GRRRRRRRRR I HATE LE..........

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? 

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

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?  

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

http://www.brightlifedirect.com/BRAND-Farrow-Medical/c354_451/p2385/Farrow-Microfine-Compression-Glove-20-30mmHg/product_reviews.html

Hands are tough, and often, less is more.

Kira

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. .



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.

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. 

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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

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?

My good arm hurts too.What is that all about?

Do we have to worry about this now?

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

kira,

What did they say in your CLT class about using Kinesio tape? 

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.

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!
Binney

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

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..