ALL THINGS Gloves and sleeves

tessu

Thanks Kicks for your explanation. My hands are not like that, but yes theweb between thumb and 2. is higher than the rest and gets irritated with the Lymed gloves.

I was surprised to read in my chemo group here that one woman who developed arm and hand LE is getting the intense decompression therapy (round the clock wraps for a week or so) then glove/sleeve fitting now, in the middle of getting her chemo infusions. Both LE therapists I've seen here say that has to wait until after infusions are over; just wrap "loosely" "some" for now.

My skin has healed enough I am back to wrapping, 4 hrs yesterday evening (to make sure skin could stand it). Wrapped today for 11 hrs using foam roll altered to leave room at the base of my thumb on the finger side, and folding the SS bandages like the new LET did in the pics above. Managed to avoid the too-tight pain at the thumb base. My arm, other fingers, and back of hand cleared fairly well, but thumb actually got worse (I measured). After unwrapping, tried using the IMO too tight Jobst gauntlet from the hospital, thinking it would maybe decompress the thumb, but looks like it made everything worse. Oh well. Trial and error.

LE always comes back if I am unwrapped. I am still afraid to sleep wrapped, and I still don't have a usable glove, so I can't wear the sleeve I have. I AM getting measured for a custom version of thr Jobst glove Monday; will also ask should I get a lighter (class 1) sleeve, as that's what the glove will be, my OTC Jobst sleeve is Class 2.

So ---- is this back-and-forth compression/LE from no compression doing harm? It does significantly decrease the pain to where I don't need pain meds to sleep, that's motivating me. But having all the swelling come back is depressing.

My poor thumb after wrapping (actually all the time now, as I don't know how to decompress it):

hugz4u

Tes, showing my practice attempt of Vodder method of gauze wrap on the wrap thread. Eeeeks, still learning. When I burnt my hand bad before I truly had LE the therapist just wrapped the hand as I will show in the picture. I usually just checked in every month with the therapist to have me checked for the beginni

hugz4u

tes, check my wrap thread to see my vodder method gauze wrap on my hand. I amstill learning.eeeks steep curve here

tessu

Thanks, hugz4u. Yes, I've seen your illustrations and read a lot of your earlier posts, which have been inspiring and helpful Your pics show wrapping with folded gauze strips. I tried folding 4cm gauze but while wearing it the overlaps separated; I am going to try that again with folded 6cm gauze. My Vodde LET wrapped with open gauze; my attempts don't seem to decompress the thumb or fingers at all, maybe I'm not layering enough, or maybe I need some tension...This truly is trial and error! I still only wrap days because of a couple wake-up-in-pain wrapped nights The two wraps the Vodder LET put on were too tight, painful after a couple hours. The wrap the other LET I went to once wasn't painful, but didn't decompress fingers-thumb-back of hand at all She used cotton batting instead of superlon foam rolls and open gauze.

You have in the past posted about the silicon beads at the top of Jonst sleeves giving you raahes. Could you wear them inside out? So the silicon doesn't contact your skin? Maybe the silicon has absorbed some of the detergent you wash the sleeve in? Just a thought from someone with so many contact allergies I haven't been able to wear makeup or even colorless winter lip balm for over a decade.

I am still working through all 150+ threads in the LE forum and thank you and everybody else for so mich helpful advice and wonderful support

Sierra

Hi Carol: I just saw your post today, and would like to send light and love for your Dear Mom, so sorry

and also for you, a very challenging and sad time take good care.. Sierra

For Tessu sending u a big hug also.. my goodness those thumbs

and to all others in need of one this day

Sierra

hugz4u

Tessu. I didn't fold my gauze, it's 4 cm wide gauze and it works perfect for my short fingers. I have 6 cm gauze and so far I don't like wrapping with it. The trick is to wrap 4 times then spiral to the next level with the 4 cm strips. If you look at the closeup pic on other thread it shows that nicely.

I did sleep just in the hand wrap last night and it stayed on beautiful. Mind you that was sleeping and not moving around. Surprisingly my hand was a bit smaller and I am only stage 1 with no problems.so it worked.

