GRRRRRRRRR I HATE LE..........
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Dawne--I am so sorry for what you are going through. Like Binney I wish we could get together and talk and cry together. Keep at it though. No one in this country should have to go without medical treatment and they should not be humiliated just because they need it.
GMA--Good luck on the ride! Enjoy it to the fullest.
Becky
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Kareenie, I returned a Juzo off the shelf to a fitter after having it for a week. I just washed it and returned it. That thumb thing is so common, I get it also with my custom Juzo. The fitter did adjust the gloves for a wider thumb, but it happens. And I've heard about another person who it happens to also.
Dawne--it really adds insult to injury. The health care system in the country is so broken--everyone should have basic coverage. So many of the women on these boards get the coverage for "just" breast cancer, but you know, even when active treatment ends, we still are in treatment. It's arbitrary to cut it off.
I'm currently working for a community health center, and what I can do is so often limited by finances. What I do a lot, is send patients to the local hospital to qualify for free care--and then they can get all the tests and services at that hospital. Perhaps a hospital near you has that program--I think they all have to.
And please don't ever, ever think you're some kind of second class citizen for not having coverage. It's a system failure.
Personally, with losing my last job, I'm now on my husband's coverage, and it has not been a smooth transition, and I call blue cross like every day to try and work out the glitches. And they're still not worked out....And my fury is out of proportion to the problem, but I think it all goes with the breast cancer/LE territory.
Kira
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Jo - A sent you a PM with a local massage therapist for LE. All cash/check - no insurance but she is good. She will work with you on pricing if you need multiple visits. You may just want to go once a month. I went Monday and she was fabulous - she is not certified yet but working on it. Lots of exp with breast cancer - I'm digging up the dollars to go to her.
I 'hear' there is a therapist at Barberton that is going to LE training, but help will be a long time away. Barberton (Anna Dean) does have a good PT assistant that may be able to help but it's hard getting a PT to evaluate so she can treat.
Aultman is also in the early stages of starting an LE program - a long time away.
Mercy has some LE trained therapists - but I didn't try them out. They are only in Mondays and turn you over to an assistant (not certified either).
Akron General is supposed to have a CLT - prob out of network but fight the insurance!
Talked with a friend in Pittsburgh and there are many options there, also a Cleveland Clinic LE clinic in Boardman. Haven't checked out either - I'm staying with massage therapist for now. If it gets 'bad' I will probably head to Pittsburgh where I know someone who can give a personal referral.
I'm trying to get my family doc more educated since he president of state society next year. Maybe we need to start an LE support group and start picketing!
PS - you are Canton area, right?
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Hi Everybody,I thought about starting a general 'how can you tell if you are getting good treatment thread?" and then realized that this thread essentially already does that!I'm being proactive about getting LE treatment. I saw one therapist for cording and she also did MLD. We messed around with sleeves and gauntlets. The gauntlet caused my hand to swell, as did an Isotoner therapeutic gloves, so I know I'm sensitive to compression.Due to insurance issues, I have to switch LE therapists, so I went through all of the 'find a therapist' threads and found a certified LE therapist; but LE is so individual, there doesn't seem to be a set treatment that works, and being a newbie, it's hard to tell whether I'm getting proper treatment or not. So I'm hoping you guys can help with a few questions.I am currently scheduled to see her twice a week for 45 minutes. Is this enough?Once they discover a data point (such as being compression sensitive,) are there best-practice next steps one should expect, or is it more a 'throw things at the wall to see what sticks' process? To use the compression sensitive example: My LE put kinesio tape on at the first visit, and the swelling did go down in my hand. She didn't want to re-apply the tape immediately, however, because my skin had some red spots when she removed the tape and she wanted to let it recover. So she wrapped my fingers and hand with very light gauze tape, and covered that with a light tubular elastic bandage that has foam on the top half. I think this is also working, but it's far more of a pain in the butt, as the gauze bandages tend to curl up and get lumpy under the tube, and the tube is itchy where the foam is.I also wonder if the gold standard treatment is CDT, shouldn't they be starting with that? I have asked, and both therapists have said they don't think it's necessary, and that they think this swelling is minimal and probably related to the radiation treatments, which finished on the 10th. I don't know if this answer should be setting off my bullsh*t meter or not--I lack so much context here, and I don't know what follow-up questions I should ask.Should I be getting lessons in MLD? I am getting PT exercises and deep breathing exercises, and got a sheet of paper explaining the basics of MLD.Apologies for the ramble!0
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Jo - one hour is $80. A lot of money but there isn't anyone else! I have a call into her now to schedule multiple appointments through end of August (post surgery stuff) so will find out what her adjusted price is.
