GRRRRRRRRR I HATE LE..........
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OMG does everyone always have these problems.I was so scared of getting it i always took extra care....how does this happpen?was it the bite?I dont lift anything heavy.AND which dr.do i go see.I need a ref. from a dr.right?I did not like that last one i went to.Im gonna do everything that you said Binney cause you know I value your opinion.One more question: does this need immediate attention?
Thank you sooo much
hugggggggggs K
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Granny, when we're worried about changes in our bodies after breast cancer, we ALL need immediate attention in order to put our minds at rest.
But aside from that, what you want to watch for is any sign of infection, because that DOES need immediate attention. That would be any spread of the swelling, redness, a fever or flu-like feeling. If you suspect infection you need help right away to keep it from spreading.Other than that, go to any doctor on your team who you like and who will listen to you, even your PCP. Ask them for a referral for an evaluation from a lymphedema therapist. I hope it's nothing and you'll see improvement rapidly. But if not, do get seen. Even if it is LE, treating it early means easier treatment and control. It'll be good!
Big hugs, and please keep us posted,
Binney0 -
Mags, bummer!
The heat and humidity could be giving you trouble. It sure isn't something you did "wrong", at any rate. Elevate as much as you can, don't forget to drink plenty, stay inside during the hottest part of the day. <Sigh!> The wrist problem will be something to ask your therapist about. My sleeves leave a mark at the wrist just because they end there and the glove goes over them. Have you tried wearing the sleeve over the glove? This is all so "trial-and-error"--lots of error and it sure can be a trial!
Kate, good thing you're checking up on those charges--doesn't make sense to me. Please let us know what you discover.
Hugs!
Binney0 -
Thanks Binney---I did what you told me drank plenty of water,coconut water too.I drink that everyday anyway.I elevated it for a while along with the stretches and deep breathing.
the swelling went down a little.
I even changed pocketbooks.Lets see what tomorrow will bring.
You dear one brings sooo much to the thread.Kaara too.Thank you again.
huggggggs K
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I have been on bco since last year, but I am a newbie to this thread. I know that you ladies are very knowledgeable and experienced because a good friend of mine with LE visits this thread often. I do not have LE, but I do have a question that is related. For the last week the middle toe on my left foot has been the size of a small breakfast sausage and it has been extremely painful, at times so much so that I have been unable to put any weight on that foot at all.
I have been to my PCP who put me on an antibiotic in case it was an infection. But she seemed stumped. She referred me to a podiatrist if it didn't clear up within a week. I saw podiatrist this morning. Xrays showed no fractures. Podiatrist is stumped and is now sending me to have an MRI.
My question is this: could this painful swelling which is in just ONE TOE, be some sort of LE or the beginings of it? I feel foolish asking this, but I am stumped, and so are my doctors. Hoping you ladies can offer some insight. I have been to classes about LE but this is something that did not come up.
Look forward to your input. Thanks.
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NoMore, please, please don't feel foolish asking questions here!
Lymphedema is a "stump-the-experts" experience no matter what, and if we don't ask we never find answers.That said, I have no idea what's up with your toe!
For some of the women here, the first place their LE showed up was in a single finger or thumb, without involvement of the hand, arm or chest. But that's upper limb LE. Lower limb LE characteristically starts in the foot or lower leg, and any kind of trauma can trigger LE in a person with a genetic predisposition -- and at any age. But what you're describing does not sound like any typical presentation of LE symptoms I've ever heard of.
Hopefully the MRI will show them something clear and easily "fixed," like an inflammatory response that can be quickly brought under control. Huge hugs coming your way as you wait for clarity and relief! Please let us know what you discover.
Be well,
Binney0 -
Help - What is the difference between a "Klose" trained and "LANA" Therapist? I can find the therapist I am going to weds. (Jeffrey Hallman, OTR/L, CLT) on the Klose therapist list but he doesn't come up on the LANA.. Is that ok?0
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GmaFoley, here's the score: There are several lymphedema therapist training schools that do a good job of turning out well-qualified therapists. Klose is one of them, so that's all good. "LANA" stands for the Lymphology Association of North America, and it's not a training school at all, but a voluntary licensing organization. In other words, therapists with at least 135 hours of training for Klose (or one of the other schools) can apply to take a written test from LANA, who will then allow them to call themselves LANA certified. The test costs a lot of money to take and isn't necessary for insurance reimbursement or anything else, so many good therapists see no reason to take it (my own therapist, for one).
