Brachial plex

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bhd1
bhd1 Member Posts: 3,874
edited June 2014 in Lymphedema

is ribp  related to le ?  If so, how?

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  • Marple
    Marple Member Posts: 19,143
    edited December 2013

    I'm not understanding your question but certainly truncal lymphedema is a reality. 

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited December 2013

    "BP" usually means blood pressure. Radiation Induced Brachial Plexopathy=RIBP however has a special thread pinned near the top of this forum. Looks like it's been running for a few years and Binney posted recently so check it out!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2013

    barb, radiation-induced brachial plexopathy (RIBP) happens when there are overlapping radiation fields and the radiation dosage is high. Fortunately it's rare, especially nowadays with better radiation methods and protocols, though I'd guess there's more of it than is generally acknowledged. It takes a long time to make itself felt, usually several years, and it's very hard to get a diagnosis because doctors are not much aware of it. It's progressive and currently incurable, and it can be (but isn't always) very painful. 

    It's related to LE because the arm becomes useless and dependent (meaning it's unsupported and hangs down), and that inactivity and hanging position causes lymph fluid to accumulate (think: gravity). Managing LE with RIBP is very difficult because there's no muscle activity to pump the fluid out (and because RIBP is already very hard to deal with and requires heroic feats of self-care just to get through the day).

    Until recently Medicare did not recognize the need for therapy to continue if improvement wasn't possible (!), and other insurance companies followed suit, so women with RIBP couldn't continue to get the LE therapy they needed. Completely rotten situation. A recent ruling changed that, but getting the word out about it to therapists and insurance providers (and to women and men with RIBP, who are usually isolated) may be another challenge.

    StepUp-SpeakOut has a page for people with RIBP. It's here:
    http://www.stepup-speakout.org/Radiation_Induced_B...

    I'm not sure if any of that was what you were asking, but I hope it helps!

    Be well,
    Binney

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  • bhd1
    bhd1 Member Posts: 3,874
    edited December 2013

    thanks for your responses

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  • bhd1
    bhd1 Member Posts: 3,874
    edited December 2013

    I have ribp . i had no overlapping rads that i know of .  Could it be from scar. Tissue from rads i yr ago?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited December 2013

    barb, there's radiation-induced bp and trauma-induced bp, and the distinction is important because in some cases if the cause was trauma, that can be "fixed" with surgery. Examples of bp caused by trauma would be a birth injury from getting a shoulder "stuck" during the birthing process, or a motorcycle accident where the biker lands on his shoulder. It could also be a result of surgery trauma. With radiation induced bp there is some indication that gradual build-up of scar tissue on the nerve is the factor that causes the problems.

    RIPB is degenerative; it progresses over time. The usual experience is being several years out before symptoms appear, but I'd guess it's not impossible for initial symptoms to show up after only a year. If you had more than one field of rads, and especially in the area of the neck, then overlap would be a possibility--also if the dosage was unusually high. It might be useful to talk to your rad onc about exactly what treatment you received and how that affected the brachial plexus.

    If you've been diagnosed with RIBP it's really important to have a good LE therapist who can provide careful supervision over time. Controlling the weight of the arm by keeping fluid out of it, and maintaining motion in the arm as long as possible are two ways to preserve the shoulder joint. If your therapist isn't an OT then you can also use the help of a good OT to make the life adjustments that come with living one-handed in a two-handed world. That StepUp-SpeakOut page has some suggestions for finding resources for day-to-day activities. If this is your dominant arm, start now to gain some skills with your other hand. 

    You might have to fight for the proper care for this, but with the new Medicare ruling you should have the ammunition you need to appeal for the services of LE therapist, PT and OT as needed. Tell us how we can help!

    Gentle hugs
    Binney

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