But - even if you once a month $80 isn't bad. My co-pay is $40.00 so it's a wash. Once I get the surgery done I plan to see her monthly.
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Well Ladies lets add to the GRRRRRRRRRRR - What I would do for an $80 appt. Mine are $300 and tried to get financial aide through the hospital... I just got the denial letter.... I owe $2800 for this month.... They are letting us have payments of $60/ month to pay it off. Not having insurance sucks... but my DH says he doesn't mind paying for things that actually help (LET and Pain Management).
Why do you have to get those stupid letters when you are trying to enjoy yourself with your grandkids :-P
Note to self - don't take a breather from your sleeve and try to put it back on when you are hot a sweaty... My arm is swelling again elevate and water here I come!
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Hello sistas especially Kira and Binney....I kinda went a little crazy with this LE...I read over 40 pages from the begining of this thread...i want to tell you that BOTH OF YOU TOLD ME I HAD LE NOT EDEMA that a stupid LANA P/T told me i had...as I read the messages all the ladies told me i was so set on this moron who swore i had edema.now im goin to the real thing.when she asked me to bring in to her all my bras she told me i didnt even have the right compression bra.it was a bra that comes after surgery.even the fitter did the wrong thing.now i gotta start from the beg.new fitter,new bras,kinesio tape along with this padding at night.
I finally realized all therapists are not created equal.
I am still with a mild case of LE but now im being treated right.Thank you for all the wonderful advice you gave me last year..Im doin the MLD exercises and she gave me a pully to put on the door and do exercises too.i go three times a week for only God knows how long.....thanks again...sorry i didnt listen to you the first time...
Once again I want to remind the sistas how much info you share with all of us.Bless you.hugggs K
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GmaFoley - I'm with you on the $80 appointments. I'd be so thankful.
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But it does all add up and it is hard...for all of us.
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Ok, this is weird.
Last week my hand swelled up after lifting some heavy dumbbells up the stairs to my condo. I was able to show my LET the swollen hand. There was a 2 centimeter consistent difference between right and left arms. I've been doing my MLD daily, but I have not had any swelling in a week.
Is there such a thing as intermittent lymphedema?
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Nibbana, You can have "a flair" and then no swelling for awhile. have no clue if it would go away that fast..
Edit: Off to Enchanted Forest tomorrow - pray nothing bad happens (swelling a bit but in my sleeve) and I can go down the log ride with her!!! I have 4 more days with my gd. We are heading to Daddy's after Enchanted Forest then a sleep over at her cousin's house, then I will be coming home tuesday.
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Hildy--no one answered your question.
LE treatment can vary, depending on the individual's needs: if you don't have a huge volume increase, then "classic CDT"--where you're wrapped 24/7 to decrease volume likely isn't necessary.
We need the tools to manage this at home, and it might include being taught how to wrap, and it sounds like your therapist is being wise to avoid an adhesive reaction to the kinesio tape.
Most of my swelling is in my hand, and for a while, I kind of lived in gauze hand wraps, because gloves weren't helping much.
We need the tools: MLD, therapeutic exercise, how to wrap, effective compression garments to keep this under control, and LE therapists do vary SO much.
Are you comfortable with this new one?
