GRRRRRRRRR I HATE LE..........
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Kitty, hey! Stay well, heal up quick -- so glad that's in your rear-view mirror!
Real gentle hugs,
Binney0 -
Thanks all. The hospital's nurse call tonight. She said she feels positive he didn't make me do sit ups. lol However some of the drugs they use do have the side effect I am having...yay lucky me. I can't even cough without it hurting and my allergies are horrible. I even had to take a second zyrtec today. Just so glad it is not swelling. The nurse said if I could get more than one finger then it needed to be redone. So I did...Sunday I can take it all off and take a look, I am going to attempt some MLD tonight with my one hand. Some has to be better than nothing.
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Ladies: I've been lurking for a year but only posted once or twice.
Today - 6 months after exchange surgery and lots of uncomfortable times - I received a diagnosis of mild truncal/breast LE. The doc is a Wound Care and LE specialist - in the hospital department with a hyperbaric chamber no less. I saw him 2 months after surgery but there was still too much post surgical swelling for a good diagnosis. He has ordered their PT department to call me to set up education and training, although he mentioned it may only help a little. Apparently there is a new Medicare wrinkle that PT at satellite clinics will not be covered if there is not an MD on site. He also told me to splurge the big bucks on a Belisse Compression Bra. I'm hoping Medicare will pick up some of the cost. Report to follow.
Thanks for the continuing information and education from Binny & Kira and all of you. I have appreciated hearing your stories so I'd know what kind of questions to ask.
Gee - speaking of positive - I forgot to ask if I'd be able to go back to scuba diving in the future. But not tomorrow !!
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This is a GREAT post! Thank you. I have been reading the post and I could have wrote them. It is encouraging to know I am not alone.
I HATE my Fat hand! Not only is it an EYE SORE, but it hurts! Wow---that felt good! LOL
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Minustwo: the medicare rule, as far as I know it, (and I refer patients for LE therapy a lot) just says that a PT/OT has to deliver the service, never heard of having to have an MD on site, and most PT clinics never have an MD there.
The hospital I work with just completed the "STAR" oncology rehab program-the one Julie Silver MD of Harvard sells--and they are sending out brochures right and left, and there is an MD in charge of the rehab department, but NO LE therapist! Yes, I am royally steamed. I'm on the grant for the training, and haven't done the LE module yet, but along with the brochure, it lists the services needed for oncology rehab, and for almost every type of cancer, it's LE treatment.....
There was a recent study of breast/truncal LE and it showed how common it is and how the vast majority of people do well with standard LE therapy.
Not everyone likes the Belisse bra--it's expensive and has to be fitted just right:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Check out some of the threads on truncal LE and see what people are using and liking, before you spend the money for the Belisse.
Barbie: totally with you and the hand LE--I have it, and went out to dinner with my husband last night and could feel it starting to swell, and it sure detracts from the experience! We went for a walk after dinner, and glove was right back on! I swell toward the evening, which my LE therapist says is due to accumulation of fluid during the day.
If it hurts--and mine used to--it will feel a lot better with that fluid out of there.
You are not alone!
Kira
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Glad surgery went well, Kitty, and hope you sail right through recovery.
Kate, how wonderful you can use Binney's therapist. So happy you will be getting top notch care!
Love the bicepulite term! My arms looked awful the last couple of years even though I am pretty thin. I wondered if it was due to age, LE, or not exercising my arms for four years because of difficulty with expansion and implants. Once I had the implants removed, my arms immediately looked better - I have no idea why. And after I recovered, I was able to do more and using my arms helped tone them a bit further. Still not attractive at all. After starting to exercise more regularly this month, my arms are looking better. I have not even begun any weightlifting exercises yet since I am just coming off this arm flare, so maybe just lack of activity played a role? I have no clue about the cause of bicepulite, since many of you are exercising, even weightlifting.
I hate swelling in general, but especially when I am out doing something enjoyable. It's distracting and takes the fun out of it. I usually start mulling over in my head how much I want to go home, and I might as well be, because my mind is no longer focusing on what I am doing.0 -
Tina, yeah, doesn't it just have the ability to trash a good evening? And I resent it then so much.
It's been almost 4 years since my diagnosis, and I rushed to surgery and got LE 3 weeks out, so almost 4 years of LE, and it does muddle together in my mind, and yes, I'm working and teaching and traveling again, but while dealing with LE. It's not the same as before, that's for sure, and there are times I resent the heck out of it.
So, just when am I going to adjust to the new normal??
