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Check out the article at the bottom of the page, and see if the pictures look familar.
Lymphedema is edema, but it is edema caused by back up of lymphatic fluid. Other kinds of edema can be in reaction to trauma or systemic medical conditions. Even Wikepedia lists lymphedema as a type of edema:
http://en.wikipedia.org/wiki/Edema
In lymphedema abnormal removal of interstitial fluid is caused by failure of the lymphatic system.
The bottom line is not what you call it, but that you get the treatment you need. But lymphedema is edema.
Kira
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thanks Kira---sooo do i not go for my first mammo?do i put back the compression bra on???? it hurts like hell.im wearing the genie bra.thats the only thing that dont hurt.do i put ice???
those damn drs and the PT swear that edema is not LE....they said you are soo lucky its not LE and it will go away...MY LANA PT released me months ago saying im fine...the only thing i can put this down to is a huge amount of stress this past week.can that do it??? I do have it elevated and im doing nothing!!!!!
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Grannydukes, I sent you a PM. Since the sports bra was helping for so long, use that, but not ANYTHING that hurts -- pain draws more lymph fluid to the area. Ice needs to be used for very short times -- no more than 10 minutes at a time -- and padded a bit so it's not directly cold on your skin.
And yes, stress makes my LE much worse, and other women here experience the same thing.
I'd get a "second opinion" from another therapist. You're simply not having your reality addressed properly. Look on the StepUp-SpeakOut site for therapists and make a lot of noise until you get in to see them.
Hugs, prayers,
Binney0 -
the only thing that does not hurt is the genie bra..would you believe that one?
I really had a lot of stress last week where i was screaming my head off...sooo i guess that did bring it on...who knew that one...not me.
i guess ill cancel my mammo for tomorrow...this pain is enuf.
And i guess i need a new therapist.She released me back in May and said the EDEMA is not LE and im fine..and i really WAS.
Again thanks both of you...Where would we be without you?????
hugggggggggggs K
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I'm puzzled how they can say categorically that oedema is not lymphoedema, particularly in someone who has had breast /axillary surgery and is therefore at risk for LE. I know there are other medical causes for oedema eg cardiac insufficiency, pelvic/thoracic obstruction, damage/obstruction at nodes, or low protein levels, but unless you have an obvious other cause which they can point to, and hopefully treat, how can they say it's not LE? And how do they expect it to get better if they aren't treating it, which of the other causes will spontaneously cure itself?
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Sorry Granddukes but it sounds so much like LE. Truncal LE does hurt. I am hurting tonight. The only thing I did different was wear my sports mastectomy bra and weight foam foob today for much longer than I normally do. My chest hurts right wear the darn foob sits and slides back in forth all day long. I so want a real foob but if the light weighted foam one makes me hurt what is the silicone one going to do. grrrrrrrr Hoping that I am at least this swollen next Thursday when I see the oncologist. I am just not able to get it off my back and chest. The pain roller helped but it swells right back up during the day. I guess that is from sitting in a 100 degree car waiting on a child to get out of school does. Then the hot flashes this week that have cause me to give up on the tribute about four hours after going to sleep.
pass the lindor truffles..........yum. Thanks to my radiation buddy for giving me a bag of them Sat.
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Kira...interesting. Doctor Francis said she felt by breast problem was edema, but not lyphedema. I just think nobody quite knows.
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Kitty Dog..here's a little trick i use; when even the "lite" foobs hurt. i went to the dollar store, and got two of the "scrubbie" things you shower with, and i put a shoulder pad over the front of them. used hollywood tape to keep the pads on the shower thingies, and taped them into my bra, so they wouldn't move around.. ta da!!! cheaper, easier, AND it works in a bathing suit. you just "wring it ou" when you get out, right onto your pillow. i wear them in a cami, all the time.. and i love it. hope that'll help.
as far as the truncal LE: my therapist had me wrap; much like my hand/arm..round and round the site. my big belly is a challenge, but it works. when i go out, i have a slimmer. takes care of the belly (somewhat) and, it doesn't hurt the truncal, either..........be well all of you........3jays
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Granny-I have slight swelling in my breast and down my side and my therapist says it is LE. It so sounds like you do too. Especially because the MLD helps it is what makes me agree. She also kineseo tapes me and I wear a compression tank. It takes care of the swelling most of the time and the pain I have had seems to be abating some. I had my first mammo last month and it set it off again. The heat does not help. I am so waiting for cooler weather. Becky0
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Cookie, Not to argue with an expert like Kathleen Francis, but I still think a swollen breast, other than the immediate post op period, is lymphedema, which technically is edema, just due to lymph fluid.
I did watch her on-line lectures from Klose, and I think she addressed all forms of other edema in the extremities--like venous insufficiency, but I don't remember much on breast/truncal LE. It was when I was laid up with the broken hand.
I just don't want women not to get treatment due to semantics.
Kira
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Hi again...
