Not what I wanted to hear

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Lymphedema

So I was pretty hopeful, I was making progress with the antibiotics, and that perhaps the swelling could be completely resolved.

Today I saw the ID doctor who said that he thinks that the remaining swelling is primarily LE and I should go back to LE therapy in January.

We decided I would take the medication for one more month, to see if I could get a little bit better.

The only problem is I was discharged from LE in July, and the head of the department feels I don't have arm LE. Breast LE we alll agree I have. Plus my travel for work schedule is going to make this tough.

Sigh. I am hoping one more month on the antibiotics will do more than expected. I also think I may need to be in LE therapy in a private setting not the hospital.

Over and out!

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited December 2010

    Cookie, weren't you taught manual drainage techniques? You don't have to see a PT for that once you know how to do it yourself. You know your body best. I "forget" to do it until I begin to swell. I have truncal LE. In fact, most insurances only pay for so many sessions and then you would have to pay....

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited December 2010

    cookiegal, even if the head of the dept felt you didn't have arm LE in July, if you present with swelling & no infection in Jan, she just might change the dx.

    However it plays out (private or hospital) I hope you get the help you need.

    All the best.

    |Leah

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited December 2010

    Cookie, I'm sorry.  LE can be so hard simply because it does take so much time and effort to treat. 

    Do you wrap your arm at night? That has made the biggest difference in my arm and keeping the swelling down.  If I don't wrap every night (it's really 6 days a week - I usually take a night off each week) then my arm gets huge, and it happens pretty quickly.

    When I've had major flare-ups (like from cellulitis - blech) I have gone back to the LE therapist for 4-6 weeks one time a week, then I'm on my own.  It seems to work really well.

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2010

    I am still not supposed to MLD or compress ARM until January....as per infection protocol.

    I am allowed to MLD and compress breast. Infact I was told to compress breast 24/7 which has been a bit tough.

    My PS feels this is a bad idea and could be making the arm worse!!

    Have a good weekend!!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited December 2010

    Oh, Cookie, what a long haul and whose advice are you supposed to follow?

    Kira

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