Don't be afraid to ask about his training--how many hours of training he's had, how many years of experience. My guess is it'll reassure you.
Because the relationship we have with our therapists is a long-term one, it's important to be comfortable with yours. That means being able to ask any questions you have and know he will listen to you. Do let us know how it goes!
Hugs,
Binney0 -
Thank You Binney! Just asking that question eases my mind.. I know this is just another BC hoop to jump through...This whole thing is really hard for a person that doesn't like change.. It is an ongoing roller coaster of change for me. So Thanks again for all your support...I need it! 0
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thanks Binney for the tip to wear sleeve over the glove. Was told by therapist that was a no-no but the other just isn't working for me. She said herself I am a different breed with this stuff so lets think outside the box. Trying it today to see if it is better. Arm is not swelling...just my imagination. There was a lot of pressure in the arm yesterday with the sleeve on so I took it off in the evening while watching TV and kept it elevated. Feels ok today.
Maggie
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I'm so pissed at myself ... I lost the custom dorsal swell spot that came with my Tribute. Retraced my steps, but no luck. They should make them yellow neon because the black/grey is like camoflage. I used mine during the day when I wrap my hand, and at night with my tribute. argh.
Has anyone gotten solaris to remake a custom swell spot that came with a tribute garment? KS1
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I had my one year mammo and was surprised to be told that you can see LE on the mammo as the area looks grey. I also had an ultrasound that had been ordered due to some swelling. The results were thickening of the skin from rads and LE but no evidence of anything else. I'm now wondering how the docs will ever know when there is a problem with both LE and rads leaving their marks.
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Fitz, I am now thinking they pull these things out of their @#$@ - My surgeon told me the White area on my mammo was swelling... so I'm not sure - I have alot of grey area too where the white isn't.. So between both these docs, I guess I have no chance ..LOL I really am going to start taking the Breast LE (if that is what he tells me tomorrow) step by step.. It just gets so overwhelming..
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Gma, I think the tech said gray or fuzzy. I'm feeling good since their diagnosis leads me to think everything is ok. I need to keep after this LE though. After my last plane trip I just haven't gotten back to where I was. This LE is a SOB but I'll just keep after it.
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Well, I am dying to have Binney or Kira weigh in on this, because I have never heard of LE showing on a mammo. I saw one study that used US to confirm early breast LE. If LE is visible on a mammo, it would be common practice to use it for LE diagnosis after lumpectomy with node dissection and/or rads, which is hard to diagnose early because tape measures, water displacement, and perometers are not useful.
Carol0 -
Hmmm! That would be a huge help to diagnosis, not to mention confirming diagnosis and progress/regression in studies done regarding breast LE. But I've never heard of it (which is certainly not to say it isn't possible, just, I never heard of it.) Does it diagnose LE specifically, or swelling in general (post-op, post-rads, whatever), I wonder? Did they say, GMAF and Fitz?
Interesting! Perhaps Kira will know more about this, now that she's half-way through LE Boot Camp. Oh, Kiiiiiira!
Binney0 -
Binney, Surgeon told me what I was seeing was the swelling caused from the combination of 2 surgeries and radiation. He was the first out of my menagerie of doctors to actually admit there was swelling. My swelling is minor compared to others but it has been hurting since last July.. I thought it was definitely time to at least have an eval..... edit: thanks to Granny's urging! Thank you Granny
BTW - no insurance - bill for the eval is $450.. They are handing me paperwork (20 pages or so, if I remember) to get financial help and/or payment plan... Guess it is worth it if I can get it under control.
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While the tech told me she could see the LE, I have a lot of swelling from rads and surgery and they seem to always have to rule out bc by performing another test, I wonder if the tech realized that? I'll be seeing my RO in a couple of weeks and I'll tell him what the tech said and see if he has an opinion. I'm having a chest x-ray tomorrow and I think I'll ask if they can see LE and see what they have to say. I'll let you know if they give me an opinion tomorrow.
