Have sleeve/gauntlet questions

My sleeve goes over the wrist bones and the glove goes over the sleeve. Are you wearing your gauntlet over the sleeve?  Right now my lymphedema is manageable so I only wear the compression gear if I am flying, lifting or doing something strenuous such as using a weed wacker or involving repetitive motion such as painting or if I sense that I will have a problem.  I can usually tell when something isn't right.  (An ache or hint of swelling). 

Amoc, hello,

When I take off my garments in the evening I do have some indentations on the underside of my wrist from using my hand all day. I do try to keep my hand in a neutral position rather than bent when I think of it, but I sure don't hesitate to use it. I think because of the tightness these would leave ridge-y things on anyone, LE or no. So the question really is, is there swelling there, or just plain old skin glad to be loose from the confines of these goofy garments? If it's only bumpy and not swollen (sore, irritated, heavy-feeling achy), then it's probably okay.

Then again, my sleeves and gloves are custom, and the company I use makes the glove to go over the sleeve without adding a lot of compression. Definitely worth having your fitter (or therapist) check the fit for you. Let us know what you discover.

Hugs,
Binney

Amoc- I wear my sleeve/gauntlet 7 days a week from 6am-9pm. The rule of thumb i was given by my OT is if you have a bra on put your sleeve/gauntlet on when you take your bra off they come off as well. 

I didn't have any issues with swelling when i started using the compression sleeves. They did tend to help.  As of a month ago my swelling has gone done almost 8% since start of therapy in March. As long as you are wearing the garments correctly all should be fine.

Amoc- I've been told that the Juzo brand is better than the Lymphadivas because it does compress better. How often are you going in for treatments?

Well, I think the therapist is kind of not doing all she can do here:



Lots of studies show we don't do a great job of self MLD, and if your forearm is holding fluid, and you described it so well, wearing poorly fitting compression and doing self MLD with a month follow up just may not move that fluid out, a d the longer it stays, the more inflammation it causes.



I think lymphdivas sleeves are pretty, but I'd only use them in stable people. Juzo is a better fabric, IMO.



The Nicole Stout protocol was widely accepted as truth when published, but it's a very flawed study. No control arm. Done only on women immediately post op who are expected to swell and many resolve on their own.



I'm similar to you in that I don't have big volume increases, but swell in my hand and forearm, and for a while, when the forearm was acting up, I was always checking the inside tendons to judge it.



Maybe try her MLD massage and see if she moves the fluid out of there.



Do you swell at night? If you do, then wrapping is an essential tool to have in your tool kit for home management.

Just want to clarify about LANA: LANA is a written exam, it was created about 10 years ago to try and weed out the weekend warrior therapists and untrained therapists, but unfortunately, in recent years, as the almost $400 test doesn't confer any benefit as far as reimbursement or recognition by the APTA, very few therapists are taking it. Very few.

In the last year, in an effort to make LANA something that trained therapists will take, they've dropped the requirement that you need 135 hours of training AND a year of experience, as most people were not doing well on the anatomy and physiology questions, but did fine on the management questions.

So, if a therapist sits for the LANA exam, it shows that they care, but it's no guarantee of high clinical excellence, and the LANA board refuses to "police" LANA certified therapists or investigate concerns.

I am eligible to sit for the exam, and haven't....My LE therapist was one the first LANA certified therapists, as she's an LMT and insurance doesn't "recognize" her qualifications--on PT/OT and PTA/OTA can get reimbursed. Not MD/RN/LMT

But, enough about LANA

Amoc--as I read your other post, you are in the midst of treatment--a time of high risk to your lymphatics--the taxols are tough on them, and so is radiation--both acutely and chronically with the scar tissue. This is a time where you need your lymphatic system supported. IMO.

I also swelled before radiation, and someone told me it would get better after rads, and I clung to that, not realizing the damage that radiation does (I subsequently worked in a radiation oncology facility for 3 years and got a real education about the details, my RO was in major denial, to the point she said that radiation never causes LE (???), and wrote in her note "Patient reports lymphedema, no swelling noted." She never examined my arm/hand, and I was in treatment.....)

I have an amazing LE therapist and she's an LMT who is highly trained, and I pay for her out of pocket, but I see her every 2 weeks, and before my recent hysterectomy she took my leg measurements, and follows those along with my arm measurements.

She was personally trained by Guenter Klose and then Vodder trained, and she's a firm believer in bandaging.

When I worked in radiation oncology, I found so many LE therapists are pushed for time, and get either complacent or feel that patients are unable to handle being active participants in their care, and far too many would do the old PT/OT approach of 6 weeks and out.

Your therapist should meet your needs, and right now, you need more attention. Just my opinion.

Kira

Amoc, great rad onc, I would just suggest that since you have the wrist swelling that you meet with her, have her check the fit of the garments and do some MLD to move out the fluid.

She thought you were in great shape and didn't need to see you for a month, and she doesn't know about the wrist swelling, so I'd advise letting her know and having her see you and re-assess.

Sounds like you're in good hands. You just need to keep her in the loop and what she's suggesting is a good idea, but clearly it's not working as planned right now.

Kira