That is a great pic of your thumb above. A pic is worth a thousand words. Yes try putting more tension on it. I really think you can get it down smaller with wrapping. Your consistency will pay off. I found that if I engaged too much conversation with my LEist while she wrapped it would come out tighter and I would have to rip it off. I think I excited her too much with interesting conversation.

Ok I got to get off the threads and do my taxes over again because the government thinks my medical bills (LE expenses and husbands snore appliances) I submitted were too high (7,000 dollars )and they have asked me show them receipts as they think I am cheating them.

Fortunately I keep all my receipts specifically in case the taxman requires them at a later date such as today. This is for 2012 year....oh brother! Yup LE gets you in the pocketbook every time as it's costing me 300 dollars to send the receipts to accountant to redo my taxes over.. Dang it anyway. LE Is the gift that keeps on giving.

tessu

Well, I saw the new LET today and really liked how she listened, answered all my question, and even told me where I can order supplies in bulk. I told her how much trouble I was having with thumb swelling and the other LET and my own attempts at wrapping making it worse. She wrapped yet another new way, and I kept it on for 11 hrs. So glad I did NOT decide to sleep in it -- it put more LE swelling in the base of my poor thumb and now even the web area, more than I've ever had up to this point I had even told her I wanted to switch my care to her --- but what should I do now? Ditch her and go back to the Vodder lady (whose wrapping also blew up my thumb --- but not THIS bad ) MY wrap this morning had my thumb looking better.

Oh well, at least it doesn't hurt. No time to re-wrap now. Gotta get sleep, it's past midnight and I have to leave 7AM to get to the lab for bloodwork tomorrow. Good night

carol57

Sierra, thank you. My mother is still hanging on, but we're told by hospice that it won't be much longer. I so appreciate all the support I am receiving here.

Tessu, I have a sense that despite the understandable continuing frustration, you're making progress--you understand what makes you swell, you're learning from the inevitable wrapping trial and error, and you know what to ask for from the therapist. Baby steps, but steps nonetheless! I wish you good luck and continued patience, and I'm sending you hugs.

tessu

Carol, I'm so very sorry your mom's health is failing. I just hope her hospice caregivers are as kind and supportive as my dad's hospice people were ((((hugs))))

tessu

I'm not as confident as you are with my LE treatment.

I honestly don't knowhich LE therapist to stick with --- Both did wraps which made my thumb LE worse. The first LET's wrap started it, then I could not reach her and she never answered emails or texts; her scedule fills so quickly, there's a couple week wait or more to see her. Also, she does not approve of self-MLD by the patient. But Vodder-trained in Austria, goes regularly for update classs there, over 20yrs experience. Encouraging me, however, to just do nothing until chemo is completely over, then the intense CDT.

The new LET is easier to get in to see and contact by phone. I feel I can communicate with her better, and she encourages self-MLD. I described my thumb problem, showed her photos, and also expressed my concern that I might be compression rebound-sensitive. She seemed to understand me (asked IMO appropriate questions) -- then wrapped me tighter than ever, resulting in the worst ever LE swelling in the thumb and base area --- and now 4hrs after falling asleep unwrapped, now ALL my fingers are also swollen, stiff and sore (luckily not as bad as the thumb, but I can barely close them to pick up a pen. Rebound? At least I am confident she will call me within the next two days as promised -- she did last time. She has 13 yrs experience, is trained through a (the?) respected Finnish LE organization and does modified Vodder wrapping. She is also a neurological disease physical therapist.