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Ok its the next day...I did all the right things once again and most of the swelling is down BUT if you look for it you can find it.Should i call for PT?Do i really need it?No pain at all.what should i do?0
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Granny, if you're seeing progress I'd vote for doing "all the right things" for another couple of days and see if that resolves it. Don't let it go on too long without help, though. Keep us posted!
Binney0 -
And I will listen to you Binney....thanks again.huggggggggs K
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Granny............your girlfriend here..................Let me just say..........Binney is the "go to" person on here when it comes to LE....................as for me....................I have given up.................I'm so friggin disgusted with it all, I can't begin to tell you......................wrap, custom sleeve, minor swelling, no custom sleeve, more swelling, sleeve does "shit", exercise, see no improvement, stay out of sun..........put on lotion.....still got "red" walking to the beach, stayed under the umbrella, still got a little red,...................did everything I was told, and everyone else screwed up with my garments..........to big, to small, to short, to long, wrong material, so guess what...................................I gave up...............have never been so discouraged with anything...............I swear dealing with LE, is worse then dealing with the BC................only difference is LE usually doesn't kill you..............................and you don't have to take horrible "meds" for LE...............but other then that LE is worse..........................hate the whole "cancer" bullshit.
Granny, listen to Binney...............she knows her stuff......but do take care of it......maybe you will have some luck with your result...........and I had the best..............go figure...........they still can't get it right.........at $40.00 a visit, I said................screw it...............
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Ducky---sista/friend.you always crack me up...no matter what thread you are on your posts bring a smile to my face.
I know these 2 angels.I send people all the time here.And yes I did listen to them and ya know what.The swelling went down,it never hurt,im watchin it,didnt call a dr.yet for PT.
just another one of the damn s/e of this giant monster.
Now im wearing long sleeves.grrrrrrrrrrr.If i do have it and thats still a big if ill probably spend most of the summer indoors.THE BUGS LOVE GRANNYDUKES.I hate the summer anyway.
I look in the mirror 100x a day...am i watchin it???????Am i nuts???????????you bet...
Have I told you lately how much i hate this damn disease??????????
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I love you two: Ducky and Granny - I'm just glad to have you and Binney and Kira on my side
3 hours and off for my eval - Granny is driving her electric broom if anyone else want to come into my pocket with her!Love you Ladies... boy why am I so nervous? I got all of you with me!
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Gma...............we're with you sweetie.......you relax, and let us do the praying and the worrying...........hell, I have nothing else to do, and at least, that keeps me "holy", and not worrying about "me" for a change............
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Ducky---get on the back of my broom.....im goin to GmaF...i have 1 seat left sooooo hurry up.
All aboard...makin local stops.
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I went for my chest x-ray today and asked the tech if you could see LE or thickening of skin on an x-ray but he didn't know. He said he would make a note that I have both in case it would help the radiologist. So now I don't know if the tech who took the diagnostic mammo was right or not. I guess we'll have to wait for Kira's input.
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Back from my Lymphedema Therapist - I think he is a keeper.. And someone jumped out of my pocket and whispered in my ear, "Edema or Lymphedema?" He said, "Lymphedema of the Breast".. He went through my history, asked lots of "when is the pain worse" questions, measured my arms, and then did a small sample of the MLD he does..
Funny thing though and he said I was Unique.. My dominate arm should have measured bigger than my non-dominate, but infact it was smaller.. I told him, after a year of being in pain on my dominate side, wouldn't it be more likely that my other arm became my dominate side? He thought about that and did agree that it was a possibility. What is your thought on this ladies?
I forgot to ask him a question: If it is breast lymphedema, what are my flying instructions when it comes to compression?. I have a business meeting later in the summer/fall that they are going to fly me to..
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GmaFoley, that is interesting. My dominant arm measured smaller than my other arm, too. Still, it feels swollen to me.
My PT says I have to wear a sleeve to fly, but she doesn't do anything about getting the sleeve. When I went on vacation the other week, she was going to hurry up and order a sleeve until she learned that I was driving. Hey. We never know when we might have to fly. She ought to at least teach me how to wrap.
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Dunesleeper - Do you have arm LE or Breast LE?
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