GRRRRRRRRR I HATE LE..........
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Pray for me today ladies - I got up early (3am) to put in 6 hours of computer work, then off to the "Jungle" play-area with grandsons and granddaughter (another tradition started for granddaughter) - then a lunch with all before taking granddaughter to daddy's home for the last time before she is flown home to mommy - then a 3.5 hour drive home alone...Its going to be a long day.. I am wearing all my swell pads and sleeve today..
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Ooh, long and rough!
Prayers and hugs,
Binney0 -
Questions, questions, questions.
My dad pulled some strings with some people he knows and I saw an OT today. I had no idea if she was LE trained or certified but I was thankful for a consultation. My head is spinning with information and at this point I am only going to ask two questions.
1. For finger wraps...what kind of gauze is used? She is going to teach me to wrap but I am paranoid, you all. She said for fingers that it is just regular gauze. Is that true? She measured me and there is a 2.5 cm difference in my palms. It's strange because I can still see tendons and veins in that hand. I knew it was in my fingers...didn't know it was so much in my hand.
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2. She mentioned something about a Graston technique? I've never heard of it. Supposedly Michael Phelps had it done on him? Have any of you heard of this? She wants to try a pump to see if that will help.
I am really, really thankful to get to see this lady but I'm scared too. Am I crazy? I see her again on Friday and she will show me how to wrap. I'm just really, really nervous.
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Hi Dawn-Hope,
There are several different brands of gauze that are used for finger wraps. I tried all of the brands that lymphedemaproducts.com sells:
http://www.lymphedemaproducts.com/products/fingerandtoewraps.html
I prefer transelast classic (4 cm, folded in half length wise), over mollelast or ellastomull gauze.
KT's wraps aren't made of "normal" gauze. Compared to standard gauze, KT wraps cost more, but wash better, last longer and don't snag on things, and some people on the forum swear by them. Personally, I found the KT fingerwraps more difficult to put on than gauze wraps because they slip and, once on, they tended to shift more than gauze wraps.
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Dawn-Hope--It's reasonable to be concerned--the stakes are high for us.
1) The Graston technique--DON'T do it! It came up in my CLT class, and it's essentially dragging a hard piece of metal on your skin, the potential to damage lymphatics is high. Gentle myofascial release is fine, but this is really potentially dangerous. We were told NOT to let our clients/patients have it done to them.
Check out their metal instruments: much too aggressive for LE
http://www.grastontechnique.com/
2) Re: pumps--they can be very useful when you've tried everything and need something more. The best, supposedly, is the flexitouch, the other pumps have less chambers and higher pressure and without MLD to prepare the area and move the fluid, a pump can dump fluid at the top of it's area and cause fibrosis, or push fluid into other areas. They're not a panacea, but just another tool, useful for people that aren't controlled well with all the other modalities of CDT. Make sure it's not a high pressure, few chambered pump.
3) Wrapping is good, it's a powerful tool to have--remember, NO pain--it shouldn't hurt, ever. Studies have shown that lower pressure bandages work better than high pressure. When I wrap, I build up compression with more layers. I put on the short stretch bandages with just enough tension to lay them flat--not a lot of pull. In my CLT course, they taught a 3 bandage arm bandage, and pulled it tight, and it hurt. I use more bandages, and it's actually comfortable. So, if it hurts, less tension on the bandage.
4) Hand wrap with gauze: there are two products out there, essentially equal, elastomull and transelast and you fold them in half and wrap your fingers, leaving the palm open.
" alt="" border="" hspace="" vspace="" width="" height="" align="" /> Also, Nitocris put up a great link for bandaging--remember, everyone does it a bit differently.
I couldn't copy the link, with the new improved format, so I bumped the thread--Hat's Off to Those Who Wrap.
http://community.breastcancer.org/forum/64/topic/786016?page=6#idx_168
Look, my fitter moved an hour away, and I'll travel to her, because I won't try someone new....The stakes are high, so we question a new person's approach, rightfully so--I'd really advise to refuse the Gaston technique.
Kira
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Kira - I hear you loud and clear. Thank you.
