Started therapy again this week..interesting results

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

Hi all...today was my third day of LE therapy. Some up and down results.

Last week I tried wearing the "tradititional" sleeve 6 hours a day. My upper arm got smaller but all my lower arm measurements got larger. 

After one day in the silver wave bi-lat sleeve, all my lowers got better but my upper got larger.

They have been teaching me how to wrap. This kind of freaks me out in the "OMG I'm a mummy" aspect, but I am also concerned that the fluid could be pushed down, or I will have rebound swelling or something.

So the good news: The assistant LE feels we are on a good path with the silverwave sleeve, and she is beginning to lean against wrapping. Today my upper was just .2 CM larger than my good arm, although my good arm is my dominant arm.

I really really need to find a glove to go with the silverwave sleeve.

I also got one of the lymphedema sleeve co one arm sleeves, but while it's nicely made it seems too tight on the upper and too loose on the lower. The silverwave is the one sleeve that seems to fit my arm shape.

The big decision is since my swelling gets better when I sleep, should I wear anything at night at all.

People at work seem to have gotten used to me wearing the sleeve and glove so that's good.

Hugs to all!!!!!

(PS Cookie Monster on Top Chef Tomorrow!!!! Cooooookieeee!)

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Cookie, you are definitely an "interesting" woman! Usually a good thing, but in this case -- don't you wish you were just routine?Undecided So sorry about all the guesswork and ups-and-downs, but so glad you have good help with it now and aren't going it alone anymore. Do please keep us abreast of your adventure. Because, doggone it, it IS interesting!

    Hugs, more prayers,
    Binney

    (PS -- rats! now I'll have the refrain of "Cookie, cookie, cookie starts with C!" running through my brain all morningTongue out.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, it's kind of sick/sad, but I kind of like wrapping--it feels comfortable to me, and in some weird way "safe"--but, that said--if I see my LE therapist and she wraps me during the day, I don't venture out. I wrap at night, because it's the best way to control my hand, and it's really helped after the fracture, and I wish the process was a bit less time consuming, but the results are good.

    You will keep everyone on their toes.

    I asked my LE therapist about lipoedema of the arm, as I'm more familar with the leg, and she says it has a classic distribution of the upper and lower arm, and stops at the wrist, and is tough to treat.

    No one said you were easy, just fascinating.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

     This may be TMI.

    So since 1/20 all of my numbers on the upper arm trend down....but the lower arm trends up.

    Third from the top has gone from 38.4 to 35 since 1/20/11

    One of my lowers has gone from 22.4 to 24.5 to 23.7

    Overall 7 measurements have gone down....8 have gone up

    ((The top 6 are now smaller than my good arm!!))

    Now the last three measurments were done by the assistant, so maybe different techniques?

    Just this week...8 have gone down...three have stayed the same....one (the hand) has gotten bigger.

    So one possibility.....a few hours of compression is good.....too many hours of compression is bad.

    Or the scary possibility....

    My upper arm is getting smaller because I have fat there and I have lost weight....my hand and wrist are getting a little larger because of

    a.rebound swelling?

    B.progression of lymphedema?

    C. sleeve pushing fluid down?

    (My hand numbers do ping back about an hour after I take off my sleeve/glove)

     Is it possible that I should just lose weight and do MLD and maybe wear a glove/ wrap on just myhand?

    I also wonder if the problem could be the isotoner glove is not enough to counter the 15/21 sleeve.

    Have I compromised the isotoner gloves by cutting off the fingers? 

    DID YOU KNOW in Germany they have lymphedema clinics where you stay and they wrap and massage you two times a day??????

    Thanks for caring!!!!!!!!!!

    I don't have LE again until monday. We are supposed to try Kineseo tape.

    Hugs to all.....

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, my LE therapist worked with Robert Lerner MD and Guenter Klose in NYC when they had a clinic modeled after the Foldi Clinic and they wrapped twice a day, and spent all day in treatement--they didn't sleep at the clinic, but it was intensive.

    I think you need a "real" glove--the isotoner is an inexpensive glove, but it's compression isn't gradient or even known. And, fluid takes the path of least resistance--and believe me, you don't want it in the hand. 

    I have issues with compression trapping fluid in my hand, and although I wrap every night, I wear day time compression as needed. It's just me. Every one is different--and you are unique.

    Trial and error, and then what you need will become clearer.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    Any suggestions on the real glove...I do have a real gauntlet...but the fit is akward. I will ask LE on Monday....but I wouldn't mind getting something going soon.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, I personally like the medi 95 gloves, and the fitter I use, who gets me custom Juzo gloves, likes them too. Juzo gloves are nice also--not the new cheap one, but the older ones--healastic or whatever they're calling them now, but they have weird sizing--absolute numbers, no range.

    I don't like the mediven 550 gloves--but I do like the medi 95 gloves.

    Ideally, it would be great to try some on, with a good fitter, but they rarely stock them all.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    Ok....so I am going to an othopedic supply company to be measured for a glove today. They don't stock medi....but bandages plus does. I have my measurments...but I fall close inbetween. And boo...they do not take insurance.