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I see a lot of you have made references to the heat which I presume makes the LE worse? Living in AZ this makes me nervous. Are there extra precautions to take when it's warm or is it just that it's more uncomfortable with sleeves, wrapping, etc? It's supposed to be 90* here today (gasp!) so cranked up the a/c for the first time. Other than hydrating more are there other things I should be doing? I'm not exercising the arms at all until I get in to see the new therapist since I don't have any sleeves yet.
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The heat, and especially the humidity, really mess with my LE. I get on the verge of freaking out if I am in direct sun too long, even if I have a ton of water to guzzle. It sucks. I used to love the sun and warm weather, but now it's my least favorite time of year. I would love to travel somewhere less hot and humid for the month of August. Or just hole up inside with A/C or sleep the month away. I was breezing along last year (in spite of surgery in April), and it was the best summer yet, so thrilling. Then August hit, and Whamo! Welcome to waterlogged living and compression.
I forgot to add that I pull out all the stops for August with self care. Tons of water, MLD and compression, good sleep, less caffeine, loooooow salt, no alcohol, healthy eating, and I guess this year it will include regular exercise and hulking.0 -
Barbie - I have LE in my hand too ... mostly in my fingers. It's worse on my left side. Mine hurt too .... like Kira said ... once the fluid is out the pain subsides. *sigh*
Kira - I have no idea ... this is the beginning of my second full summer with LE and I think it may be worse this year because I know how tough the summer can be.
Kate - It is GREAT that you can get to Binney's therapist! Because of no insurance and living in a rural community ... I don't have a therapist right now. Having a great therapist will go a looonng way in keeping things under control. For a lot of us the heat is a problem ... but again ... having a great therapist puts you way ahead of the game. We just have to be diligent. For me ... the summer means faithful MLD every single day, drinking tons of water, at least 30 minutes a day at the gym doing cardio (preferably incumbent bike) and eating whole foods with no preservatives and very low salt.
Tina337 - What is hulking?
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Have no idea why some of my above post is normal and the rest is in italics ... I didn't do that ...
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Dawne - Doing the Hulk breathing exercise Kira mentioned in the Breathing, Moving Fluid thread!
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Kira: Thanks for the Medicare thoughts. I'll pursue that further. And thanks for the link. I've tried two sizes of the Wear Ease bra and neither worked for me. Also tried on the Belisse in the store but they didn't have the right size so I decided to wait. Originally the LE doc said 4 months ago that he couldn't be sure how much was still (two month) post-surgical swelling. Hmmm - guess it was a mistake to wait & I should have pushed for PT then. Anyway, he wants me in compression before I start PT, but I may try to stick with the Danskin sports bras that I've been using 24/7 until I meet the therapist. I have had reconstruction, so it seems the product options are more limited. More homework to do.
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you guys have been chatting!!i couldn't even try to remember it all; nor comment, cuase i'd lose the page, f i went back.. so, i hope you all are doing good..
caught you're doing well, kittydog, and really glad your going to use binneys le therapist, kate..
i just wanted you all to know: it went WELL (maybe for the 1st time ) with my garments from Gtottfreid, and the new fitter...
i got a little "torgouqed " with Gottfreid.. they ASSUMED bc i ordered my gloves (lovely in black) at the same time, as my sleeves, they would make me "short" sleeves.. i ordered longer gloves btw so the sleeves were really short...
we sent them back, told them they were seperate orders, with seperate rxs.. then, i had a big discussion with the "dots " on the sleeves.. the top was 1 level high little dots. fitter ordered it wider, with dots, and please add adhesive dots to the gloves...
THEY got it perfect!!!the longer gloves will work so much better, and not slip. since they added the "dots" anyone who orders gloves, order those on them they're great!!!!
the next set will be juzo, or jobst.. for everyday, i like the material better. will send those instructions the 1st time...
i hope we all will do well in the summers heat (im with Kate; its already here, in so fla..)
i also got a stiff warning from the endo about the extreme low salt diet.. seems it was part of turning hypothyrois.. so, be careful have some, he told me to make sure its iodixed.. cking out kelp, for iodine.. but don't know if i can take it with ms.. gotta ck with supplemental specialist. i know spirlina i can't take with ms.. i hope kelp will be ok. then, i use sea salt, but i don't think that helps with iodine.. what a balancing act!!!......3jays
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Tina337 - thank you. I haven't been to that thread...I'll check it out. Thanks!
