Correct tension while measuring for gloves/sleeves?
I have been trying to read through all 150+ topics on this Lymphedema forum, but haven't found an answer. I am still a newbie, LE visible only since the end of September (although in restrospect the upper arm pain for several weeks before that was probably the start). And I am only half-way through chemotherapy. And I live in a smaller city in Finland, where LE treatment is not top-line.
Anyway, the hospital FT who handles all breast cancer LE patients pulls the tape a bit snug while taking measurements, and the OTC Jobst sleeve and gauntlet as well as the Lymed glove fit poorly -- too tight, although the measurement numbers are within the size range, not at their edge. I then went to a private LE therapist who measured by just laying the tape against the skin without any tension. I see her again tomorrow, was planning on ordering a custom glove through her --- but if her measuring technique is wrong, I'm scared to spend that much money on something that I can't return if it doesn't fit.
Also: after this whole weekend of reading posts here, I am wondering whether I actually should just wait until chemo is over (mid-January) before ordering custom garments, and just keep trying to wrap until then.
Or: to help at night, maybe order a Caresia night sleeve now to make wrapping easier instead of the @&#¥%£ foam rolls that won't go on smoothly no matter what I do, and which pop open halfway through, prompting a do-over (semi-successful wrapping takes me about an hour still). I could maybe use the Caresia both night and day under short-stretches? My LE has only increased my arm circumference max 2cm; major problem for me is back of hand, thumb, and first two fingers, so I'm thinking even after intensive decompression after chemo, the Caresia would still fit.
Thank you in advance for any comments. Binney's,Carol's, Kira's and many others of you have given me so much hope with your patient, informative posts here. And I apologize for my gazillion comments on the most recently active threads in the Lymphedema forum.
Comments
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tessu, no apologies needed for questions! ... and thank you for starting this thread. I think its a very important question about the measuring tension. I hear you on this. I have a guy who comes in and measures the more "difficult cases" and that apparently includes me. That said, it hasn't happened yet where I get a comfortable glove that doesn't require some extra measures I need to take, like putting small foam strips to stop the glove digging in to the webs of my fingers. I find they're too tight and my fingers turn blue. With the recent(ish) change with jobst having seamless gloves, it has made my latest glove tighter than previous gloves.
No doubt others will pop in on your other concerns, but just thought I'd mention about the tension when measuring.
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Thanks, Musical. I am myself considering ordering one of the newer Jobst gloves. But what did you mean about fixing the glove from being too tight? I got to borrow the Jobst glove, had to remove it after an hour because my fingers were turning white and purple. The very ends of the open glove fingers were way too tight, much tighter than the rest of the finger tube parts. So I was thinking I need to order a custom glove. But if you know how to fix an OTC glove, that would cost a lot less.
I do understand that the correct time to get compression garments is AFTER chemo is done, after the several-week 23/7 DCT wrap phase, when as much fluid is out as will go. But if I don't get a good glove now, I'm afraid I'll lose function in my very dominant right LE affected hand. It never shrinks completely to normal anymore after wrapping, and my chemo won't be done until mid-January
I want to use the glove for use when I am not wrapped -- making dinner, sewing, driving/running errands, stuff that is so difficult wrapped. If I do stuff unwrapped wearing nothing, the painful LE returns after only a couple hours (first couple fingers, thumb, and back of hand). I have had a couple scary errors trying to sleep wrapped, so at least for now, I sleep with nothing (and have increased LE when I wake up) and only wrap for part of the day, so I can monitor for pain or numbness. Today after 10 hours of a (successful! Yay!) wrap today, I machine sewed for two hours straight; my fingers hurt after one, and were so sore and stiff at two hours, I had to stop. Before LE and BC, I would sit and sew all afternoon.
The Lymed glove the hospital gave me fits poorly and rubs the thumb web raw, so I was hoping the Jobst would be better.
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Tessu, as you've noted, pulling the tape tight will give you a too-tight fit. It takes a lot of experience to do measuring accurately. Being tense or hurried when measuring can add tension to the tape, so experienced fitters learn to control the tension always. Your arm needs to be relaxed when measuring as well, so it should be resting completely on a flat surface.
The Caresia would certainly be a help with your arm, but I'm not sure how much it would help with your fingers. There's one that only goes wrist-to-axilla and one that includes a partial hand piece, so ask your therapist which would be best. Either way you'll have to do some finger wraps, I'd think (but I'm not sure!) It would still be workable after therapy--not a bad thing to have, as they last a long time.
I like the Farrow microfine OTS gloves, and they're loose at the tops of the fingers. Don't know if you can get them in Finland, but worth looking into:
http://www.brightlifedirect.com/farrow-microfine-c...
None of this is cheap! You'd think we'd have to be rich to qualify for LE, wouldn't you? That, and inventive, assertive, gutsy, adamant, persuasive, indomitable and unsinkable.
Don't apologize. In fact, take a moment to pat yourself on the back, Tessu--you're an inspiration!
Gentle hugs,
Binney -
Tessu, I haven't read your other posts so notwithstanding that, I'll say leave that glove off. It's very important to be measured by a qualified person. You also need to be shown by a qualified person to wrap but congrats if you have got 10hours success! But back to this -- If things are ill fitting it can cause more damage than good and at the sign of the type of discomfort you are describing you need to get those garments off. Thankfully you are seeing someone tomorrow. If it was me, I would just be extra careful with your arm and keep it elevated and don't overwork it. Lots of intermittent resting. There's no substitute for a custom fitted if you indeed need that. I'm NZ, so things will be probably be different to whats available, and so forth.
What I meant by my "fix" is after washing I put things like old felt pens and other various sized objects in the fingers to slightly stretch them whilst drying. This does help a bit while breaking in, but again it shouldn't be seen as a solution for a really bad fitting glove. Nothing is.
I SOOO hear you on the dominant arm business. My LE side is my dominant side, and it is truly something else to deal with.
Let us know how you get on tomorrow. All the best.
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musical: sorry I took so long to respond The end result: although the new LET made careful measurements for a custom glove, she decided not to order, wants me to wait until after chemo is over mid-to-late January (ie. agrees with old LET). So I will just continue to wrap. Custom gloves are very expensive here, and only a limited variety available --- with massive custom payments and return difficulties on anything ordered from abroad --- so maybe she's correct, I should wait and see what my new baseline measurements will be after intensive 23/7 wrapping for a few weeks after chemo.
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