possible LE situation - a couple questions...

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Anonymous
Anonymous Member Posts: 1,376
edited June 2014 in Lymphedema

Hi -I was hoping to get some insight on my situation.  For the past week or so I noticed a 'feeling' in my pinky, It kind of ached and my hand felt unusual, kind of heavy...I took a look at my knuckles and the pinky one looks a "tad" bigger than my other hand.  That palm also feels softer/squishier than my other hand.  My mom has terrible LE and I understand the struggle well enough to be aware of my own hand. My hand isn't always feeling like this, maybe I've noticed it 3 or 4 times in the past 10 days..I am a healthy woman, thin build - I was given the clearance after surgery to resume activities, like the gym. I have used light weights only.I am 3 1/2months out from BMX.

I am headed for my exchange surgery on Monday and am now worried about exacerbating the situation.  I do not know if this is even LE, but I want to take precautions, just in case.  I will make all the requests about blood pressure cuff,  etc, but will that really matter since they are going to be performing surgery on my breasts anyway?  I have not seen my surgeon to have my arm measured post-bmx, I have an appt in 2 weeks. I am a part of a LE study at MGH and so I see a specialist who will follow me.  She took all my measurments prior to BMX and I will inquire with her 

Another question - has anyone come across info about LE and inheriting a pre-disposition?  I would be curious to know about this.  

Thanks in advance for any input!

~Megan

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Megan, there is a genetic predisposition to lymphedema, but there are also individual factors--your mother likely had very different treatment than you've had.

    It's good that you're paying attention to these subtle changes in your hand.

    If you're at MGH, you have been measured with perometry--which unfortunately, doesn't do a great job with hands, but you have the ability to access Jean O"Tool in the PT department, and she's amazing.

    Can you call your surgeon and ask to have an urgent evaluation by one of the MGH LE therapists?

    That way you'll have some questions answered.

    And MGH is supposed to be joining the genetic study soon--not that it will answer indiviidual questions, but likely give us more of sense of the importance of genetics and LE.

    I hope you get seen soon, and get some answers.

    Kira

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Kira - thank you so very much for your reply.  I will take your advice and see if I can have a eval prior to surgery Monday.  I'm scheduled for a 2:30 surgery, so maybe someone could see me prior?  I'll look into it.  I will look for Jean O'Tool for a later consult, too - thank you for a name to go on! 

    I am worried about undergoing surgery Monday and "if" this is mild LE, having it flare up.  My mom's experience with LE is much more extreme, it plagues her tremendously.  She has broken the LE arm twice in 2 years and has had to undergo surgery both times (at MGH) because the bones will not heal, she has titanium plates in an effort to have her bones adhere to it.  Also to note, she had a full node dissection, where I did not.  Living in a sling for two years straight has been a challenge and I definitley have a "fear" of LE due to her issues.

    I am going to keep my eyes open for the genetics & LE study, I'd love to get involved in that one!

    Thank you again, Kira - I will definitley keep you posted!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Megan, if it's too close to surgery, perhaps they can at least get you a post-op eval: I realized I spelled Jean's name wrong: it's Jean O'Toole, she's this amazing PT who runs the lymphedema treatment at MGH, and is so good.

    http://www.mghphysicaltherapy.org/provider_info.htm

    Your poor mom--I fractured my LE hand this fall, and it didn't do it any favors. After 6 weeks in the cast, I'm about 3 months out of the cast, and returning to some kind of "normal"--and I found that the immobility was a definite problem--so the sling isn't helping her. Maybe she could get some help from the PT's at MGH for her LE? 

    If you don't get in pre-op--just don't let them touch that arm with blood pressures, IV"s, blood draws--protect it. And it's amazing how even in a great hospital, you need to push the issue sometimes.

    Good luck tomorrow. Let us know how it goes.

    Kira

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011
    Megan, you'll be in our thoughts tomorrow. Hope it's all smooth sailing!Smile
    Gentle hugs,
    Binney
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Kira - YES, I will plan to have my arm protected from all of the blood pressures, etc...and I think by the time I get in to MGH I'll just proceed to surgery check-in, I live about 90 minutes away and don't think I could swing an early "pop-in" for LE measurement.  

    ...my mom is doing her best to go w/out the sling now, but both breaks were above the elbow and bones kept sliding around and it had to be stabilized,  it was such an eyeopener to the aftermath LE can have on your life.  She's had it pretty bad for 12 or so yrs, but these breaks almost put her over the edge!  Things are getting better and the plates are doing their job, so hopefully she'll keep moving forward.

    Kira & Binney, thank you for your supprt and checking in - I appreciate it so much!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Fire-dancer,

      Wishing you all the best tomorrow. 

      I live near Boston also, and I'm so impressed with MGH's approach to LE--they check for it and treat it and study it. You're in great hands.

       It must be so hard to have your mother struggle with the breaks and LE--hoping she's on the mend, and it will improve.

       Let us know how it goes.

    Kira

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    Hi Kira & Binney - everything went great with the exchange.  I explained my situation with the minor swelling and the IV prick was done in my other hand.  I wasn't thrilled abot it, but considering the amount of surgery I was having, I guess an IV wouldn't have made a difference, if my hand is going to change, I'll still be noticing it early.  I will be going to MGH next week and will see if I can get in for a LE meaurment.

    Thanks again for your support and input - I greatly appreciated it and will be in touch when I hear something more.

    Take care,

    Megan

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011
    Hey, hey! Nice having all that in your rearview mirror!Cool Thanks for letting us know. Onward!
    Binney
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  • KS1
    KS1 Member Posts: 632
    edited March 2011

    With respect to injections, I know one shouldn't give injections in the LE-affected arm or even in the upper trunk on the affected side, but is it ok to get injections from the rib-cage down on one's LE side?  Some folks have to give themselves regular subcutaneous injections (e.g. heparin or insulin) or IM injections (like lupron or zoladex) and losing a whole side, is losing a lot of potential injection sites.... KS

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011
    KS, that's an interesting question. Below the waist is outside of the affected quadrant, so that still leaves a lot of sites on lower abdomen and hips. And of course legs are still fine on that side. You're right, it leaves out a lot of otherwise good sites, but it's not a deal-breaker, I wouldn't think. Our adult daughter has had diabetes since infancy, so fibrosis has become a problem in some areas after all these years, but even so she still has enough to rotate sites adequately. There are a lot of areas we can use, even with one quadrant out of commission.
    Binney
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