GRRRRRRRRR I HATE LE..........
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Back from the LE therapist. She said definitely not cording. Highly unlikely to be RIBP because that takes years to develop (Really?), but is definitely nerve pain rather than muscle.She took more measurements, and said my L-dex is up again, possibly from not wearing the sleeve for a few days. I will see her again in 4 weeks.
In the meantime, I now have an appointment with the Radiation Oncologist on Wednesday to discuss rads to my hip mets, so I will ask her then - she's more likely to know if it could be radiation related. And I have a CT in a couple of weeks too, checking for more new mets - hopefully will include the arm this time.
Lots of appointments this month - hopefully all will become clear soon.
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suems Mine wasn't technically RIBP but there was nerve impingement from the rads... LE and PT therapists had me doing stretches and some type of myofascial massage in the area to get the nerve/s unstuck. It worked and I hardly ever have that shooting nerve pain any more. It starts to return when I haven't stretched in a while.
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Just back from Rad Onc appointment. She is sending me for an urgent MRI on my shoulder/arm, which should see what nerves are damaged. Then we will take it from there. She has also put me on Nortriptyline for nerve pain, and will refer me to the palliative care team for proper pain control. Plus she will chase up the port insertion for bisphosphonate infusions, which will make the CT and MRI contrast injections a lot less complicated. All of that has to fit in with the week of radiation on my hip and femur, all of which she wants to happen this month.
Whew! November is going to be a busy month!
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((((SUE)))) that's a LOT going on. Hang in there.
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Suem. We are in your back pocket
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Sue, that is soooo much for you to have going on. Gentle hugs.0
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I'm sure this has been addressed along the way but I can't search at the moment. Has anyone had a cortisone shot in their lymph-compromised arm? I assume the decision needs to be made based on weighing risk against current lain/discomfort. I lost almost all ROM after my exchange surgery in April. PT was helping, but then I took a break and I also sort of jammed my shoulder (don't ask) since. So I went back to PT this week and my therapist recommended that I go to an orthopedist became now in addition to the ROM issue I have pain. She thinks it's an impingement and likely inflamed. Oh, I don't want oral steroids either, can you say decadron-flashbacks?!
Many thanks for any comments.
Jen
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Jen- my wife has LE in one arm and she recently had surgery in the other cancerous breast+ sentinel lymph nodes, I think your oncologist should advise you, any injection in LE arm sounds like not a great idea to us. They had to use my wife's thigh for blood pressure recently, trying to avoid another arm with lymphedema (LE)
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Jenwith4kids I've had carpal tunnel surgery (closed) and two injections in my thumb joint since I was diagnosed with LE, not an issue, though I watch carefully and make sure to do my lymph massage before and after.
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Jen, before the injection make sure your LE is as controlled as possible (to help lower infection risk from breaking the skin). Whenever there's pain our bodies respond by sending more lymph fluid to the site (which is why injuries swell). So if it takes an injection to reduce (or hopefully, end!) the pain, that will actually help the LE, since less lymph fluid will be routed there. Just keep an eye out afterward for any sign of infection, and if you suspect that get help immediately. Here's what to look for:
http://www.stepup-speakout.org/Emergencies_and_Med...
(At the bottom of that page there's a section about how to deal with surgery or other procedures on an arm with LE--you might find some helpful hints there.)
Let us know how it goes, please! Gentle hugs,
Binney0 -
thanks Binney, I feel better already.
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I was headed for the same logic as Binney before I scrolled down to her helpful post.
Binney, a question for you: inasmuchas LE is an inflammatory disease (heard that multiple times at the World Congress of Lymphology in September), does it make sense that an anti-inflammatory like cortisone would pose minimal LE flare risk just by its nature (aside from the initial pain-poke and the broken-skin infection risk with any injection)?
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...I totally agree with Binney and Carol too - mine was under control when I had the treatments. But I did have an issue with really increased hand swelling after a punch biopsy close to my sternum, so I guess you can't tell, only be cautious.
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Carol, that does make sense--nice touch too! Only of course the "insult" of an injection is itself a possible aggravating factor. As Linda points out, with LE "you can't tell!" is our mantra.
Anyway, the infection risk still remains, unfortunately, though obviously with sterile precautions it can be controlled as much as possible. "Reminding" your doctor about your elevated infection risk is always a good idea.
Be well,
Binney0 -
Before my carpal tunnel surgery I had a long talk with the surgeon about LE risk to that arm, they put the IV in my foot and, though they had to tourniquet my LE side, they kept it shorter than normal, lots of precautions. They were great to work with. Before I had the thumb injections my LE therapist and I talked about precautions and watching for infection, doing extra MLD before and after. Also, we did a benefit/risk analysis, the benefits of reduced pain over ruled the risk of more LE. And it actually didn't cause any problem, afterwards I actually have less swelling in my thumb area, probably because my glove causes additional swelling, but after injections there was less issue.
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I've had both a cortisone shot and thumb surgery one my LE side. I had swelling in the thumb before and after surgery. All good now. They used a tourniquet for 30 min during the surgery. The only problem I had was localized infection around the stitches. I had this to on radiated skin after nipple reconstruction . I'm wondering if I'm allergic to the dissolvable thread, as I am with many other things.