Kira
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Jo, if no redness or other symptoms, try gently starting self-MLD, but I'd stay off the pump for awhile until you see how the MLD goes. With self-MLD you can feel the skin and control the pressure and pace better.
I was thinking the same thing about your insurance--if there IS no specialist that you need on your plan, surely they have to go outside it to meet your needs. When I've had to do that I've specified the one I wanted to see and always got them, so if you know the name of the one you want be up front about it with them.
Keep us posted!
Binney0 -
Rockym, back to a topic we had going a few days ago--I had hoped to receive my Allegro sleeve/gauntlet combo before today, so I could try it out before leaving on vacation tomorrow. It did not arrive yet, so I'll see it in about a week. Then I'll post my observations about the length and fit.0
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Granddaughter and I broke the record! - 17 times down the log ride - to bed and more elevation, water and prayer... I broke out in a rash under my breast - No swelling other than what I had - sleeve survived without getting wet.. will let you know how I really faired when I try to get up tomorrow morning.. Must say - I got my exercise going out the exit and going back up hill to the entrance...17 times LOL...0
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You go, GmaFoley!
Leah
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Brava, Gma! Way to go! Hope you wake up nothing but happy
.Hugs and high-fives,
Binney0 -
Binney - I am happy to see my Granddaughter so Happy - overall I'm doing ok - a little rash still under breast, both hands puffy, and a little ache in the right upper arm.. I get to go watch son play flag football this evening(its the last time GD gets to watch Daddy Play), so elevation and water until then...
Question: I have had a few surgeries over the years - left shoulder for one.. since I have started MLD for the right side LE, the LE therapist and I have noticed the left upper arm is bigger too... We are starting to think the shoulder surgery is blocking the fluid - how do I go around that to make the arm swelling go down on my GOOD side? I must be doing something wrong??? We just discovered the difference last week. but I am noticing it more today...
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Gma, when you do your self-MLD, do you move the fluid from your right side to the left axilla, or downward to the groin? If you're using your left axilla and you're discovering the left arm is swelling (or the left hand, as you mention above), your therapist will make a new MLD pattern for you that moves fluid to the lymph nodes in the groin and/or the neck/shoulder.
You're not actually doing anything WRONG--you're doing what your therapist taught you, which was completely reasonable until you discovered the left-arm swelling. Now you just need a detour. You can continue to do the node clearing part of the MLD, but talk to your therapist again before trying to move fluid to the left axilla. Unfortunately, when we develop LE on the affected side after bc treatment, it's possible our lymphatic system isn't super-effective anywhere else either, so previous injuries or trauma in other parts of our bodies can come into play.
LE's just nasty! But you'll get this back under control, just hang in there.
Keep an eye on the rash. If it spreads, feels hot to the touch, if you have fever or flu-like symptoms, or if swelling in the area increases, get help at once. Don't wait until you can reach your doctor. You know the drill!
At the moment, though, it sure sounds like a heat rash, possibly exacerbated by all that rocky riding! Rest up and treasure your record-breaking glory!
Hugs,
Binney0 -
GmaFoley - After my initial LE diagnosis and treatment on right side of trunk, I later developed slight swelling on my non-sentinel node side. Once that happened, therapist switched strategies and now drains each side down to inguinal nodes. My non-sentinel node side swelling receded and never got worse, but I treat it with care and do MLD there every so often. The wearing of a compression tank kept that area from ever swelling further, and only under the worst circumstances does it slightly bother me. Just couldn't take the extra lymph load. The mastectomy and implant probably created extra scar tissue, or, as Binney says, my lymphatics might not have been too efficient to begin with. However, with the mast on that side I did lose some nodes even without sentinel being done.
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We all have sooo much to learn about this well kept secret of LE...
It seems like ever day something or someone comes up with something new and different.
Our Drs.need an education...Big time!!!!