    Wish me luck. Will try for juzo helastic

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, when you find a glove you like, if you're not going to submit through insurance, I usually google the glove, and I find that brightlifedirect.com or nulifemedical are the cheapest. Brightlife has a 30 day return policy--full refund. Bandages plus is expensive and they don't permit returns.

    On the medi 95  I am between a ll(2) and lll (3) and luckily got to try on both, and prefered the 3. 

    In the Juzo, I'm between a 1 and 2, and again I went with the bigger size, and I do have a Juzo custom--they just tried for a new custom, and the hand was great, but the wrist/forearm part was HUGE--the fitter just sighed, as she re-took my measurements, traced the outline of the old and new glove and sent it back..

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    OMG glove fitting was a disaster.....the people were really odd and kind of nasty to me. (And this is in a small town not NYC)

    But to top things off, while I was at the place, I got a call that the LE assistants husband died and all my appointments are cancelled next week.

    Yikes!

    Maybe I should just wear two isotoners.

    The glove I tried on was very uncomfortable. It was a juzo.

    Have a great weekend all!!!!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011
    http://www.bandagesplus.com/cms/img/spaw/SC-Medi-Glove-BP(1).jpg
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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    I am 15-18...right on the border.....would you go up or down...I am leaning towards up.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, I personally go up--I wear a medi 95, Class 1, size 3--I did try the size 2 and found it too tight. The size chart just showed up for me: I'm around 15 cm at the wrist and 18 at the palm, so I went up. Everyone is different though.

    I buy them from Brightlifedirect.com, because they ship fast and have a full refund, 30 day policy.

    They're 127 at Brightlife, but ask if there's a first time discount:

    http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/p1960/Medi-95-Glove-20-30mmHg-w/Compressive-Fingers/product_info.html

    You can find them a bit cheaper at Nulifemedical, but their return policy isn't as good, and until you figure out what works, best to be able to return--$119

    http://www.nulifemedical.com/store/pc/Medi-95-Glove-20-30mmHg-527p1700.htm

    What is with the fitters at the place you went?? I did once try on gloves at a compression store where the guy knew legs, but not arms/hands at all, and we tried the Jobst glove (didn't like it) and I think the Juzo glove, and he wasn't mean, but he wasn't helpful. 

    If you're between sizes, and up for the hassle of returning, you can order both at Brightlifedirect and return the one you don't like.

    What a pain. Is there another store you can try?

    Kira

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited February 2011

    Oh for Pete's sake, Cookie.

    How have I missed this entire thread?

    You really are exceptional.

    I've known that for quite some time!!!!!!

    Just wanted you to know that I'm at least a tad bit caught up on your journey and am sending you tons of encourgement.

    ++++++Remember: marathon, not sprint!

    Cheering for you!

    I have now officially lost just a tad over 15 poinds since my BILAT a year ago. I do believe that some of my chest/arm-pit LE issues are more tolerable now...... or perhaps I've just moved to a new stage of grief over the whole enchilada.

    In any case, I believe in you!

    You'll sort this out, figure it out, find the right resource, do the research -- whatever it takes.

    Cuz, you're one Smart Cookie!!

    Read the small print: bite sized lessons!! One bite at a time!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    Thanks for all of the advice and cheering.

    Actually It had been suggested I go someplace else, but it was an hour away, and this place was on the way to work, and I really thought that for a glove, not a sleeve it would be no big deal.

    In the end they were sort of ok, but they gave me huge attitude up front.

    I have no idea what happens next since they cancelled week two of my three weeks of therapy!!!

    The good news is I love the silverwave sleeve!! It seems like 6 hours a day is about right. I also have it for exercise and labor. I think (on me) the little wiggles do a lot.

    Cheers!!! Thanks for the cookie nostalgia FAITH, glad to hear you are doing well.

    And KIRA ....we are wrist hand twins!!!!!! So that is very helpful information!!

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited February 2011

    gosh Cookie, dearest, I read quickly and saw the word "labor"

    my brain thought I'd missed a HUGE announcement and nine months of posts........

    i suppose ya mean, as in hard work?

    xx00xx00xx

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Cookie, we are wrist/hand twinsCool

    And Faith--I LOVE the illustration, just love it!

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    Yes....as in lifting and carrying labor!

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  • flash
    flash Member Posts: 1,685
    edited February 2011

    cookie- glad to see some progress on a solution.

    faith!!!!!!!!!!- so glad to see you on this thread.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    I'm kind of frustrated that all of my appointments are cancelled for this week. I was finally making progress, and I am just not all that great at doing MLD. My impression is that they will not be rescheduled.

    The assistant told me that if she was gone, my original therapist would take over, but now they are telling me nothing.

    sigh

    Overall, I am beginning to feel like this is managable. If it doesn't get a lot worse I can live with it.

