GRRRRRRRRR I HATE LE..........
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My girlfriend in Texas JUST had DIEP and got rid of the implant. The doctors in San Antonio knew about her LE.
After she woke up... she said.. her LE was GONE!... three weeks later... she still says her LE is gone and the pain is gone gone gone... she is sooooooooo happy about this.
Now, I think most of us know... LE cannot be gone.. BUT... my friends LE might have been triggered by her scar tissue and implant malformed...... so you get rid of all that.... LE is better... non active....
Am I right Kira,Binney??
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Laura, I'm willing to bet my capsular contracture has contributed to my LE. I can feel a lot of scarring around the implant. The myofascial therapy has helped a lot in reducing it, which I think has kept the swelling somewhat under control. I will let you know for sure when these mothers are finally out of my chest!! I'm still in the process of interviewing PS's and attending other medical appts. in order to decide on surgeon and prepare for the process. I've been laying low because this and a bunch of other stuff has kept me quite busy, but I will definitely be back to fill you guys in on everything as it plays out.
I found myself teary after reading and catching up on all the latest posts. You guys rule! I always feel validated when I come here. There are so many topics being discussed to which I can relate. Want to share more but need to go to bed. Thinking of you all as I tuck myself in. Hugs!
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thank you very much estepp! What shocks me about all this is how much I wasn't told. Oh well, I found you guys and you really do rock. After saying yesterday that I wasn't having any real difficulties with LE, I woke up this morning with a sore right arm and it is swollen. Off to doc. I don't have any wraps, sleeves, gloves etc., and even if I did, I wouldn't know what to do with them..
thanks again.
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Estepp, how wonderful for your friend! This does happen sometimes, and I think your guess about the mechanism is as close as anyone can get. It's also been theorized that lymph vessels respond to additional surgery by growing new connections because when there's surgical damage the body generates substances that accelerate cell and blood vessel regrowth. (Of course it doesn't always work that way, and the additional surgery can just as easily add new scar tissue -- you can't control or even predict the outcome
). I also think you're right to call her LE "not active," rather than "cured."
The damage to nodes/vessels is already there, and that was not erased, just somehow compensated for. I hope she'll be wise and careful going forward and be swell-free forever!
Kathy, what a bummer! I'm so sorry. Let us know how it goes with the doctor as far as getting a good referral. Here's information about what to do with a swollen arm while you're waiting for care:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waitingBe well!
Binney0 -
Oh my I feel so old and handicapped. We had another rare snow and ice storm here in the South. We got four inches of snow with a fourth of freezing rain on top of that. My arm is killing me thanks to the torn rotators cuff and the damage from the MX. Pray my LE does not start acting up. However my DH has a pretty clean car so he can go to work tomorrow. I know the State is not going to allow another day off. Getting ready to take a Loritab. Oh and the reason I cleaned the car is because my DH is handicapped.
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I'm praying your LE stays quiet KittyDog. Be kind to yourself this evening. Do some stretches and relax. Drink some water and elevate that arm. Surely you will be rewarded for being so kind and thoughtful.
Gentle hugs
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Prayers for you, KittyDog. With joy. Have a restful evening and let us know how you're doing in the morning,
Binney
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(((((KITTY)))))))
Thanks for the followup Binney.... I feel better and more.... um.... correct in what I say when you or Kira back me.... after all... I have learned 90% of what I know about LE from you and she... and your site. THANK YOU !
OK... this might be a stupid and LOST HOPE kinda question...... BUT.... if anyone would know the answer... it would be Kira or Binney....:)... and maybe some of you LE sisters....
I SO want to wear a GREAT PUSH UP AN OUT BRA... to show off my girls...LOL LOL... not all the time... but with a bra.... THEY LOOK GREAT... without a bra... they are ok and my LE does not act up as bad. I know I just cannot wear those types of bras... or I will pay a dear price I am not willing to pay.
