GRRRRRRRRR I HATE LE..........
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Trishia, it wouldn't surprise me if the hyst had something to do with it in your case. I suspect the ooph I had mid-Nov did in mine.
Before the surgery I'd been having slightly less ROM in my arm, nothing overwhelming. Not long after the surgery I started to have swelling in my upper arm. It wasn't used for bp or IV's during surgery - they were very good about that - so I suspect the trauma of the surgery itself triggered something. I had my second session today with the LE therapist and she said she saw swelling in my back, also. Fortunately I have no pain or problem with my bra from it but I'll have to learn to control it so that won't happen. She's going to wrap me next time. Sigh.
Leah
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Well I went back to the clinic for my follow up. I really thought I was doing great with my MLD but the measurements did not say so. I was up in everything but my elbow. So she wrapped me and ask that I stay in it as long as I could stand it to day.
I called the idiot who has been doing my fittings for my sleeve. I told him I did not want a size 4 sleeve because it was to tight. His reply...The largest size it comes in is a 5 let's see if you can get your arm back down so you can wear the size 4. Call me when it comes down. Ummmm no I will not call you because you don't know what you are doing. I just ordered a size 6 sleeve from pink bra.com. I can't wait to get it to see if it fits any better. If not I will go some where else and see about the custom.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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KittyDog, so sorry you're having such a problem getting a proper fitting sleeve. But I'm thinking that a larger size sleeve might make it seem to fit properly/comfortably on your upper arm, but it would probably be too large for your wrist and lower arm. Can you possibly get measured for a custom sleeve so that it's made exactly to fit your entire arm?0
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Kitty, I agree with Sher--what part of custom doesn't this fitter get???
You need a custom sleeve so it fits your arm well and maintains the size. Period.
None of this poor fit with the off the shelf stuff.
Time for a new fitter?
Kira
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Trishia - My hysterectomy/oophorectomy did contribute to my truncal LE. My back, under my shoulder blade looked like it had a pocket of fluid. My gynecologic surgeon confirmed that it contributed to it. My PT agreed.
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Rocket! That's exactly where I am getting new swelling. ACK! Thank you for sharing.
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Trishia, my PT got me a vest that I wear to bed with the velcro on the shoulders and down the front. I wear it every night with a swell pad underneath on the side where I swell and it helps tremendously. Weather, as in stormy, also makes me swell much worse than on sunny, dry days.
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Hi girls-haven't been here in ages. I hope everyone is doing well.
Turns out I don't have lymphedema but DVT. So I have spent the best part of 4 months being misdiagnosed with that and my cancer diagnosis too. I have spent the last week in hospital and have to go back soon because they can't get my pain under contol.
I didn't even know DVT was a possiblilty so I didnt know what to look out for-thanks docs! Now I have to have twice daily injections for perhaps the rest of my life.....to say I am feeling GRRRRRRR is an understatement!!!!
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Ladies...
I wanted to post this for anyone reading... newer to LE
I was being driven INSANE with LE.... this is what I did to get it under control.
If I did not know any better..... ( But I DO KNOW BETTER) I would think my LE is gone... ( yeah right)... but it is gone.... or under control for now.
This is what changed it for me.
5 weeks of LE PT....
Wrapped for the 5 weeks as I was taught.
Wear compression when I fly ( A LOT OF FLYING FOR ME)
Compression when grandkids are with me ( 30 hrs a week).. as I lift them all the time ...
Compression when doing ANYTHING strenuous with that arm or side of body
if I get a scratch..cut on that arm NO BRA. I STOPPED wearing bra unless I wanna take the " girls" out on the town in a great outfit.
I lost weight... and am still loosing.
Do cardio 5 days a week.... strength training 2 days a week. ( I will totally lay off LE arm)
This worked for me.
Bless you in your journey.
PS.... I think dumping a bra fixed me by 50%... NO JOKE!
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Laura--that's great! There was a thread about ditching bra's and that was the concensus.
Lately, because it's solid ice here, I've been riding the exercise bike a lot--and it really makes a difference--
(I watch HGTV, and I've seen so many homes staged, I'm ready to stage mine....)
You took and got control of your LE, and that is AWESOME!
And, you started this great thread.
Hugs and congratulations.
Kira
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YAY!!! It's nice to read a good post!!!
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just letting you guys know im here.. sorry you're having so much trouble, trishia.. i gave up caffeine, but not the coffee yet. down to decaf; and a big girl cup when i can get to Dunkin Donuts for a treat.. my le is acting up, too. can't attribute it to anything specific. the weather affects it, so thank goodness, im in Fla.. im getting the under armpit weird feeling, and my hands are going a little crazy. actually, i forgot i cleaned the carpets last wk.. thats' probably it duhh!!! i do find if i eat salt much now, i swell. so, i don't eat salt much...hope you get the custom sleeve you need soon! fitters are such a pain, till you find the right one. im gonna have to soon. i need new sleeves. i have only the heavy duty, criss cross ones from gottfreid, and need ones for every day.. well, i'll ck in again, sooner, this time. night0
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Laura, I just love good news!