So I am again scared about losing use of my dominat right hand to LE, and don't know whom to trust to work with me to try to prevent that

Any opinions here or by messaging would be extremely welcome.

marijen

That's a tough decision to make Tessu, you have had a very rough time. I would be beside myself. If the new one had just have not wrapped you so tight, everything would have been ok? Maybe you can sleep on it and call her in the morning? You should be able to be straight with her, see if she gets defensive? Maybe her answer will surprise you? There is also a new third choice, unknown as of now. Sometimes the answer just comes in the middle of the night. The first one isn't much help if you can't see her for weeks or talk to her because she's so busy. You weren't happy anyways. I'm sure you'll get some more help with this.

tessu

Thanks, Marijen. Maybe part was wrapping too tight (although tighter wrapping is what's done during CDT). The first LET told me to wrap without tension until I learn better and until chemo is over. But I think the problem is at least partly also finding the proper placement for the roll foam the first LET uses or the thin cotton batting the second LET uses. Binney suggested sewing myself a "chip bag" unless I can find them here in Finland. In any case I'll have a phone control with the new LET tomorrow

marijen

Great Tessu! maybe just trying to do tighter during the chemo is the problem. Let us know. Be extra nice to yourself.

LindaKR

Tessu - I found out that some of the swelling in my thumb area was due to joint degeneration, I have to have very light compression over my thumb joint or I end up in a terrible mess. It was me that discovered the issue and suggested it to my therapist, she's always open to listening and adjusting treatment accordingly. She wanted to try using kinesio taping in the hand area with a sleeve, but no glove - maybe a gauntlet.  But I ran out of visits and haven't been able to get back in to see her (my schedule, not hers).  I have custom glove finger to axilla compression garments, the lady that fitted me measured really lightly where it goes across the base of my thumb.  Maybe you have the same problem with your thumb joint.  It seems to be a slow learning process for dealing with this, and just when I think I've ot it figured out, something else pops up.  Good luck!

hugz4u

I would pick the better communicator and the one that believes in self Mld. Then I would tell her that your feeling wrapped too tight and it's causing thumb problem. Or you could find a third person but the communicator should be willing to listen. Bring more pictures to her every time you have a problem.this could be a trial and error thing. Hang in there😉

tessu

LindaKR: no joint degeneration, just LE in my thumb and fingers. But good idea -- thanks for mentioning the possibility

Yes, I've pretty much decided to stick with the newer LET if only because we communicate better. The first still hasn't answered my email. She may be more fully trained (her workplace said she was gone for a week because she was teaching Vodder skills in another city), but the difficulty in communicating with her left me so frustrated. Also, I guess I'm learning that LE treatment ends up being mostly do-it-yourself trial-and-error anyway...Like now. I just had chemo last Thursday, and still have a massive dose of dexamethasone tomorrow (which causes water retention over 3kg for me), and was advised not to use any kind of compression until that water weight is off, so several more days. But my finger swelling is SO painful, I'm going to carefully, lightly wrap today and see how it goes -- wrapping pretty much always makes me feel better. Since I'll be awake, I can remove it immediately if it hurts worse

runnergirl26

I have terrible le in my hand all the way to the tips of my fingers. Do the redi wraps have gloves to go with the sleeves I need to my fingertips?

I stuggle with this lymphedema daily.

denise-g

Runnergirl - wanted to give you a little hope.  I had LE in my hands all the way to tips of fingers when I first got it three years ago.  With ALOT of therapy, a lot of kinesio taping, and hard work, I don't even have to wear a glove or gauntlet anymore (sleeve only) most of the time.  If I am doing heavy work or flying, I wear the gauntlet.

I NEVER thought my hand/finger LE would go away - but it is under control...maybe yours will too some day!

Sloan15

Hi. Some of you have helped me before, and I'm hoping you can again. I went to the LT, and she was great. But, the nearest one is 2 1/2 hours away. I have a sleeve, a guantlet, and a glove. She said I was stage 0--things have changed now-- no noticeable swelling, but I had pain and stiffness. You ladies had me go in and she confirmed it was LE. Now, I've finished my 4th week of radiation. They are not radiating the nodes, so I didn't think the LE would get worse, but, it has. My arm is swelling, and now I have weird feelings in my wrist and hand. I have neuropathy from chemo, but I quit early for the SE. I thought the neuropathy was gone, but now I"m not sure if it's the neuropathy or LE moving to my hand. Sooooooo, I figured I needed some help.

First, I forgot, can I do the MLD with the sleeve on? I do it in the AM before putting on my sleeve, and then I do it several times a day. I wear my sleeve all day.