The question: Are their ANY LE compression bras that help the girls look AMAZING?
I feel stupid even asking......it is just that I am determined to loose these 15 pounds... and with my oncologist on board... it looks like I will loose them within 3-4 months.... SOOOOOOOOOOOOO I will be back in all my normal cloths again come summer.... that means... my cute tops...ETC................. but..............without a great pushup bra... those great tops............ turn into..............ok tops. I probably sound ridiculous...... but hey.. I am only 42 and have many events with DH to wear great cloths.............
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Thanks everybody. I am sore in my shoulder on the MX side but so far so good. I forgot to tell ya that I am back in the sleeve that I bought in a larger size. I got measured Friday and he brought me a bottle of It Stays. IT WORKS!.... but boy does it hurt when I decide to take it off at night. Anyway, we are ordering a sleeve with the silicone dots to try. Insurance is covering it but unfortunately I haven't meet my deductible and will have to pay for it. What disgust me is the price mark up. He wants $80 for it and I know I can order the same sleeve for $47. uggggggg At least it is going towards my deductible.
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KittyDog - Dampen your sleeve with some water where the "It Stays" is before you try to remove it. I used to have the same problem with the Juzo roll-on adhesive. A little water disolves the glue and dries quick enough if you need to put the sleeve back on right away.
Feel better.
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Hello everyone! I haven't posted in a while, but wanted to let you know I received my CircAid sleeve. It has been extremely disappointing. WHile it seemed like a good idea, it just does not stay on my arm. My upper arm is much bigger than my lower arm and it slides right off my arm. The maxium time it has stayed on before I had to redo it was an hour. I do plan to buy some of the roll on adhesive and hope for a miracle.
This is by far the worse sleeve for me that I have had so far. That would include; Jobst with the silicone band around the top, the Reid sleeve, the sleeves that come up on the shoulder and have bands that hook around your torso (I forgot the name of those).
I'm keeping my fingers crossed for the power of It Stays!
Thanks,
Miss S
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Miss S--can you return the Circaid--for the price and the function, you shouldn't have to adding adhesive.
Laura: don't underestimate your knowledge--you know this stuff! And look what you've done for this community--amazing. Binney evaluated some bras and some were better for cleavage--maybe pm her? I'm sure you look fabulous, but remember the thread about not wearing a bra and LE getting better? I'm sure for just evening, you coud get away with some constriction, but ask Binney, she's tried a ton of bras. So has Jane.
RE: the reconstruction and LE--KCSHREVE went to NOLA and worked with Dr. Massey and was thrilled with the results.
We're in the middle of a storm: and every thing cancelled last night, but my work sent me a text at 5 am--thank goodness my receptionist agreed to call me, otherwise I would have freaked even more--I can't drive in a blizzard with this hand! I had nightmares that the message wasn't cancelled, it was "if you're driving, don't turn back"--gave my receptionist a good laugh at 6 am.
Kitty--be careful, this is heavy nasty snow--trees are down due to the weight.
Kira
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Estepp, if you lose the 15 pounds, research says your LE will be easier to manage, so you may well be able to manage the push-up bra at least for special times. Go for it!
MsS, goodness! Don't keep the thing if it isn't working for you! They should be able to return it and help you get what you need. Have the sleeves you've tried been custom sleeves? If not, it's definitely time to give that a try.
Kitty, how goes it? Thinking of you!
Binney0 -
Yes, my sleeves are custom made. I love the idea behind the CirAid, with it being easier to get on. I don't usually have anyone to help me and it's very difficult for me to get my sleeve on by myself. If the glue works, I will probably keep it.
I did call SunMed today (the place I have to go through per my insurance) and she is going to have me go show my LT and see if it was measured wrong. Personally, I don't think the problem lies there. I really hope I can get it to be acceptable, but if not I will return it.
I am waiting for a half-bolero from Gottfried to arrive and I have high hopes for that one.