Sooooo happy for a breather for you -- it's been a haul!3jays and Trishia, hang in there!
Hugs all around,
Binney0 -
Estepp- Great tips but drop the bra? Now I'm confused. I totally get the compression, exercise, weight loss etc. but the moment I tried wearing a regular bra and not a compression bra I ached terribly within hours. I haven't been following the forum for too long and don't know if you have arm LE, truncal LE or both. I have both and boy would I love to ditch this bra! GRRRRRRR...not going to happen soon enough, if ever, for me.
Question on cording - after a flare up in early January and weekly LE PT appointments how long should I expect this to cause me grief? I keep forgetting to ask my PT. I also developed tendinitis of the elbow...so now its compression and gauntlet for a while with my arm too. I'm flying in a few weeks and it makes me a little nervous. Any other tips?
Re: acupuncture & LE - so far I have a huge improvement in my truncal LE and I can tell it's really helped my cording. This is based on my before, during and post flare up.
Thanks for all the input ladies. I lurk often but don't post much. Who ever posted about Lymphadiva...thank you. I just got my new sleeve and gauntlet, they are pretty spendy but if I'm going to have to deal with this at least I can make it fun.
Betsy
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Betsy buzz.. thanks for posting. been considering acupuncture for my truncal LE and neuropathy. since you had good results, im gonna try it. 3jays0
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Sometimes, I feel like the header for this topic captures my life. Yesterday AM when I took off my Solaris, there was a tiny little red spot. I figured it was just a random place where a bit of foam put a bit more pressure. Three hours later, it hadn't disappeared. Careful inspection reveals an ingrown hair. By evening, what was a tiny dot was an angry 1 cm red splotch in the middle of a raised bump that my husband could see from across the room. I debated for a couple of hours whether to take antibiotics - "it's only an ingrown hair", I tell my husband. I don't WANT to be someone who takes antibiotics for AN INGROWN HAIR!! I decided that caution was the better part of valor and started antibiotics . (Kira - I went with the 500 mg QID dose with a 1000 mg bolus.) It hasn't been a day, so the antibiotics will probably kick in soon, but the damn thing is getting bigger. All this from a simple ingrown hair?? I hate despise detest loath spit on LE. ... KS1
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Sorry Jo and KS1. (((((HUGS)))))
GRRRRRRRRRRRR The sleeve I ordered is on back order from the company with no ship date. So today I made an appointment with one of the other places in our area. I am just going to down right tell her I want a coustom sleeve. My appointment is March 17. Arm is still swollen but my hand looks better. I am just wearing my night sleeve for now. Even then I end up pulling it off about 5 or 6 am due to hot flashes. Oh well at least I am getting some compression in.
On a happier not. I got a normal mammogram today!
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KS1
I don't think anything is simple about LE. Anyway, it sounds like a call to your Dr is in order especially since it is getting bigger. Always good to err on the side of caution. Do you have any red streaks on your arm or fever? If so you should call asap. Hope it gets better quickly.
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Yes Jo, some days I can wear my sleeve all day. Other days by supper I can't wait to rip the thing off. I've learned that if it's not feeling good no matter how short a time it's been on, get it off.
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Jo-5
Yes, some days I can wear it all day and it doesn't bother me at all but others I can barely stand it for 6 hours. Oh well. Yesterday I played Wii bowling with my son and my LE increased. Ugh.
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What is DVT and can someone explain truncal LE? I haven't been to this forum for along time. Mine is sort of a long story, beginning in June 2010 with my first mammaogram, then the biopsy, in July the Mastectomy, August, the lymph node surgery,(which I debated wether or not was necessary and seems to be still causing my pain and lack of mobility), then began chemo in Sept., had only one session that almost killed me. I ended up in the hospital the following week for 5 days with fever and infections, etc. I decided to have the port removed and no more chemo.
I had two sessions of p[hysical therapy for the LE, was improving my range of movement, but not the pain. Moved from Colorado to Nevada in late November and have been unable to get medical assistance here yet to follow through with any treatment. My boyfriend was laid off from his job in CO, and my son graduated from UNLV here in December, that is why we moved here.
I am still in alot of pain on the entire upper trunk area, underarm area, arm, and back of the side which was operated on. Now I am also having bone and joint pain in my shoulders, elbows, hands, and knees. I can hardly sleep due to the discomfort and the hot flashes. I also cannot wear any type of bra due to the pain. I am glad I came back to this forum to read all of your posts. They are helpful, informative, and let me know that others out there are sharing some of my experiences, and the helpful tips are great. i also get angry with my body. It's hard to find the right mental, emotional and spirtual balance of being thankful for being a fighter and survivor and being upset with all the things that can occur and follow treatment.
