Ordering Compression garment

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Polkadot1
Polkadot1 Member Posts: 60
edited March 2020 in Lymphedema

So I am trying to get in with an LE therapist but have an upcoming flight before I can get in to see one. Is it OK to order a compression garment based on your arm measurements or do you always have to be custom fitted or have ordered from a professional? I am sure it is better to go through a professional but just wondered what everyone's experience is.

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  • fac03
    fac03 Member Posts: 91
    edited January 2020

    My PT gave me a piece of paper where she wrote 20-30 mm and she specified juzo. I like juzo a lot but they are more expensive, I assume you have to know whether it is 20-30 mm or 15-20 mm. As far as fitting is concerned, my "fitter's" measurement was off and I ended up getting my husband (and later confirmed by the PT) to measure again. Therefore, in my case, I just ordered based on my arm measurement. I assume most of the medical supply shops will have a fitter. you can find juzo's retailer from this link http://www.juzousa.com/Juzo-Dealers and they will have a fitter. Can you just call your PT to ask whether it should be 20-30mm.


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  • OCDAmy
    OCDAmy Member Posts: 873
    edited January 2020

    I got mine at medical supply shop and they had a fitter there.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    I agree - you should be measured at least the first time.

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  • Momchichi
    Momchichi Member Posts: 133
    edited January 2020

    I was fitted at a discount drug mart and ordered my first sleeve thru her (reimbursed by insurance) then bought a few more, cuter ones online at my own expense once I knew my measurements.

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited January 2020

    Thank you all for your replies. I ended up talking with the OT that did my evaluation back in August and she actually had written a script for a garment back then. I don't know why she didn't give it to me but at least I have it now and have contacted a medical supply office to get fitted on Tuesday. At least I will have something before I fly but I am also trying to get set up for LE treatments as well. It is all so discouraging but one foot in front of the other!

    By the way, should I expect the swelling to get worse from flying? I am also going to Colorado in a much higher elevation than I'm used to. Should I be concerned about that as well?


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    PolkaDot - I did get some information about LEPT at the Memorial Herman on Loop 610 and Ella. I'll put it together and send as a PM.

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited January 2020

    Well I had my appointment with an LE therapist and my arm is actually smaller than it was 5 months ago and she said it measured the same as my unaffected arm. This isn't all that surprising to me since I feel the swelling under my arm in my armpit and maybe a bit to the side of my breast. I also was fitted for a sleeve and gauntlet and was told to wear a compression vest or bra and that all should be worn every day for the rest of my life. And not to wear anything at night. I told her that my swelling is worst first thing in the morning and gets a bit better throughout the day. So to me, it seems I should wear compression at night. Anyway, as all of you know, it is pretty depressing to hear. I asked about what stage and she said she would probably place it at stage one. I am terrified of anything that will make this get worse so am really thinking about cancelling our family trip to Colorado. The extreme cold along with the flight and staying at a high elevation for several days is just causing me so much stress and anxiety. I have read through the posts here extensively about truncal lymphedema and most say they wear compression at night so I am still trying to figure all this out. Thank you for letting me vent :(

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    Oh polkadot, yes - it is depressing.

    We all have to assess out own risk level, but I would not cancel my trip, just be careful. I've flown to Colorado & Utah, California & Maine, etc. I wear a Belisse compression bra for flying, put my sleeves on before I leave the house, and put my gauntlets on just before the plane takes off. Leave the sleeves on for at least an hour after you land. I generally carry antiobiotics when I'm away from my docs in case of a cut or scrape that might cause cellulitis, but I've never had to use them.

    I do wear a Wear Ease compression bra 24/7. My LE/PT liked that it came up so high in the back & under the arms. But it's much more comfortable than the stout Belisse for every day. Here's the link https://www.wearease.com/products/sydney-bra?varia...

    Also I don't know if you have yet seen the link to a great LE resource. I found it very helpful.

    https://www.stepup-speakout.org/




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  • purple32
    purple32 Member Posts: 3,188
    edited January 2020

    Polkadot1

    I so agree with Minus2...pls dont cancel!
    Check out https://www.stepup-speakout.org/

    As for ' the rest of your life; I wore my sleeve / glove app. 2 yrs only and then things were stable. VERY concerned now since I have recurrence and BIlateral LE but just to say..

    we are all different,.

    Dont look down the ' forever road' just yet! One day at a time.

    Hugs

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited January 2020

    Thank you MinusTwo and Purple32 for your insightful replies. I truly needed to hear the encouragement as the PT was so very blunt, it kinda knocked me down. My brain is struggling with trying to "live my life" and not let anything interfere and knowing if I do progress because of the trip, I will be so mad at myself. I know I can wear compression during the flight but am wondering if I would need to wear the whole trip due to staying at such a high elevation.

    MinusTwo- the Sydney bra looks so very comfortable. For me, I am wondering if the unadjustable straps may be an issue. I am only 5'1" and short waisted so I always have that issue. But if it truly is that comfortable, may be worth having it altered to fit.