Secondly, should I wear the gauntlet or glove right now if I feel the tingling in my hand? In the past, when my arm felt tingly from the sleeve after 8 hours or so, I would remove it. Well, tonight I removed it and measured my upper arm and it was swollen AND my hand felt weird. I figured I'd be up for a while, so I put the glove on hoping for damage control. Is it okay to wear it for only a few hours even if it is not swollen? should I start wearing it all the time for a while? Most importantly, will I always have to wear it or only when it starts to feel weird?

Finally, what should I do if I have swelling and sometimes it goes down with the sleeve and sometimes it doesn't? It's 1-2 CM in my biceps and 1/2 cm in forearm. I've been wearing the sleeve each day. I have 2 more weeks of radiation, and I figured I needed to get this under control. I don't know how to wrap, so that Solaris Ready Wrap looked good to me! Will I need that, or should I just continue wearing my sleeve during the daytime?

I will set up an appt with the PT, but since the closest one is so far away, I may not get in for a few weeks. I figured, actually I'm hoping, some of you can help me so things don't get worse. Any help would be appreciated! You guys are so incredibly kind to give advice to those of us who are new to all this. Thank you.

lago

LE is a living growing thing. Yes it can change. I didn't even have radiation but I got LE. I know if I had swelling that didn't go down I would see a PT. I don't do MLD with my sleeve on. You should not sleep with your sleeve or glove unless you have a special night sleeve/glove.

I'm sure others will chime in

hugz4u

Sloan, sleeve off so you can move skin and fluid. You need to be reevaluated by a professional.let them know by phone what your experiencing and ask for ASAP.to bad it's so far away.

A glove or gauntlet is usually worn with sleeve to stop fluid from going into hand but you could be different.try adding the hand garment and see what happens. You can always remove it if need be, maybe try wearing it for 15 min to a hour for starters. Good to wear sleeve.. It keeps you from swelling more. But remove if it's bugging you bad. Put on right after morn Mld. First thing after you get up as this is when you should be smaller with fluid.that should help contain the swell. You could be stage 0 in hand but a higher stage in arm like me as you say you are swollen by 1-2 cm in arm smart for taking care of it before it progresses.

If your garments feel small don't wear them.you could be constricting your arm.if you gained weight this could be the case especially if your stuff is custom made

You must ask how to wrap. I'll let others also chime in on the ready wrap etc.

Thinking of you

carol57

I like the Solaris Ready Wrap because it's adjustable, where a sleeve is not. On the downside, sometimes I find myself tugging on it because if I don't adjust it well, it can tend to slide down a bit. Still I find it comfortable, a cinch to don, and it was a real life saver when I was getting horrid rebound swelling after doing PT related to shoulder surgery. I now wear it on that arm for all my exercise and it continues to do the job.

Update on my earlier posts: Sadly, my mother passed away two nights ago, comfortably and surrounded by our family. I was there to say my last goodbye. Thanks to everyone here who offered kind words during the past few weeks; from diagnosis to death was less than one month, and they were hard days, indeed. Mom was a BC survivor of 47 years, and it seems so unfair that she had to end her very long life (85) with another cancer. Sigh...we sure need a war on this insidious disease.

minustwo

Carol - my thoughts are with you on the passing of your Mother. Glad you were there to say good bye.

[Deleted User]

I offer my condolences Carol. It was good that you were there as she passed.

Sloan15

Carol - I'm so sorry. My condolences.

hugz4u

(((((((((((((gentle hugs Carol)))))))))). You and your family were such pillars to your mom in her last days. What a awful stressful month you all had. Thinking of you

tessu

So very sorry for your loss, Carol ((((gentle hugs)))). What a blessing that your mom was able to be surrounded by her loving family right up to the end. Wishing her and you and your whole family peace ((((more gentle hugs)))

doxie

Carol,

It's so sad that she was taken by another cancer, but good you and your family could be with her in the end. My thoughts are with you.

lago

Carol I'm so saddened by this news. Please take care of yourself in the next several months.

gmafoley

Oh Carol - I'm so sorry to hear the news - I made this for my Mother-in-Law's Memorial - Hope this helps you to breathe and know you will see her again.