LE....in neck too

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jennyboog
jennyboog Member Posts: 1,322

I think I'm starting to develop LE, I've had pain since my BMX & ALND but no swelling.  I think I was in the beginning stages of it because this week my wrist has been sore and starting to swell a tiny bit & I think it's going up my neck too.  My PCM said it couldn't do that, she said it would go down the arm not up it but I don't believe her.  I'm so scared to go back to work, I'm a dental hygienist and I don't know if it will affect my hand and holding instruments.  Anyone else having similar issues?  If so, is it just going to get worse? 

Comments

  • kathleen1966
    kathleen1966 Member Posts: 793
    edited September 2011

    Hello Jennyboog,

    I have lyphedema.  It has not gotten worst in the past year but it is good to go see a lymphedema specialist to keep the swelling in check with compression garmets, etc...Why do you feel it is in your neck?  Do you have pain or swelling there?  I suspect it is in my chest as I sometimes have heaviness there.  When I was taught how to do a lymph massage, I did have to massage a part of my neck to get the "flow" going, so I imagine it could back up there.  It seems the surgeons know very little about lymphedema.  The surgeon, oncologist and lymphedema specialist all usually had different ideas about what to lift, when to use my arm, etc....It could get worst if you do not see a specialist to at least have a consultation...

  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    Thanks Kathleen, it's hard to describe but up my arm where my collarbone is feels weird.  It's not a bad pain but a twinge that comes and goes and that side of my neck just feels different.  I have an appt in Oct and plan on talking to the dr then about it and maybe seeing a specialist.

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited September 2011

    Jenny,

    I think the key is to be proactive about it.  Do you have a sleeve and glove, and are you doing MLD.  I think it would help you immensely to schedule an appointment with an LE specialist as soon as possible.  Every once in a while, my wrist or arm will hurt, and I pop on my sleeve for a day or so and it's gone.

    Best of luck to you.

    Bobbie

  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    No Bobbie, I don't have either....I was told after BMX & rads that it would be a possibility and we'd watch and see what happens, so I've not seen a specialist or have anything yet.   I'm glad to know it can be managed by just doing that, hopefully mine will be the sameway.  Thanks so much.

  • Binney4
    Binney4 Member Posts: 8,609
    edited September 2011

    Jenny, with your career you really can't afford to wait-and-see any longer. Any doctor on your team can give you a referral for a lymphedema evaluation, and the quicker you take care of it the easier it will be to manage on-going. Lymphedema is staged, just like breast cancer is, and without treatment it will progress.

    It is possible to develop lymphedema in your neck, but that's really rare. At any rate you definitely want to get that checked out, and a well-trained lymphedema therapist is the the one to help you with it. Here's how to find one near you:
    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Please feel welcome to drop by the "Lymphedema" discussion board here, as there are lots of gals there who can help answer questions.

    Be well!
    Binney

  • pupfoster1
    pupfoster1 Member Posts: 1,484
    edited September 2011

    Jenny,

    You should definitely get fitted for a sleeve.  My insurance paid for mine.  I don't wear it religiously, but I had similar symptoms several months ago. The inside of my lower right arm hurt from the elbow down to the wrist, almost like carpal tunnel I would think.  I put on my sleeve, elevated it a lot when I was watching TV, etc, and it felt MUCH better in a couple days.

    Also you could look in to a good LE masseuse, although I've heard a GOOD one is hard to find (at least around here).  They can help drain some of that built up fluid.

    Take care,

    Sharon

  • Outfield
    Outfield Member Posts: 1,109
    edited September 2011

    Jenny, what your PCM (not sure what tha stands for) told you about not going up the arm just wasn't true for me at all.  If you go over on the lypmedema board and reach much, it's pretty obvious not everybody has the same experience.  So it autmomatically makes me suspicious when I hear "lymphedema never" or "lymphedema always."

     Mine is very well controlled now and I am very active.  It's a pain in the butt, but compared to some fo the bad things that could happen to me this is one I can deal with and move on.

     I think if you have any inkling of concern you should get in to see a LE therapist.  It appears to make a huge difference in how quickly you address the prolblem if you have it.

    Good luck. 

  • jennyboog
    jennyboog Member Posts: 1,322
    edited September 2011

    Thanks everyone, nice to know it possibly can be controled.

    @ outfield....sorry, PCM is primary care manager (Army term) it's my general dr.

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