    Purple32- thinking of you with this new diagnosis and hoping for a great outcome and no progression of your LE.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2020

    Polkadot, when you're traveling you want to put on compression before you leave the house (you'll be lugging suitcases, after all) and plan to keep it on for an hour or two after you arrive. Our bodies eventually adjust to new elevations, but we have to give them a bit of time. Then do the same on the return trip.

    As for being mad at yourself if there is progression, please do plan NOT to beat yourself up. Progression can happen because of something as minor as a mosquito bite, or it can not happen when we most expect it to. You've done your research, prepared well and made good choices here, and you simply can't regret them later, no matter what.

    Now, go have a wonderful time!

    Purple, you're in my thoughts!

    Gentle hugs,
    Binney

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited January 2020

    I received my compression sleeve in the mail and I have to think this is not how it is supposed to fit. The fitter at the medical supply said I needed a size 1 and they didn't have that size in stock so she ordered for me. It does fit most all of my arm but is very tight at the top of my arm and looking at the stepup/speakout site, it doesn't look like it is supposed to. I wore for about 10 minutes before I wanted it off so bad and my arm was tingling a lot afterwards. Can someone tell me how a well fitted sleeve feels? I know it is supposed to be tight but I also know that it being too tight can be problematic as well. i am running out of time to get one before I fly so i am thinking of just ordering a size 2 online through Amazon. is there a specific brand you would recommend? I am also experimenting with wearing a recovery bra/vest I had from breast surgery and also with a long-lined snug bralette for truncal compression. So far the bralette is working better as I have been wearing at night too and woke up with much less swelling under my arm today. I know I will need the heavy duty vest for flying but am at least happy i found something fairly comfortable to wear while i sort all of this out. Thank you again for all your invaluable advice!!!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2020

    PolkaDot - Great that you have a working vest.

    My favorite sleeve is Jobst Bella lite. They may be available at local Medical Supply stores. I've also used Juzo and Mediven. Armsleeves come in 3 compression levels, 15-20, 20-30, and 30-40mmHg.

    In addition to compression, it's important to get the right length. As you no doubt experienced, there are 5 specific measurement points, in addition to length.

    Brightlife has reasonable prices. I've heard LympheDivas is helpful on the phone.

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited January 2020

    Thanks MinusTwo- I was actually looking at the Jobst Bella lite and the Juzo. The one i received was Mediven and apparently the sizing for each varies a fair amount based on what I am seeing in the size charts. It looks like I would still be a size 1 in Jobst and Juzo. But then again, according to the size chart, I am a 1 in Mediven. I just know I will be so relieved to at least get this part all sorted out and feel like I have a plan.

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  • S3K5
    S3K5 Member Posts: 606
    edited January 2020

    Polkadot1, based on the description of your arm sleeves, it seems like the compression is a little too much. I had started with the lowest (15-20 mm) and moved on to 20-30 mm after I got radiation. Now I wear these sleeves on my right arm everyday and take it off at night. While traveling I keep it all the time.

    I like Juzo brand, their material is silky and smooth. Not uncomfortable at all. You may want to check with a local pharmacy where you can try and buy. My insurance allows me to order 2 sleeves at a time. So I always have a spare.

    Hope you can get the right kind of arm sleeves. Please don't cancel your trip. Lymphedema is scary but also easily manageable.

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited February 2020

    Happy Friday! I wanted to thank you all for all the positive and encouraging responses. I wore my vest and sleeve/gauntlet and went on my trip and all went just fine! I was able to get re-fitted with my sleeve and while I will never think it is "comfortable", it is doable. I have been going to LE therapy sessions and learning how to do manual drainage and exercises so that has been very helpful. Now, here is the rub...I went to my follow up with my BS who i absolutely love and have a wonderful rapport with, and she is insistent that I do NOT have lymphedema. She examined me very thoroughly, even did an ultrasound and said 'you absolutely do not have lymphedema'. She said the numbness I feel is from all the severed nerves in the brachial plexus from my surgery and that it can take a while to heal. So I am not sure what to think at this point. She wanted to know if my MO thought I had LE and I told her that she didn't think so either but sent me to PT/OT at my request. Now i know I am not crazy and I have had a bit of a hard time trying to differentiate if what I am feeling is swelling or numbness or both. It feels 'puffy' to me under my armpit and I know sometimes swelling isn't visible. Although I have been told since I am thin, it should be fairly easy to see. Ugh! The LE therapist this week worked on the area for a very long time, said she thought she felt some cording and it has been very sore since that session but getting better each day. Due to my very high deductible, I am having to pay a LOT for each of these sessions but I feel they are important. Even the BS said she felt the therapy sessions are still a good idea regardless.