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  • lago
    lago Member Posts: 17,186
    edited February 2011

     sorry cookiegal you are having so many issues. Love the image of cookiegal

    I too have heard brightlifedirect.com has the best prices from my LE PE and my mom who has been buying for her legs since I was a kid.

    The place that fit me for my gloves/sleeve initially is clueless. The sleeves were too short. I was right on the border so that means go up. The glove fingers are too short. My LE MD says it's not a big deal because I really don't need the glove… guantlet would be fine. It just angers me that this place is located a couple floors down from my treatment center and this is where my BS sent me… and they don't know what the F* their doing. I will be getting a guantlet in the future. 

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    Lago maybe we should trade. I can't wear a gauntlet...my fingers are odd shaped little pudgies.

    I just spoke to the booker at the hospital. The tiny silver lining is I will get to work with my original theapist while the assistant (who is a nice lady) is out on leave. They will make the appointments up to me, they hope.

    It's just that the LE is the only PT for the whole hospital!

    OY. This is playing havoc with my schedule. I postponed a class I teach untill after this was over, now I will have to push it back again.

    I also feel so selfish that I am all me me me, when a very nice lady lost her husband. 

    We were supposed to start kineseo tape today, I was very hopeful.

    Oh well.

    I am getting shockingly good at typing wearing an isotoner with no fingers cut out!!!!

    Doubling up on the isotoners seemed to work yesterday.

    Peace love and cookies!!

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    nothing to report....no sessions...I hope the sleeve is doing it's thing. I hopethe cancellation does not hurt the course of the treatment.

    Have a great weekend!!! 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Me too, Cookie! Rooting for you -- elevate, deep breaths, slow fist pumps. Keep us posted, and be well,
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited February 2011

    thanks binney!!

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited February 2011

    Hey sweet Cookie.

    Just wanted you to know I thought of you. Twas presenting at a teacher's Children Literature conference today and the author/illustrator from the picture above has another book called, "Sweet Cookie" or something to that effect. I couldn't whip out my camera so boldly as I did in the book store the first picture I snatched.

    Cute as a button illustration on the cover again. So I was already thinking of you today!!!!

    It was a 12 hour day before coming home to babysit for my darling, rambuncious 3 grand-kiddos 4 and under.......... let's just say that I've truly over-spent my battery pack today. LOVED every minute of it and twill sleep like a rock I'm hoping. Sometimes I over-exhaust myself & then have a hard time w the sleep.

    Anyhow, hugs, dearie.

    xx00xx00xx

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Hi all....I am going to get taped today with the kineseo tape!

    Still dealing with bad back injury I got leaving the hospital on Monday.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Still waiting for my glove to arrive.  Kineseo tape on arm. Interesting.

    Back is healing, what a nightmare. At one point I could only crawl, and I am thinking don't put weight on your arm.

    The moral of the story...don't rush from LE to work if you are going to end up having an accident.

    Hubby was very sweet and gave up two days of work to care for me!!

    Have a fabulous weekend one and all!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Cookie, what happened to your back???? Did you fall?

    So glad your DH is a good caretaker. And you're on the mend. 

    I just saw my ENT for an annual check up and he was telling me how he wiped out twice in the ice we had earlier this week. My hand ached in sympathy.

    Kira

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    Green Sequin Gauntlets!!!!

    I was kind of bummed about wearing my sleeve and glove in the St. Patrick's day parade, and I went to the mall to get a green hat and they had Green Sparkly Gauntlets....so I can put them over my glove and look totally normal!!!!!

     In other news....

    The accident was so frustrating I was rushing from LE to work, I decided to back out of my parking space and slammed into a low island divider. I think the problem was that I was going backwards. I even did it twice. By the next day I could not stand.

    Here is the bright side....I am 80 percent better 4 days later. 

    Do you know how long it's been since I have had something heal in a normal time frame?

    I was the slowest healer ever after surgery, then I developed shoulder problems that went on for months and I still deal with, and then mystery infection for 6 months, and then LE, and on and on.

    It is actually kind of exciting to know at least part of my body can bounce back. 

    Glove News

    I never got to go back to the mean orthopedic place so I bought the medi 95 glove online. The wrist and hand fit well, the tops of the fingers are a little loose. I also have on kineso tape, and it's tricky to put a glove over the tape.

    So here is the big question. Should I even be wearing a sleeve and glove over kineseo tape???? 

    I am really wanting the tape to work since being bandaged all day for several weeks is problematic.

    So anyhow, I am actually in a pretty good mood tonight. I hope all y'all have a great weekend and have some good green cookies in the days ahead!

     

     

     

     

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2011

    I feel a bit more emotional and frustrated about this whole thing than ususal.

    How do you all handle formal occasions?

    I have an event tuesday, do I decline the kineseo tape tomorrow so I can wear a dress?

    Or do I just hide it all under a suit?

    With the tape I really need to wear the glove for cover.

    Sigh.

    I guess if my measurements are good tomorrow, that means the tape is working and I should keep it up.

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