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Well... I can honestly say that I did not know that loosing 15 pounds would help my LE... wow... THAT is even more encouraging. Thanks ladies !
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hey ladies, just cking in.. KIRA: im glad you figured out to take it easier.. and BINNEY i haven't given up w/ excersize. i love the dancing part too much. i just THINK i'm 20; and can "shake it" and then later, my body says your 60 silly, and complains for days. i'm really suffering since the weather changed. my LE warns me the night before.. i'm so spoiled being in so. Fla.. but it still hurts. the MS does the same thing, so its' probably a combination of both. im now wearing the whole getup.. the gottfreid wrap around sleeves. they work the best, but there such a pain to keep down with the ginormous belly i have from chemo bloat. still, no help from thr GI guy about it. looks like it may stay... he says he's cking me, expecting my intestines to "leak" sooner or later.. i'd like to beat him out of that idea!! i've added an extra band under the belly to some of my more unconventional bras. they don't "spring " up as much. the foobs would end up around my neck at first.. not the push up effect that Esteep is trying for, im sure lol 3jays0
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Got back from visiting our new goldendoodle puppy, Baxter. We drove 6 hrs. to see him and will go back in another week to pick him up and bring him home. He's completely adorable and very sweet, and I can hardly wait to hold him again. After we got home last weekend from driving the 6 hours, I was putting away our toiletries and decided to clean under the sink. Then I decided to clean every drawer and cabinet in our master bath. After an hour and a half, my DH came to check on me. I had stuff everywhere. He said, "Are you nesting?" I hadn't thought about it, but yes, I think I was doing just that - for a puppy no less! LOL
We too got the snow and ice storm in NC, and my LE flared up in my chest big time. I wear the compression vest every night with swell pad. I looked like a ripple chip in the morning when I took it off. My skin was so indented where the swell pad was. On days when the weather is bad, wearing a bra and my prosthetics is uncomfortable. I wear them anyway, but by the time I get home from work I'm ready to scream and off they come. I'm still going to weekly PT for the LE and cording. It's still excrutiatingly painful when the PT works on breaking up the cords. They are very persistent and I've been going through this for two months now! GRRRRRRR!
I'm so grateful for all of you ladies and all of you knowledge and help. I don't know what I'd do without BCO.
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I heard that 3jays......... haha..... haha.......
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I get that football feeling under my arm when it is really acting up. I had a MX so it might be a little different. I too have lots of scaring and radiated skin. I get stinging pains in the pectoral muscle area when I have extra fluid too. Unfortunately my Dr. left me a ugly dog ear in the chest area also....he still had hopes I would have reconstruction I think. That area hurts big time when I am swollen and can cause shooting pains if I wear my compression bra too long. Hope that helps.
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Jo, for me it's hard to describe. It can ache or sting or feel like an electric shock. It tends to move around within a given area, so it's even hard to pinpoint (which, before I hooked up with my great LE therapist, made me think I was crazy). Sometimes the skin hurts to touch, sometimes it doesn't. The pain doesn't seem to be related to any particular movement, though -- it's more like a nerve pain. Have you had any Mondor's Syndrome (cords on the torso)?
What helps mine is getting the swelling down with MLD, Flexitouch, a change of chest compression garment, some Lebed stretches, and/or a SwellSpot or other foam padding like spaghetti foam or a chocolate bar. (Barbe says chocolate bars give her a "full" feeling, but that's because she went to the Hershey's site to order them instead of BandagesPlus.
No, Barbe, no!) You can see the foam type here: http://www.stepup-speakout.org/foampadding_swellspots_lymphedema.htmJo, I sure hope you can get on top of all you're dealing with. It can be so difficult to sort out the culprit when there are so many things going on. Keep us posted!
Hugs,
Binney0 -
Forgive me for being clueless but not sure where else to post this - I've been experiencing tingling/numbness in the tips of my fingers of right hand (BC side) the past 3-4 days. Have not been able to find any reference to that in connection with LE. Something I should look into further?