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Hi ladies,
I am fortunate that I only have to wear a sleeve for travel (so far) for mild truncal/breast LE. Still seeing therapist once a week for MLD, stretching and breaking up the cording I got underneath the breast. I was happy they were able to get rid of it so quickly. Six weeks ago I got an Rx for compression bra and cami. I've been wearing Jockey and Bali camis a size smaller (and one other brand I can't remember) that I like pretty well, but figured I would try them, especially since insurance will pay. It took 3 weeks to get the cami and I am les than enthused about it (it is Naturalwear, made by Trulife?) and another 3 weeks have gone by and I have yet to get the bra. Not even sure what brand she ordered. Is that normal to wait so long? She really didn't take measurements beyond what I normally wear in a bra (this was the gal at the prosthetics shop), so don't think it is being "custom" made. If I don't get a call this week I think I will ask therapist to write another script and I will go to a different shop. Anybody know this brand? Or am I just as well off sticking with my over-the-counter camis?
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Jo, that rots!
Still, I gotta say, they're right that LE therapy is generally not cost effective. Too much one-on-one time that can't be assigned to aids, like PT does. We're expensive women!
I do think, though, that BECAUSE your insurance shut down the facility, they'll be obliged to allow out-of-network visits. Check it out, and remind them of WHCRA if necessary. They do have to provide LE care when it's bc-related.
Let us know!
Hugs,
Binney0 -
hi, I have mild LE in my left arm and have a sleeve and glove. Most of my swelling is in the lower part of left arm and wrist. My question is does the LE develop only in the limb that the nodes were removed?
My surgery was on left breast and nodes removed from left arm but I also have swelling in my right wrist! Does LE affect both sides or am I just puffy for other reasons.
thanks, Jean
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Jean, typically we only get "secondary" lymphedema in the quadrant that has been disrupted by surgery/radiation. However, there are recent studies that show that some of us who get LE carry a gene that people with hereditary--"primary"--LE carry, so we can have a tendency toward getting lymphedema. Primary LE tends to start and be in the legs.
So, your other puffy wrist--it's highly unlikely it's due to your left sided treatment. There is a woman who posts on the boards who developed LE in her non-surgical side, but it's so rare.
LE can develop after chemo in an arm or due to other trauma. Or the wrist swelling could be due to something that's not LE.
Do you have an LE therapist who you could show it to?
One final thought: there was an article on LE and they studied the "lymphatic pump" and showed that in women who had LE, the lymphatic system in their "good" arm was substandard also.
One woman went to a lecture by Marga Massey--a surgeon who is skilled in LE--and she said that some people have lymphatic systems that are like 4 lane highways while others have narrow roads, and the narrow roads can't take a lot of abuse before they back up.
Kira
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Oh, here's my grrrrr moment today: I'm having a colonoscopy tomorrow, and I was telling my coworker about the need to wear a sleeve/the g-sleeve/wrap my fingers tomorrow, and she said "I forgot you have to worry about that." Well, I do.
And this prep stuff is not a lot of fun.
I hate being a patient.
Kira
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All best wishes for careful caregivers, quick and easy procedure, and "clean as a whistle" results tomorrow!
Let us know how it goes as soon as you're able.Hugs,
Binney0 -
Hugs Kira. Good luck.
Jo-5, I sure can relate to your frustration. I hope things work out for you and easily.
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Oh not a fun night for you Kira. Good luck tomorrow. We know what all you have to go through that others do not.
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Good luck Kira, make sure that you drink plenty of water tomorrow, the salty prep really played havoc on my LE. I should have wrapped the night I did the prep, because my hand was really swelled the next morning.
Sheila
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I have yet to put my garments back on since surgery. Leg is puffed under arm is puffed but my hand looks better than before surgery. I did start back with some MLD on my arm last night. Not very good at clearing the underarm node yet but I figured some is better than none. I don't get my stitches out until Wed. Then the work will begin in getting my leg back down. My thumb feels so much better but my middle finger doesn't seem right. I am thinking I will need some PT for it.
On the bright note.. I am a little less than 300 for my out of pocket max now. lol so next surgery she cost me little of nothing. It also means my LE PT and Fitter will fight to get me a pump!
Kira sorry you had to be a patient...for that test. yuck..one more year before I have to have it.
Jo sorry you lost your PT. Good Luck finding a new one.
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Good luck, Kira!
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Yes ... thinking of you, Kira!
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Kitty, hang in there! One step at a time and you'll be back in great shape before long. (Grrrrrrrrr--patience with that kind of thing is not my strong suit
!)Sheila, brilliant idea to wrap the night of the stupid prep!
Binney0 -
Kira- I find it so hard to get psyched for the simplest doctor appointments anymore so have great empathy for you. I know it can be a difficult procedure with all the prep. Hope all goes well and it's over quickly.
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Kira, adding one more good luck and good drugs (in your foot, lol). And a no swell day!
Kitty, hope the swelling gets back under control but good news about your hand looking good and getting that pump approved.0
