New Sleeve/Glove = Disaster to my Hand

garnet131 · October 2011

Well, after a 5-week wait (incl. customs delay), I picked up my 2nd Medi sleeve yesterday & wore it today, or tried to. Sleeve felt good at first as I wore it for approx 45 min while I got ready for work. Added glove before I left the house and had it on for less than an hour before my finger tips started feeling numb/tingley and I saw that my thumb & little finger were turning blue. Took off glove & wound up running home at lunch to switch to first set that I've had 2 months. By then my hand was puffy & arm starting to feel strange.

Now have friend Tribby on & hoping it will do its overnight magic. Wish I had decent camera/ computer to take pics to show difference in the 2 gloves. It's no wonder the new one was tight--the thumb is about HALF the width of thumb on other glove and way smaller than little finger on glove 1. Both thumb & little finger look silly in relation to the other fingers b/c they're so narrow!

Additionally, all digits are almost 1" longer than other glove so that my fingertips barely stick out, esp thumb. Fitter asked me yesterday about having thumb shortened but I said I'd try it first, mainly b/c I didn't want to send it back & have only 1 for another month. This set is from different fitter b/c I vowed not to go back to first place b/c I felt their customer service was horrible, including saying that Medi wasn't available in black and putting the Tribute overwrap on the bottom. The only good thing about the new set is the color--the black is sharp looking but sure doesn't do me any good if I can't wear it.

I'm so frustrated & feel like I'm about to lose it--don't want to deal with all of this. Well, now the tears I've been fighting all day finally came. Maybe that's a good thing.

Garnet

brazos58 · October 2011

Hi Garnet

Hugs! My Medi550 compression shirt must have been keeping your glove/sleeve company in customs as I was waiting as well until last week. Just wore it last Monday for the first time and felt fine... each day I got worse with the Truncal Lymphedema....and was so miserable yesterday, i was beyond frustrated. I sent it back as it was torture.

Can totally relate to the different makes of gloves, how they vary.... and have had the purple/ cold thumb issues myself... drop a line if you want to Vent.

blessings

brazos

garnet131 · October 2011

Yes, Brazos,

I was thinking the same thing about our garments traveling together! In fact, it was b/c I saw you got yours that I checked back to see if mine was in, and it was. Big whoopy doo as it's turned out.

I read about all the issues you're having. IIRC, you're going to see your therapist, right?

I've been thinking about calling mine but have reservations b/c now that I've found this forum (shortly after therapy), I'm not sure if I have confidence in her anymore. In fact, tonight I researched local LUNA members w/thoughts of finding a new one.

Dealing with the body issues is bad enough and it's even worse when those that you turn to for help don't know what to do or mess it up. And it takes up so much time and energy, not to mention money!

Guess my little cry did me some good as I feel a bit better--or maybe it's just that I'm tired.

Hugs and blessings back to you,

Garnet

Binney4 · October 2011

Garnet, I'm so sorry for this new frustration! I can tell you (because it sure isn't obvious from where you're standing right now Frown ) that you really are going to get this straightened out, and it really does get easier.

But that's not much help at the moment, and it makes me so sad for you. One thing we've discussed here a bit in the past is that for some reason black garments always fit tighter. When I order black my fitter fudges a bit on the measurements for that reason. Just a heads-up in case it should ever help you.

All that aside, you really have been through it with this garment business! Tongue out You might try ordering from a US company for a quicker turn-around, and easier for the fitter to contact them and get it right.

The body issues are no small thing. In fact, they're even less understood by our medical folks that the purely physical aspects of LE (which is dismal to begin with). Elise Radina did a survey of the psychosocial aspects of LE a few years ago and rocked the LE professional world with her findings about how truly difficult this is to deal with. No surprise to us, of course, but it's a comfort anyway to have our reality validated by somebody -- ANYBODY!

Don't give up! With your help your fitter -- and maybe even your therapist -- can get this right. They have to learn about things like the Tribute oversleeve somewhere, and you may well be their only source. They don't wear them, after all.

Hang in there! Gentle hugs,
Binney

kira66715 · October 2011

Garnet: my first custom Juzo sleeve took 5 tries! Had to call in the rep.

I saw my LE therapist yesterday, and she wears compression stockings and she's really frustrated as Juzo needs to make the top 2.5 cm bigger and she's on the third re-do...

Brazo: I had high hopes for the medi truncal garment, and then I saw and felt it. I just don't like the fabric--it felt too rough. You should let medi know, as they just rolled it out a year ago. But good move to send it back--no reason, ever, to suffer with bad compression.

Once, after many months and many gloves, we finally got it straight--I had the fitter order a second glove and it came with a huge forearm--she just shook her head and sent it back.

The rep tried to explain to me how the machines work, but honestly, I didn't care....

Kira

Lunakin · October 2011

I had an Rx for a custom garment for my trunkal LE, had advice from my PT, and went through several appointments with long drives to and fro. Each version did not work for some reason. I finally just said "never mind" and gave up. The owner of the medical supply place didn't seem well informed either and I live in a large city. Oh, it is aggravating and disappointing.

Binney4 · October 2011

Lunakin, did you ever find anything that works for you? Sorry, but I don't recall what you came up with. I use a WearEase cami or a WearEase compression bra. Not custom, but the fit is good and they're very well made. There are other ideas under "Compression Camisoles," "Compression Bras" and "Breast Binders" section here:
http://www.stepup-speakout.org/Lymphedema_garments.htm

Be well!
Binney

garnet131 · October 2011

It is indeed aggravating and disappointing. After a slight flare last weekend's (wrestling with a tuna can and camping), I had good luck in getting hand/arm down to normal by Tuesday, but not this time. In desperation I even wrapped yesterday afternoon-- just took it off to see that while hand is slightly down, my knuckles are still puffy and wrist/forearm looks worse. Think maybe I was too tight around wrist. During my wrapping stage about 2 months ago, I got better at wrapping over the 2 weeks I did it, but never did get expert at it.