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Thanks TWIN. Seems I'm still following you about on the threads! LOL.
I didn't even think of the A. I guess because my SE's have been mild and I never wanted to blame everything on it, but you may have a point. It's a little under 2 years that I've been on it and I know se's can start (just like LE) at any time. Thanks, will wait for other posts because BC folk are soooooooo helpful and knowledgeable.
Need to get some exercise in. Back later.
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I was going to say the same thing. I know tingling fingers is a side effect of Femara which is the same class drug as Armidex.
Benny hit the nail with her description better. I would agree it is a lot like nerve pain and the area that I feel it the most is where I have my nerve damage. hummmm wonder if it is related.
A refresher course is a good idea. I had my first in Sept. and just finished my second time going. I learned so much more the second time I think because I had an open mind and was ready to listen. The one thing I found out was I was trying to move my fluid through my scar tissue and radiated area. I was told not to move anything through the area that was brown from my radiation treatments. So in other words I need to move it through the collarbone area. Oh and I wear my sport bra the most. Good Luck to all.
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I too have the nerve feelings... this is how mine started. I thought it was due to all the scar tissue inside my body, I cannot see. I thought it had to due with my reconstruction being in the way of lymphatic flow. I think this all contributes.
I just wanted to put a plug out there to help JO.... that my skin all hurt too... like a never issue.
God Bless all of us!
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
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it could be neuropathy, or the begins. of LE. get it cked out! if you get on it faster, yu can control it better. i have both, but the" spotting" on my hand tells me i have fluid. its' the owrst in my bc hand.. but, its' the dominant hand,so i use it more too. so, depending on wehther i se swelling or not; MLD with, and glove.. vit. b., and sometimes neurontin for the nueropathy. i have to really stay on it.. hope that helps.... 3jays0
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How long do flares usually last?!?! Ugh. I am having one and it sucks!!! Boo.
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I have LE but I'm sorry I can't answer your question from experience. I would imagine it varies from person to person. Also how you are dealing with it is important. Are you seeing a therapist? Here is a great web site for LE info.
http://www.stepup-speakout.org/
I hope yours simmers down quickly. Good luck, gentle hugs.
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Thank you so much! It is better today. I've been wearing compression and doing my MLD. Usually they go away fairly quickly with those two, but yesterday was my third day of big time pain, so I was whinning. I got adjusted (Chiro) and that helped too.
I was going to post yesterday about dance but I was too whiny! I am a BodyJam instructor. Dance is a fantastic way for LE gals to keep fit, but modification is the key. I know it sucks to have to modify, but sometimes we do. If the arm movements are too much, take them out or make them smaller. Adjusting placement and ROM is also essential.
It was really hard for me to modify my weight lifting and pushups and certain yoga poses for after I was officially dx with LE. I had worked hard to get strong! But once I realized that modification was better than NONE, it was easier for me to wrap my head around. I have to admit, I probably don't modify as much as some would recommend, but I listen to my body. I am very diligent in BodyPump and with push ups, but I do push it when I am teaching.
I feel much better in motion than stagnant!!
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Kira, and ladies, I am so behind the 8ball because I haven't been on here checking on you wonderful women like I should.
I cannot believe the moron who blabbed your bidness, Kira. Just goes to show you can't fix stupid. Personally, I am learning to flip the bird with my affected hand. Kidding. Sort of. (why do we not have a red devil smiley????
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Suzy! Welcome back! You're right -- our smiley selection is painfully limited. We have a whole lot of emotions to express, and sometimes words just don't suffice.
Trisha, so glad things are better today. As many flares as I've experienced I still panic over them every time.
I'm always certain they'll last forever. They just have a way of unhinging me, so I sure wouldn't call your response "whining"! Love your attitude about modification -- thanks for that!
Be well,
Binney0