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Trying to do my computer work at son's house with just one 15" computer screen - this will be a challenge for 2 days :-P can't wait to get back to my 24" screen - When you have 8 screens open to try to edit press releases... need I say more... both arms are a bit swollen today - so much for breast LE LOL... Encouragement ladies!!!! What I do to spend a few more days with my beautiful 11 year old granddaughter...0
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Jo-5 with reference to your insurance issue, try using the words "Gap exception" and see if that gets you anywhere. If there is no specialist in your network I think they have to let you go outside the network. I had to do that for my LE sleeve.
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Kira, thank you so much for responding, it sounds as if I am heading down a similar path to yours in that I tend to have mostly hand swelling as well. I do like this new therapist. (I like the other one, too--I think most of my concerns were baseless and due to the fact that I just don't know what to look for in a good LE therapist. Insurance is the real driver behind the switch at this point.
My handis going down; the LE therapist isalternating the kinesio tape with the gauze wrap/elasti-tube with foam on top treatment; both have worked thus far. I'm curious about something called cowrap that I've heard is also good for hand.
I've also developed a couple little nodules on my tendons in the affected hand that are another LE SE. Has anybody run across them before?
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hi giuys, i've not been here for a long time, because i've been too sick to move most days..
the problems have mounted, and i was in the hosp for 4 days.. bladder, headed to the kidney, with lots of comoplications. had to have IV drugs.. and i made a big mistake. i had it in the "good arm" thank Goodness, no reactions yet, but after 3 1/2 days it went bad..
so,they won't do a foot iv, cuase im diabetic, and they won't the adjunct jugular on me bc of ms.. so, its a central line, next time...
have any of yu had one?? tell me the truth, how bad are they?? for now, the hospital didn't want to deal with me, so sent me home with keflex.. it has its own problems lol..
im expecting to end up there again, so want to get themREAL DEAL from ANY OF YOU sorry who have had this before...
thanks, 3jays
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3jays mom--I hope you're on the mend. I've never had a central line, but hopefully women who have, will weigh in. There is a risk with central lines of serious infection, verus a localized infection from a peripheral line. Sometimes, you weight the risks, and decide to use your bad arm.
Hildy--is is Coban that they're thinking of using? it's a relatively firm wrap, the original coban has latex in it, it can be useful for finger swelling. It's made by 3M and they also make "vet wrap" for horses that is kind of simiilar, and they're marketing a new coban that is to be used to wrap a limb.
When I first got LE and was wrapping and using gloves, I got a couple of little nodules on boney prominences, and they went away ultimately. I think it's from chafing.
Are you getting gloves soon? I tried a bunch, and my favorites are off the shelf medi 95 and custom Juzo.
Kira
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{{{3jays}}} never had a central line so no advice just support to you here.
I have been lazy lately with my MLD. Not really sure why. Perhaps just mentally taking a break from all of this. I also have not been wearing my nighttime thingy. Sleep so much better without it. I have started back at my Zumba and wear my sleeve and glove there. Today the arm is a bit heavy and sore so may have that night thing on tonight. SIGH! I do wear my sleeve and glove everyday to work just not when at home relaxing. My PS thinks that it may be helped once I get the DIEP done. She explained so much during our consult that really made sense. Hope she is right. How could we get thru the stinking treatments so well and be left to deal with this daily?? GRRRRRRRRR
Maggie
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Well, the LE therapist mentioned both cowrap and coban. she showed me the former, it looked like this:
http://us.hartmann.info/co_wrap.php
I like the thought of it, but they are proceeding cautiously as my hand doesn't seem to like compression. That Isotoner theraupeytic glove made it swell up.
I'm not sure about other gloves--do you have to have reached some level of stability to get gloves ordered?
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Hand swelling up. Going to get some sleeve/gauntlets Wednesday. Have no idea what to expect.
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Hildy, that cowrap looks really interesting. It's hard to get a glove if you're compression sensitive, but not impossible. It's trial and error. Some people like the farrow glove
Hands are tough, and often, less is more.
Kira
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