So...i'm still confused...if I understand you both correctly the finger wrap is NOT normal gauze?0 -
Hi all,
I have a question about Kinesio tape. My therapist has been using it on small areas of my arm to help direct the fluid out of the area. It seems to help. Once I'm finished with therapy I want to be able to keep using the tape. Any suggestions on a good place to buy it?
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Hi all, I am dead tired - but got home.... My GOOD arm is swollen and aches..
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My good arm hurts too.What is that all about?
Do we have to worry about this now?
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Kira - I'm trying hard to get to see the therapist that helped me so much a couple of years ago...it is proving to be impossible.
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Dawn-Hope, a good therapist is a literal lifeline.
Hand wraps tend to be done with a special gauze that has elastic properties: it's made in Germany by two companies, and they essentially make the same product, and one calls it transelast, and the other elastomull.
Here's the gauze page from lymphedemaproducts
http://www.lymphedemaproducts.com/products/fingerandtoewraps.html
It is gauze, but kind of special and not the kind that you can buy at the local drugstore (typical, expensive LE....)
You know I went to FIVE LE therapists--4 PT's and 1 OT--and all had issues. My current, wonderful LE therapist is a massage therapist, and I thank my lucky stars that I found her. The five other women I saw had some good advice and some bad advice, a couple were horrid and one started off good and then got completely weird. Adventures in LE land--they were horrible. I had my great LE therapist, but she didn't know how to treat my cording and I kept going on these scary appointments, and the final woman was okay. I tried to reach the last woman recently, and she's moved on. Arghh.
We need good therapists and there's no mechanism to guarantee quality.
I took the CLT course, and looked around the room at my classmates and only a couple were experienced enough to just start to practice, and do a good job, the others had a steep learning curve ahead of them, and I hope they care enough to learn what they're going to need to know to be good therapists. 135 hours is a good starting point, but it's just a start, IMO.
Kira
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Kira - I understand now. Thank you.
This LE road is something. To say "I hate it" is just too tame.0 -
kira,
What did they say in your CLT class about using Kinesio tape?
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Granny - Binney told me earlier that if your good arm is swollen - and you move everything to the good axillary lymph you might need to "remap" where you move the fluid - Move it down instead of across - I see my LE T today and will ask him for a new "map"
. Its been a long week with granddaughter and an emotional one being I know I won't see her again until next summer...I was good though - I didn't cry when I hugged her goodbye... Just fell apart all the way home on my lonely drive... I think that might have something to do with fluid too.. Now to get back into my routine with 2 swollen arms and can't find my sleeve
I know I ripped it off when I got home - was very cranky and tired - Have no clue where I put it and its dark (3:30am) don't want to disturb DH..0 -
There were PTs who had taken courses in it, not for LE,and they supported it,the instructor knew little about it.
This PT I worked with a lot, she took a course in Kinesio, really likes it, but has a big scar on her clavicle where her learning partner put too much stretch on the tape and tore her skin.
So, in the basic CLT class, it's not addressed, you have to take a Kinesio class.0 -
Maybe a silly question - If my good arm is swelling - besides the "remapping," do I need a sleeve for that arm too?0
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Good question!
See what your therapist says. Maybe see what happens with just some "remapping." Sometimes, even without LE, we do swell, for any number of reasons. Our hands swell after a snowball fight as our fingers thaw out, or our feet swell on a long plane trip. Maybe this is just a normal reaction to 17 record-breaking trips down the log ride -- but we won't know that, because nobody's ever done it before!
Keep us posted!
Binney0 -
Thanks Binney - It was fun - I think I got enough exercise for the whole month in one day!
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Why am I in such a funk today!!! Just seem angry and frustrated at everything! Both arms feel like crap and I need to work until 12:30
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Day after vacation funk + swelly and uncomfortable arms is no fun. Treat yourself well, do things to soothe the emotional side (chocolate, music, funny movie, reading, whatever helps put you in a better place). You deserve it, as you have just survived your first big vacation with LE. Keep drinking that water, do some deep breathing and extra MLD or Lebed. It will calm down. So frustrating, I hear you and know it well. Big hugs and brownies for you!