Guess I'll have to call therapist tomorrow for appointment, though think I'm only allowed 2-3 more visits per my insurance.

Mentally rather down, as I feel overwhelmed and struggle to accept all that dealing with LE entails. I'm not a confronter and don't look forward to dealing with the whole glove/sleeve redo. Thank you all for your words of encouragement.

Garnet

Lunakin · October 2011

Binney, no, I let things drop. I really do need something for the LE which is above my MX scar and to medial to my shoulder, extending over to the front of the shoulder itself. Some camisoles sorta work. The step-up-speak-out reviews have been wonderful! It is a great site.

I need to play around with compression T-shirts & maybe camisoles + Ace wrap. Trunkal is such a pain. And like Garnet I don't like confronting supply people .... I was so appalled that the person I dealt with just did not get it. I expected her to have more knowledge and initiative than she did. Grrr, I thought the trunkal was obvious when I had skin puffing over the edge of my bra on the LE side but not the other, but the sales rep just couldn't see it.

I'm thinking those Ninja Sleeve garments might work for my shoulder-chest LE along with a camisole....

Thanks for everyone's stories and suggestions.

kira66715 · October 2011

Garnet, it really does get better. Sometimes I wish I kept a diary--although my frantic pm's to Binney would qualify--and I'd realize how much better it has gotten.

The initial adjustment, both in learning how to manage it and accepting the need to factor it into your life is extremely hard.

I have left the fitter with garments and felt so sad: getting expensive items that I wish I didn't need--and the hassle factor, with fitting, manufacturers, insurance is huge.

Hang in there, it gets better--it really does

Kira

Binney4 · October 2011

Lunakin, how frustrating! And nothing you try is exactly free either. LE is a pricey condition to have! Money mouth (Hey! that's the first time I've used the money-mouth emoticon!) Please let us know if you discover something comfortable that works for you.

Garnet, it's just not fair that a can of tuna can result in a new disaster for your arm! Frown Hoping you're soon feeling on top of the stupid LE again. I'm not a confronter either, but the women here do give me courage to stand up for what I need. We've got your back! Wink

Be well!
Binney

garnet131 · October 2011

Lunakin, I hear you about the lack of knowledge and initiative with the fitters. Guess I expected too much, such as being shown various brands and options. We have 3 in town, though one is dominant and one is brand new, which is where I got the "stiletto finger" glove. Glad to say that my second round of wrapping yesterday brought hand down some, but still seeing therapist this afternoon, as arm seems to be bigger than it's ever been.

Kira, Binney, and everyone here--your words mean more than you can know and are probably the key thing keeping me going when I just want to crawl back in bed and put my head under the covers! Thank you so much.

Binney4 · October 2011

Garnet, we've all spent time under the bed (with a plate of brownies for comfort!) Frown

The next best thing to a fitter who has a range of products to show you and the skill and know-how to get it right every time (which doesn't exist in the real world as far as I know Undecided

) is a fitter willing to try again, and one who's willing to try a new brand or product that you bring to her attention. Hoping the stiletto-glove fitter will be up for learning as she goes along! <sigh!>
Binney

octoberbaby · October 2011

Today, my sleeve arrived along with the "gauntlet". I have no idea how to get the sleeve on. At first I thought no big deal but after struggling for 20-30 minutes, I wanted to throw the darn thing out or send it back. I saw on the internet that there is some tool to help with getting the sleeve on but cannot seem to be able to purchase the tool anywhere. I need help!!!!!

Binney4 · October 2011

October, do you have a therapist, or at least a fitter? There should be someone with experience to check the fit for you and make sure it's right for your needs. Whether you already have lymphedema or are trying to prevent it, checking the fit is essential. Here's a page about garment fitting, but it's no real substitute for a trained eye:

http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

The section on that page called "What Else Should a Fitter Do" explains how to get it on. (It also shows donning aids and has links to where to find them, though most people don't find aids necessary, just convenient).

If that doesn't help please ask again and someone here will have a good idea how to help. Nothing about lymphedema is ever easy! Frown

Hugs,
Binney

garnet131 · October 2011

Update--Looking at the SUSO list, I found that one of the 3 therapists at my clinic is LANA certified. Of course, I had been seeing the other two, but it worked out that yesterday's appt. was with the LANA person. She said that all 3 were Vodder trained by the same person and are equally qualified, just haven't taken the test. However, I really liked her and learned more about deep breathing--purpose and method.

My arm measurements were erratic, some up and some down from my release in early Sept. so scheduled a few appts. with the main goal to teach me MLD, which they didn't do before. She reassured me that I did the right thing by wrapping.

I gave her info on this website, SUSO, and the new fitters in town (suppliers of the stiletto glove). She echoed what other therapist had told me that they've been having many problems with the dominant fitter company and said she's going to stop in at the new fitter today when she works at a clinic on that side of town.

So all is good on the LE side of things--now just have to deal with getting the stiletto replaced. Got an e-mail back from them and plan to drop off the glove tomorrow morning when I have annual gyn appt on that side of town. Told fitter to mention that I sent her, so hopefully sending business to their new store will motivate them to make me a happy customer! Money mouth

Garnet

New Sleeve/Glove = Disaster to my Hand

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