Lymphedema in femur? Need advice, Doc's act ignorant sometimes!!

undecided8

I had a rod put in my femur a little over a year ago. I did fine for about 3 months after the surgery and radiation. Then I developed lymphedema in that leg. After the swelling went down, now I have a big area on my thigh going down into my knee that is Hard as a ROCK and causes me great pain, and causes me to walk with a limp and restricts my mobility even as far as bending my knee. My Dr.'s, all 4 of them just look at me like I have 2 heads and really can't explain why this happened or what to do about it and tell me that lymphedema should NOT be painful? My Orthopedic Oncologist is acting like I shouldn't be in pain at ALL, or still be walking with a limp. He's ordering "gait training" cause he thinks it's mental that I have the limp. I told him it's NOT mental, cause it hurts when I bear full weight on it. Any suggestions? Or has anyone's lymphedema turned REALLY hard like that under the skin after the swelling went down? Thanks!!

 Suzy

Suzybelle

Hi, Suzy - another Suzy here!

I have LE and I do have a hard spot in my arm - when the tissue hardens like that it's called fibrosis.  You can soften the tissue, but it takes work with a LE therapist - and I use these things called 'swell spots' that are like little pillows.  I place them on the hardened area and then wrap.  They do really help.

Don't know if that's what you got - but that's my experience.

kira66715

Suzy, I work in radiation oncology and I've seen lymphedema and fibrosis in limbs with pathologic fractures that received radiation. I agree with Suzy, that this most likely represents fibrosis. You really should be seen by a lymphedema therapist.

Here's a link to a page about lymphedema for health care providers:

http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm 

You will need a referral to a PT/OT who is trained in lymphedema from one of your doctors.

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

Please let us know how you're doing.

Kira 

hymil

I would wish we could assume they have done the obvious, taken xrays, stuck a needle in, biopsy, maybe ultrasound, to exclude the chance of it being caused by infection or the metalwork moving around or the bone splitting down the sides of the metal rod. you could be allergic to the metal...  .broad catergories like infection, inflammation, trauma, neoplasm, chemical malfunction..  but I learned a while back to assume nothing where doctors are concerned, and never let anyone call you nuts (whatever the politically correct  phrase for that is this week) till they exclude every other physical option.  Counselling will not help you if the metal rod bent, durrr..