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  • PiperKay
    PiperKay Member Posts: 173
    edited February 2020

    Polkadot1, I feel for you! Your latest post makes me think you and I have experienced very similar things and I'm about 7 months ahead of you, although I do think I have lymphedema, at least a mild case of it so far. I too have had numbness in the brachial plexus area, still do, as well as a feeling of puffiness under my arm and armpit, none of which has disappeared although it has improved quite a bit since the end of radiation. For a while I had some truncal edema, but that's effectively gone now. I've been told that radiation can exacerabate all the side effects of the other treatments like surgery and will take quite a long time to heal. "The gift that keeps on giving!" Cording was also an issue, though that has completely gone away.

    So keep a close watch on all those symptoms, but as others have said, don't look at anything as "forever," and take things one day at a time.


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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    PolkaDot - so glad your vacation was good.

    My BS and my PS assured me I did NOT have LE the first time around after BMX. I took myself to a Wound Care specialist doctor - and yes, I did have mild truncal & breast LE. I learned MLD and got some gloves.

    After my ALND surgery on the right side, all the surgeons were still saying pooh-pooh. My MO said maybe but unlikely. The RO was the one who caught it and sent me to a trained LEPT. Even though no one had done baseline measurements, she was able to compare with the other side and it was quite obvious.

    I'll try to find the speech by the Stanford doc who explains that most MDs get about 15 minutes of lectures about LE in 7-10 years of medical school. So: a) they truly don't know and b) they don't want to believe their cutting could have caused the problem

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2020

    PolkaDot

    Here's the speech by Stanley Rockson at Stanford I understand that this was 2012, but some really good points. If you have time, it's worth watching the whole thing.

    Look at minute 3 - "Vast preponderance of people receiving a medical degree ...learn about the lymphatic system for under an hour and often less than 15 minutes."

    There are more current things, but this is such a great overview.

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  • Polkadot1
    Polkadot1 Member Posts: 60
    edited February 2020

    PiperKay- yes, we certainly have had a similar experience and it truly is the gift that keeps on giving. I am so very thankful to have come this far and that it has not been worse, but just when you think you're turning the corner into 'normalcy', something else sets you back a bit.

    MinusTwo- thank you for the informative video. You would certainly think that when BS and MO's see breast cancer patients all day long every day, they would have more expertise just from experience alone. That is what makes it so hard to understand. I am still considering seeing the specialist in our area that you so kindly gave to me.

    HelloMyNamels- Thank you for the encouragement. This forum is awesome for support and I truly appreciate it. It is wonderful that your insurance covers your treatments. Mine covers everything at 100% once my deductible is met. Unfortunately we have a high deductible plan but I am still thankful for the coverage we have.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2020

    And here's the latest - I posted on a couple of LE threads, but wanted to share this info here also since one major hospital is saying we are no longer at risk with blood draws. Pooh Pooh.

    Here's the latest seminar posted on line from Dr. Stanley Rockson at Stanford. It's an hour & 30 minutes - but I thought really worth it - even the questions at the end.

    https://stanfordhealthcare.org/medical-clinics/center-lymphatic-venous-disorders.html/presentation-mode/stanford-health-care-now/health-library-videos/rockson-lymphedema-treatments

    And here's a short summary. Long, but shorter than watching the seminar/lecture if you decide it doesn't apply to you.

    5/30/18 talk at Stanford - Center for lymphatic & venous disorders
    Diagnosis, treatment & research
    Dr. Stanley Rockson is a guru -Only half doz other docs in the US. You may have seen him on NPR

    Still true - 1/2 the docs in North America have between 15-30 minutes of their entire medical training.
    Fascinating new research since the last seminar online in 2012. But scary what as he tells what most docs will say if you go to them with problems.
    Most important to PRESERVE working lymph movement which will PREVENT progression
    ANY injury to the skin - cut, burn, insect bite, rose thorn, small scratch. ANYTHING that traumatizes the skin and needs a wound healing response can bring on LE. Including pressure changes in an airline. And he talks about locations over 5000 ft.

    10 million people in the US have LE. 90 million world wide
    With breast cancer - chances 15-20% of developing LE
    90% of the problems develop in the first year but risk never goes away.
    So after 2 years, you probably have 2% for the rest of your life. How much you want to work on preservation & prevention depends on how much a gambler you are???
    If you get past that 1st year, statistics show you may not be prone to be pushed over the edge to progression.
    But if you're in the 1% - do you want to take that chance???

    With only 1-4 nodes (like SNB) you have only 1/4 of the risk - but you can get LE with only ONE node out
    You have to determine what you are willing to risk.
    Yes are finite risks with surgery on parts at risk - even if LE is dormant or sub-clinical. Weigh the benefits. Even carpal tunnel surgery

    New bio-impedance surveillance - if treat REALLY early, can reverse the problem
    Coming - Biobridge implant at time of breast surgery

    AND FINALLY... here's the link to the lymphatic network. Select 'resource downloads' on the right for TONS of facts.

    https://lymphaticnetwork.org/





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