Genetic mutations predispose to LE

lago

{{{waves to suzybelle}}} I'm doing great hope you are too

kira66715

Outfield, you're so right that it's not just straight mechanics. There is a complex system and abnormal collagen deposition and inflammation--and I don't really understand it all, but it's not just like blocking off the axilla and filling up the arm.

My LE started with bug bites on my forearm, and my hand swelled, and essentially that's still the problem area--the hand--more toward the index finger, and I can see it on the corresponding palm. But, I've had issues on the inner wrist and forearm as well. 

It's so much more than a simple blockage. 

I'd love to get Andrea Cheville to talk more--she's wonderful and makes things so clear. She gave a podcast at LBBC a while back: here's a link to the podcast and transcript

http://www.lbbc.org/Event-Archive/2009-02-20-Lymphedema

Unfortunately, the LE handout from LBBC says to call your doctor if your swelling persists for 3-6 months, so I'm talking to them this week.....

How did I get cast in this role of pain in the butt LE "advocate"? I tell Binney that I'm her evil twin...

Kira

kira66715

From the Andrea Chevile LE transcript:

 when an arm swells-and it may be just in the hand, it
may be very subtle-it's not uncommon for
women simply to have their fingers involved or the
area between the thumb and the index finger either
onthe back or the palmar surface ofthe hand.
Sites that are particularly problematic in
lymphedema are the back ofthe hand; the forward
side, the palmar; the side ofthe forearm that has
the softer skin [that] usually is not sun exposed,
we call it the volar forearm; and the area around
the elbow, on the inner side of the elbow. Very
commonly, those are the first sites where
lymphedema [appears].

There is a serious under-shortage ofphysicians
that are experienced [and] adequately exposed to
lymphedema, so the best thing a woman can do,
if she feels, "Uh-oh. You know, I think this is it.
I think I've got lymphedema,"is to certainly inquire
from her oncologist, her surgeon, her radiation
oncologist, whoever her ongoing breast cancer team
is, "Do you know of a certified therapist, a trained
therapist that I can get to?"
If not, there are resources on the Internet.

She also has a good explanation of the cumulative damage from inflammation, radiation and protein debris that cause the overt swelling to begin.

Kira

crystalphm

I am reading this thread with great interest, my mom has serious leg lymphedema. After my mastectomy my arm felt so heavy I could only rest it, but that has gone away.

I have  questions.

1. At night, I often feel my upper arm is too big for the shirt I am wearing, just the side where lymph nodes were removed. Is this an early sign of Lymphedema. My ring size also went up 1 size, but no one takes this seriously.

2. I have been taught manual lymphatic drainage because the same armpit area swells in the warmer weather, but lately I have noticed little harder nodes ? in the same part of my arm that feels too tight for my shirt. My upper arm.

3. I also feel "nodes" or lumps where my 9 lymph nodes were removed, my BS says it is scar tissue, not to worry....but I do worry. ok, this is not a question, just an "anyone else?"

Suzybelle

Crystal - just noticed your questions - I'm sorry we missed you on this!

 You need to get checked out by an LE therapist.  What you are experiencing sounds like LE to me.  I get little 'hard spots' on my upper arm from time to time that is caused by fibrotic tissue from LE. 

And no offense, but your BS is not going to know nearly as much about LE as a qualified, 'on the ball' LE therapist (and watch out - there's a lot of bad ones out there) who deals with it every day.

Best of luck to you -

S.

Marple

Crystal, I agree with Suzybelle.  It does sound like LE.  Maybe you might cut and paste your post starting a new thread.  Helpful advice will be on it's way. 

kira66715

Crystal, those symptoms sound like a possibility of axillary/arm LE, and it's worth getting an evaluation by a LE therapist.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

There's so much axillary LE out there, and it's denied so often. Good that you know MLD.

Please let us know how you're doing, and as Sharon said, maybe a new thread so others can see it.

Kira 

crystalphm

Thank you for your responses, it helps me so much hearing your thoughts.

Right now my Mom is being treated for LE so I am going down wednesday during her treatment to talk to the therapist. I know she would quickly check out my arm and decide if i need to press for more treatments...

I will start a new thread to get more feedback, but for now, Thank You for getting me on the right path again!

kira66715

Crystal, let us know what the therapist says.

Do you have the link to truncal/axillary LE, there's an article on the page that has good photos to illustrate the swelling in the axilla:

http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

Kira