ALL THINGS Gloves and sleeves
Comments
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As Linda said, I've found that Medicare does not pay for sleeves & gloves. If Medicare doesn't approve, the supplemental will not pay - whoever they are. I am however on straight old fashioned Medicare A & B and not a Medicare Advantage plan. Maybe Florida Blue is that kind of HMO policy & their rules are different.
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I'm pretty sure medicare doesn't cover sleeves. I know some group is fighting for this
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lindaKR- Yup I called Hanger Supplies today to ask if insurance paid for a gauntlet or glove and was told not at all. Nothing of any elastic nature is covered by Medicare! Good news is that we maybe talking $200 as oppose to double that a custom made one- yikes.
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GrammyR - Hanger gave me a discount because my insurance didn't pay. I paid $160 for my custom.
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GMAfoley- Hanger told me around $400 for a custom. My DIL said it would be cheaper to drive to Canada for it-ha!
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GrammyR, I'm in Canada and I just paid $427 for my glove and $240 for my sleeve , both custom.
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chip, that is close to what I paid in Canada too. Elevarx brand. Any one know about Jovi nights sleeves. Iam being fitted Wed.for them.A vest too.
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chipmunk47- yikes, guess that would definitely not be worth the trip then. My therapist today gave me all the measurements so I can shop around. She told me North American Rehab has some lower prices and Juzo for the sleeve and Medi for gauntlet. I have pretty long arms so hoping I will not need customs. Will peruse online tomorrow.
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Try Brightlifedirect online for great prices. A lot of us shop there. A good return policy keeps us happy to
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I too have had excellent experiences with Brightlifedirect
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gmafoley Were was the Hanger store? and what kind of custom did you get? i think its the one piece glove part that made mine so expensive? 😢
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Went to Hanger in Roseburg and I got a juzo custom sleeve.
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hugz4u and lago- thanks for the info. It is all so mind boggling to me. One thing is I have super long arms 45cm so even a " long" may be a little short, narrow lower arm but a larger upper arm. I also have a lot of allergies so wondering about stucky stuff around the top. I also have long fingers and would benefit from the gauntlet w/the longer finger parts.
Gmafoley- Hanger does have a local where I could perhaps try them on -if they would let me. I will call first. Am sure most of you have more than one as they get grimy very quickly.
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GrammyR,
I was surprised to find I was allergic to the silicone that is used to keep the sleeve up. The first time I wore it for any length of time, I had little dot impressions on my arm for a week. Red and itchy. Got a new sleeve w/o the tacky band. Stays on my upper arm fine. Good thing I opted for an LX instead of MX with silicone implants. That would have been an ugly journey with an allergic reaction to implants.
I too have lots of allergies, some rather strange.
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Grammy I have long arms too. That's why I used to order the long length in the medi95. I'm wearing my last pair. We'll see what happens in May when I switch to a new brand. The new Medi harmony doesn't fit me. My wrist is too small
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Lago - I had the Jobst Bella Lite read-to-wear sleeve in a small/long. It's long enough for my arms, but like you, not tight enough for my small wrists. I had to go to a Juzo custom. I'll be interested to hear what you end up with in May.
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Minus I'll let you know. If you don't hear from me by June remind me.
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I have really been struggling to find the right glove and sleeve that fits right and doesn't make the top of my hand puff up like the stay puff mashmallow man. Also they are all so painful. Where and how does one go about getting a custom glove/sleeve. I live in Portland Oregon. Any suggestions on manufacturers?? All I ever am told is how expensive they are and that about the only response I get. I did get a chuckle when someone said they punched themselves in the face. I have done that a couple of times.
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You may have the wrong level of compression for your body. Sleeves/gloves come in different levels of compression. Some need higher - some lower. Me - I have to have lower and it works great. High level makes my hand swell rapidly and fingers turn into 'stuffed sausages'.
Talk to your LE Therapist for help with getting the right garments. I have no clue about trying to order custom 'on your own'. Mine are custom - have to be because learned after LE developed learned that my fingers are a bit 'webbed', so OTS gloves literally cut as in the make sores to the skin between fingers.
My care is through VA so I see my LET guy and he orders my garments for me twice a year. He orders - I get 2 new sets twice a year. It did take several different sets early on before got them down to fit good/comfortable, now he just sends an order and they come fitting good.
We are each so unique so what fits/works for one will not necessarily be what is right for anyone else.
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runnergirl- You likely have Hanger Prosthetics down there as we do in the Seattle area. They told me they ONLY do custom fit but am not sure which product they use. They told me could be around $200- $400 price wise so I went with BrightlifeDirect instead for my first - around $60 . Am waiting delivery. I have not ordered to glove as yet- so expensive. My social security barely covers my rent and utilities. I wonder if anyone has had help from Komen Foundation- maybe worth a try.