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Sue - it does sound like my experience having cording twice. The LE PT should be able to break it up in a couple of visits if that is what it is. I also have fibrosis and a lot of scarring that causes pain and other issues. The massage helps a lot and getting my own flexitouch machine is now controlling all of it and my boob almost feels normal.
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If I am doing just light rebounding - I have very mild LE at this point - Do I really have to wear the sleeve.. Just need a smack across the head to tell me I do.. I just get so tired of putting them on when I feel fine...
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That's the worst thing about LE, you just don't know what it is going to do down the road Gma. I was diagnosed with it back in 2004, quit wearing the sleeve after about 3 months, because it didn't fit right. I ignored my symptoms because they were mild. Then in the spring of this year, my symptoms got worse. Now that I look back over the past several years, my symptoms have quietly crept up on me and now I have it worse in my truncal area. Looking back, I wish I would have worn the sleeve at least when I was cleaning, maybe I should have found a better person to fit me with a new sleeve. Now I have that spongy feeling in my armpit, and the most awful aching from the breast all the way down my arm by days end. To add insult to injury my hand is getting worse now. I wish I had a do-over!
It's hard to tell you what to do, the sleeve is annoying, I can only tell you I wish I'd worn the sleeve, and found a different fitter back in 2004! They say hind sight is 20/20....0 -
BTW - I heard Binney in the back of my mind saying, "Don't you dare!" - I put my sleeves on before I got on the Rebounder... GRRRRR - Have I ever told you how much I hate LE?
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Interesting new research about the Flexitouch on the BCO research news site.
http://www.breastcancer.org/research-news/advanced...
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GMA, hope that GRRRRR was for the LE and not for me whispering mother-hen threats in the back of your mind!
paintTheSky, thanks for sharing your experience, and I'm so sorry we can't just turn back time and try it over again. As my mother used to say, "Too soon old, too late smart!" Still, it's never too late to take charge of the stupid LE and wrestle it into submission. Good for you!
Hugs (and chocolate),
Binney0 -
Binney.love that saying.been thinking about you. Missing your wisdom here.
Sleeves are stupid for sure. I try to view them as an extension of my lymphatic system. Sometimes when people ask me why I am wearing them and depending on my mood I will say I had my lymph nodes taken out and my sleeve is my fake lymphatic system replacing the nodes taken out......yup I do want to rip this sleeve off and stamp on it like a toddler tantrum but my logic brain says not to.
Gma, it's also great to hear from you to. I got a rebounder and bounce lightly every so often. I should do it daily but I have other body parts that require different types of exercises. No fun when body starts falling apart.0 -
I've been wondering recently if I don't have a touch of truncal LE... can't really tell, doesn't look puffy but feels kinda funny and often sore. My foobs hurt - I've had them since April, is this just new normal? I always feel like I need to wear a bra. And of course I forgot my sleeve when I ran this morning. I hate BC.
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my truncal is worse than my arm or hand. I get a boiled egg feeling at the back of my pit and sometimes a sting around my shoulder blade.some times it creeps into my breast. When it does that I am usually sitting with my back pressed against a chair or laying on that side in bed.Probably the fluid can't drain but Walking around, with belly breathing helps. Mine is a bit puffy.
Maybe get evaluated by a qualified therapist about the sore foobs and check in with your doc to.0 -
Hugz4u - I was asked to be in a research study at the oncology center - they are comparing the 2-day diet with the 1500 cal. diet. Seeing if there is any difference in getting rid of visceral fat. Supposedly its the fat the helps breast cancer grow?? Anyway I ended up on the 2-day diet side of the study and am losing the visceral fat and weight (10lbs) in the past 2.5 months. Part of this is to add some kind of daily exercise. My knees don't take hiking or even walking my hill, so I had to figure out what to do during the winter without taking the hour to go into town to exercise at a gym or something. We came up with the rebounder option. It doesn't bother my knees and I do it twice a day and take the weekends off. I have my mountain view through the window and don't have to drive anywhere to do it. So far so good. My sleeves are needing to be re-measured but don't have the money to buy new ones. So I make do with what I have. I haven't had any reaction from the rebounding. As long as I'm good about wearing my compression bra and sleeves, I think I am good.
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Gma, I ordered a rebounder yesterday. How long do you spend on it each time
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GmaFoley,
I've consistently found my rebounder really helpful in controlling my truncal LE. I got it and used it during radiation. I usually jog, but use the rebounder during spells of bad winter weather.
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Marijen - I started really really slow - and built up to where I am - just 1-2 minutes to start - 2 x a day - just light bouncing - I don't pick my feet up off the rebounder - When I started to feel comfortable with that I added another minute. I am up to 8 minutes - around 900 steps 2 times a day. I do do side-stepping at this point and what I would call slow jogging (feet stay on the mat) - If you want the utube that I watched PM me.
Edit: I am also told that 10 minutes of rebounding is worth 30 minutes walking or jogging.
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Thank you Gma. It arrives tomorrow. I probably would have tried to do too much. 10 min= 30 is a great surprise! Mine has mostly great reviews and inexpensive. I hope it's good enough
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