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Tina - just reading what you said made me start crying - I can't be in this mood when I need to have a meeting with our new boarder to set ground rules... I'm just ready to chew her up one side and down the other... but she has been helping us with housework and everything.. there is really no reason to chew her up..
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Just returned from my LE therapist - it was my first visit post MX. She is wonderful. She's a massage therapist so insurance does not cover but since I booked so many followup appts she gives a big discount! It only costs me $10 more than a my co-pay to see PT! Yeah. She really cares about LE and enjoys working with LE patients. I gotta make sure she finishes that last course to get certified. She has done wonders for me already.
Feeling good two days after surgery, LE arm is happy right now, life is good.
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Ohio, I wondered how your arm was doing post surgey. A bunch of sessions for only $10 more than a copay? Wow, that is terrific. Good for you for taking advantage. Wishing you a speedy recovery!
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Ohio4me, get well quickly! It sounds like you found a great LE therapist. They real are worth their weight in gold.
Gma, sorry your arms are bothering you. Hope you feel better soon too!
Great advice Tina! I'm going for some chocolate right now.
Kira, ...her skin tore off from the Kinesio tape????? Ouch! Maybe I shouldn't mess with it on my own. I am already challenged to wrap my arm. My therapist watched me as I wrapped and she said it looked and felt good. It just didn't feel 'right' the next time I tried on my own. I haven't got the swing of it yet.
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Back from LE Therapist - We have a reroute with the nodes. He doesn't think it is that shoulder scar but for whatever reason my axilla nodes are toast.. now to remember how to do it - I should of had him write it down :P... He took extra time with me today - I made him late LOL
After wearing the sleeve all the time the last week, my right arm is better.. Went to pick up my other sleeve and gauntlet from the medical supply place and mentioned that to the lady there and she said once you start wearing the sleeve full time, you will have to wear it from now on????? Is this true??? My LE Therapist didn't say that, in fact he wanted me to try only to wear it for work and exercise... I'm not sure what to think about that comment...
Man, everytime I get good news it seems some other person's comment can get me back down..
Lets end on a happy note here - try to stomp the sadness out - We were denied for financial aide for my LE Tx BUT I got the bill for payment plan and the bill was only for $781.... It should have been $1800+.. What a surprise!
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Today....for the first time, I ordered from LymphaDivia's a gauntlet.....the service over the phone was good and it is on it's way....they have all kinds of COOL paterns....Have any of you ordered from them.....Liz
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Gma, you sure are good at taking care of things in a hurry--good for you!
Medical supply place people can be very good fitters, but they sure aren't LE therapists. Take it with a grain of salt.
Or a whole shaker full!Hugs,
Binney0 -
sandcastle...I have 2 lymphediva sleeves that I wear with my juzo black custom glove. I like the way they look but they are a little long for my short arms. Everyone loves them when i wear them. Are you just getting a gauntlet or a sleeve too??
Maggie
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Maggie......I am so Happy, that I am hearing from someone who is pleased with them.......I am just getting the gauntlet at this time......I do not wear a sleeve......Last Summer I did go to a Therapist for this....but for me I was not really pleased....they kept me comming and going and my measurments always went down at any time of the time day.....I did not experience pain.....I did ask them about LymphaDivi's but they said they did not like the material it was made out of.....LONG story short they fitted me with a Juzzo sleeve and in about a hour my arm blew up and I had a rash all over my arm....I took it off and it cleared up the next morning.......My Breast Doctor said that if I had not pain to leave it alone....he felt that I had multiple surgeries that disturbed the lymphatic system .... and I have to say for a year it was good....but then we bought a little ShihTzu and after having him for four months...and his weight gain..I did experience some pain...but if I back off and try picking him up with my other arm I am fine.....I will use the gauntlet for weight lifting at the gym 5lbs only which I adhere to and deep breathing all this just keep it in line for me.........if the gauntlet work out I will try the sleeve.......Liz
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Can I still use an ice pack on the back of the neck if I have a Migraine??? I guess I didn't drink enough water yesterday - Really suffering this morning...
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