I am reading in here.... and Grrrr for all of us. I just talked to my LE/PT and she tells me that truncal LE does not hurt??? I feel like I have a chest tube thru my ribs and the skin is super tender.
I have nodules? on my cording.... its the cording that they could not get rid of at the base of my armpit....heading to my inciscions on both sides. Have any of you ever had round, firm thangs less than .5mm pop up on your cords? or in scar tissue? ( Or is there another place to post this Q)
Have a NO SWELL DAY LADIES
Hugs
brazos
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Brazos, Truncal LE is probably the most painful form of LE. The NLN published a letter about LE and pain.
http://www.lymphnet.org/pdfDocs/NLN_Washington_Post_Reply.pdf
I've had a lot of cording, but don't remember nodules on the cords, but it wouldn't surprise me. When I first started wearing compression and wrapping, I got some nodules on pressure points on my hand, and they went away.
Kira
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I have them all through my incision area and where I had radiation. Dr. says mine is scar tissue that has broken up. It scares the pee turkey out of me each time I find them. I do find that I feel them more when I am swollen. Go see your Dr. to confirm what it is. I never had cording.
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im back...last nite i did the massage and slept with a pillow under my arm and legs as I was told.I also wore my genie bra.This morning i cancelled my mammo and called my PT only because i was desperate.she was booked.see ya.so i called the BS.the nurse asked me a lot of questions and told me she was in surgery today but will get me in tomorrow.The PT also told the girl who i spoke with to tell me to put on the compression bra.so i tried it on and yes its ok.ill wear it for the daytime .how am i doin so far?
My RO was the only one of all my drs who even admitted there was anything wrong with my breast.no one even thought it was not normal.even the pain.He said EDEMA.and he said there was a difference.sooo many opinions...WHAT THE HELL DO I HAVE???
Ill tell you another thing.im small.weigh 114lbs.normal wt is 130.always had a stomach but not when i weigh 114lbs.now ya got me thinking.i saw my gastro dr.and told him and he just wrote it in my chart as i do have lots of stomach issues.
DO I HAVE IT IN MY STOMACH TOO????
Im tryin not to stress and i was doin a good job till now...i do feel 90% better.so fast?
my GOD all these questions.....i fell like i just took 10 steps back!!!!
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Brazos, I will second Kira and know from experience that truncal freakin' lymphedema hurts!
Kira, I thought I remember a paper on cording where a nodule was found, and because the onc was concerned about a recurrence the nodule was removed. It wasn't anything, but it did have something to do with the cording. Goodness knows where I read that . .0 -
Well, there are nodes all along the lymphatics that seize/freeze up to form the cords, aren't there, further down your arm? Could it be that?
I was doing really well with my shoulder mobilising, then a few weeks ago I got new bout of cording on the upper inner arm, guess I must have over stretched something in the shoulder or finally pinged one that I didn't even know about. Fortunately that seems to be clearing up now... just in time to drag a huge case through the airways of europe
Mmm, definitely Lindor truffles.
If we are going to put on that much weight, we may as well enjoy it!0 -
Tina, I think I posted that paper, I think I got it from Jodi Winicour. Boy, I'd have to search for it. It was a nodule on a cord, so they biopsied the cord and determined it was thrombosed lymphatics.
Hymil: the cords are deep lymphatic collectors, and I don't think they are loaded with nodes.
Tina, I bumped the thread I think we were thinking about. It was path on Mondors and AWS.
Kira
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Hi Ladies
Thank you all for your input. This is sore buziness, and slowing me down around the yard and house.
I am 15 months s/p BMX.... these cords have been here since the get go, LE/PT could not do anything more with them.... they feel thicker and wider, i have more running thru my pecs, another wierd thing...
May I request vanilla chocolate chips with choc icing for brownies under the bed? I feel like hiding. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.
hugs
brazos
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OMGOSH........ it seems " doctors or PT" have NO idea about LE... it is just INSANE!
YES TRUNKAL LE hurts like a MO! WOW.... it ached me worse than the arm... felt like I had this balloon all in back... and it made the skin sore... I felt like I had a tight bra on.... I wanted to POP the balloon....sooooo bad! I was so glad to have a PT know what she was doing with the massage.
Hang in there.... maybe someday.... they will be educated wide spread!
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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Well, my lymphedema has hurt everywhere I've had it. Every place I have developed it, the very first thing was inexplicable pain. This was not a feeling a heaviness, it was pain, as if I had torn a muscle, but in my skin. Then after a little while of that, there was some visible swelling, The pain goes away with treating the lymphedema.
I'm very thankful for the advice on this board. I'm doing well with my lymphedema, think I've figured out some good systems for myself. Trying to keep wrapping once a week so I stay good at it, but it's hard when the rest of everything is so much more convenient.
I really wonder about the cord data. The little ones in my arm did disappear with time and treatment, although my OT said she can still feel them if she tries. They seemed to all come together into one honking big thick one that runs down my axila, which became really prominent early during radiatino. I can't imagine something that size ever just disappearing. Swimming has done wonders to loosen it up.
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