LE sleeves

lauralu

I went and had my arms measured for sleeves a couple of weeks ago. I went to pick them up and they did not fit properly. She remeasured and the size was smaller??? She asked if I had some therapy done and I had not.

Going for physio today for LE. 

lauralu

I did not have nodes removed under the arms. My Dr tells me that even though that was not done there are other nodes in the breast area that effect the lymphatic system.And possilbe damage to the nodes in the axillia area  I had Bi lateral mastectomies. It sure would be great news if I did not have Lymphedema.

The lady that fitted me for the sleeves was not able to use off the self sleeves.

I am unsure why?

Binney4

Wow, Laura, I'm impressed with your doctor for being on top of that information. Actually there are several of us here with lymphedema after prophylactic mastectomy with no nodes purposely removed. So, great idea to be taking precautions early.

Like you, I'm really hoping you're not dealing with lymphedema, and we'll be looking forward to what your lymphedma therapist has to say today.

With lymphedema garments the fit is critical. Off-the-shelf sleeves are approximations that fit a wide range of women with "average" arms. If your upper arm is larger than average, or the wrist smaller, or any number of other variations, it can be difficult to fit correctly without having the custom made. Here's a page about making sure the fit is correct:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htm

Always get some kind of hand protection when you're wearing a sleeve, either a glove or a gauntlet (fingerless glove). Here's a brief explanation of why that's important:
http://lymphedivas.com/lymphedema/gauntletandsleeve/

Do let us know what you discover today! Gentle hugs,
Binney

lauralu

Binney

Yes,, it is lymphedema. I of course was hoping that it was not.. Fortunately it is not really bad.

I do know that I have to be careful.

 They are going to show me self massage techniques for the whole body. So that makes me feel better that I know for sure.

kira66715

Lauralu,

I'm sorry you joined the "swell sisterhood", but you figured it out early, have a great doctor who acknowledged it and sent you for treatment, and it sounds like you're well on the way to getting it under control.

Your lymphedema therapist should be able to help guide the fitter to getting you properly fitting compression for your arm and hand.

Let us know how we can help.

Kira

lauralu

Thanks Kira

lizzyk

Hello all. My first time to postl. Was recently diagnosed 3/15/11 and, lucky me, Stage IV from the get go.  To add insult to injury I also now have LE.  Funny thing is, I have not had surgery or radiation, been on Femara since Mid March.  I have had some therapy for my LE and am waiting for a voucher from a local Cancer Support Agency for my compression garment.  I'm wondering, if I have LE and haven't had surgery yet, what's going to happen when/if I do have surgery????

duckyb1

Was approved today to go to a Board Certified LE specialist.........had to fight like hell, but I won the battle....................I was advised by my RO to only use someone Board Certified in LE, because if just any PT does it and they don't know what their doing, they can cause more harm then good.

Have an appt. June 2nd, can't wait to get this thing underway.........got it very early, so I'm hoping for a good result, but who the hell knows.  They also told me if I make my LE appt. right after Rads there will be only 1 co-pay instead of 2 since I'm in the same hospital.

KS1

Lizzyk, I am so very sorry to hear this.  What a horrible double blow.   -- KS1

Binney4

Lizzy, welcome!

I'm sorry about your reason for being here, but so glad you found us! I hope you'll find lots of support and information here, as I have.

There are guidelines for surgery on an area with lymphedema here:
http://www.stepup-speakout.org/Medical_Care_lymphedema.htm#GUIDELINES_FOR_SURGERY

It helps a lot if your doctor will agree to consult with your lymphedema therapist so they can coordinate your pre- and post-op care. You'll want your lymphedema to be in the best possible control going in, so knowing how to do self-MLD and self-wrapping will be especially helpful. The women here who have had surgery with controlled lymphedema have not had problems regaining control afterward, and with the use of prophylactic antibiotics they haven't had infection problems either.

Good for you for getting prompt help with the lymphedema. That will make it easier to manage on-going. Please tell us how we can help.

Gentle hug,
Binney 

Binney4

Ah, Ducky! What great news! Good for you! And it sounds like your RO is on the ball, too -- you're so fortunate in that. ("Board certified" is not quite the right term, as there is no LE board -- but there IS a licensing organization called the Lymphology Association of North America, or LANA, that assures that a therapist has sufficient hours of training and a has mastered the basic knowledge. A therapist with LANA certification has the letters CLT-LANA after their name).

We'll be anxious to hear how it goes! In the meantime, elevate, stay well hydrated, and take gentle care of your arm. Looking forward with you to getting everything under control, as well as the skills you need to keep it that way!

Brava!
Binney