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Hi Thirtynine - I'm so sorry you are going through this pain and emotional upheaval. We're all here with you. I know that for myself the truncal lymphedema is quite bothersome in my chest, back and in the crease where my chest joins my underarm. It swells in my chest and around the side and below my shoulder blade. At night it's much worse - especially when wearing a bra all day. I had a bi-lateral mastectomy and 13 lymph nodes removed on my right side. I also suffered nerve damage and pain from the lymph node dissection as well as cording which is still unresolved. I am thankful to be alive - but I also know how difficult this journey can be. There are other ladies on this thread that know much more than I, and I'm sure they will be on shortly. Meanwhile hang in there. You're not alone.
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3jaysmom - An important note on the acupuncture, I only went to the specialist my LE PT recommended. She said absolutely do not go to anyone your friends recommend as it might cause more problems. Based off of a post here (either Binney or Kira) I selected the Chinese MD my LE PT recommended.
I've experienced the same problems with the sleeve, some days it's fine other days by the time I get home from work all I can think of ripping that thing off my arm.
Thirtynine- If you were treated for LE, did they show you and manual massage techniques? Also, my LE therapist stresses every time I go in...that I must...it's not an option...I must get my blood pumping for at least a half hour every day. That means briskly walking etc. She said to the point of sweat under my arms or on my back. It keeps the lymph fluids moving in the damaged area of your body. If there is build up...that's were the massage comes in. I'm sure Kira or Binney can describe it in better medical terms. Since I still have my breast for me truncal LE involves swelling, pain and general discomfort in my breast. MLD is very helpful. When it flares I usually lose mobility of my shoulder and have tightness in my arm pit and it has just recently begun traveling down my arm. Compression garments really help me. I hope Kira or Binney chime in here...they have a wealth of knowledge to share.
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Betsy, you covered it really well. Just to add that with acupuncture it isn't necessary to insert needles into the affected quadrant at all, so best to avoid it since infection is a risk.
Thirtynine, DVT is deep vein thrombosis -- a blood clot. Swelling can be caused by that as well as by lymphedema, and you don't want to do the lymph drainage massage if there's a blood clot because you don't want to move it. I sure do hear you on the struggle to find mental, emotional and spiritual balance, and it's really complicated when we still have trouble finding balance of our physical selves because of pain or swelling -- or any of the other assaults on our bodies by bc treatment. Sending you warm, gentle hugs. Tell us how we can help.
BinneyEdited to add this information about breast/chest/truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm0 -
KittyDog, great news on your normal mammo! Also glad to hear you have an appointment for a custom sleeve. Can you perhaps wear your night sleeve at times during the day? Not sure, but thinking it may help to control or help swelling in the meantime until you get your custom compression sleeve.
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thanks for the tips on acupuncture, ladies. im set to see the le therapist in 2 wks. im wearing a light shaper, and its' helping alot . its mostly in the armpit area..3jays0
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Does anyone have banding or cording that shows up just out of the blue (not there all along) I'm having PT for a bone spur/torn tendon in my left elbow, and I'm noticing what feels like cording just in front of my armpit and up towards my shoulder - it's also red and creased there. No noticeable swelling otherwise - I measured. Axial may be swollen, but hard to tell since I don't have consistent points to measure from. I want to develop some points, since the only other way I can tell is by how well my arm drops to my side or is held out to the side by swollen axial, or by how my clothes fit in my pits or by pain. LT just gave me arm measurement points. Any help on either issue?
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i had good ews on my PET today.. finally. i'm dancin with NED!! and am deliouriously happy; but, im hurting so bad with the LE i can't concentrate to celebrate seriously. i really have been doing too much. thats' what happens when im nervous. gonna see the LE therapist for truncal eval next wk; i hope. shes gonna see if she can "squeeze" me in.. my armpit just feels so weird. i can't wear a vest, they don't want compression over the heart. so, im hoping she'll know a way to wrap it. lightly is usually the way to go, anyway. RIGHT? this gets so confusing!! i hasve a lite compression slimmer that helps, but its' from the "dog ear" surgery, i think.. and that's a tough place to get compression over, to begin with.
this is almost the hardest part of the whole roller coaster! i guess cause ya can't get away from it, most days, eh?
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Happy, happy NED!!! Best dance partner in the world!
On the other hand, the pain sure rots. Hoping your therapist will be able to, uh, "squeeze" you in really soon. Ask her about a Swell Spot for that area (I like the "Kimbe spot"). I wear one tucked into my slimmer to help reduce both pain and swelling in that hard-to-treat area. Here's a picture of it:
http://www.bandagesplus.com/prd/64/679/Kimbe-Swell-Spot.html
I agree about LE being one of the hardest parts of this journey, because it just won't go away.
Hopefully, though, you'll soon have the pain relief you need. Keep us posted,
Binney0 -
Yay for NED!!! Woohoo!
So, I found out a possible reason why my LE won't get under control. I've been doing my MLD WAY too hard! UGH. I hadn't been to me LE therapist since November, and she usually does scar tissue work on me since I am such a mess, but today she was working on reducing my swelling and I was like.."Um...is this how light you are supposed to do it? Becuase I have been doing it wrong for months!" Ugh! What a dumb arse!!!
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