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Thanks for your reply. I am very petite and small boned. The compression I have is the 20-30mmHg Is there anything less? . Because yes it almost seems like I do better with nothing on. My fingers do turn into sausages and the top of my hand swells horribly. I am about out of PT visits ( I see a certified lymphedema theripist my new plan year starts Oct 1, 2015) so have been hording the last few. I have been trying to get a flexitouch pump approved by my insurance but they denied. I am on to round two appeal. What a bunch a crap. I am so disheartened with our health care system at times. I have MODA insurance; I wonder how much they pay a year to have their name placed on what used to be the rose quarter arena her in Portland Oregon where the Trail Blazers Play. Have you found anything that works for the white hot poker pain?????
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This is to LindaKR:
Just wondering you mentioned a one piece sleeve and glove. No therapist has ever mentoned that to me. Where did you get this custom ordered. I see you live in Oregon. I lve up nin the Portland area.
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Somewhere in all the mounds of written and online material I have read I came across a pie chart showing how much time doctors receive studying the tymphatic system in medical school in the US. I am writing a second level appeal to my insurance company since they denied coverage for a flexitouch pump, I would like to include it. If anyone knows what I am talkig about can you point me in the right direction. Thanks my chemo brain persists:(
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Runnergirl, Dr. Stanley Rockson of Stanford did the survey of medical schools that led to his observation that doctors get 20 minutes, on average, of training about the lymphatic system. I tried to find the quote with a quick search just now (I'm pretty sure I read it on his website once upon a time), and I did not find it. You might watch his presentation here: http://lymphaticnetwork.org/news-events/new-and-em...
And I think it might be the same presentation that's linked here (but maybe it's different?): https://stanfordhealthcare.org/stanford-health-now...
I don't see a direct email or contact option to reach Dr. Rockson on his Stanford website, but you can use the contact form on the LE&RN site to ask them to help you find the reference, or to reach Dr. Rockson to ask about it. He's a kind fellow who once answered one of my questions I emailed to him (but of course, I don't find that correspondence now, sorry!)
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This page quotes Dr. Rockson and that MD's get less than one hour of training on LE in med school.
It is estimated that 6-10 million people in the United States have lymphedema, yet the condition is poorly understood and often misdiagnosed. Dr. Rockson cited a study that found less than one hour was spent on teaching about lymphedema in more than half of the four-year medical curriculums in the U.S. About 25 percent of medical schools spent a total of less than 15 minutes on the disease. At the Stanford Center for Lymphatic and Venous Disorders, Dr. Rockson said he sees about 300 new patients every year.
runnergirl26: Is your white hot poker pain constant? I have that at night, and was just diagnosed with carpal tunnel. The right side (dominant arm, but not LE) has the hot pain, and the LE side is much milder,, just numbness. MD thinks that the swelling from the LE has contributed to the carpal tunnel on the left side even tho the swelling is barely noticeable in my arm. (truncal is the big problem for me) He explained it like a pregnant woman might develop carpal tunnel during her pregnancy due to the extra fluid in her body. I guess it makes sense, although when I told my LE therapist she seemed a bit skeptical. I haven't had time to really research it either. Meds that work for that type of pain include Neurontin (gabapentin, available as generic) and Lyrica. My doctor likes Lyrica better but my insurance won't pay for it, so he gave me a bunch of samples. I just take it for sleep cuz for me that was the only time I was getting the pain. So I'm wondering if your hot pain could be carpal tunnel or any other nerve condition,,, and not just the LE?
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Runnergirl. Yes I just watched a you tube on that. I saw the pie chart. It was a Standford video. Rockson also talked about LE drugs coming down the pipeline but I heardt thru the grapevine that it was a long way off although he sounded hopeful. I wish I could remember more about it .
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How are the custom sleeve and glove compared to any off the shelf ones you tried?
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I find my custom sleeve fits better than the over the counter - my elbow area isn't loose as with the OTC; wrist is tighter, and it doesn't slide as much.. Down side is I had to send mine back 3 times before it fit right.
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Runnergirl, Anything I tried off the shelf made me worse. I went without anything for a while (months), at the advice of a couple of lymphedema pts (because I was having so much trouble finding something to fit), but slowly my arm swelled up to about 1-1.5cm from where it is now (it has finally gone back down with my sleeve,) which was very painful for me (including worsening an ulnar neuropathy which lead to months of burning hand pain on my pinky side) and also left me now with some spots that are firmer than I'd like and are hard to drain and I'm not sure when/if ever I'll be able to make them go away now. I also had to be super careful and try not to use my arm because anything (writing, typing, cutting, too much walking) would make it swell and it would always feel yucky and heavy by the middle of the afternoon. Now I can even lift light weights and exercise! My custom is a glove and sleeve one piece, and helps a lot with hand swelling (any double compression at the wrist ie from a glove and sleeve combo backs up my hand) and also with my upper arm swelling (I have a cap over my shoulder and a body strap since anything around the top of my arm backs up my upper arm badly). The brand I use is jobst. Maybe you could call them (or one of the other custom brands) to see if they have a fitter near you they work with?
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just got my Lymphedema Pathways magazine and they have a ad for Lymphedivas GLOVES! Thanks Josh (our lymphedivas hero
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